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