Matthew Fraser MND Charitable Trust

This update is not really about me...

This month’s update is not really about me, but more about how this disease impacts people around me and extended family.  We had an extended family incident recently that really hit home how, apart from the obvious impact on us, also rang true to stories I had heard before from others over the years.

I often think are we being too precious or just looking inwards at ourselves too much.... but when you read similar stories, it makes me realize that this is something almost everybody goes through.   

I don’t want to hang our dirty laundry out for all to see (I wanted to, but maybe best I don’t stir the hornet’s nest!).... but felt strongly enough that perhaps others might like to help by sharing their experiences.  I believe that although this might not happen to you at least if you have ALS/MND in your family... you can prepare for this and maybe discuss openly.

 

I posted the following message across various MND chat sites and emailed a few directly. The response was fast and comments swift... ‘that is one big topic’

 

My message was:

I've got a question for everybody and would love to hear back. As you all know no one really has any idea on how stressful living with MND can be for not only the person but also the Partner on so many levels. I know that I’m not unique that often extended family or friends just don’t understand and often fallouts and fighting starts... if only they could appreciate the enormity of it all, perhaps people would react differently, with more compassion and less about their own ego.

 

This has spurred me to write about this very topic on my blog, but also include anonymous stories from others. I known others who have had similar stories... so I’m sure many of you could contribute. I think people recently diagnosed could prepare for this type of situation, if just knowing that it may happen.

 

 I appreciate that also some extended families do amazing things, but sometimes it just goes very wrong.

 

 

The responses and stories can be categorized into three separate headings... Partner stress, friends and families. Because of some stories length ... I have put them into PDF documents you just click to read.

 

1.   Partner stress.

We have always been aware of this and so decided early on to have carers look after me and reduce the potential of any problems. It’s not a perfect system and comes with its own set of issues, but has worked for us.

 

Click here to see what others have said

 

2.   Friends.

This is another big topic, but in reality I often think ‘what would I do’... and it’s probably the same as everyone else. Stay away. But it does make me really appreciate those that make the effort; I know it can be difficult.   

I like this quote from a PALS...

 

"A sad reality is many friends do not cross the bridge to disability with the individual," Jayne said in an email. Patients "become increasingly isolated. Technology and the cyber world levels the playing field and reconnects us."

 

3.   Families

This was the area I got the biggest response. ‘Wow, That is a massive and very complex area to tackle. You certainly get to see how different people deal with things. I guess from my perspective with alot of things in life i think if you can try and "walk a mile in the other persons shoes" and see things from their perspective it can help alot in understanding and being better able to support.

I think sometimes people (friends and family etc) who aren't "in it" day in and day out sometimes expect the partner to be a miracle worker and never complain or be angry or laugh at the crazy things that can happen but we need to remember that they are going through loss and change to and need just as much support as the person with MND. It is so important that couples get to still be couples.’(MND fieldworker, South Island, New Zealand).

 

Click here to see what others have said

 

 

The impact of this kind of additional stress is quite devastating. Zara developed a chest infection and Ashma and finally complete exhaustion taking hold (5 ½ years of living with MND finally catching up). I will never forget the children’s faces as their mother collapsed on the sofa, it was heartbreaking to watch (even though Margot went to get her doctors kit!)...and to be stuck in this body, helpless to do anything even as simple as a cuddle. I got the children busy getting blankets and feeding the dog etc... My carer arrived and helped with children while Zara was sent to bed. It was a rough week with my carers and mum going that extra mile while Zara continued battling on. Thankfully her friends rallied around and sent her away to a caring friend in a warm destination and others took our children into their families for five nights. I kept the same routine but had my father sleepover and my brother came down for the weekend. It worked very well and Zara was returned to her old self. Thank you to everyone who helped.

 

My hope from this posting is that it creates more discussion for everyone learning to live with MND.  For me personally, I tried to get the person to see and understand the situation but was only met with another attack and ‘don’t lecture me ‘... so what can you do!

 

.. and now something completely different... ME!!

 

Botox.

Fuck. Fuck. Fuck. Fuck. Fuck. Fuck.  Sorry about that but it conveys perfectly my feelings. I decided it was time to try Botox in my saliva glands to reduce dribbling.  It comes with some risks... may affect speech (not a problem), swallowing due to dryness (or so I thought) or no effect at all.  I had 20mg in each gland... the last one hurt and I felt it right under my tongue.  That was Friday,  by Sunday I couldn’t suck water from my straw and struggling to eat.... somehow it had gotten into my tongue which meant I can’t drink, eat and now saliva is worse as it pools because I can’t move it back.  I must admit I really struggled with this... I can’t move, talk, eat or swallow... I was angry and upset.  All the carers were hastily trained to use the PEG (which up to now only being used at lunch) and we all worked out new systems to cope with the sudden change.  It will be another two months and two weeks until it wears off... I’m hoping at least sucking will return.

 

 

 

 

 

 

twitter my week away.

We have had a slight delay posting this, due to technical issues...

Ever thought to yourself... ‘what does Matt do all day’... ‘how does he occupy himself all day ‘... I know when I was in my early stages, I often wondered what would I do with myself when I couldn’t talk or hardly move... I guess you would say at advanced stages of MND. Given all this and the stress and heart ache MND causes my family, extended family and friends (those that actually make the effort). .. dare I say it, but I’m OK with ‘my lot’ in life... it brings into very sharp focus what is really important.

I decided to give you an insight into my world by running a week long diary, but do it in the style of ‘twitter’. I started it on 17th May and just a normal week... with notes taken through the day...here are ‘my tweets’.

Just click on each day to read each one...

Notes following that week

• The flu has passed with nothing major, just a few sleepless nights of coughing and Zara having to sit me up in the wee small hours to get a good breath.
• We have hired a fantastic carer... in fact 2!!!
• No more sore back!
• That week was the wettest for May... some sunshine today!!
• Smoothie recipe all sorted now!
• I haven’t had McDonalds for two weeks now! (I put that in for my mum, so she knows I’m eating well!!!)

I made it
On Monday with rain and near freezing temperature we all walked to school with Margot for her first day. It was fantastic but very cold. It was my last big goal and one I could never imagined achieving... in fact I now need to make more goals as I didn’t make any past this point.

Moaning
I seem to have developed this annoying sound that I can’t stop... it’s like wind from my breathing passing over my vocal cords... creating short deep ‘mmmm’ or ‘aaaaa’... and as you can imagine all at the wrong times.... like peeing or having my head brushed or just about any time that a small moan is just not appropriate!!!... it’s not like I can say ‘opps, that slipped out!! ... it’s really noticeable when I’m training new carer’s!!

Another operation and hospital visit

Thank you to everyone who made contact congratulating me for my five years. Here’s to another five years!!! It was a lovely surprise seeing that post by Zara.

There have been a few adventures since my last update (01/03/10) and I was getting ready to put them on paper, when on Wednesday (21/4/10)... I was thrown a curve ball, which MND tends to do.
Hospital
Early Wednesday morning I woke up with a pain around my peg area. I thought maybe I had somehow pulled it... and just went back to sleep, not too concerned. But when I was getting into the shower, I could see that the tube was about 2-3cm out from my stomach abnormal with a little blood... Opps! My carer and Zara tried pushing it back, but it wouldn’t budge. We made contact with the hospital and a PEG nurse was sent very quickly... it appeared I had somehow managed to cause quite a bit of ‘trauma’ by busting the balloon that holds it in place within the stomach and yanked it up the shaft. The main problem when this happens is the shaft /stoma/hole... can close up quickly (within a few hours ) and if it doesn’t go back in easily it’s an operation under x-ray guidance. Unfortunately after a few attempts the nurse couldn’t get it back in.... so the nurse made some quick phone calls and we could be slotted in that day for a quick operation... oh joy!!!
We had learnt many lessons last time with the hospital and was better prepared. My lunch carer was dispatched to collect Margot from preschool and ‘super gran’ was called to pick up the kids from school. So with that worry organized we set off for the hospital.
The universe was helping us that day... kids sorted, all green traffic lights on the way to hospital, a car park out the front of the hospital and a fantastic bunch of nurses... everything went quickly and before I knew it, I was waiting outside the operating theater. When you get nervous, excited or cold you lose control of your muscles and they start to spasm quite badly (part of the fun of having MND)... well this time my butt muscles just ‘lost the plot ‘... I hate to think what that looked like from on top of the bed... with my pelvis gyrating! ... and I can’t really explain myself at the time!

The surgery went extremely well, I didn’t need any drugs and everyone was allowed in... Zara was rubbing my head and the nurse gave me a running commentary. The surgeon was a professor... not sure what that means but it he was very efficient and relaxing. They injected die to see the shaft with an x-ray, then poking down a wire, reopened the hole and then pushed down a new peg tube. I did have some local to numb the area, which definitely helped. I got to also watch it on x-ray screen... which was quite cool.

That was that, wheeled back to ward and dressed and of home again. Very surreal. I had little more pain relieve and home by 6pm ready to eat and drink something since my last meal was breakfast. Both Zara and I was exhausted after the adrenaline leaves your body and slept very well. Not really any more pain, just a little tender. All in all, a fantastic experience, but not to be repeated.

We have a soft elastic band (cut up hospital knickers) around the peg that I will wear at night that will hopefully stop from happening again. Because I’m a ‘fatty’ the button PEG (which is a small button instead of a tube) wouldn’t fit but we are trying to find ‘larger’ ones from overseas. Hopefully we can find one and get this tube out of the way.

I’m still only really using the peg for my lunch time smoothie or if we are going out somewhere and only have a small amount of time... I can throw a can of ensure down the peg and away we go. It’s certainly handy to have and infact although my shoulders, neck and arms are almost just bone... I have put on 4kg since November 2009.

Backwards Pee
My wheelchair has been behaving itself this month. But the day I did my last update... I did something very stupid. I was catching a few rays outside and tilt my chair so far back I crushed all the wires. I was stuck reclined in the sun alone and needing to pee. My lunch carer arrives but because he’s new and I couldn’t reach my computer switch to talk ... it just made matters worse. Anyway after about 1hr Zara came home and knew I had to pee.... but how when you’re almost lying backwards! Trust me when I say it was messy but thankfully there were a lot of towels!! Enable arrived and had to short circuit the recline motor and all was good! So now I have experienced peeing upside down!!... what fun I have!! ... I bet you can’t say.. ‘today I attempted to urinate backwards into a bucket ‘!!!

Hoist’s
I have been reluctant to use hoists because my legs are still quite strong and transfers still feel safe. But I had this idea for going to bed... I could try a standing hoist so that I could have a good stretch, stay upright and pee and get wheeled to my bed while standing. Luckily we could try one and my new bed carer had years of experience with hoist’s. it works well... it’s like a windsurfing harness... so I’ll often have a quick sail to bed!! I can recommend giving it a try... when you’re ready.



So after five years, how am I doing?

The following video shows how this month I could actually move my thumb again... which is quite amazing!! I can’t bend it but I can lift it upwards under my control!!!

STOP PRESS (22/03/10)

This is a message for Matt's many friends. He is probably reading it about the same time you are. TODAY it is exactly FIVE YEARS since he was diagnosed with MND and life changed forever. We were given the prognosis. Two to three years. A progressive illness. No miracle drugs. No hope. The statistics of living for more than five years so small they barely register.

Yet here we are five years later with three fantastic children, and life goes on and life goes by. Matt has disabilities that would stop most people in their tracks; he can't walk, lift his arms and hands, move his body. He can't talk. He reaches out via the internet and emails. He now `knows' thousands of people all over the world. He hears every day how much he helps others with MND.

Yet to all who knew Matt one day and five years ago he is still the same. The same things make him laugh. And cry. He still likes food although he can't cook. He now appreciates wines and whisky through friends opinions, but still remembers the pleasures. He still likes new movies and new books and meeting new people. As he puts it - ``I'm still me.''

Anyway this is just a note to celebrate a milestone. If you're in the neighbourhood don't be a stranger. You'll know how much Matt likes to catch up with old friends. If you are in a far-away place share a moment of your day with him. I haven't asked him if he wanted people to know about the milestone, but I'm pretty sure he'll get a kick out of you all knowing.

Zara, also Harriet, Damian and Margot.

Power Chair Football

Power chair football
Yes you read it correctly... I’ve taken up power chair football! It’s very new here so they had a gathering to gauge the level of interest. All kinds of people turned up from young kids up to adults and everything in-between... you can just imagine the chaos as we all chased large colored balls around the gym! No major prangs just a few near misses... especially with me using head controls at full speed. It was brilliant to get the heart and adrenaline flowing! There was one guy who was a speed freak, but I couldn’t work out how he was driving... until I saw it... with his foot!... it was quite frightening and funny at the same time. I’ll post some photos soon... but this something I found on Youtube

(I should say we use larger medicine balls, so tips like this are impossible, I just thought this may make you laugh or cringe in pain)


Bugs
With the warm weather we have been having it’s nice to sit out on the deck or under a tree ’basking in the glory of being me ‘!!!... but when a bug or spider or anything that crawls decide to explore my body ... it sends me into a panic... as I can’t just flick it way... I have to bang around or try to drive my chair over bumps! I’ve had things up my nose, stuck in my eyebrow and even crawl up one arm under my shirt and down the other arm... I even had visions of something laying eggs inside my peg hole!! I sometimes find sunbathing in the hot sun works, but the downside is sunburn... a price I’m willing to endure to stop the bugs! Just as writing this, I have had a tiny money spider all over me... and they are hard to catch and move fast... I’m not sure where it’s gone now!!

Sleeping
I've been a really good sleeper with this disease which I believe helps. But with the PEG going in, things are not that good. Because I sleep best on my side for some time it was an odd feeling with something attached to my stomach. Now I’m waking around 4am most morning’s, not because of any breathing issues but rather a strange set of symptoms. Some nights I’m extremely hot and sweaty or my legs and body have this feeling of pent up energy, that all I want to do is run... which I can’t!!! so instead I toss and turn... which then leads to my feet falling out of bed (and getting stuck ), my body sliding down the bed jamming my feet and my head slipping of my pillow! If I roll onto my back... I’m stuck and breathing does get affected. I’m trying all kinds of things, some with more success than others. The biggest problem is my arms and hands... they get stuck in some very awkward positions... like one finger nail taking the pressure of the hand (I’m not sure how it happens ) and I wake up with a very sore fingernail!! ... Or even bent thumb and fingers all night. I have to use my torso to move my arms.., so lots of grunting and complaining. Maybe when I finally can’t physically move anymore, I will have a whole new set of challenges... yippee!!!

