Talking about degenerating cells and scooters, I need a new battery for my scooter!!! Pity I can't get one for my brain though.
lol - indeed!
Been out exploring on mine but still got cold hands.Surprising how slow I had got .No wonder the dog wasn;t tired an d i was!!
Your story is exactly the same as mine! I am 60 and was diagnosed 8 years ago when I was still working- since then I have taken early retirement and now use an electric wheelchair. I feel fine its just an inconvenience, and feel very privileged - I do voluntary work and can choose what I do, helping others more worse of than me, makes me feel a bit of a fraud! My main problem is fatigue, although some of it is because I do lots. I still go to the London Hospital once a year but they have no idea why my cerebellum cells are dying. They have no idea of my prognosis is, but I shall just keep as busy as I can, as long as I can!
That all sounds very familiar Judith - keep up the good work and thanks for sharing.
I wanted to mention that I have Spratic SCA. Classified in 2006. I have an MRI ever 2 yrs to see the progression of my cerebellum. The last 3 there hasn't been any more! :0) I'm so jazzed about this.
My Dr. said it's not possible, no one has ever stoped the progression once it starts. I told him there was always a first time. Why not?
I believe it's from letting go of of a few things, doing a real life style turn around by not having Gluten (flour), refined sugars, alcohol, preservitives, anything in a box or package. Having mostly Organic (when possible) no caffeine, being on a shedual of eating.(Not living to eat eat to live I never understood that before now). Eating enough, having enough water daily, sleeping enough (sometimes more than what I want to) limiting toxin exposure,giving my body what it needs not wants, and regular movements (exersize) mentally and phsically, emotionally and spirituallly!
I do deal with lot's of fatigue, my gait isn't good and a few other things like my balance etc. But I'm hopeful that once I get rid of this fatigue etc., I'll be much better!
I still have lot's of symtoms of Ataxia I have to deal with, but the fear of it progressing now has gone for me. I think the Dr's are looking at me now more and tracking this. Now that I have proff it's great to show them and get their responses. People think because it's only foods that that can't be but I've heard about this happening to Dr.'s etc.
Sorry, just had to share this new's. It's not easy to maintain unless I have a reason to. Seeing my MRI gives me one! :0)
I have cerebellar ataxia of no known cause diagnosed in 2009. I am still waiting for the results of genetic testing but in the meantime am doing lots of positive things to find out more.
I have always had food intolerances so have just visited a kiniesologist for the first time. I have now found that apart from gluten I am intolerant to many foods and also have candida. It is early days but am hopeful that the change of diet will help.
Since starting the change of eating habits I have noticed that gradually I am feeling better. The ataxia is still there but am optimistic.
They think mine was caused from a combination of chronic Congenital Hypothyroidism (from birth) and its complications on a growing brain and the epilepsy meds I was on in childhood which are now longer prescribed to young children, and I was also on some from my lat year of university (2007) which caused some weird side effects to say the least!
I don't believe I actually had epilepsy at uni (though I did have it in childhood) as I don't remember ever actually losing consciousness but my arms and legs would twitch and body shake. One specialist I've seen now believes this was the onset of Dystonia and they were dystonic storms rather than epileptic seizures... but can't explain why they went away, and didn't come back when I stopped the epilepsy meds a few years later.
Neither can they explain why ataxia was then my first symptom in 2003, though I had some symptoms in 2002 (vision going in and out focus and difficulty seeing in the dark, back pain attacks started in october 2002 and calves stiffening, I remember borrowing a mobilty scooter for first time for day out xmas shopping before I had to go in wheelchair) .. although again the stiffening could also be a dystonia thing.. my balance problems didn't get so bad until Feb 2003 when I was admitted to neuro ward for emergency MRI to see if I had MS!
When I started struggling with speech and fine motor co-ordination too I was diagnosed with Ataxia. After I hit 40 I started getting an increase in problems with muscle spasms and involuntary movements that were not explained by the ataxia diagnosis. I started getting attacks of muscles shaking again but this time I knew I was fully conscious so it couldn't be epilepsy so refused to go on the meds, I mentioned this happened at uni and thought I had been incorrectly diagnosed. Dystonia was still not mentioned I found that after research on internet to look for something that resembled cerebral palsy but started in adulthood as so many people assumed that was I had. .. and came up with Adult onset dystonia which often mimics athetoid CP.. so wrote back to Neuro again sending the new info and she arranged for me to see her when they were having a visit from a Neurologist fro the Walton Centre of Neurology (Liverpool) .. I didn't catch his name but he had apparently seen cases of Ataxia and Dystonia and could distinguish between them!
