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!
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!
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.
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...
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 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.
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