Peg
Last month I had it replaced but we were hoping it would be a nice neat button, which it turns out they don’t make in XL... I’m apparently ‘to large’.... so I had a bog standard one fitted which has loose tubing that conveniently gets caught in everything...
Generally I’m only using it for my lunch time smoothie apart from the times I’m going out and don’t have the time for food... it’s a quick tin of ensure down the PEG and of I go! My food choices are certainly diminishing with many things I just can’t eat anymore... but still doing McDonalds!! Imagine if McDonalds cured ALS/MND... I could be like that Subway guy... giving talks all over the world, about how McDonalds saved my life!!!... mind you, that would mean giving up power chair football!!?

Saliva
I’m actually using the Scopoderm TTS 1.5 patches every day now. A fellow PALS gave me a fantastic suggestion of only using half! Now it works really with no side effects and it seems to last about a week. I’ve put everything into the Tips and Tricks section under saliva.




Also I started back swimming last week, which is just amazing. The good thing is that I still walk in the water... albeit very oddly with feet and toes not always doing what they should do! But I’m back!!! Every PALS should do this!!


One more month till 5 year milestone since diagnoses... I’m going to design myself a certificate!! (and maybe get drunk!!)... we are planning something!

The New Year

I was sitting down (not that I was standing!) getting ready to write an update and thought I should read all of 2009 before I begin ... to my surprise everything I had in my head about my progression had already been said! Fantastic news as it appears not much has changed over the past year... I guess much more subtle changes are going on, that I’m not aware of yet ...no matter what happens I’m thinking 2010 is going to be great year!... as in March I would have made the five year mark (from diagnoses) and of course my 40th in September!!

Our Christmas and New Year was very quiet with some family around and few visitors who were in town... dropped in to say ‘hi’. I was a little saddened about those that didn’t make the effort, but it does make me appreciate the efforts to those that do.... it’s always nice to have visitors, as you can get bogged down in all things MND... it’s good for both sides! It’s nice to hear about other people and their life’s! People often say how they are humbled by the way I’m coping with this disease... but I believe it’s me that is very humbled by those that take the time to come and see me and take time out of their own busy life’s... I often ponder to myself... would I visit me?... would I be frightened?... and often the answer is ‘not today, maybe next time‘.

Our carer’s mostly worked right through the Christmas period which was a big help and certainly kept the stress levels down. We have a really good team who can cover each other’s shifts when needed... which we really appreciate as it makes everything tick along nicely.

Before Christmas we had a Christmas staff party (Pacific Island theme) with their families... it was very successful with good food, unusual punches and some karaoke! ... even a surprise visit of the ice cream van for everybody. It was good for everyone to meet each other, although very odd feeling when they were swapping notes on me!

This year for New Years Eve, I had a plan to not get so depressed like last years... I would just treat it like any other day and go to bed as normal... it worked perfectly until Zara woke me with ‘happy new year‘at midnight!!! Next year should be interesting!

In the last few weeks I have been having a lot of battery problems with my chair running out of juice in the afternoons... then last week I turned a corner in the bathroom and ‘whammo’ broke something that controls everything ... but the government agency that maintains chair, Enable NZ sent someone out (fantastic service)... yippee only stranded for a few hours. Then last Thursday night the chair just ‘died’... so I had to sit in a very uncomfortable lounge chair on Friday, unable to do anything.... luckily it came back at the end of the day... but four days later, same problem and back it goes and same thing, a whole day in the lounge chair... let’s hope nothing else happens. I rely on this chair a lot... more than I realized!!!

I’m trying a new experiment... by putting sea sickness patch (Scopoderm) behind my ear, as the side effects are a dry mouth. My dribbling is getting worse, not because of having more saliva but because my lips and swallowing is weaker... which means when I’m concentrating it kind of slips out... adding to the perception of looking like ‘I’m not all there ‘ and not to mention the wet chin and neck . The patch worked really well... I did feel slightly ‘foggy’ but it certainly worked. They are expensive and worth doing if you’re going out as they only last 72hrs. I’m thinking Botox will be my next step and by all account work very well when injected into the saliva glands!!



Happy New Year everyone!!



Ps
I had the most amazing thing happen last night... I got to feel my face! That sounds so strange... but it must be a few years since I have! My nose was itchy and Zara using my own finger... I was able to scratch (not pick)... then using my hand I was introduced to my face... such a wonderful and odd sensation!

The peg is in!

Well, it was a learning experience... I didn’t realize how my care could be so complex. I just had too much faith in the hospital system. We thought let’s go to the hospital a day early so the staff could familiarize themselves with me and my equipment. We spent a few hours going through everything. The following morning of my operation a sprightly young nurse pops in and says ‘so how does this computer work ‘... puts my computer in my face and expects a miracle... either I start talking or the computer will automatically start reading my mind... which by the way I was yelling .. ‘I need to pee... it’s been 11.5hrs’.
Lesson learnt #1: take your own carer’s and type up key words and routine and stick to your bed, if you can’t talk.


I even heard the ward head nurse say ‘we’re not an IT department, call his wife’. So Zara had to drag all three kids in before school... she took one look at me and said... ‘Has he peed’!!!. So everything we did with the other staff was a waste of time as the information was never passed along. Because of this we missed our operation slot of 8: 30am. Then it was changed from 11: 00am, 1: 00pm then to 3: 00pm... so much for coming in the night before!

Finally the time arrived... I have to say we seem to have a lot of English surgeons and theater staff... it was like a mini NHS. I was getting a little nervous and trying to breath calmly... then Zara started looking nervous... then with tears in her eyes she said ‘this just shouldn’t be happening to you ‘... which set me off... not a good look when being wheeled into surgery! I should point out my operation was different from the video shown. Because of my breathing we would do it differently... my specialist said

‘plan to do radiologically ie from the outside in rather than endoscopically ie from the inside out. This is because your reduced lung function at this point means that IV sedation is relatively contraindicated.’

But they did give me some calming drugs... not sure what it was, but the name of it ended in ‘pan’... maybe it was Peter Pan fairy dust from Tinkerbelle!!... who cares they worked.... I was having a kind of an internal monologue... thinking when are they going to give me something after a long tube was stuck down to my stomach via my nose to inflate my stomach and slowly the volume (in my head) went down... then about 1/2hr (at a guess) later the volume went up again... and I was feeling a tugging at my stomach (no pain as it was numbed by local anaesthetic)... then I felt the tube go into the stomach... what a weird feeling!... some more fiddling about, a little swearing by the surgeon (which sent my mind into over drive!!... Let’s just assume someone stood on his foot. )... then before I realised it the whole thing was over! I did at the beginning have a little choking fit... but they were onto it and tilted my head back and problem solved. It was just some saliva going the wrong way.

I was wheeled back to the ward and was feeling kind of sorry for myself with the drugs wearing off and I was alone. Zara had to pick up the children and my father got lost in the hospital! Then my nurse walked in... he was very new and seemed very nervous in dealing with me. Confidence creates confidence.
Lesson learnt #2: it’s not fair for both parties to leave an untrained nurse looking after me, especially recovering from surgery.


Again no information had been passed along. Thankfully we were more prepared and had an alphabet board, but when he said ‘how do I use this ‘... I thought shit this is all I need!!... so I just retreated into myself with some good old fashioned meditation... knowing Zara would come back at 8pm, I had 4hrs to keep calm... when she arrived I was setup and made alot more comfortable... I was also finally got some pain medication (only to be disappointed to find that it was only paracetamol... I was angling for more of the ‘pan’ family! ). As I had no fluids or food since Sunday night (it was now Monday night) and I wouldn’t be allowed anything until Tuesday they put me on a drip to help with fluids.
Lesson learnt #4: eat very well before going in.


While I was waiting for Zara, a ward carer (I’m not really sure of her title, she had a different uniform... maybe it was the cleaner!!) turned up to give me a wash. Yes to my surprise my balls got a wash. What is with that? Do they take one look and think ‘those bad boys need a wash’... or do they smell... who knows... or in fact who cares!!
Lesson learnt #5: Sometimes just go with the flow!



After the day’s adventures, I was tired but had a very bad sleep that night. But the night nurses were brilliant and funny ... they knew how to deal with me without me saying anything... ‘can we roll you ‘... ‘are you in pain’... ‘can we move your head feet etc’... and best of all... ‘do you need to pee’! I awoke very early with my ‘roomies’ hosting their own talk back radio... I never new there was so much wrong with the world!
Lesson learnt #6: It does hurt, but drugs are good!


That morning as I watched night turn to morning... my nurse arrived and was very experienced with MND patients, so everything ran smoothly. I was ready to go home. It was just a matter of making sure the peg worked. Which couldn’t happen till the afternoon! We tried to get me up and in the wheelchair while Zara was there... but that didn’t fit the hospital routine... so we had to wait, by which time Zara had to go and finally when they were ready... it took 3 nurses along time and damaging my wheelchair and communication setup in the process!

Overall it was a very good learning experience and next time we would rely more on my own carers for my basic needs. Although the staff of the hospital are more than capable their strength and expertise is more acute medical needs.... which I guess is the purpose of a hospital. As far as the operation went... yes it hurts and even after a week is still tender, but nothing that panadol can’t fix! A few days later, I was able to watch Damian at cricket!



The Peg
A few weeks before the operation I had a ‘run in’ with the community Dietician (I hope she’s doesn’t read this)... who stated that ‘under no circumstances can I put anything else down the tube except for the liquid food that is provided’. I said, in a nice way... ‘don’t be so stupid!’... if I can’t put my vegetable juice and liquid smoothie down (and Whiskey, Wine, Beer or Vodka)... you can cancel the operation!! From my own research (patientslikeme.com) and talking with my Specialist and the Peg nurse, I knew that wasn’t quite true. Yes the tube is small and so I had to be careful what goes down... but as long as it’s liquid... there shouldn’t be any issues!

Two weeks after my operation we are back to a good routine. I’m still eating my usual foods (McDonalds, KFC, Subway!!)... and using the Peg at lunch for my smoothie... which tastes awful and I’m very happy not to taste it anymore. If I’m tired and can’t be bothered eating... I can just throw down a quick can of liquid food as provided (Ensure). The other night I had a nice glass of Chardonnay... sniff, then pour and repeat... fantastic! Nice and relaxed! When I had my meeting with my community Dietician this week ... I just lied!!!

I’ve got the Peg early so my body can recover from the operation and my food intake hasn’t changed... it just gives me more choice. It’s nice to be in control of the disease and be one step ahead of it. I recommend it. But make sure your body is strong enough to recover quickly from the experience.

What happened to September?

I had the best of intentions to do a big write up on a fantastic month I had in September with family birthdays and Fathers day... but as we head towards the end of October, it all seems rather academic!

However there were some highlights that are worth a mention. .
Father’s Day was brilliant... it had been a few years since I had been upstairs (in my own home!) and to my surprise Peter (my evening carer) turned up to lift me up for ‘high’ tea. A few scary moments when we all forgot (including me) to support my head... which nearly came off... and my legs didn’t bend when going around corners!!! It was fantastic to see all the children’s rooms, although I suspect they were more excited about the cake and chips!



My birthday was good... we went out for breakfast, lunch and some garden art shopping, then movies and home for Pizza! You could tell I hadn’t been out for awhile as at breakfast, I thought I had invented the perfect drink for me... a hot chocolate with a shot of coffee... after I typed all this out (which took awhile)... I was told... ‘you mean a mocca ‘... I had been sitting on my ‘invention’ for days!!!

I started a new treatment that I can recommend to other PALS when their hands stop working... get a weekly hand and head massage! I’m sure it’s not doing any medical benefit... but it feels AMAZING and worth it just for the feel good factor... I haven’t had a good head scratch in years and the hands can get very puffy during the day... doing nothing!

We have been going to a seminar with a few of our neighbors... which I have been really enjoying. Sometimes you can have too much MND and it’s so nice not to be center of attention and just have or listen to normal conversation. It’s refreshing to focus your mind on other things than your own progression.

I have read my share of ALS/MND books over the years from around the world and most have a similar theme and can get a little repetitive after awhile. But Amyotrophic Lateral Sclerosis: A Guide for Patients and Families / Hiroshi Mitsumoto ed looks very interesting, so much so I’m expecting my copy to arrive any day now. Another book is coming out very soon is Paul Blacklow’s book which covers lots of different therapies that helped him.

These are the facts and where I’m at...
Arms and hands gone.
My trunk is weak.
Legs still strong but only walking in the swimming pool. I can stand for toilet and transferring with assistance.
Ankles very weak.
Neck getting weaker.
Can’t talk!
Breathing is ok, with latest FVC at 31% (it was at 60% 2yrs ago).
Some flem issues with clearing my lungs and throat.... a bit of coughing and spurting!
Some dribble... mainly when laughing!
Eating is getting harder.
Swallowing is still ok.
Drinking is still good but lips are getting harder to control!

So if you were to summarize, I’m in the advanced stages of MND where I can’t walk, talk and require constant care to do the basic of human functions. But I don’t actually feel like that... I still do so much and every (well nearly) day is a joy where I always have something to do.

I’ve finally decided it’s time to get my feeding tube (PEG) put in... and nice to have control over when! I’m going in to hospital around the end of November for one night... should be interesting... just waiting for my confirmation letter. I’m looking forward to experimenting with increased water, horrible tasting juices like onion, easy access for smoothie, trying whiskey and wine again via a more direct method. While I can still eat and enjoy my food via my mouth the tube can be used when I’m tired or don’t want to eat anymore!

Have a look at my post on 15 May 2007 for more information on PEG.


For those that are interested, the below video shows the operation that I will be going through...

Sometimes the word care leaves the carer.

