Hi all
Hope you are all well.
How disabled do we get with Ataxia I know it has a lot of dependencies but just wondering if Ataxia suffers need help with showers and baths etc. I’m coming to a point where I have to make some big decisions so just after any help to make the decisions a bit easier to make.
Thanks for your help 😊
It depends a lot on which type of Ataxia you have and on the age when you develope the symptoms. Me and 2 of my children have SCA13. Both my children developed symptoms when they were 13 to 14 years. My daughter who is 23 uses a Kwalker while my 16 years old son is completely wheelchair bound. They both developed these problems overnight and are progressing very slowly. On my part however I only suffer from tremmors and occasional jerks, in fact I was not even aware that I had the condition. I was only diagnosed after genetic testing were done. As you can see we are 3 in my family with completely different symptoms. The only common problems we are developing are ENT problems which might not even be related to our Ataxia type. It is importanti for you to get genetic testing them move forward after this. Unfortunately there are still some types that are not identified through genetic testing. In this case you will have to see how it effects you by time. Joining a support group can be of great help as you wild be able to predict your situation and learn from other members experiences. If you have further questions just contact me whenever you like.
Ji Paul, I have had Sensory Ataxia for over 3 years now during which time my condition has deteriorated, I can walk with a stick for about 10 yards, work have moved me to the ground floor which helps, I go out on my scooter to the pub and taking the dog out, I have hand rails around the bath as I can still (just about) get in to have a shower, we are in the middle of some building work to make the utility room a bit bigger which is to be my bedroom downstairs, at the end of the day you do what is necessary to live as comfortable life as you can, good luck
Hi Paul. I have late onset cerebellar ataxia. Knew what the outcome would be - saw my dad go through the same. Am fortunate enough to have a walk-in shower and OT arranged for me to have a shower stool (chair was too big and took up too much rooom). They also had me fitted with an extra handrail for getting up the stairs and couple of other bits for moving around the house. Wobbly legs , loss of balance and slurred speech are just a few other bits ataxia throws at you ! Get what you think you might need before you actually need it
Some become very disabled. Some have very few symptoms. Some live to their late eighties with symptoms just beginning. Get a home with wide doors and flat floor shower and no steps. Cover the odds then forget about it. If you want to travel do it now.
Hi Paul🙂 you’ve previously mentioned a diagnosis of SCA6 and Episodic Ataxia..
(Episodic ataxia type 2 (EA2) and spinocerebellar ataxia type 6 (SCA6) due to CAG repeat expansion in the CACNA1A gene on chromosome 19p)
I’m not diagnosed with this myself..but I’ve seen many posts from others, and meet up regularly with ‘SCA6’ members at my local group.
If you are thinking longterm..many people have moved to a bungalow. At some point it became necessary to use a wheelchair indoors..and stairs made this difficult.
🙂You can search here for previous discussions relating to SCA6
At the top of this page look to the right, next to your profile picture is the searchbox..type in SCA6
I hope you can some answers so far I’ve been told it depends on the cause and the individual. I’ll be seeing my consultant on 3/8 and it’s a question I’ll be asking him but I’ve a feeling that’s what he’ll say. Seems like there’s a lot of knowledgeable people in here. Hope you get the information that helps good luck 😊
Hi Paul - I also have SCA6 and from information I have gleaned from Ataxia UK I believe it to be ‘late onset’ and one of the milder ones. Like you I ‘had a life’ before I started with symptoms - I was 71 before the first one (slurring) and I am now 82 and my condition has slowly deteriorated over the years. My heart breaks to hear of young people already starting on their Ataxia journey.
I now walk with a three wheeled frame and use a trolley in the kitchen. I still use the stairs and go up every time I need the loo for the exercise - I couldn’t do it without a rail which was fitted by the OT after I fell and broke my ribs. Similarly they fitted grab rails in the shower.
I am able to walk along the river for about 20 minutes and I have a recliner bike at home which I try to use for 20 mins 3 or 4 times a week.
Ataxia UK produce an information sheet about each SCA condition and it reports that most SCA 6 sufferers are still walking after 20 years so I intend to try and beat this statistic! It’s worth getting a copy.
With your background I am sure you have lots of determination so very good luck.
Hi i think it is à progression hopfuly slow Thinking about it i ve had ataxia for maybe 6 years just à bit unstable but realy did nt take much notice but over the last year it got bad ..i walk with à walking stick now got à walker for if i m in small shops ..got à handicap badge which is usfull ..my kids have set up handicap toilet ..spécial seat in shower .lots of sécurité bars ,so for me lots has chaged in one year ..i dont have à answer for you ..i m OK about what i have now accepted and i m prepared ..ok even for thé worse ..i m not à spécialiste ( but even they dont know ) im just hoping it will be à gradual décline maybe someone else knows more than me ..ah yes i do have à home help 15 hrs à month my dr has asked for 25 hrs à month ..i think soon i will need help for showers its getting dodgy for me to get out ..impossible to wash my back
Good luck let us know how your getting on xx
Hi I was diagnosed with ataxia in 2006, I had to retire on ill health from work just over 3 years ago. I still lead a reasonable life, doing daily exercise and balance work every day for over an hour. I manage to shower, dress, go do the weekly food shop for my partner who works full time. Drive over to see my eldery mum once a week. I do all these things ok, just slower and a lot more carefully. I don't use any mobility aids at home, although I do use a four wheeled walker for walking more than 30 metres.
Ataxia wasn't really an issue mobility wise until 2015, so for me almost 10 years post diagnoses. Obviously we're all different and certain types of ataxia progress at different rates. I'm 55 in October and firmly believe that exercises, balance, strength and cardio on a rowing machine are vital to keeping the progression process slow.
I hope some of this will be useful to you.
Good luck and stay strong.
I think it all dépends how quikly we décline and what sort of antaxia we have I belive we can end up in à wheel chair .
Not swollow or talk
Best to just battle on
Awful illness
I think i answered higher up Sorry Paul
Hi everyone.
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