progression of ataxia

[Hickox]

I have SCA6. It was diagnosed three years ago. It progressed slowly. Gradually my walking distance shortened, my speech got worse, my balance also got worse. But in the last month it has progressed dramatically. It is difficult to walk without holding onto something and any exertion leaves me weak, and my legs have become wobbly. I am writing to see if anyone else has experienced a rapid change or if I should look to see if something else is going on

[wobblybee]

🤔It’s possible…this is a knock-on effect after your diagnosis of Covid, illness can sometimes worsen symptoms even if this doesn’t appear immediately. Or..it could simply be related to progression of SCA6. If you need reassurance and peace of mind..the best person to speak to is your Neurologist.

I’ve been unable to find out which type of ataxia I have. Symptoms have crept on over decades..and since I have Mild Cerebellar Atrophy I thought symptoms wouldn’t progress dramatically. Looking back..I can see how slow but definite this progression has been.

I had Covid/or a virus….and for some time afterwards my ataxia symptoms worsened and were difficult to manage. I’ve had falls which have shaken me..and these also have led to a downturn in symptoms..mobility has been affected, dizziness and balance worsened.

🤔 The main thing to remember is ….always consider safety is paramount. Make sure you use a walking aid if dizziness is present, move slowly and carefully…avoid sudden head movements….and consider a wheelchair if mobility is compromised.

I’m familiar with overwhelming fatigue..sometimes this is so exhausting the simplest task is exhausting..at times like this I can’t do anything but rest until I feel stronger.

🙂Don’t hesitate to contact your Neurologist if you need peace of mind. xx

[Hickox in reply to wobblybee]

Thanks Wobblybee. I have an apt with my neurologist, but I find her not so helpful or any neurologist I talk to since my main one,who was wonderful, retired.. My current one said that weak legs were not as symptom of ataxia, for example. I find I get more help from sites like this

[wobblybee in reply to Hickox]

🥴I’m so sorry your Neurologist is so ‘uncaring’. Some Neurologists..have little to no actual experience of treating ataxia patients..

[peterallison]

I too have SCA6, and find it very hard going. I hang on to everything for fear of falling and doing something serious. I find as well that having had a "water" infection a few years ago, also curtails my going out, so I don't, unless its really necessary. To combat this I have indulged my self in a home hobby of Music and Hi Fi which I indulge daily. To try and help with the tiredness in my body, I have an afternoon nap,but sleep OK at night too (with a couple of loo breaks😁). I am now 64 (65 soon) and was diagnosed in 2014. My partner of 6/7 years, can understand me, as my speech is no good either. And just take each day as it comes

[Tomassina]

Hi

I was also diagnosed four years ago after decades of knowing something was wrong.

My neurologist is very good but busy.

However, she asked my local NHS GP to refer me to a number of physiotherapists: neuro rehabilitation, neuro urologist, occupational therapist and speech and language therapist.

The whole process was and continues to be time consuming but well worth it.

I also had Ataxia U.K. arm the GP with their info pack on the condition and this has been extremely useful.

The two types of physio that have helped the most are the neuro rehabilitation at a nearby hospital and the speech and language therapy course offered by Ataxia U.K.

I do these exercises on a rotating basis and they’ve truly helped towards rebuilding my confidence and helping to maintain, so far, my independence.

You’ll learn how to manage your fatigue and as WobblyBee says safety is paramount and they’ll help with this.

I recently broke a toe and was immobile for two months. During this time I couldn’t do any physio for the SCA6 and I’ll now need to work steadily to get to the point I was before,

Stay determined but realistic, no one knows your body as well as you.

The doctors in the A&E I attended understood nothing about the Ataxia and couldn’t understand crutches or a walking stick don’t go well with a broken toe and Ataxia.

The GP referred a Rapid Response team to visit me at home who provided a walker.

I did need to have a private physio visit at home for the toe which has been a stretch financially but well worth it.

So the moral of the story is speak to your neurologist, educate your GP and work hard at staying as independent as you can and do contact Ataxia UK.

I hope this has helped and do keep us updated.

[peterallison in reply to Tomassina]

I like it when you said, "educate your GP", my last 2 (as moved 5 years ago) are as bad as the perceived receptionists, and filed the documents (from Ataxia UK) in the bin, well I know my current one did 😁😁. He has only NEVER seen me for my Ataxia ONCE in 6 years, just passes the buck to the 2 local hospitals

[ExiledScot]

I was diagnosed with SCA ( don't know the number) . I have ha d a rapid decline recently. I have to use a walker for balance ...or furniture surf in the house. My neurologist said it's not unusual and has reccomended physiotherapy exercises to strengthen my leg muscles. These exercises can be found on YouTube but don't overdo it at first . they really help with the. wobbly legs!! I am also going for Speech Therapy, as I find myself stumbling on my speech. Good luck.

[paul456]

I have scr 6 and I have recently gone downhill I put it down to weather ie cold damp weather can effect ataxia.

Stay warm and safe my friend.

[Ostap]

My advice would be try not to fall over, because things could be so much worse if you do. Also, I think Neurologists can appear useless simply because Ataxia has no effective treatments in the vast majority of cases. To reply to your question directly, the Winter has coincided with worsening balance for me which in turn affects my confidence, which probably doesn’t help my balance. This is an observation not a fact.