Carers
Having MND is a real shit, you try making the best of the situation but it still manages to give you good kicking... and it effects your children, your wife and your wider family in so many difficult ways that require super human effort and sacrifice on everybody’s part.
Zara and I, in the early years discussed how we would manage this disease and my care. We read and saw how with the wife (or partner) being the sole care giver, things can become extremely difficult and often the relationship can break down over time ... add three small children to the mix and no matter how strong your bond is... the stress can be devastating on a family. That is what we have seen so often... so we quickly decided that we would ‘outsource’ my care and run it like a business. Without realising it, I was getting a consistent level of care (mostly!) without giving compromises to the things you may take for granted. For example, if I’m not sitting just right or my shirt is crumbled up the back it can be uncomfortable the whole day. With a carer you can keep trying until it’s just right... but with a wife (or partner) as a carer you’d both make allowances to help each other, which in turn means you don’t get what you really want.... then no one is happy! She feels guilty and you’re not comfortable!!

This is something that has worked for our situation (but may not be suitable for others) and enables us to operate as a normal family (or at least try) and to date it was the right decision for us. We have had and still have, the most amazing carers-we’ve been very lucky. But every now and then you hire the wrong one and they leave behind a trail of stress and upheaval. July and August was one of those times that we were completely left in the lurch, not once but three times. It creates many problems from hiring new carer’s, re-training, cost to re-advertise and my lost routine which effected what I ate, my personal hygiene and my bowels! When you are at the advanced stages of MND, the routine and consistency is extremely important. Thankfully our existing carers (and Dad) really helped when we needed it... like Michelle pulling double shifts and covering others or John who after doing a night shift somewhere else came and got me up and showered me (he even fell asleep while feeding me!! ) or Peter who has been a solid rock and covered other shifts.

I try to ask the right question’s and be upfront when describing the job at the interviews... but sometimes you just get it wrong. I have seen some amazing things this month... where someone was begging for an interview... and then just didn’t show up, or others who are keen but not show up for a interview or just don’t bother to reply to my email after they have applied! Or we hire them, then don’t turn up to training and then when I make contact, decided they don’t want to do the job! ... and the list goes on!... I really enjoy wasting my time... given my time is limited!!

At the time of writing this we nearly have everything back to normal with some fantastic new carers and although we have changed a few things around, I still have my faith in humanity and hope we don’t have this again!


Jury Duty
Last month I said ‘yes’ to Jury duty and was looking forward to it. The day started very badly when our carer (had been with us for a month) rang up at 6am and said she’s sick and can’t come (latter that day said she’s quitting and won’t be back with no apparent reasons or time to find and train a replacement - see above)... so we tried to make contact with our back up (his phone was stolen and never got our messages)..Zara was a bit out of practice but we managed to muddle through with the help of Damian... and I was up dressed and in my chair (no time for a shower)... a quick ‘help’ phone call to my parent’s and Chad came to get my breakfast, which we didn’t have time for!
So off I go to court... unshaven, unshowered, hungry and bad breath... I should fit in very nicely! What a complete shambles... I sent the staff into a complete frenzy... they took one look at me and made a lot of assumptions... kept trying to talk to Chad who said... ‘Don’t tell me... talk to Matthew who’s right in front of you ‘(which is brilliant!)... then they proceeded to inform me in a s l o w and LOUD voice... I couldn’t do it because... wait for it... ‘I couldn’t fit through the door ‘(which is complete bullshit) and then after being sent downstairs... ‘I've missed the ballot’... my answers came thick and fast... tap tap tap... ‘No’. Anyway after a bit of to-ing and fro-ing and a manager intervened... I got to go into the ballot draw. I was the last name to be called of the first ballot and so wheeled into the court room with a large smile on my face.... but at the last minute as we were sitting in court the case was cancelled... and we were all sent home!! I was quite amazed how a public sector work place was so inept at dealing with disabled people, I would have expected more.


Process Chart
I put together the following diagram for people to be aware of all the options available to them in New Zealand when you progress through different stages of MND within the health system. I appreciate that other areas and regions will be different... but at least it’s a reference point and may help some to understand the health system and access the correct services. This is only my experiences and should be followed up by your own inquiries. For others it might be interesting to see the different people and service’s we have to deal with.

Click: MND Health system in New Zealand

A small tip for when blending your food – a Big Mac does not blend well, looks revolting but tastes OK!... once!!

Dead fish hands

Dead fish hands in bed
My hands and fingers have stopped listening to me, especially in bed (not as in porn movie). As I move about in bed my hands get stuck in very awkward and sometimes painful positions including in my Pj top. The fingers are worse… when the thumb gets caught in the hand or the finger with a long nail gets stuck in another finger! Most times I have to wake up and move the whole arm or my body with a lot of unusual grunting sounds! So it’s like having dead fish for hands… especially when one hits you in the face in the middle of the night.

Robot
I thought I would try to do my share of the household chores… and bought on the internet a robot mop ($20) for the floor. It was a huge success and very funny to watch. But it caused more problems than anything. Our dog became very threatened by this newest member of the family, especially under the dining room table. We couldn’t work out why he (Olly, the dog) starting peeing on the curtain and in the corners… until we realized (after about the fourth time) he was marking his territory. So the robot has been put into storage and the dog and I went to our respective boxes.

Ballet show
I went along to Harriet’s and Margot’s ballet recital in the Christchurch Town Hall. A fantastic thing to be able to see my girls up on stage. But you must make sure you have everything planned and don’t get caught short. It’s all in the planning. I had a busy morning and also went to another great MND support meeting, then home and on to the recital. I didn’t factor the cold air, stopping for a pee or the effect the music would have on my bowels! I nearly made it through… but near the end I was turning green… I couldn’t take it anymore and just had to get out. But I can’t just say ‘excuse me I have to go to the gents’ and sneak out quietly. I turned my wheelchair on, turning towards the exit… Zara who was next to me with Damian got the message… and the lady behind us lifted away their chair but as I went to the door the very kind lady holding the chair went to sit down and missing her own seat ended on the floor chair and all…. I was oblivious to this as I made my way to the door in the dark! Once outside all I could do is pace… which in a wheelchair means driving around in circle… hoping Zara could read my mind!... unfortunately she thought I had got emotional and needed to leave! It must have looked quite odd with this man going around in circles groaning to himself! Luckily the performance ended and Zara worked out what was happening… action stations, with the children given to the grandmothers, grandfather dispatched to get the van and we rushed to the toilets with our emergency pee bottle (Uribag)… never leave home without one. See the chaos I caused by simply not planning ahead! It adds to the adventure.

Newspaper
If you’re PALS and miss reading the paper in the morning and being able to turn the pages yourself… then I have the ultimate solution. In New Zealand all the Fairfax newspapers can be read online but as the actual paper not a condensed online version. Lots of other papers from all over the world are also available. You can use your existing subscription, if you have one.
Check out for New Zealand
http://fairfaxmedia.newspaperdirect.com/epaper/viewer.aspx

Or Global
http://www.newspaperdirect.com/

Swine flu
I am just getting over a mild cold that I have and also taking antibiotics just to be on the safe side. But I did get worried when one of my carer’s wife was diagnosed with Swine Flu. He was sent away for a week but neither of us seemed to catch it. So far I have been very lucky… let’s hope it stays that way.

Dribble
I am entering the fun stage where I look like the village idiot. Excess saliva… yippee! As my mouth and lips get weaker the ability to contain its contents are diminishing. So far it’s not too bad and only really happens when I’m laughing or crying (emotional liability) or coughing! So if you see a dribble (or splash) on my chin… don’t be embarrassed, please wipe it for me.

Therapist
There is no excuse with today’s advances in equipment that you should suffer any real discomfort from sitting or sleeping. You just need to ask the right people. I thought my neck was getting weak very quickly and I was also developing another sore shoulder. A quick email to my Seating and Wheelchair Occupational Therapist and Physiotherapist and a meeting is arranged. We try a different seatbelt which goes over the shoulders and neck brace. Both didn’t feel right. Then we put the lateral supports (they are fitted to the wheelchair and stop me from leaning over onto one side which are placed against the ribs) and raised my feet at my computer… and hey presto problem solved! If you don’t ask nothing will get fixed.

Swimming
I’m not sure if it’s what I wrote in my previous blog or just the fall but it seems the ‘establishment’ considering me to high risk swimming in the Hydrotherapy pool. This is strange for a hospital! -‘I think your fall at the pool alerted them to the danger of patients with deteriorating conditions having long-term hydro sessions which are not closely monitered by a therapist vs a physio assistant’
All of this is very ironic given I still go swimming every Wednesday night at the same place but under a different organization with no problems and less supervision. Luckily I still can, so I won’t bother with the fight… I just hope it doesn’t affect other PALS.

The MND support group has started again.

I forgot to mention my coffee incident in my last blog. News on the ‘wires’ reported that coffee may help delay the effects of MND. This got me very excited, as those who know me well … know I love my coffee. But I gave it up almost on diagnoses day… which was extremely difficult… green tea is just not the same! So with joy in my heart and a twinkle in my eye, I ordered my first Cafe Macchiato (A shot of espresso with steamed milk added) in 4.5yrs. What a stupid thing to do! Too much coffee for my system… I had this nervous energy for the rest of the day which being stuck in a wheelchair didn’t help… I was buzzing all day! Coffee is no longer on the menu.

Support Group
We finally had our MND support group start up again which was fantastic. When I first was diagnosed, I went along to the support group… which I nicknamed the ‘circle of death’. It had this very somber feeling about it and was made up of mostly widows and those that didn’t want to fight (that was one reason why Paul Blacklow set up his alternative thearpy group). It was quite scary to look at other PALS and see your possible future. My brother, Tim and I joined (and became president of the Canterbury branch) to create some kind of spark… but I think our enthusiasm was not enough! But what a difference a year makes. The new support group has a fantastic energy about it. I did arrive very late (kids birthday parties etc), just about smashed the door down on arrival and then had to drive through the middle of the group (which I was tempted to do a spin in the middle) and then proceeded to laugh very loudly at my subtle entrance! There seems a great bunch of people who have a thirst for information. I ended up with a few of us with no speech using various types of technology ‘taking the piss’ out of each other which was quite funny! I’m looking forward to the next meeting and encorouage those in Christchurch to make effort to come along....its very rewarding on so many levels.

Multi-tasking
This is something very new for me… but my ability to do more than one task at a time seems to be going. It might be that I need all my focus to do simple things like eat or type but if I get distracted… it doesn’t seem to work very well. If I’m eating and something funny is on TV food starts falling out or I choke! The best example is when I’m walking in the pool and I start talking (grunting) to the carer, my legs stop working! Very strange… I can no longer walk and talk at the same time!! Maybe it’s just a man thing!

Frosty
Winter is here but the frosty mornings have not been a problem. By the time I go through the morning routine the house is very warm. Most afternoons if the sun is out you will find me dozing in the sun listening to some obscure talking book. I have also been reading a lot now that I have raised the page turner to stop straining my neck and moved the turning switch to use my knee. I can now can tilt the chair back and read very relaxed. There is one danager in winter when driving the wheelchair with my headcontrols is the sun is lower in the sky...thus I'm often driving blind! Can end with some near misses! I'm working on a Mary Poppins solution (sun umbrella) as I can't drive my headcontrols with a hat on.



The survey results
A while ago I participated in a survey on emotional liability with patientslikeme.com. Below is some interesting results

It’s too soon for BiPAP

Bipap<

The day of going in for ‘fitting’ for the Bipap can be best described as day of comedy of errors, like the universe was trying to tell me something. It started first thing in the morning, when my morning carer was attempting to get me in a position to stand up and have a pee… pushed a little too hard and I lay back on the bed but started to roll… and yes you guessed it, ended up on the floor… but in that prayer position!!... this time Zara came running when she heard the screaming… and knew what to do straight away! Only one knee hurt, I was shaken but fine. My muscles seem to just spasm madly when they have been stressed… but we got over that and now my carer is more aware and careful! Nothing beats on the job training!!
Our appointment was at 3pm, but we both thought it was 4pm… it wasn’t until we arrived did we realize we were quite late… and only after we had parking meter issues. Fortunately they would see us and the specialist was away sick. The one thing I really hate is when people talk about me but not at me and treat me like an imbecile. We were not off to a great start. We went through a few different masks from full frontal (looking like a deep sea diver) through to a nasal one, which I was keen on. The nasal one didn’t work for me as my lips couldn’t stay shut… and air would rush out my mouth! We settled on nose and mouth one… which when the Bipap was on is comfortable. I was bemused, that she didn’t explain how to set the machine up, but went through it with Zara. So if something is not right… I wouldn’t have a clue what to do!
The following night we tried it at home after psyching ourselves up for a sleepless night. After about half an hour I realized that although I didn’t mind this it was not helping me breathe and infact was going to upset my sleeping. You see, I sleep very well and don’t wake up with the signs you would associate with needing a Bipap… like tiredness, headache or tiredness during the day. Whenever I have had new equipment like the wheelchair it felt right and needed. The Bipap just felt too early. I got it turned off, rolled over and had brilliant night’s sleep… like I normally do.
I strongly believe that it’s just too early for the Bipap… and it’s going back to the hospital. This was like the peg they were keen for me to get (and said no)… that was over a year ago! It’s a difficult one to know when to get different kinds of equipment for the stages… but you as the individual will know what feels right. This was just too early.



Lonely v Loneliness. <

This is something that I’ve noticed happening to me as my voice has now all but disappeared. I realized that I was feeling very isolated and lonely although many people were around me and couldn’t quite figure out why. It was because that as my voice went, everybody also stopped talking. The interaction you would have with your children or people around me had disappeared. I was no longer able to engage in human interaction in the normal way, so everyone stopped talking to me. Some days I would go for most of the day without anyone talking to me about their day or some silly story! Now I know that talking to someone like me is difficult as you can’t really ask questions (unless you wait for the typed answer) or can’t engage in two way conversation (unless you have patience). I do appreciate how difficult this is to do, because I had the same issues. In the early days I talked to a PAL (patient with als/mnd) who couldn’t respond I found this very difficult… to the point that I just stopped talking to him. The children have adapted very well and in their own way… just come up and give me a big hug from time to time … or learn to wait for me to type a answer… which meant so much to me.

