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Ataxia Support

Relative of an ataxic person

Hi there,i’m a 19 year old and i have an older relative who has ataxia ,about 9 months ago they were given the simple diagnosis of “sca” after months of searching while they did not know what was wrong ,i read a lot about it since then and so far everything seems very typical of spinocerebelar ataxia ,there is one thing though ,for about a month or a month and a half now ,it seems that they have been getting tired doing regular tasks like going up two flight of stairs ,cleaning their house … that kind of stuff , I read that weakness is a symptom of MSA , does anybody have a similar experience and does anyone have any input , anything would be appreciated

Hi there, I have MSA. And find I get run down/tired/weakness very easy. My legs begin to get stiff and sore, and my feet and joints become swollen (likely due to my body continuously compensating for loss of balance and coordination. It is quite common to experience this with many ataxias though, not just MSA. Many with ataxias are troubled by extreme hot and cold weather conditions. People that are diagnosed with MSA especially have difficulties with the weather because of their inability to sweat.

Hi, welcome😊
All types of ataxia are likely to cause tiredness, sometimes even overwhelming fatigue. The main cause is having to use so much more concentration, even on everyday tasks, multitasking can be exhausting, if not impossible. This doesn’t necessarily indicate a diagnosis of MSA. There are numerous types of SCA, and more than one cause, it isn’t always genetic. Often, being linked to a specific type can be difficult. There isn’t any medication specifically for SCA but there are medications and therapies to alleviate symptoms.

Log onto www.ataxia.org and click on Download our Factsheets, there are many helpful links on the site🙂xB

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hello ,hutchy-10 and Beryl-Park , thank you very much for your surprisingly quick replies ,both of you provided some comfort telling me that even SCA can have symptoms of tiredness and weakness , thank you for the link , I will need it .

I’m comforted to talk with other people that are going through similar conditions , even though you probably are going through worse than we are , I hope that you are coping well with the conditions .

I would also like to know about the symptoms that you both have been suffering from and the type of disease that you have if you feel alright talking about it and if you have any idea where i could get information on physiotherapy exercises to help ,

again thank you very much and I hope you currently feel well .

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www.ataxia.org is generally a good site for most ataxias and MSA. Multi System Atrophy (MSA) is a term/condition used to describe atrophy of the brain in several different places. Whereas, some ataxias most often the cerebellum or brain stem suffers atrophy/damage. In either case, both share very similar symptoms. It is sometimes hard for professionals to distinguish between the two. Genetic testing should show if there is a specific spinocerebellar ataxia (SCA) responsible, however, there is supposedly many undiscovered types of SCA’s. Genetic testing is expensive depending on your situation and location (Ontario, Canada has heath care coverage for this), but it is non invasive. A simple blood test is used for genetic testing.
In my case they spent years testing (MRI’s, genetics, and physical) for MSA. They concluded in the beginning that I had a condition known as Friedrich’s Ataxia even though genetic testing told a different story. Then maybe I had a undiscovered SCA or sporadic SCA (SCA that come on all by itself with no known cause) Only years later did my neurologist diagnose me with MSA. They did this by noticing changes in the structure of different parts of my brain. Typically unknown ataxias go many years before MSA is diagnosed, and in some instances SCA’s develop into MSA (they think).
Not to scare you about MSA, but MSA is less common than SCA’s, so that’s a good thing. In terms of life span, it’s really hard to determine, unlike some other conditions/diseases, there really are no “stages” everyone is different.
As far as my personal symptoms at present, I have most of the typical ones of MSA, more information about MSA can be found at www.multiplesystematrophy.org
The take home message here is that SCA’s and MSA are very similar and share many of the same symptoms. It may be something for your relative to visit a neurologist or movement disorder clinic.They can direct them on the steps to take from treatment to testing. Proper diet and exercise can be useful when it comes to treating the symptoms. Physiotherapy can help, however, can be expensive and a lot of times they give exercises to do at home. These exercises are designed to strengthen parts of the body used for balance and coordination, walking, and other activities. A speech therapist may also help with speaking and swallowing difficulties, common in patients with SCA’s or MSA.
May you experience good luck, and please don’t be afraid to ask me/us more questions.

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Thank you all this info!