He came to the conclusion I had an unusual combination of symptoms from both which on their own would leave me with a mild disability but together affected all my voluntary movement by this time except my eye movement but I do still have night vision problems and difficulty judging depth/distance in dark/low light... which is not present in dystonia alone. He said he would class it as Ataxic-Dystonic Quadriplegia (all 4 limbs affected and speech muscles) which no one has ever heard of even some medical professionals so I just say 'I have a rare neurological condition which affects my ability control my muscles' if anyone asks as usually they have never heard of ataxia or dystonia on their own anyway to know what I mean!
I also tried going gluten free but had no affects other than weight loss! .. so the Ataxia part is not due to a gluten intolerance, exercise has worked best for me.
I agree with Kati Lea.I don't think diet for me will work apart from getting slimmer and being a pain when eating out.I did do all the research,looked back atwhat some said on this site,and looked at all the tests i had had. They don;t know what caused my Cerebellar Degenation/Ataxia .I do know it helps to have a label for forms .etc.I have difficulties now wit speech but it doesn't seem like the others with ataxia.There is only little slurring but I don't understand what is making it so diffiicult>I don't have dystonia like you Kati?Do you get mistaken for Parkinson's.I didn't realise you had ataxia for a relatively short time although it must seem an age.Like Iain I am grateful for what I still have and can enjoy myself with my little routines.It does frustrating though.I am trying to get the balance right between exercise and moving safely.At the moment I furniture walk and it can be quite frigtening.I want to keep fit though. It seems it is all about choices.When do I go to a wheelchair inside.?There is the choice between manual and electric.Where do you store it etc.I realise some people do not have the same choices.I just know that moving around inside is difficult.I suppose yet again I must embrace the changes.It is difficult to explain our disease as people do ask.They have never heard of Ataxia That's a good explanation Kati.It seems some of us have additoinal complications with our ataxia. I feel very lucky to be living with someone who can help. I think anyone lliving on their own is very brave.We never know what is round the corner.Hopfully a cure for CA??
my major difficulties with balance and walking didn't start until 2003 I was using a stick from when I came out of hospital for outdoors but indoors hanging onto furniture but my flat was tiny so was always something to hold onto! I was issued first manual wheelchair for full time use in 2005... I used vouchers and got a Quickie Easymax. (the blue one in my pics).. the silver one is the Da Vinci one I had made custom built for brothers wedding in 2008 as needed one that folded as small as possible to fit in small car boot with lots of other bags and suitcases (for getting up to reception!) My quickie took up the back seat even with wheels off and everyone was car sharing 4-5 to a car!!
I use a rollator with a seat to get about house for ages, this was fine when I could manage to stand to reach into cupboards but my arms are so jerky I can't lean on them whilst reaching with the other and was falling over and things dropping on me. I use powerchair for jobs around kitchen or where I need the seat riser function and at other times I sit on rollator seat and scoot around backwards pushing with my legs,, that way they still get exercise even though walking is more challenging so I don't do it as much.
The balance belt really helped me I can now do some of those exercises without it and am steadier on crutches (with weighted splints on as well to stop hands flexing and letting go of grip) It is a pain cos I have to wear the special boots and splints too so my feet stay flat on the ground, (or the footplate on chair) otherwise my feet tend to stay in a flexed position (toes going under) hanging down when sat in chair and have difficulty keeping heel on floor, it tends to throw me backwards so used to end up toe walking when I could still do hanging onto furniture without falling over too much.
The NHS assessor for powerchair wanted to strap my feet down so they stayed still on footplate and don't get trapped, but I can't keep balance to lean right forward to undo the velcro from that position and wouldn't be able to fasten them in either myself... also can use my feet for somethings to reach things on floor and pull them towards me then Inca knows what I'm trying to tell her to pick up for me ie if dropped tv remote etc...can't do that if they are always tied down!