Please don’t take my comments that I want everybody ‘babbling’ on at me… that wouldn’t be real! I’m only writing this down to show you some comprehension of what it’s like ‘in here ‘. I think everyone adapts as this disease progresses.



My Big Adventure <

I have just come back from Respite which is still going very well… and I’m enjoying my time there with the brilliant staff! The weather was horrible so I decided to invite one of the residents to come to the movies, with no help or carers. With us both in motorized wheelchairs it was going to be interesting and quite a sight to behold when cruising the mall! The funny moment was when we both drove into the lift and realized the button was behind us… so after a 20 point turn, he was able to raise his wheelchair up to push the button!! Trying to turn two wheelchairs around in a lift was quite funny! Good day out and good movie and a big tick for me and having some freedom!



Winter clothing <
This week winter started and luckily I had most of my warm clothes ready. With MND you get cold very easily (through lack of movement and poor circulation) which means your muscles work slower or just spasm madly. So keeping warm is important. I have discovered Pete’s Jeans which are thermal lined and just brilliant! I’m still working on the feet, which get very cold during the day. I’ve tried all kinds of socks, even battery heated ones but with limited success. I have some thermal lined winter boots from Taranaki Rubber which are boots that ‘lifties’ use on ski fields. Brilliant for going out, but a little bulky to operate my mouse click pedal . My tops are thermal or merino so I don’t feel heavy and can move my arms… which are important to me!
We have the heat pumps cranked up… so it’s always warm at our house and thanks to the trust we don’t have to stress about the electricity cost of doing so.



How is the body going? <
The feet and ankles are pretty weak now with great care required when standing… especially in barefoot! My middle toes on my left foot are all but gone and can sometimes slip under my foot when standing (barefoot)… which is quite painful! Legs still seem strong but I am noticing it harder to walk at the pool. My neck has become a concern with it getting tired during the day… with all the computer work… normally I’ll have to rest it for awhile in the afternoons or it may cramp if turned to one side for too long. Cramping in the neck hurts! it goes all the way up to the top of my head. When the neck gets weaker the head gets a little floppy and the mouse harder to control. There are braces you can get… but I think that’s a long way of yet! I’ve noticed awhile ago that my shoulders just don’t work anymore… which is quite an odd feeling when I noticed this… I can lift my arms but only from the elbows. The right hand was the first area to be effected but still I can move my index finger quite well… which doesn’t really help me!



Maybe we should all ponder this…

Enlightenment in seven days <

Buddha told his disciples: whoever makes an effort can attain enlightenment in seven days. If he can’t manage it, certainly he will attain it in seven months, or in seven years. The young man decided that he would attain it in one week, and he wanted to know what he should do: “concentration” was the reply. The young man began to practice, but in ten minutes he was already distracted. Little by little, he began paying attention to everything that distracted him, and thought that he was not wasting time, but was getting used to himself.
One fine day he decided it was not necessary to arrive at his goal so fast, because the path was teaching him many things.

It was at that moment that he became an enlightened one.

‘He was watching two caterpillars in the sun’

… is the quote of the month from Nigel Bradley.. as he was visiting one afternoon… honestly it was interesting!!

About an hour after sending the last update, I had a very painful fall! The good news I had it at Burwood hospital (which specialises in spinal patients!). It was after I’d been swimming and I’m normally feeling tired after a good work out. But with my carer coming of a night shift and the pool wasn’t as full of water as it should have been, we were in for trouble. Hindsight is a wonderful thing! So, in the middle of the transfer both my ankles gave way and I ended up in a prayer position, but the real painful part was my ankles and toes were bent the wrong way!! Lots of people came but spent ages discussing what to do… in my head I was saying.., ‘fuck fuck fuck just lie me fucking down, fuck ‘ but what everyone heard was ‘arggggggghhhhhh’. I was in so much pain there was no way I could spell out ‘t o e s’. So I kept screaming! Apparently the hospital emergency button was pushed and loads of people arrived, even the crash cart! Eventually after the ‘committee meeting’… they lay me on the floor! Nothing broken just sore toes and ankles. They even had the on duty doctor check me out which was nice! It took about two the weeks get everything back to normal.

For the last two days I’ve been reminded of Bob Dylan’s song – ‘the times, they are a changing‘with it banging around in my head. On Monday we had a meeting with the Respiratory Specialist and I just knew we were in for a few surprises given it have been nearly a year and I’ve noticed a few little changes. Like the ability to clear my lungs of flem without giving it effort and concentration and the inability to draw a deep breath on the odd occasion. My FVC test was quite funny with Zara trying to hold my lips over the tube and timing when to blow and hold my nose!!... we needed more time to perfect that routine… as my FVC was at dangerous level of 24%. What this means especially going into winter that although my breathing is adequate for my current needs (sitting around all day!)… I am at high risk for chest infections caused from the flu. His suggestion was it is time to bring in the BiPAP machine. My initial reaction was ‘not yet ‘. But both Zara and the specialist convinced me that it made sense in getting it sooner than really required…. as I preach to everyone! It’s a big step as this is my first medical equipment, which over time will keep me alive. So in about a month’s time I go back into hospital for a trial and fitting. The best way to describe how I was feeling afterwards, was feeling like I had failed an exam paper, after working so hard all year but I studied the wrong info for the exam… it’s that sinking feeling you get in your gut as you walk out the door!! A pass would’ve been nice!

What is BiPAP?
Bi-level Positive Airway Pressure (Bi-Pap) is an electronic breathing device used in the treatment of sleep apnoea, lung disease, and to treat respiratory weakness in ALS. Use of the device overnight improves quality of sleep, daytime sleepiness, and may improve thinking ability. (Extract from patientslikeme.com).
Read more at the Wikipedia:
http://en.wikipedia.org/wiki/Bilevel_positive_airway_pressure

Fundraising appeal
I’m going corporate! Well only a little…. With the help of my brother, Tim we have teamed up with Power Store which will donate $20 to the trust for every new customer that signs up to a new way to buy your household power. It may not be suitable for you personally but why not spread the message to everybody you know including your work, friends and family … the more people the better! Sorry.... only for people living in New Zealand … so get emailing!

What is it? Click here

Copy this link into your email - https://secure.powershop.co.nz/promo/mfcf

Or click here to insert the information into a blank email

But you must sign up from this page for the donation to be tracked!

Let’s spread the word!!... It all ends 31 July 2008

Ode to my left hand

I know it’s been awhile for an update, but I just felt like a little break. Christmas and New Years was good with Christmas day a relatively low key affair and the children having a fantastic time. I didn’t really want a ‘last Christmas’ where everyone is doing what I wanted… mind you I did plan the menu! For me it was nice to have family around in a relaxed day… New Years Eve was a disappointment, with me stuck in my chair with bad TV, no alcohol and to bed early. That night I was a little depressed with my lot in life… so next year it’s going to be different. I have to admit holidays are the worst time as my therapies all close down, people go away and my carers need time off. I much prefer this time of year where everything is back to normal… well as much as can be!

Another milestone and goal was reached when I walked Damian to his first day of school. I felt proud of him and he was so chilled out. I was feeling quite good that I made it as well and in reasonably good shape. So the big goal is now to take Margot to her first day at school in a year and a half.

So… how am I doing… well pretty damn good... given I can no longer walk, talk and now my left hand, which was my mouse hand and also my wheelchair drive control has given up working. It happens slowly… then ‘wham’ it’s no good anymore. Luckily I knew it was coming and with careful planning the transition was not as traumatic as the early days when you lost some function or freedom. I now operate with a Natural Point head mouse which has a camera and follows a reflective dot on my glasses which then converts the movement into moving the mouse. I click with onscreen software or have a switch that I operate with my right foot. It’s a fantastic system, but get it early, so you can practice! I now drive my chair solely with head controls and don’t even think about it now.... no more holes in the walls either!

MND is still making its way through my body. I feel its presence more when I'm lying in bed trying to get to sleep. My muscles start twitching all over… so much the bed moves. I’ve even been woken thinking it was an earthquake! My breathing feels fine and swallowing is OK with the odd choking or coughing episode. This happens when I’m not eating and sounds much worse than it is. My ankles and feet seem they will be next. Both my feet turn inwards with my ankles not feeling very strong. Some of my toes have stopped responding… which can be painful when I stand and they don’t straighten! All of my facial muscles are weaker which makes it hard to hold a straw in my lips and I often look surly… when I’m perfectly happy! However my profile on patientslikeme has my functional rating score (FRS) at the same for the last 5 months! Which is good news!... maybe everything I’m doing is slowing the progression down.

My current therapies are
Chinese reflexology, acupressure and moxibuston combination– twice a week
Deep Tissue Massage – once a week
Hydrotherapy Swimming – twice a week
Private Physio Stretching – once a week
Passive exercises – daily
Lots of water.

My current supplements are
Clinicians Alpha Lipoic Acid Capsules 200mg –x2
Selenium Food Complex -x1
Milk Thistle (formerly Silymarin 80%) -x2
All the rest is in my smoothie – see previous post for the recipe.

Technology
As my talking is very difficult to understand now, I am very reliant on my wheelchair laptop running E Z KEYS. I operate this by a switch beside my left cheek and type out words that speak… so I'm now very American sounding! It has taken a while to iron out the teething issues (that you always get with technology) but it’s worth it. With the laptop I can talk, operate the TV, Play music when outside snoozing, email, Skype (mattlaptop5) or MSN Messenger (matthewfraser@hotmail.com) and browse the internet. I’m very grateful to the Burwood Hospital assistive technology team for helping put this together. Everything is running brilliantly! But make sure you start this process early as this took about five months. Now people have to be patient when talking to me and waiting for a reply! But that can be very funny sometimes!

Respite
Is going really well by me using those few days every month to have some peace and quiet while also watching a lot of movies! It’s also really good for the family to have time away from all things MND and the carers. I’m even making the odd friend and it makes me appreciate how lucky I am to have my family and friends supporting me through my own journey. Last month with the help of two male nurses, I had this idea to walk on a treadmill in the rehab gym they have … and you guessed it… it didn’t work and we all nearly ended on the floor!! But worth a go! They also have a special table that when strapped in lifts you into an upright position with no pressure… it’s brilliant and I’m going to do more of that in my next visit.

Social Experiment
Zara was taking the children to Dunedin for a few days and to the Cadburys chocolate factory. Rather than having someone stay with me overnight I was really keen to try living on my own for a few days, with only my normal carer’s hours. It was a great success and everything ran smoothly. It was a great feeling of freedom and a testimony to the way we are running everything including my care and the fantastic team of carers. I felt in control of everything around me rather than leaving it to others… a bit like going flatting for the first time, but I didn’t drink so much this time!!

Heat light and Sound
As my speech detoriated, my body has seemingly over compensated in the other senses. My sense of smell has become very heightened, which if I smell cigarette smoke, bad breath, byo or cheap perfume among others … sends me into a tail spin especially first thing in the morning. This is not uncommon and when I searched on patientslikeme.com I found a lot of others had the same problem. The other thing I find is my hearing is better and that I see more of the world around me by using reflective surfaces instead of turning my head, which can be stiff and cramping at times. The hot weather was a challenge with it making me very tired and my feet swelling up. Luckily we would turn on the air conditioning and I would be very comfortable again… which was very nice!



The following is a brilliant TV campaign running in the UK… hold onto your chair for this one!

http://www.sarahsstory.org.uk

A Christmas message.

Well, I made it!!.. another Christmas is upon us and overall all I’m pretty well. Thank you to everybody who has supported me, zara, the children and the trust. You have made this year relatively smooth sailing… who knows what challenges are coming my way next year!!... So stick around!!

My communication laptop is absolutely brilliant! The first outing was a fundraising evening at decant… which was good to so many faces… and I was able to hold a conversation of sorts. Thank you to everyone who came and Decant. Subsequent outings have been for lunch and the pub… it’s good to feel normal again. I just need to get faster!

Have a happy and safe Christmas.


A few weeks ago we had Damian’s 5th birthday which was a goal of mine. But the night before the big day I was feeling very melancholy. Thinking about how I’m unable to teach him to hold a cricket bat or play tennis. I was looking forward to doing what my father did… with endless cricket practice on the front lawn. So to Damian… when you read this… I’m sorry, I wanted to show you so much. Every time I saw someone teaching you something I would have… it was painful.

Awhile ago a friend came to visit from Sydney. One of his comments was how hard he thought it would be to visit me… so I asked him to write a blog…

launching tips and tricks

I have just come back from another four days of Respite. I was looking forward to the peace as I haven’t been sleeping well. I would wake up about 4am with a really hot body temperature with my legs on fire and in pain. I couldn’t really do anything to fix it… which just added to my frustration. Apparently this is common with PALS in various forms and there are loads of theories as to why…. but it’s just another thing we have to endure!! Now the temperature is calming down... I’m sleeping better although I developed a sore throat and now a cough!

Tips and tricks
It’s here!! With the help of Greg, my in-house (Sydney) self proclaimed geek... we put together a new webpage on my website. Fellow PALS can share all of those little tips and tricks that we have developed to overcome those little problems or just make life that little bit easier. Have a look, add your own or just make a comment. Click here .

Emotional liability
I couldn’t find a good definition of this, but it common with PALS in varying degrees. It basically means you have this heightened emotional level where you cry or laugh in the most inappropriate situations. Mine is pretty mild and usually involves crying hysterically. I even howled through most of ‘sex in the city‘ movie. So no more ‘chick flicks’ for me!! Strictly boy’s movies! Even at a funeral recently I burst out laughing in an emotional part … very embarrassing! Most things on TV set me of… so it’s not uncommon for Zara to be mopping up my tears in ‘extreme house makeover’!!

