Non-Genetic Ataxias

[shaun_f]

Hi everyone,

My father was diagnosed with ataxia about 2 months ago. His imbalanced gait has gotten him to the point where he has very little energy and is barely able to walk; this is in contrast with last year, where the dizziness started kicking in. Just a little less than 2 years ago, he was getting back from his daily jog. His work fired him because they thought he would be a 'liability', and we've had to go on our own in terms of figuring out what had happened to him.

After seeking help from doctors, we found that there were not many doctors that had knowledge of this. He ended up going out of the US to see if there was any hope in elsewhere, but until now he is still dealing with it. His spirits have been low, the family tries what they can to keep him up.

I'm looking to see who or where I would be able to figure out exactly what he has, and based on all the threads I've read on this forum and other places, this community seems to give out a lot of good advice so any information is absolutely much appreciated.

At this point, all I have is the diagnosis (spinocerebellar ataxia). My dad's had trouble speaking, imbalanced gait (walks like a pirate as if he had a wooden leg), and very little energy. He coughs very harshly and his frame is continually shrinking. Any advice really helps, thank you all.

Shaun

[PeteW]

He needs to get some genetic testing done by blood test. He would need to go to see a neurologist for that to be sanctioned. There are many more tests that he can have ie. skin/muscle biopsy.

There is an ataxia centre in London and Oxford.

It is worth noting that about 70% of all UK ataxians do not have a full diagnosis.

[wobblybee]

Hi Shaun🙂 Have you looked on ataxia.org for links to Neurologists, Ataxia Centres and Movement Disorder Centres🤔

Unfortunately, there are several possible causes for ataxia, other than it being genetic, it often makes an exact diagnosis/prognosis very difficult. Your father is likely to feel depressed, and extremely frustrated having to cope with changing challenging symptoms.

Do look on the above link, the National Ataxia Foundation provides information of all sorts 🙂xBeryl

[Litty]

So hard but talking can help some people.

It is SO boring but exercise helps me. I fell and am having to do a lot of cycling on my exercise bike. I have music (and try and sing to strengthen my throat) or the radio on or watch my bird feeders.

I try to sit in the shade most days.

You need to try and help him find/remember his hobbies and adapt them to work now - if he liked reading and it too difficult now, book tapes are excellent.

Good luck : )

[Cubsfan]

Hi. I am also from USA and was diagnosed with cerebellar ataxia 2 years ago. I am 55. It is extremely difficult to find knowledgeable medical help in USA. Look on YouTube and you will find some useful information. There is a Dr in Florida (I can't remember his name) also one of the universities in Florida studies ataxia as well as UCSF. I find exercise and nutritional supplements to be very helpful. He's fortunate to have people around him who care. Keep his spirits up, having ataxia can be very emotionally draining to say the least. Encourage him to stay active. This community has many wonderful people who are great sources of knowledge. There are many different types of ataxia. It is difficult to find relevant information and sort thru the complexities and causes, treatments of ataxia. At one point I found a physical therapist who guided me through an appropriate exercise routine that I continue currently. I can't say enough how important it is to me to keep exercising, stay active and keep a positive frame of mind. Hope this helps.

[Guyb]

Hi sounds similar to me I didn't know much till I when the to professor Marios at ataxia centre at royal halamshire hospital Sheffield