Matthew Fraser MND Charitable Trust

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.