New communication
This is an ongoing battle that was made worse by my own frustrations. Anytime you are dealing with untested technology you expect problems! The system is a touchpad running ezkeys which is operated by a switch close to my head. It’s my new way to communicate and it’s going to take a lot of practice, but a lot of PALS around the world use this software including Stephen Hawking. When it first arrived there was a lot fine tuning required. This was the worst part as I knew what needed to be done, but had to rely on people doing it or trying to explain to carers how to. On the inside I was screaming with frustration. The last time I felt like this was the morning I could no longer do my shirt buttons up! We are nearly there with the last problem being a power supply issue from the wheelchair. Then I can begin using it when I’m out and about. But don’t expect sparkling conversation!!

Ensure
When we saw the Neurologist last month he suggested I also start having ensure. It’s basically a meal in a can that comes in a liquid form in various flavors. It’s also subsided by the government… which is brilliant as it’s imported from USA. It actually tastes ok and I use it as a top up to a meal so I can enjoy myself if I go out and in my smoothie. Eventually when I have a peg it will be my main source of food.

Some interesting links and documents
I thought some of these might be useful to others.

Cook Books
We have about four boxes left. So be quick as these are fantastic Christmas gifts. You can still order online. Click here

My body
I wake up most mornings and my mouth felt like it had been in a fist fight…. as my facial muscles continue to weaken I start to chew the inside of my lips when I’m asleep. It’s not uncommon to find my cheek between my back teeth… that can be very painful and takes all my will power to unclench my teeth! Lately my tongue has been trying to join the party…. My trunk has been getting weaker with my ability to sit up right more difficult… It’s very much in the early stages… but it’s giving me a clue to whats happening… Breathing seems fine, legs are losing muscle mass and my left mouse hand is getting slower… the journey continues!! Overall I’m feeling more like a disabled person than someone with a terminal illness… especially from my experiences and friends I’m making while at Respite. In a way it’s a life I would have never experienced.

Lithium
The results from the patient led global trial are in and unfortunately there was no evidence that it has any effect on slowing down the progression of MND. So about two weeks ago I slowly came of lithium… I had a few days where I was irritable, ‘out of sorts’ and tired. I’m feeling good now. The searching continues…




A brilliant new ad from Canada MND Association

Poo’s and wee’s and birthday’s

I have been dreading writing about this topic, but it has to be covered so other PALS can prepare themselves! September will go down as ‘poo’s and wee’s’ month. I’m sure my diet didn’t help but I think it was more the fact that I was moving less, my swimming carer was sick… so no swimming and my weekend carer dropped me on the floor… thus developing an instant phobia of toilets!.. All of this resulted in the one thing I feared… CONSTIPATION. I even had it on my birthday… which ended up by me coming home after an uncomfortable movie and sitting on the toilet while zara stood on my feet to enable greater force!!!
I eventually went to see my Chinese herbalist who gave me some pills to get everything back on track. Apart from the pain this cause’s it also upsets the routine… if I miss my ‘poo’ slot in the morning, I have to wait for the next day…. which means holding it in!!... I want you all to try that at home and see how you go!!
The pills I was taking also flushed my system… and yes… I pissed myself!!!while in my wheelchair ... I’ve read about other PALS doing this… so I knew it had to happen sometime … but it’s still very unpleasant having to sit in your own urine while it runs down your leg while your home alone . Luckily two carers came to my rescue quickly!!... A very sobering moment!

So to others prepare… it will happen!... when you are moving less make sure your bowels don’t!!

I’ve got new controls for my wheelchair called a head array. This means you can control your wheelchair with proximity sensors around your head…. Very cool but extremely difficult to drive. But like anything with this disease you need to get it early. It has given me a good challenge but I still use my normal control, except while snoozing in the sun. On the first day I just about drove through the French doors and when you push your head back, bracing for impact… this just makes the wheelchair move faster. I’ve been banished to the driveway for more practice.

Walking days are coming to an end with even my transfers becoming more difficult. But one night while searching the internet, zara found this disk that you put on the floor and it turns me… like a ‘lazy suzi’. It’s absolutely brilliant when I’m tired and makes transfers quick and easy. The OT was able to get me one quickly which is brilliant.

Talking is OK in the morning but the afternoons it’s extremely difficult and in the evenings forget about it. My software is now coming into its own with being able conversation with everyone including the kids and zara. It’s nice to be able to grow with it slowly. Still waiting for the one on my wheelchair which will give me some more freedom to actually enter into a conversation when I’m out and about. I don’t really think about how I’m losing my voice but rather focus on what tools can keep going. I am talking to myself a lot these days!!!

Had our six/three monthly check up with my Neurologist in early September. My big question was how did he think I was doing given my treatments and the lithium. He couldn’t really comment medically on the effectiveness of lithium, but overall he thought I would be much further down the track than I was … so that was nice to hear… I must be doing something right!!!

My brother came for another visit… here’s his blog.

Guam for a Father's Day Holiday

Zara came home one day with very watery eyes and told me about this song, which would be perfect to make a video for the children. In the end it turned out quite well. So I thought I should share it with everyone!! My plan is to show it on father’s day.



How to talk to me
I’ve realized that Zara has developed the perfect way to talk to me. She repeats every word as I say it… so we know what words to repeat. It works really well. The worst thing for people to do is just look at me… I can tell when you don’t understand … it’s written all over your face!! Another annoying one is miming the words… very confusing and it means I have to repeat the whole sentence not just words… which after a while can tiresome for both of us. I was talking to someone who had a family member with MND… and she did it all brilliantly…. even…’no I didn’t get that‘. We all have to be patient.

Sometimes when I need to get a word out I have to tilt my head to the left and look up at ceiling… I don’t know why but it works… although it looks very strange. A few people wondered what I was looking at!!!!

Carers
We have a great bunch of carers, who go out of their way to help us and who we really depend on. However August is going down as the worst month as for their own personal reasons we lost five carers. We have just finished a massive online and offline advertising blitz but you would think with my experience in recruitment in the UK and Australia…. It would be easy!!!... Ahhh how wrong can I be! We’ve had people not show up for interviews and even ones that didn’t bother turning up for their first shift!!! We have tried all kinds of things to prevent this…. but that is human nature for you… maybe it’s a Ying Yang thing!!!! I think we are nearly there and now going through training.

Guam in the 50’s
I just came across this video. It comes with a warning… it may be disturbing to watch for some. But it made me think that when this was shot (maybe the 50’s) that we are really not any closer to understanding this disease and in a way, we are following the similar path as to those in the film. Obviously the equipment and care has moved forward but the disease just looks the same!!

About the movie:
The world's greatest concentration of ALS (Lou Gehrig’s disease) has been found on the Pacific island of Guam. This discovery made by Dr. Leonard Kurland is shown here in this video.

You can have pain with MND

I have just come back from another four days of respite. After my last posting I was in trouble! The cook was bought down to my room and introduced to me and I was informed that I could request other meal options!!!... so now I know some staff read my posting (hello !!!!!!! )… I’m keeping quiet! While I was away Stephen Bergman came and took me out for lunch, a few beers and the batman movie. On the way into the movie I had a bit of a problem with the wall…. It was slightly convex and somehow got stuck…. So I put the throttle down… whammo… into the rubbish tin… and then my wheelchair arm broke away!!... it was very funny given we were in a darkened movie theater!!!!

food
A few comments were made about my remarks on food and perhaps I should explain myself a little more. It started with red wine. As my tongue shrunk my taste buds were affected with my ability to enjoy a nice ‘red’ becoming a non event. I had really wished I had gone all out and bought wine I had wanted no matter the cost. I really miss that simple pleasure. soon it’s going to be impossible for me to swallow my food and nourishment will be via a feeding tube into my stomach. So I have been a little over zealous when it comes food. I’m eating ‘junk’ at lunch because I want to…. and if I’m eating dinner and for whatever reason it doesn’t appeal… I simply don’t eat it and don’t want waste my energy. I hope this helps clarify my thinking. I just want to enjoy the food that appeals to me while I can.

Muscles
My first sports injury while in a wheelchair!!!.... I had purchased the Tiger Woods Golf game for the computer and was hooked… but because of the way you swing the club using the mouse… I pulled muscles in my neck and right shoulder. I had John (massage), Jenny (stretching) and Mrs Chin (acupressure) all working on the affected area with great success. But there was another problem going on. my neck was getting weaker. At night either in my ‘TV chair ‘or in bed it is extremely difficult to lift my head up. So I have to be more careful.

Pain
Whoever said there is no pain with MND is wrong. I seem to have something going on with my right shoulder blade. I’m not sure yet what’s happening but it’s like a burning candle flame on one spot…. and it’s worse in the evening. When I solve this I’ll you know!! I’m sure golf didn’t cause all of this…. I hope not… I’m just getting good!! The pain is getting too much now, it’s even painful when I lie on my back in bed…. so as I’m writing this I’m of to the doctors… to try and sought this out. Well guess what I learnt at the Doctors we can have pain!! … it’s called nerve pain… here’s an extract from a discussion board on patientslikeme.com that summarizes it nicely.

link to discussion board on pain

We all learn something new every day…. and the great thing I can take a pill for this!!!

Feeling
About two weeks ago, I realized for most of July I had enough of MND and everything I did was such struggle… I couldn’t be bothered! So I did what every self respecting male would do…. I felt sorry for myself and hid!.... well actually I watched a lot of movies and played golf on the computer!!... this may have been the winter blues… but whatever it was I’m over myself now!! It was pointed out by zara that I was depressive to be around…. We also realized that my facial muscles had weakened to the point I looked unhappy when I wasn’t (sometimes!!)… Ahhh the joys of having MND!!!! …. I think it’s OK to have bad days… very normal.

Current stats
Generally I’m still feeling pretty good, but the body is going through some changes:
-the speech is all but gone… most people find it difficult to understand me. I am waiting for some technology including a laptop that will do my talking for me.
-arms are ok but more weakness in my left arm/hand which operates my mouse and my wheelchair is a concern. I’m going to get head controls for my wheelchair… so when driving gets difficult the head controls are there ready.
-legs are still quite strong but the ankles are not. I can still transfer easily apart from my left leg drags a bit, but my assisted walking days have come to an end.
-breathing and swallowing are ok.

Lithium
The global study I was involved in has released its first three month report and the results are not looking good. Basically the results show has no effect on slowing the progression. I disagree as my progression seems to have slowed. There is a six month report coming out and I will decide then if I will continue.
click to view report

Respite care at Laura Fergusson Trust

It was always my intention to put into plan well before it’s urgently needed a place where I can go and my family can get a break from all things that is MND. For those who are not in this world I have got these from Wikipedia.

‘Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. The term "short break" is used in some countries to describe respite care. ‘ ‘Even though most families take great joy in providing care to their loved ones so that they can remain at home,[citation needed] the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver. Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.’ ‘Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving.’

So thanks to Anne Bergman who used to work there I went there for three days and two nights to see how it goes. The home is not an old persons home but rather a lot of younger people with all kinds of conditions. After a week of making sure all my technology was working I arrived with my laptop, iPod, DVD’s and my page turner… I was ready for the adventure to begin.

I’m going to cheat a little now and paste my emails to zara while I was there…

On 18/6/08 8:15 PM, "Matthew Fraser" wrote:
Everything going well.. i watched 2 movies played some golf
stafff are very good very proff
food is shit
everyone leaves me alone which is quite nice
talk soon

On 19/6/08 4:12 PM, "Matthew Fraser" wrote:
that was the coolest email you wrote....i didnt know if to laugh or cry...its very hard to type with this headmouse so ill be brief...
im watching on the camera but only seen olly!
slept ok...not having the pill makes a strange night...lucky i didnt have the pill as i had to listen to the lady fart and piss all night.shes having one now! it makes me laugh...
food still shit...tonight is meatballs...yummmmm!
had good day...massage with john, movie in the afternoon with peter who is a resident here ....quick drive around outside...
overall its good...apart from the food...

On 19/6/08 9:07 PM, "Matthew Fraser" wrote:
well written card
give her a big hug from me
stupid carer on tonight...they wanted to put me to bed at 83o...i said NO!
putting to bed should be interesting!
ill write tommorow ...video the morning
as for themeatball...whats my pet hate with food...all mushed up and even a spoon feeding...
feel better now ive watched a gory movie...
goodnight

On 20/6/08 11:16 AM, "Matthew Fraser" wrote:
sounds like a fantastic morning and alot of fun...u did an amazing job in choosing her presents....

last night went well a proff turned up with the useless one and was brillant..i even got my balls washed...which was a little suprising!!a little slow this morning...got up at 839...next time i may use my own carers...and think about takeaways!!! today is fishfingers!!

see you tonight.,...

It was a strange feeling to be in that environment when on the outside I look and behave in a similar way, with the same grunting snorting and laughing as the residents. But on the inside I’m still me. I felt like an imposter in disguise. This made me realize how trapped I am becoming. Overall it was a good experience and I will be going back for three nights every month or so depending on when they fit me in.

It was Margot’s 3rd birthday on Friday when I came home to a family gathering for her. Dad passed me some Champaign and blue cheese on crackers. Margot singing into her new microphone while beating the new drum. It was good to be home.

My Week of Respite Care

For the second week of the school holidays, Zara and the kids went away on holiday. My Mother in-law moved in and my brother, Simon flew in from Singapore. This is Simon’s blog on the week.

My Week of Respite Care - (by Simon Fraser)

..."Ok then...see you later...I'm off to see Uncle Matt, Mamma and Granddad...be good for Mummy"

Back to CHCH to hang out with Matt for a week...in truth I was looking forward to it...we would be hanging out at a slow pace...I wasn't required to rush around.

No substantial change in Matt...although when you can do nothing for yourself it’s pretty hard to see how much worse it can get...it was difficult understanding Matt and I did resort to "sounds like, how many syllables...starts with" type game with him...if that didn't work it was on to questions like "are we talking about you or me?" Is it about food, comfort, warmth, entertainment"? Or do you want me to do something? Certainly made for entertaining conversation.

I did have to ask Mum about Matts teeth..."has he had them whitened"...apparently that’s what they look like when you stop drinking coffee, tea and red wine....not a bad advertisement I thought...

