What Next?

[Edward1958]

Hi new to the site. My husband has been diagnosed with cerebella ataxia and just recently had a scan and has Parkinson's plus. He is unable to walk with out a walker and uses a scooter when out , all this has happened with in 3 years, not got any info from any body not sure what the next stage is or what to expect, his speech has nearly gone , and is getting slower. Can anyone give me any info. Thank you.

[wobblybee]

Hi😊welcome,

As far as Cerebellar Ataxia is concerned, here are links to the two main sites for information.

ataxia.org.uk and ataxia.org the National Ataxia Foundation. It's likely that you won't be able to click on 'ataxia with Parkinson's' straight away. Googling may give you better information.

Some people report almost 'overnight' disabilty with Cerebellar Ataxia. In my case it's worsened over a period of several years. I've needed a walking stick for quite a while, and now I know I should really use my rollator much more than I do.

It's not unheard of for complaints to be made regarding the lack of helpful information given at the point of diagnosis. Many people have to do research for themselves, just to help them understand what they've actually been diagnosed with.

The symptoms of Cerebellar Ataxia are fairly common to most of us, lack of co-ordination in limbs, poor balance and dizziness, double vision and or nystagmus, and of course exhaustion. Degrees of disability can vary enormously, as well as progression with the condition. Even Neurologists often speak in general terms about this, it's difficult to predict exactly how a person will progress.

Your husband may benefit from the advice from a Speech Therapist, and also a Neurophysiotherapist. If he hasn't been seen at an Ataxia Centre, he can ask his GP for referral😊xB

[Edward1958 in reply to wobblybee]

Thank you for replying, I will check on Google.

[Pheobe13]

My partner has progressive cerebella ataxia as well and is finding life a struggle walking is a struggle talking everything now every time we see the neuro consultant we keep asking about parkingson but they keep saying what he has is similar we are at the hospital next week and after reading your story we are going to ask for another scan although he as had 4 one more wont hurt

[Edward1958 in reply to Pheobe13]

The scan he had was one where they put a radio active injection in his arm, it was at the nuclear medicine dept, can't remember what it was called, it highlights areas on the brain that are damaged, (I think) let me know how you get on.

[Pheobe13 in reply to Edward1958]

All booked for the DAT scan shouldn't be long my partner will be having a wheel chair now just to help us both if and when we go out as I will feel safer as my partner is struggling with walking it could possibly be msa which normally does come with progressive cerebella ataxia

[Edward1958 in reply to Pheobe13]

Glad you've got the scan booked, hope it comes out good. My husband is in a scooter or wheel chair when he goes out , in doors uses a 4wheeler and hand rails , got him a new chair recliner that tilts forward so he can get out of the chair better. Just waiting for his next app with consultant . Hope it turns out ok.

[Pheobe13 in reply to Edward1958]

They think my partner has got msa as well now he struggles to walk we are in the system now to try and get wheel chair for when we go out

[Edward1958 in reply to Pheobe13]

Just rembered it was a DAT scan , in nuclear medicine dept. Hope this helps.

[nettles1]

I have been diagnosed with Multiple System Atrophy, which is similar to Parkinson's

See msatrust.org.UK