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thanks a lot hutchy-10,i will definitely ask if i need to know anything , i just hope i’m not being a burden

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of course you aren’t!

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Just wanted to add that it’s common for people with an ataxic disorder to feel worse when they start exercising before they feel better. But if you don’t exercise at all you will lose function pretty quickly.

Just taking a walk, with walking a little bit further each time, can often be the easiest and best option. Then if you feel like it, you can add more exercises.

And I also wanted to mention that fatigue isn’t the only reason a person might stop doing things like hanging about on stairs. When you have an ataxia, you become painfully aware of how easy it is to fall, especially on a bad day (if you’re tired, stressed out, sick, whatever). So you have a sense of self-preservation and avoid dangerous activities.

I was once on another forum, years ago, and we all had a good laugh about how many of us stopped walking our dogs around hills because we kept falling down whenever the dog tugged us to sniff something, then since we were near a hill we were afraid we’d tumble to our deaths.

thank you marjorie ,i really appreciate your input .My relative is starting to get like that , they stopped going anywhere with a rough terrain , and if they do go we have to hold them by both hands , but you are definitely right , they should start exercise immediately , do you think that online resources are good enough or is a physiotherapist indispensable ? can we get the exercises that we need online ?

Also, i just checked your profile and i must say waw , if you don’t mind , 12 years of ataxia , we’ve only seen about a year of this disease and their life has changed so much already , i wonder how have you been able to cope with it all this time .

Hope you are all well and thanks again .

You could start by looking up my friend Dr. Tom Clouse (he’s the one in the white pants):

I don’t have his email or number anymore, but I’m sure you’ll find it if you google around.

Keep in mind he is VERY enthusiastic. It is easy to feel overwhelmed in your first conversation with him. But I would say he is the most informed person I’ve ever met about regaining function with Ataxia.

I lost a lot of function within my first couple of years after I was diagnosed, but then I slowly regained it, just by doing things differently. I can’t always drive, run, walk normal, talk too well, or use stairs safety. But most days I can do those things and still pass for a fully able person. It takes a mental, emotional, and physical commitment to accept it and move on around it.

Thank you marjorie ,I’ll try to get in touch with him ,it seems like he can be a lot of help , the fact that he’s ataxic gave me a lot of hope , he seems almost normal ,by the way , marjorie , i’ve been reading a lot , and i’d like to get the opinion of a person with SCA , i’ve read that adult onset sporadic ataxia isn’t fatal on its own like cancer , but rather , it’s the symptoms (like falling and breaking something ) that might lead to death , is that true ?
I’m sorry that i’m asking so many questions , and ones that might be hard to respond to , so thanks for your patience and your replies .

Also , i’m glad that you got better after 2 whole years ,it’s magnificent , i taught an ataxic person can only get worse or reach a plateau , i didn’t think it can get better with exercise .

Take heart , you probably don’t need to hear this from me , but stay strong and positive , not just you , but every ataxic person , keep up the hard work you guys , you’re the most important person that can help you .

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Yeah find Tom he’ll help you guys out.

Um…well it kind of depends on how you’re looking at it. Of course the falls and susceptibility to other things is the more immediate danger. But if you manage to avoid all of that stuff, the ataxia itself will eventually take you out, no matter what variant you have.

You have the awkwardness and incoordination that is obvious on the outside. There isn’t too much of that going on inside because your body prioritizes its important systems. Like when you’re drunk- first you’re just clumsy- but if you keep drinking it will kill you. Stuff shuts down in order of least important first, and eventually you get to things like breathing and heart beating.

My granddad died of pneuomonia. That was a death from an ataxia complication. His brother died from a combination of heart and lung failure. That was a death from ataxia itself. They each lived for like 30-40 years after their onset. Not a bad deal.

Yeah take the “it doesn’t get better” stuff with a grain of salt. In the purely technical sense, no it doesn’t get better. You can’t cure it and it does progress. But if you learn different ways to do things, you can get back to walking pretty normal again and get back to living a fairly functional life.

thanks Marjorie, even though it’s not what i “wanted” to to know ,I needed to know that eventually i guess , but still ,30 years really isn’t a bad deal .
And yeah , we’'ll definitely live a " positive ,going back to functional life " mentality .