Given Matts loss of weight and his concern over that weight loss....I should not have been concerned when at lunch time we visited major food groups that we were only allowed to eat once we had left home....Matt was very particular...."filet o fish and 6 chicken nuggets WITH sweet and sour sauce"...and the next night he waited until I had left before Dan (his evening carer) was dispatched for the "family bucket of KFC" with a little bit of coleslaw....and let’s not forget the pizza food group that also made a showing...along with the Rutland Street fish and chips...clearly it was a week when the carrot sticks, celery, broccoli and other fibrous material had a holiday as well....

It was great to see firsthand what Matts normal week is like (apart from the food)...the Trust is fantastic as it does allow Matt to enjoy activities which at best slow the progression of the disease down, but more importantly give him the opportunity to focus on something which clearly helps him emotionally...although for the life of me I cannot understand why he and John (his masseuse) rave about "good pain"...in my book any pain is BAD pain...which is why I turned down the massage and the reflexology..(A couple of cheeky beers at lunch were good therapy for me).

The week I was in CHCH all the talk was about how the central city is a warzone and crime is surging...blah blah blah...in fact if you listened to closely you would think CHCH is turning into a third world city....seeing how people interacted with Matt gave me a great feeling...from his older neighbors asking after him and his family as we tooled along the footpath...on the way to another lunch with bad food groups, to the kids several doors down coming in to tell us his car lights were on (just as well, as they may not have been much love given to me by Zara if she came home to a flat battery), the pacific island girl at the movie theater (who clearly knew her way around the popcorn coke combo) discussing Matts ability to do wheelies in his wheelchair...and of course the many people who help Matt on a daily and weekly basis...even though they get paid (I guess a $2 charge at Burwood could be considered paid) I never once felt that Matt was being treated any differently because of his inability to move or talk...(although he does wish that I closed the curtain at the pool)...big handclaps and loud whistles to you folk...with people like them I see why Matt is able to maintain a good sense of humor.

Matt’s entertainment is somewhat more iffy....his latest love being online poker....."Only 1 click away from using real money"...although fair shake of the sav....he can't get to the credit card to type the numbers in...and having played it with him...it is just as much fun playing for funny money...without the stress....Zara's mother was there for the week...and although not voicing any concern for online poker...whisked Matt away for a lesson in Bridge so Matt will be able to enjoy more that 1 card game online...his taste for movies has clearly been affected by the disease.....insisting we go to "Ironman"...(its about a superhero not an athlete)....and then forcing Tim (the other brother who had come down from Wgtn) to take him to Street Kings..confirmed that he had indeed left his taste in the fridge.

During the week I tried very hard to get him interested in "the beautiful game" English football...to no avail...but he and Muffy (his mother-in-law) had to endure 3 mornings of me shouting at the TV urging my Chelsea team onwards and upwards (it worked as Chelsea are in the Euro Club Champ final and are still in the hunt for the league title)...we did have a couple of beers on the Friday night watching an incredibly boring Crusaders game..in fact the best part of the game was watching the southerly rain sweep across the field while were toasty warm drinking pinot and beers (in different glasses) in front of the fire.

As most days we "did lunch" I would like to comment on where we went...Aikman’s in Merivale has had a huge amount of money spent on it...clearly the inventiveness and imagination was all used up when they got to the kitchen...great place to have a few beers....lousy place for food....We still rate Bridgette’s in Merivale as fantastic...we had a very pleasant lunch with Matt and Anne Hunter (made even better that Matt Hunter paid...should've ordered that bottle of Krug....)...although there was a lot of table and chair shuffling that had to be done (all with a smile by both staff and patrons) to accommodate Matts mobile (as in Bat Mobile...not phone)...we also found a German restaurant in Poplar lane (off Litchfield)...great sausages potatoes and gravy...will definitely return there..along with good German beer...Matt even found time for a big bad apple strudel (we both still struggle with what the point of sauerkraut is...but then we are not German)...Terra Viva by the airport was "quite nice"...a bit too much hairspray and big earrings for me..food was good though...and Rutland Street fish and chips still rock! I did notice that since I last saw Matt his food has to be cut up a lot smaller as there is the danger of choking....sadly that is a real reminder about what a shitty disease MND is....BUT he still enjoys his food...

I would not like to finish this "blog" without a reference to something cultural that we did....Matt and I went for a walk in the Botanical gardens when it was a nor west day...23 degrees...leaves have turned but not yet all fallen....a good time was had...as it was school holidays we witnessed many "16 yr olds" walking hand in hand through the park....what they all had in common was that you could see the guy desperately seeking out a bench that was "out of sight" in order to more physically demonstrate his affection..while the girls was enjoying the walk and the very expensive ice-cream that was bought for her......ahhhhh to be that young...and desperate again....NOT

Anyway....time to go now..am already looking forward to the next "respite care week"

I’m sounding more and more like a drunken man at the bottom of a well

It’s certainly getting a lot harder to understand me these days, so much so that all non essential communication is being thrown out the window. My speech is still deteriorating and my left leg is weaker but overall I’m doing quite well and there doesn’t seem to be anything major going on…

About six weeks ago I had a poor breathing test with the FVC of only 38%. This is a very dangerous level that would mean the use of a Bipap machine to help my breathing. But because my face muscles are weakening my lips failed to get a good grip!!! So we agreed to redo the test and last week my FVC score was 66%. This is a 2% decline from my last correct test which was about 5 months ago… this is quite good!
I also had my three monthly check up with the Neurologist last week. We are concerned with the amount of weight loss. A lot of people comment on how well I’m looking. The reality is that weight loss also means muscle wasting. If you look at my profile on this website that links to patientslikeme.com you will see a worrying trend. In 4 months I have lost 4kg, but I have put this down to moving less and thus eating smaller amounts. According to the chart and my BMI…. I’m still obese!!!

I’ve discovered an old past time –‘doing lunch ‘. A most enjoyable way to spend an afternoon! It all started with Peter Parmenter offering to take me out and about in the van. The first outing was very funny as we spent most of the time in a petrol station as Peter attempted to find the petrol cap switch!!! Eventually having succumbed to pressure he rang Zara!! Last week was the first ‘lunch’ with all my old work collogues-new photos have been uploaded. It was a great afternoon and thank you to everyone especially Richard McIntosh who because of where he sat, had to feed me… and did a great job. Peter and I have decided to do this more often… so be warned… large ‘obese’ man in bright green wheelchair is coming to a restaurant near you!!!!

And finally here’s a small video of me doing my assisted walking with the help of Dad and filmed by zara.

Much about nothing and maybe a cure, one day!!

It has been awhile since my last report. The reason is very simple; I’ve had nothing to say. I have been on lithium now for a month or so with no side effects. It did take a while to get to the optimum blood level of 0.4 mmol/l, although the last blood test was only 0.3 mmol/l. There have been some changes with my speech deterioration and my left leg is being less responsive especially when transferring at the end of the day. Overall feeling good with nothing major going on.

I have been feeling more like a disabled person lately, rather than a person with a terminal illness. I’m looking more at how others cope, what they do with their time and the issues they face going out into the community. It’s a total mind shift but something I have become aware of. Maybe this is a sign that I’m going to stabilize!!!.... Let’s not hold our breath yet…

A friend of mine gave me a massive collection of DVD’s… and I became a junkie… watching them on my computer. Sometimes three a day every day… not particularly sociable… but have stopped now… I’ve watched them all!!!! I need to find another project and start reading again…

There has been a significant, but small scientific breakthrough. Have a look at the video. This means they are a little closer, but still a long way off from the cure.




We have some Food From Friends cookbooks left. Demand incredible - get your orders in now for those present giving days (Mother's).

Lithium

See the website link -ALS MND Lithium Treatment

This is very interesting study and something I was very excited about. I see a lot of these coming and going nearly every week. So talking to a friend of mine that also happened to be a doctor, he was able to give me a neutral view of the study. Although some flaws with the study, mainly the small number of participants I was able to get my Neurologist and doctor to give this a go with close monitoring including blood levels. So I have started taking 250mg Lithium carbonate daily.
The main thing about this is it is NOT A CURE, but may help slow the progression… so let’s just see!!

In the meantime we will keep boxing on…
In January I had my regular three monthly meeting my Neurologist and Respiratory specialist. My brother Simon and Zara came along to the Neurologist. My big question was, why and what is causing my speech problems and the answer was interesting. The message from the upper and lower neurons to my face lips and tongue are slowing down. He showed me simple examples like saying ‘memememe’ and trying to move my tongue from side to side. This gave me the idea to focus some of my therapy onto helping my facial muscles. So far we are having a face massage including inside the mouth and acupuncture… yesterday I had about 10 needles all over my face!! I am trying to get my speech language therapist that the government provides to come up with some exercises… but some reason they seem very elusive!!
The Respiratory meeting was a disaster. My FVC was very low down to 32%... which was a big shock for both of us. We believe an error may have occurred and in eight weeks we are redoing the breathing tests. At this level I am prone to chest infection, which is my worst enemy!! Every night I a practicing my breathing technique. My breathing actually feels pretty good…

We now have eight carer’s helping us at all hours day and night… it can be a very busy house hold and a little relenting at times. It’s worse when we don’t have them. We are now trying to put together backup teams… but as you may appreciate that is not an easy task!

I will keep you posted on how the lithium goes…

We still have loads of book left, but they are now being stocked by Ballantynes, Quinns, Mercato, The Press and Traiteur. The website is still up and running. Thank you for the support from everyone.

Happy new year every one

We had a great Christmas and thanks to Zara’s exceptional organizational skills there was no stress and Christmas morning with the children was fantastic, one etched with great memories for everyone. The week between Christmas and new years was going to get ugly with no down time for zara and most of the carer’s going on holiday. So I opted to go into respite care. The good thing is that I go to my parents for a whole week. I read two books and watched 14 movies and a lot of snoozing. Respite is a necessary evil but emotionally it is very difficult to cope with for everyone, especially for New Years Eve. The plan is to do it more often. My greatest fear is what starts as a few days every month will end up being full time in an institution. I don’t think I could handle that.
Had a few long lost friends from my past visit over the holiday period, which is always great to see people and just chew the fat. I imagine this would be quite hard to take time to go and visit someone who can’t talk very well and in a wheel chair. I often wonder would I visit me… the answer is most likely not! So thank you to those that made the effort.

The trust is in place and working well. In summary, last year thanks to all the generous support we were able to purchase:

• Page turner and table.
• Van with new hoist and ongoing running costs
• My TV /video watching all sorted including specialized channel changer.
• Bedding equipment.
• Computer and software at different stages of progression.
• Advertising for carer’s and training costs
• Our utility bills are covered which mean I stay warm in the winter, cool in the summer and surf the internet all day long!!
• My supplements which I purchase from USA and have recently changed most of them to liquid.
• Therapies which include massage, acupuncture, stretching, reflexology and others I have tried throughout the year.
• Hydro-therapy swimming costs including paying the carer in the pool

This year will be much the same but more focus on my communication method which may involve a specialised laptop hooked up on my chair ($25,000) that can also be used by tracking my eyes. Increased care and alternative respite options will also be required throughout the year.

As a way to start with a clean slate, I’m going through my previous news items and updating any comments, starting from the first post.
5th March – I’m now permanently in a wheelchair with some walking down the drive way and excellent weight bearing.
5th April – not taking BNG. But taking another Chinese herb mixture made up by my local herbalist.
8th March – no more wine!!.. Just beer now!
19th June – I am showered every day now… and it doesn’t really worry me anymore. I am no longer the president of the association as the numbers were dwindling and a number of our friends had died. Helping hands is still going.
31 July – gave up on Photoshop, but focusing on the garden as my project. With the help of Chris Boot who comes every Saturday morning to help and Rob and Kirsty Meates who generously helped with the bigger landscaping, I can go everywhere and have been juicing veges from the garden. Thank you.
30 August – individual funding is working like a dream with all our carer’s still in place. We have 5 which we have throughout the day and night.
07 September – organ donation is far too difficult in this country; you basically have to be in a serious accident for it to happen. But you can donate your brain!
28th September- no more choking episodes.
24th October – thumb has stopped twitching; now my thighs have been.


Great news we have more cook books that have arrived. So keep spreading the word and if know people who have missed out… tell them to hurry!!

What friends and strangers have done for me is truly amazing

So many people have helped us in so many ways, but I must tell you the story about Andrew Johnson (Jock). We started school together (Loreto College), went through some of high school together, moved in different circles but he was always someone I could call a friend. We came and went from each other’s lives over the years with the last time being our wedding. Then he hears about my condition and turns up at our first fundraising event. What he does next is truly amazing and I will be forever grateful. He turns up at our place and says –‘I’m going to plaster and paint your house’. He also, with the help of his mates organized for the plaster and scaffolding to be donated. Jock runs a team of plasters for Rockcote that is a warranty team, fixing others mistakes. Every weekend for nearly three months with the help of Gav, Lee and other mates of theirs who lent a hand they did the job. I think you will agree with me, this is an amazing kind and generous thing to do.

I have made this video to thank Jock and everyone involved.



An extract from, Paulo Coelho (warriorofthelight.com)- a little deep, but thought it summed it up nicely…..
So I let Kahlil Gibran - with his unique mastery – describe this sentiment (which I have adapted because of the size of the column):
“Your friend is the field where you sow with love and harvest with gratitude. He is your home, he is your table”.
“Even when he is silent, two hearts continue to talk”.
“When you have to leave him, don’t suffer, for you will see the importance of the friendship all the better because of this absence, just as a mountain climber sees the landscape around him better when he is far from the plains”.
“May you be able to share with your friend all that is good”.
“Let him know and share not only your moments of joy but also your moments of sorrow”.
“And know that a friend is not by your side to help you kill the time, but rather to help you enjoy life in all its fullness”

Ps- I have added some photo’s of my swimming… look and the bottom of the ‘how can I help? ‘Page

I would also like to thank Damien Monley and Justine Israel who own the Flat White restaurant in Sydney. They came up with an idea to put together a regular event called –fundraising foodie. As we knew each other they made me their first event. It’s a very humbling and strange feeling knowing people who had come along to their event didn’t know me!!! They raised an amazing amount and the night was a lot of fun and a huge success. Thank you to everyone involved.

Thank you to our friends who have done so much for us this year. Sometimes thank you never seems enough, but it is all I can say. I hope it’s enough.

