Cerebella ataxia

[Pheobe13]

My partner has progressive cerebella ataxia with other problems to many to mention he gets worse every day and has told me he is struggling with life ? Does anyone know of any treatment abroad ? That can make or help him have a better quality of life ? He is 57 was very active and had an excellent job we use to have a great social life now we have nothing ! I'm struggling too with this disease how much worse is this going to get

[wobblybee]

Hi Pheobe😊

Most of us find this disease very challenging, it's easy to become 'dispirited'. Your partner's Neurologist would probably be the best person to advise on any treatment to try, particularly Stem Cell, if that's what you're referring to.

Cerebellar Ataxia is exhausting, confusing, frustrating and more. There's a great feeling of loss, like a bereavement. Symptoms can be nonsensical and difficult to explain to others. Withdrawal can seem easier than pushing yourself on.

Not everyone accepts depression can be part of the problem, but often this is the case with Ataxia. Accepting help with depression can often make a big difference in how a person copes with symptoms.

Significant others/carers can often be overwhelmed and frustrated too, it's not only the person diagnosed who needs support. facebook.com/groups/caregiv...

Best wishes 😊xBeryl

[Pheobe13 in reply to wobblybee]

It is bad now he keeps saying he's not depressed ? We spoke to the neurologist and she said there is no treatment but we keep reading about it abroad ? His walking is that bad now he knows eventually he will be in a wheelchair he is very limited what he can do now !

[wobblybee in reply to Pheobe13]

It's possible to be in denial about depression, only a doctor would be able to say for sure. Most likely he has a lot of pent up anger and frustration and if so, he really needs an outlet for it.

I suspect you are referring to Stem Cell, there's been much interest in this but it isn't necessarily the answer. It's said that it can POTENTIALLY bring about improvements. The companies who provide this therapy are careful to stress that improvement rate greatly depends on the nature and progression of the disease at the time of treatment. Also, as with any progressive condition, possible improvements might only last for a certain period of time, they cannot be guaranteed.

If the cerebellum is damaged (atrophy), stem cells would not actually be used to regenerate it. But, rather the damaged nerve and muscle cells controlled by it.

At present not enough is known about this therapy and it's effect on Ataxia. There's a possibility of the new cells succumbing to the same disorder as the persons original cells. Advice should be sought from a Neurologist if your partner feels strongly about trying this therapy.

😊xBeryl

[poolboy]

Hi Phoebe. First I would like to send my very best wishes and regards to you and your partner. Ataxia is a damned nuisance to put it mildly, but I am very sceptical about people or companies abroad who claim to either cure or even improve the condition. My doctor has told me that stem cell research is in its infancy and wouldn't be of any use for quite a number of years. Wobblybee seems to be the voice of reason on this one. Again my very best wishes and thoughts to both of you.

[dunfr]

Hi Phoebe

This sounds exactly like me (I am 59 now) - and I have been struggling with the disease.

However, I joined a gym with a swimming pool. At first, it was very difficult to even swim and I had to use floats, be helped into and out of the water etc. - I used to be a very competent swimmer. After 8 months I no longer use floats and I am in no danger of nearly drowning. Furthermore, I walk without a stick now, my writing has improved and my speech is much better. I am seeing my consultant on 4 Jan 2016 to discuss this improvement - he won't recognise me. Still a bit wobbly though.

No, I cannot attribute the improvement solely to swimming exercise but I can say I too was staring into an abyss last year.

This website helped; ataxiafightback.wordpress.com

I would be wary of treatment abroad - stay local .

Good Luck.

[LBenyon in reply to dunfr]

it is nice to read you are being so positive, Lorraine Benyon-Squibb

[auntiesally in reply to dunfr]

Wow, that's such amazing news, thanks for sharing it, you are the same age as me and have given me hope,

Thanks so much x

[february]

Dear Phoebe13, Ataxia is EXTREMELY frustrating and challenging...,I'm so sorry your partner is suffering so. Other's advice is great! I can only add I keep as active as possible (not easy), doing exercises for strength and balance, as well as attending physical therapy. I live in the US and was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7). There is no "magic bullet" that I know of, wish there was! I use a cane when I leave my home to prevent falling, although my ataxia has progressed, and I have fallen when not using it (in my home). My best to you both...,;o)

[scruffycat]

Neurologist! I knew I needed something. And maybe. a cardiologist. Any chance? North London or Herts.

[JOHNNIE2523]

The University of Florida has an excellent clinic for Movement Disorders and

Neurorestoration. I have an appointment with Dr. Ashizawa. I also suffer from a lot of

same problem, I have under gone DBS and many medications. This is my last trip!

Good Luck an God Bless