If you have enough room indoors can you use a rollator with a seat then if your struggling with walking with it can still sit on it and scoot from room to room. I don't sit in my powerchair all day, I'd rather lie on sofa.. I use mine for certain jobs and sitting out in garden in summer, getting down to doctors surgery etc. As its huge and non folding I can't get it in families cars so use the Da Vinci chair as it fits in a saloon boot (brother has a Audi) they usually push anyway as usually we only going for meal or something, so I can slide under tables better... but I wouldn't be able to live independently at home without use of a powered chair/scooter and internet access for banking/shopping as its so expensive to get to town.
I know exactly how you feel. I walk in the house but I have a wheelchair just for the days that are bad. I have a stairlift as well but only use it on my off days. I figure that walking up and down stairs is the only excersize I get somedays. I have found that the local gym is accessible and go once a week,, to work on my upper body strength. I used to swim but I cant get out of the pool. There is another pool that has a chair hoist, but I refuse to be the big fat lady in the chair!! I also do wheelchair aerobics at the local health centre, its really for senior citizens but I find it helps. I find the fategue is the worst thing I have to battle with. So I take lots of rest breaks. I was like you and didn't want to go into a wheelchair but once I did I was able to do so much more. I have an electric wheelchair which goes in my car and I can drive from it. The wheelchair is a godsend - before I was staggering about feeling exausted all the time. Now that I am using a wheelchair I can do so much more.
I can see that having a power wheelchair is 'the way forward' [excuse pun] for younger people but for myself [yes, 70 in November!] I feel very reluctant to use anything other than Fischer sticks.
I know this means my family walking at slow pace when out with me but I dont feel I should 'accommodate' them ... not yet anyway.
My only concession to my CA is for safety and that is hand controls for my car.
I was too late to apply for DLA -I didnt apply till I retired at 60 - if you apply before then, it continues but you cant apply after.
Consequently, I have to finance my own mobility.
I dont mind this as the young are more important and many far more disabled then me.
I am quite fascinated as to how all the chairs and appliances are stored.
I do think it a disgrace what retailers charge for mobility equipment - they seem to charge extortionate prices.
Thank you to all for sharing your stories.
I'm going for a driving assessment at hospital a week on Friday and hope I will pass with the ability to use hand controls. I'm dying to get behind the wheel of a car again. Its been two years since I surrendered my liscence to the DVLA. Fingers crossed I do well!
Brilliant news Iain - I am sure you will love hand controls
Good Luck Iain! I wish I could drive, but my arms shook so much trying to control the steering wheel even with the ball thing on and the brake accelerator stick.
Lovely to think you will be driving again Iain.You will probably have the stregnth to lift out things like rollators.You woould be independent.I would prob get confused with hand controls. I am ok its everyone else.Ru able to get a mobility car with adaptions?I still drive mine into the village but I don't go on fast main roads.I get beeped at for going too slow.
It's a skill we all took for granted until u lose it for some reason. Best of luck with the test.
I should be able to get a mobility car with adaptions Marie but I don't know how much it may cost me. I also have a knack for getting my walker into my car easilly enough. First I open the back door and lean back against the outside of the car. I then fold the walker easilly by opening the hinged seat and reaching in and lifting the mid section. This automatically folds the walker into a slimline position. Keeping my back on the car and my legs apart I am then able to lift the folded walker and twist my upper body and place it (wheels first) on the floor where the back seats are situated. My wife is always with me as she does the driving but I preffer to lift the walker in and out of the car myself when I can. The walker I have is very light.
Good for you Iain, you have that procedure/Challenge down!!!!! I love to hear diffrent ways around things! :0)
What a great website! Thanks for the link, Iain.
Iain Stevenson said:
Look at this abstract from the link below Patsy. It explains the meanings of Ataxia/Degeneration/Atrophy. I found the whole web site quite interesting.
This sounds EXACTLY like my Brother. Cerebellar Ataxia no known cause. He was an active child and played football. He developed slurred speach when he was 28 and went to the doctor to find out what was going on. MRI was done and they found his cerebellum was smaller than normal. A few years later he started walking with a cane and another MRI was done. His cerebellum was even smaller. They have no idea what caused it and we continue to have tests run showing my brother is very healthy. It's frustrating. We really don't know where to go from here. He is now in a wheelchair and it declining every year. He is 43 years old.