Have a happy Christmas and New Year. I know I will be.
  

3 monthly Respiratory check up gave me a ‘stable’ report.

After the normal tests my FVC was 68% that’s only a 2% decrease in three months -you could almost call that a margin of error!! So that is very good.
A friend asked me the other day, how is it going and has anything changed. It made me think about ‘how does it feel’ when suddenly something doesn’t work and how do you articulate this. The change every day is extremely subtle, although the twitching is a sign. You really don’t know that anything drastic is happening. When you try to do something suddenly you realize you can’t do it anymore. The other day I went to scratch my nose and realized I couldn’t!!! it’s the little things that annoy you. You start to think things are going well and ‘whammo’ something goes, which can be the real frustrating thing with this disease. But all the treatments, supplements and mental attitude are there to try to slow the progression. By how much is the question… so keep watching and we will find out together!!

Thank you to you all, as the trust has purchased a Gewa page turner. This is fantastic and another item that gives some of my independence back. I’m onto my second book already!!!

Food from friends has been a huge success. We have sold out of the first print with the second print due in December-hopefully. If we were selling them in book stores it would be in the best seller list in New Zealand which is an amazing feat. Thank you to everyone who has help make this book a success. Keep spreading the word so we sell out of the second edition as well!!!

Can you believe that I broke the van lift!!! I was out at the movies with my brother in law when the lift got stuck halfway out…. Luckily I wasn’t on it!! But that was the fourth time we had problems with it and I didn’t want to risk it anymore. The lift came with the van which was not designed to lift a 150kg power wheelchair, let alone with me sitting in it. So, out with the old and in with a new hydraulic correct wheelchair lift. I feel a lot safer now although the new lift was not cheap.

I have discovered the most amazing thing to sleep on –a ‘slippery sam’. This is a very slippery fabric that you fold in half and lie on. Now moving around is no longer a real effort and I’m no longer cast!! But be careful…. one morning a carer just about dragged me out of bed nearly landing on the floor!

I took Harriet on my wheelchair by ourselves to school today which was fantastic… driving all the way up to the classroom steps like some limo driver!! Kissing goodbye and of she went. I really enjoyed that.

It’s quite hard when you have a mild head cold and all you want to do is blow your nose.

Last week I reached that great milestone and ‘walked’ Harriet to school. I think we were both very happy to be doing it. Unfortunately she bought home a cold to share. I had been so proud of myself as over winter I had remained cold free. On the first day of summer, I get a head cold!! But I am over the worst of it now, apart from the ‘snotty’ nose. A cold is my worst enemy as it speeds up my progression, makes me feel rotten and there is a real concern it may get into your chest causing respiratory problems.

The only obvious deterioration is my left hand thumb has been twitching madly which effects my mouse movements. For me when a particular muscle starts twitching it means it is under attack. What is really happening is that the nerve is losing its connection with the muscle and the muscle is turning up the ‘volume’ looking for and clear message, hence the twitching and fasciculation (This is how I describe what is happening from my own research. I find it a good way to work out what is happening with my body and to plan ahead.

I would like to thank everyone for the huge amount of support you have given to ‘food from friends ‘, it is still selling extremely well, so keep spreading the word. A real bonus for me out of this is a lot of people are becoming more aware of MND and this may lift its profile and even get some smart people looking for a cure!!

I have got a new mattress which has little pockets of air, called a Roho. It takes a while to get used to as you are basically cast. But it has stopped me getting sore hips as I can only sleep on my side and can no longer move around.

A really big thank you to Terence McLaughlin, a good friend and old flat mate, who has built us a fantastic fence down the driveway. He has given up his weekends and time away from his own family to do this for us, so we can all play safely down the driveway. Thank you to Rachael, his wife for her support especially since the weekends was her time of. The fence has been painted by Zara, Adrienne (Zara ‘s mum) Bill Kingston, Jessmay and the ‘helping hands‘ boys. Thank you.

The article about the cook book in today’s paper

Just a quick note to the link for the article in the Christchurch press this morning.

Click below:
The heartfelt gift of recipes

And also

Food From Friends: the book for Matthew

Thank you to everyone, the response has been amazing.

Food from friends fundraising cook book is here ...

Earlier in the year we were having dinner at my parents and mum asked how she could help to raise money for the trust. That’s when the cook book idea took shape. My mum, Kate Fraser is the editor of the food/fashion feature section, Zest for The Press here in Christchurch and the winner of a number of food writing awards. She knows a lot of people in the industry from food writers to chefs and cooks in New Zealand and around the globe. When asked the response was immediate and overwhelming.

Everything in this book has been donated, from the recipes, the photography, book design and layout and my mum who has tirelessly worked so so hard on making this book reality. Thank you.

A special thank you to Greg Donaldson, who has built this website and the new one for the cook book. He has done an amazing job, without him these website’s wouldn’t exist .

Let’s spread the word to as many people as possible. Check out the new website and order forms to help spread the word. Online ordering is also available.

Click and order at: Food from Friends

It’s been a week of birthdays and milestones

It was Harriet’s big 5th last Saturday which was a milestone for both of us. Zara had planned a really great party. A simple party with great games and no other parents! Zara did an amazing job with everyone having loads of fun. It was our first party where I couldn’t really help. I have made a small video of the day, just email me if want to see it!

A few days later was my birthday. YIPEE. I made another year, now 37 with 40 firmly set in my sites. Who would have thought it would be a day I would be looking forward to! My birthday was an odd day, a day of milestones in a lot of ways. For some strange reason I became more aware of how hard it is to be understood and for me to form a lot of the words. The best way to describe it - is as I’m sure a lot of you can relate to, is like travelling through a foreign country and nobody understanding. It can be very amusing! But only I get the joke, most of the time. In the evening my sister in-laws cooked and came for dinner along with my mum and dad and Zara’s mum. It was a great evening apart from my first choking episode. This was very real with everything becoming blurry (unless it was the Belgium beer!). I had learnt from reading from other MNDers that if you just relax it will pass. Just when I thought things were going well MND comes and gives you a swift kick saying …’uh huh I’m not finished with you yet…’.This is very much up there with my first fall…a realisation where eating & talking will become a thing of the past. So maybe it’s time for some junk food while I can!

I have included a wee video of the diner and also my massage therapist with keen helpers!

There is a new fundraising event about to begin …but all will be revealed soon!

We have also been getting some help from amazing friends but I will tell you all about it when it’s all done… it is truly amazing what they have done….

3 monthly check up with neurologist…

…was yesterday and I have to say they are proving to be really good days. It was a fantastic spring day and really warm day. I had my massage in the morning, which always puts me in a good space. Zara, Margot and I all piled into the van to head to the hospital.

After the normal ‘what’s going on’, the topic moved to organ donation. This is something I am seriously considering. I feel this could be my way to help a lot of people; after all I’m not going to need the ‘body’. I need to gather the facts before we do anything. With the things I am doing to my organs they will be in amazing condition, almost pink! I don’t think Trademe would be a good option!!!

Nothing else was covered except a little about what therapies I am doing and how we are working with the health system to get maximum help. There is a lot we do that may help his other patients.

Margot fell asleep through all of this which amused everyone!

We then walked through the botanic gardens with the daffodils all out…I’ll add the new photo!

Back in the van we headed to garden centre as this is my new project, doing up the garden! After a long lazy lunch in the sun (because I can!!)…it was time to pick Harriet & Damian from pre-school.

Za & I had a really good day out…doing normal things…the best kind of therapy!!

The past few weeks have been very stressful, because all of our carers resigned all within a week. That will teach me to write down how well everything was going!

The past few weeks have been very stressful, because all of our carers resigned all within a week. That will teach me to write down how well everything was going!

It will be useful to explain why we believe getting the right carers for the family is so important. I have just read Jack Orchards book, which has ALS and set up extra hands. I was really surprised to read, like a few PALS; that his wife had left him. It got me thinking how /why zara and I are so strong. Sure we have our bad days, but that’s because of the many frustrations of this disease nothing more than that. But without realising it we have discovered a way where we can both have a normal way of life (within reason!).

What people forget is that MND affects not only the person who has been diagnosed but the partner or wife on a more emotional and physical level both with dealing with a diagnosis and all of the needs they are going to endure. I am sure a lot of people would think ‘why does she need so much help’ or ‘surely she can cope with a lot more’. But the way we have chosen to approach this is where possible hand all of my personal care over to carers and supporting family so that we maintain a normal as possible relationship that does not become burdened with simply being about caring duties. The flip side to this is a heavy reliant on carers (which entails lose of my dignity among other things), having a lot of people in the house (which we lose our privacy) and having to be extremely organized. But these negatives are very minor in the grand scale of things and this system we have developed allows us to be fairly normal family and for Zara and I to be in a really good space. I realize this is very self centered but my thoughts may help others in similar situations.

Then it all turned to custard when the carers all resigned within the same week a few weeks ago, due to issues with their agency. We all went into overdrive trying to find replacements as we knew the agency would not find us someone in time would send us an inappropriate person or worse still loads of temporary carers for each day of the week! After many requests and this latest run in with the carer agency, we have been approved for what is known as Individual Funding. This basically means we are now fully responsible for hiring and training our own pool of carers at a much higher rate than what a carer would earn via an agency and without the huge hassle and stress they cause. We are finally in control of our own destiny! What a difference this has made already with really amazing people already coming forward.

This week we bought Harriet her school uniform in anticipation of her first day at school in October. This first day of school will be a very big milestone in my list of goals. I remember on the day of diagnosis bawling my eyes out realising that I would not see Harriet off to her first day of school. But that was then, and I have come a long way emotionally -we’re my new goal is to make sure I am there for Damian and Margot’s first days of school.

My voice is although has a good volume is very difficult to understand and quite ‘slurry’. Za is often repeating my words/sentences which is great. The rest of the body is feeling good with no obvious signs of weakness, so lots more of the same with positive thinking. Now that I have now written it down it will all fall part!

As much as we were sad to see the carers go, I am excited by the new ones coming onboard. I am even putting a ‘user manual’ together! I wonder what little treats I could sneak in there for me!!!

My trip to the Respiratory specialist

23rd of July – I headed to an appointment with the respiratory specialist in the morning with Za using the van. I have to admit that I was a little apprehensive. Although I have been feeling pretty good this month when it comes to your breathing, you can never take it for granted. A few days before you have your appointment you undergo a sleep test. This basically means you take a small machine home, which connects to your finger and measures your blood oxygen levels. In the morning you undertake another test testing among other things forced vital capacity (FVC). On my previous test only scored 50%...this time around I did really well, obtaining 70%. I must be doing something right and it is always positive to have something going against the trend.
I am now using a website that will be able to chart my progression and to see if we can really slow this down. It also shows all the treatments I am doing.
my profile on patients like me

Notes for my profile:
Functional Rating Scale (FRS) score helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs.
Forced Vital Capacity (FVC) score measures your lung strength and is an important indicator of overall progress.

With the arrival of the van and the freezing temperature’s it was proving difficult to get to the office. It made more sense to stay at home…so I am now retired. I am enjoying being home as I have everything here without being extra work for Zara. Now my next challenge is to keep my mind busy with little projects and I am contemplating doing some training on how to use Photoshop and maybe do something around that.

I had a friend Stephen Greening who owns a civil construction company called Land Form turn up a few weeks ago to ‘do’ our driveway with tar seal. This was just amazing and very generous, as I can now bomb up and down the driveway with kids on the bikes. There was alot of laughter. I did make the mistake of showing Damian (3yrs) how to drive the wheelchair….not a good idea as he kept driving us into the garden!! …with great fits of laughter!

A special thanks to TMP Worldwide and Cliff Haydon from London. This is my old employer from UK days and Cliff who is now the manager, had to put up with me (and my music) as we worked together with a number of clients. They held a comedy night in the bar (with some proper stand up comedians – one was a Perrier award nominee). and held a Laffle – like a raffle but with laughs. TMP matched the amount raised. It is truly amazing what everyone did…thank you very much!!

We have the carer situation under control at the moment with really brilliant people. Although it does mean a lot of different people in the home which is very difficult for everybody, however the alternative does not bear thinking about. We now have a carer everyday in the morning including the weekend and every weekday evening. Hopefully it will stay stable like this for a while.

Food is perhaps the hardest thing for us as a family. Za does an amazing job making sure that our children eat a well balanced diet, which can be very difficult at times. She does a truly amazing job where an easier option could suffice, but the children would suffer. However with also having to deal with all my little requests (which is like Chinese torture for Za) thinking about food for us or the children can be just to much. We have been very lucky to have wonderful friends and family who have cooked delicious meals for us or who have come and taken over the kitchen. Thank you to Kate Fraser (my mum!) who is forever cooking for us, Sue Francis & Sue Idiens who take turns delivering meals on a Saturday, Kristy & Angus Binnie who came and did a wonderful breakfast on Sunday, Victoria Wynn Thomas for amazing vegetarian dishes, Paul & Kez Anderson who help cook with friends and Ann Bergman who whenever is in town cooks a ‘mean’ breakfast.

I am in a good space at the moment and things don’t seem to be getting worse which is helping. My speaking is not flash, but it’s a matter of choosing my words carefully.

Another fellow fighter succumbs to this mongrel disease.

Anne Glengarry died on Wednesday at the age of 64 with her family around her and peacefully. Anne was in our alternative therapy group (which was setup by Paul Blacklow). She was always at the meetings and also a regular at the monthly MND meeting. I really enjoyed sitting with both her and graham and talking through the different therapies. She was always keen to give most things a go! Anne always had calmness about her and she will be missed.

I think Anne had MND for about 4yrs, so I am doing ok coming upto 3…I will keep working on finding ways to slow down the progression and hope a medical break through is only around the corner, before my time is up!!

MND helping hands is off to a great start with 20 boys wanting to help and 4 families. We got 4 boys a few weeks ago and it was huge success …have a look at the photo’s.

The van has arrived and launching MND helping hands.

The van arrived last week for a fitting, which was amazing to finally see it. Unfortunately it had to to be taken away for some minor adjustments, but it is now back ready for the first trip – ‘the exhibit you ball’, with all the proceeds going to the MND Assocation. A special thank you to Richard Peebles and Adam McCormick (Bling Bling) for organising everything including shipping it in from Japan and to the other individuals noted below who also contributed to the van and all the fundraising that has gone on. Thank you.
Ferry Oak Properties
Craig Webster
James Legget, White Fox and Jones
Mark MaCauley, CBRE
Adrian and Paula Raine, Graeme Donaldson-Ray White
BodyTech, Steve Kaminski, welding and seat Installation
Banks Car Upholstery, Carpets to Van
John Kitley Owner Bling Bling Motor Co, Importation of Van and organizing everything
Adam McCormack, Bling Bling..He did all the work really and organized everything. He deserve a medal, it was no easy Task
Aucsat, Vehicle Importation firm, Blair Robinson. Discounted the importation costs


Some of you may not know that I am the President of the MND Canterbury branch. I have been looking for a way to increase the profile of MND in Canterbury and a way that perhaps we could help other people living with this condition. I came up with the concept of where school students volunteer their time to help those with the sort of jobs that get moved down the “to-do” list due to lack of time, for example, painting a fence, mowing a lawn, walking a dog or simply doing a odd jobs as simple as changing light bulbs! Although I got this idea from a similar scheme in the USA they have given me their full approval to adopt it here. So on Thursday 7th June I went to St Bedes Collage to launch the New Zealand concept – MND Helping Hands. This is a fitting way to launch the scheme given three old boys (two have died recently) have had MND. The presentation went really well, with Paul Anderson, a good friend and an old boy, introducing the scheme on my behalf and Jo Kleiner the widow of Matt Ockwell talked about how the boys can get involved and come and help the families. Hopefully the scheme will take hold around the country as I have introduced it to all the other branches at a National meeting I attended in Wellington six weeks ago and everyone was excited by the prospects of it.

We have a small video of the assembly-sorry about the poor quality of the sound and video.


I would like to make a special mention of my father Chad Fraser. He has and still is being extremely helpful everyday with taking me around in the car, making and feeding me lunch and toileting me. I really enjoy this time (not the toilet bit) we are having together and it has been fun having him in my life on a daily basis although I am sure he has wondered what he got himself into……especially when I have got him texting on my mobile phone and getting him to order McDonalds (a one off!) through the drive through…..an experience I think he will always remember! I would be very stranded without him.

My progress- my talking continues to be the main area of frustration, with some days it being very hard to understand me. I am on the hunt for software for all my communication needs and I think I have found it in EZ Keys- used by a lot of mnd/als people.

I have some useful points when you are talking to someone with MND who is losing or lost their ability to communicate. Even I have found myself doing some of these when I first was diagnosed and talking to other fellow fighters:
1. We are not deaf or stupid, I know we sound like it…talk to us normally.
2. Don’t expect long riveting conversation, more like simple one liners. You talk we will listen.
3. yes/no conversation are good
4. If you don’t understand, please don’t pretend you do…just say so and keep trying.
5. Don’t ask ‘are you alright’ or ‘how are you’, you will only get the standard answer – ‘yeah good’. You wouldn’t want to hear the real answer and it would take me to long. Talk about other things, normal things.

I have had very big milestone this week. I have finally succumbed to let someone else shower me. After over a year it was asking to much of Zara with everything she has to do, 7 days a week. This rates right up with my fear when I couldn’t wipe my own bottom or dress myself. I don’t think I will ever be comfortable with it, in fact if I had the choice between that and losing my voice I would choose losing my voice any day. Odd I know, but that is the way it is. I have to now get on with it. There will be more events like this, which I will have to overcome. Since the last update we have found a fantastic evening carer, so now with two amazing carers in the morning and evening in place all we now need is the weekend and swim covered and we will be good for now!

A hugely successful day had at the REINZ golf day.

A special thank you to the 160 people who played on the day, the weather was perfect with the BBQ providing good sustenance and the beer and whiskey helping with many a swing! Everybody had a great day.

Thank you to everyone who sponsored a hole and donated prices for the golfers, raffles and auction. The items were very generous including LCD TV’s, stereos and sporting memorabilia. It would take all week to type all the names of the winners of the auction items, but thank you.

We had a number of family teams who were playing including the Methven’s, Sparrow’s, Anderson’s and my brother Tim – thanks guys for making the effort especially those who flew in from Auckland, Wellington and Sydney.

A big thank you to Dean Mackenzie, Harry van Tongeren, Jude Fussell and everyone else that have worked behind the scenes from the Canterbury, Real Estate Institute branch … here is article that appeared in the reinz magazine: challenge beyond the call

A special thanks to the trustees, Greg, Simon and Judy-…..they are truly astounding with their drive, energy and commitment towards the trust and we are forever grateful for the work they have done for my family and I.

On me:
The voice is losing the battle with a lot of people finding it difficult to understand me, which also means the software i use to e-mail is getting very slow with me using a on screen keyboard almost all of the time. I will have to start looking at different types of technology that can do the speaking for me soon.
I have finished with the Chinese herbs, which as suspected had no real benefit…. so I am back on my regular supplements. Let us see if that makes any difference!

We have had a wonderful evening carer, laurel, who came to us via Zara’s sister. Unfortunately she had to move on as she was heading over to Italy. The agency had over a month to find a replacement…. which they did in the last week. Now after a week of training, we have been told that he is not coming back as I am classified now as a complex care! What this means is that zara will now have to do everything, which is to much for anyone especially with no rest in sight. Hang on ….we are in for a bumpy ride ahead!!



By the way, check out the video on home page and the photo’s from the golf….

The below wee video is the radio extract of a surprise visit we had for the golf….

The Neurologist 3 monthly check-up (although it has been five months!!)

Last week we went to the hospital for a checkup. It was such a nice autumn day that I drove there in my wheelchair with Zara and Margot walking along side. Nothing really the specialist can say or do. But he is a nice guy and so we often talk about lots of different things relating to my condition. It is a good way for me to discuss some of my theories and ideas with him to get a medical perspective.

He is keen to introduce the concept of a PEG (Per-cutaneous Endoscopic Gastrostomy), sooner rather than later. This basically means they insert a feeding tube into my stomach which pokes out my side. This is used when your swallowing muscles are affected and it is harder to chew and swallow food. The trick is to not leave it to long…otherwise the recovery from the operation would be hard. Maybe near the end of the year for me!!.
Dealing with the effects of MND

No real obvious progression of my condition, just the legs a little wobbly and the voice a little sluggish. I am still taking the Chinese herbs. I have had a very nasty dry cough for the last week but we have managed to get it under control with acupuncture and juicing oranges and carrots.

By the way I have added the names manually to receive this notice. please let others know as they can add themselves via the website. I can also remove people, if they want.

How is my progress, what is happening to me

It has been a while since I gave everyone a good update

I am relying on the wheelchair a lot more these days as have now realised that I can still walk but only when somebody is holding my arms and them walking backwards. There are going to be a lot more of changes in my body as I spend more time in the chair, but we will face that when they happen. I am trying to keep walking for as long as possible

My voice has been affected for a while now and is certainly getting harder to understand me. I am using voice activated software with a on screen keyboard to do all of my typing and e-mails, but this is getting harder and taking longer especially in the afternoons. So if you get a short e-mail, it is not me being rude just part of the process. There are several things that impact your voice. A weakness of your upper palate which basically means wind goes out your nose! Other areas include a shrinking of your tounge and weakness of breath. At the moment the breathing is still feeling quite strong. The tongue is getting smaller but not at a fast rate-this has only really affected my ability to drink wine, with my preference being now ‘stickies’ as I have found with the tounge shrinking the taste buds have also changed.

The arms and hands are probably the most noticeable change. Although I can move them around they are certainly a lot weaker with the ability to do simple tasks almost impossible. I am now being feed and cannot scratch my head which is probably the most frustrating. But I can still hug zara and the children.

Had my first swim in the hydrotherapy pool and it was amazing. I was able to move around with so much ease. The acupuncture has been helping with my circulation which has meant I have not been feeling the cold so much.

We are updating the website with a video and other stuff very soon.

Real Estate Institute of New Zealand - Charity Golf Day for the Charitable Trust

The Real Estate fraternity of Canterbury have rallied together to put on a Charity Golf Day - "Team Ambrose Event"

If you are not a golfer you could be the sponsor of a hole, this is only $200, contact REINZ Canterbury.

The golf details are:

To be held on 25 May 2007
Coringa Golf Club, McLeans Island, Harewood
Registration 11.30am SHARP

* Team prizes
* Longest drive competition
* Closest to the pin competition
* Watering hole
* Sausage sizzle
* On course refreshments
* After match function, raffle and auction

For an entry form contact
REINZ Christchurch office
Phone 03 3663 660
or
Deane McKenzie
President C & W District Committee
Ph 0274 352 384 or 379 6596


Entries close 12 noon, Monday 21 May 2007


I look forward to seeing some of you there!!

It's all about needles and TV...

The last couple of weeks have been very busy for me, now that the Trust has been set up and running…thank you to everybody that has donated so generously…
So what have we been up to you may ask?
Well, to give you an idea I have now got myself receiving a weekly massage, two sessions of acupuncture a week and have managed to wrangle the system a little and got myself into the Burwood Hydro therapy pool. They say that there may be no real benefit of the hydro therapy pool but surely it is worth trying and giving my muscles some good stretching.
So my week is starting to fill up with more therapies than actually anything else…I will have to be careful I do not wear myself out.
My week looks like this:
Monday – acupuncture Wednesday – reiki Thuirsday – massage Friday – acupuncture and hydro therapy
I have only had two sessions of acupuncture and have found them to be excellent in a way that is very difficult to describe…I will keep you posted. I will get a photograph taken of the 28 needles all over my body including my head!
The wheelchair van purchase is underway and hopefully we will have more to say soon. ..I am looking forward to having this so we can get out and about.
A big thank you to Pete and Helene Harrison, who very generously have paid for the first year’s Sky subscription…just in time for the cricket and sailing…I promise not to watch too much porn!
I have had the Burwood Technology people around and we have set up an automatic remote control that I can now operate the TV/DVD without asking for any help…as simple as that sounds it has given me more freedom than you could imagine!

WOW! What a night ... a big thank you. On Monday we had our first charity event. It was a huge success with around 220 people.

On Monday we had our first charity event. It was a huge success with around 220 people. I should apologise to a lot of our friends who were unable to get tickets as they had sold out in two days. This event was organised by the trustees and they only had two weeks to put everything together. They did a fantastic job and made it the success it was. A special thank you to all of those people who donated gifts and services for the auction-this part of the evening was again, a huge success and thank you to those who won!

I am extremely overwhelmed and humbled by the generosity of so many people. I will keep you posted on the things we use the money for.

I was very tired at the end of it and took the next day of from going into the office.

On the morning of the charity event I had asked my doctor to come and see me. I was developing the flu. This is the public enemy number one for anyone with MND. Your body has to work extra hard to fight this and it can lead to respiratory problems. I am now on antibiotics which has certainly done the job apart from the odd nasty cough. Hopefully will go as smoothly over winter.

I am trialing a new Chinese herb called-BNG which is a cocktail of chinese medicine. I am very skeptical that this will do anything, but I am using the left overs from Paul Blacklow. I have about two months worth, so we will see what happens.

I have the new bed arriving for smaller people!

We have been trying a hoist out this morning. This will enable people to move me from chair to bed with some ease by using a hydraulic arm to lift me in a sling.

I am not fat!-broken equipment and the wrong size bed!

They said it couldn't be broken-but yours truly has managed to break the wheelchair. Apparently I have stuffed the drive motor! ... maybe I should stop trying to go cross country. See the photographs for my new temporary wheelchair (the office chair)

I have been trying a new bed ... which I have now found out that the occupational therapist ordered the wrong mattress ... apparently the one I have is for really fat people! ... I need a much softer than one. I need to get the right one as turning in bed has now become a real mission. With all the noise I make, I am waking zara up at least 3-4 times a night ... and as you can imagine it can be frustrating for both of us! Hopefully with the correct mattress we can all get a full night's sleep.

I have been doing too much lately and have developed a sore throat. Not too bad you might say, but I need to be careful with any kind of infection as it could also lead to a chest infection which is the big enemy! This morning I woke up coughing, spluttering and gasping for air ... which is all because I had a scratchy throat.

Paul Blacklow's- funeral

All of us, apart from Margot went to the funeral which was held in the school hall, Wednesday 14th March. It took a lot of concentration and controlled breathing not to start crying. There is an unusual side effect of this disease that you can get uncontrollable laughing or crying and once that starts it and can get quite embarrassing. It was a very good service with a huge amount of people making the effort. It was certainly good to see how he planned everything that he wanted and gave me some fantastic ideas for mine. It was very difficult to watch his mother walking out behind the coffin ... that for me was the most upsetting. On the way home, Harriet asked what did Paul die of ... and we are told her that it was called Motor Neurone Disease, which is what daddy has. You could almost hear her brain absorbing that information, but not quite sure what to do with it.

A fellow fighter dies.

It is with great sadness that Paul Blacklow past away peacefully yesterday morning around 6 a.m. Paul and I were fighting this disease in our own way but always sharing our information and ideas. He was of great inspiration in taking on the battle head on. He was a year behind me at school (St Bedes College) and leaves behind him a young family very similar to myself. Paul had Motor Neurone Disease for 4 1/2 years. I am actually happy for him, now that he is free of his everyday struggle. I am sad for his children.

We are launching a fund raising event at the Christchurch Casino.

We are launching a fund raising event at the Christchurch Casino on the second of April - a Gourmet Dinner - A Taste of Canterbury: a gourmet experience of Canterbury food and wines. Ticket prices are $65 per person . The money raised will go towards a new wheelchair van. For more details please contact Greg Horgan (greg@mbcook.co.nz).

The new wheelchair arrived today.

The new wheelchair arrived today and it is very sporting ... it even comes with hydraulics to make the ride smoother. We will now be able to have running races in the park. I have now decided to start wearing foot braces so that when I walk my foot will not drop and catch. This hopefully should stop any potential falling. It is like wearing ski boots in the summer including the tight feeling you get across the top of the foot!