Progressive ataxia

[Pheobe13]

Is there any one out there that getting worse ? Whether it is you or someone close to you my partner is struggling with everything now waiting on a DAT scan now is there anyone to help us ? He gets 1 hr a day when he can feel as normal as he can

[Rimjhim97]

Yes Dear

I'm 54 yrs old man and for last 3 years my Ataxia has been progressive and now I am afraid in 2 to 3 years may be I will be wheel chair bound.

[Pheobe13]

Thank you for the reply but my partner a year ago to this month was a building site manager this Wednesday they are coming to measure his legs for a wheel chair !!! That is how quickly he has progressed he can't eat properly he can't talk properly he can't write now he has servere bladder problems which now they want him to have a bag it goes on an on so that is why I keep asking for help !!

[Hidden]

That's so sad for both of you Phoebe13 and Rimjhim97 😮Phoebe13 I have Progressive Episodic Ataxia - yes it is progressing, to where well I just don't know 😞 You really need to have counselling for you. Also please join a Carers support group - you must be exhausted. My partner doesn't know it, sometimes I look at him and he looks completely overwhelmed, utterly devastated and soo tired. I don't understand why he's stayed but he has ☺He had a happy go lucky, physically fit and massively independent partner - now no way. I saw a Clinical Physcologist and will see him again, he really did help me. Good luck Phoebe13 💚

[Pheobe13 in reply to Hidden]

Thank you not feeling good this morning feel like I'm chasing my tail and feel like I've exaughted every avenue x

[Hidden in reply to Pheobe13]

I realize your 24/7 looking after your man ~ please take sometime to look after you ~ the stationary bike suggested by Neta is a good idea ~ you both can use it ☺ I give myself 5 minutes to cry - and that's it. If I miss the window I've given myself well tomorrow I cry! (guess what? tomorrow never comes!!!) If you don't look after you ~ then everything will fall apart. Your not working as much- that may or may not be a "good" thing ~ hope he has gone on some sort of Disability benefits. I have (it's not much but in a strange way has given me peace of mind) The next thing I have to look forward to is my partner wants a lawyer to come here (wow, I'm being sarcastic 😊) to answer questions about my future 😔 hmm.... I keep bringing him up to you because as far as I'm concerned he doesn't look out for him (that's always been my job) He works and looks after me that's it - I personally find it unbelievably stressful 😤 Please please look after you, too.

[eileen200271 in reply to Hidden]

Morning Joolzzz. I like your 5 mins to cry, lol. A bit like me, I then put "it" back in the wardrobe. Need a wardrobe, the cupboard was getting a bit cramped.

And yes the "caregiver" has always to take care of themselves, or they won't be able to care. Good advice.

🌼💙🌸🌼💓💟

[sajnaj]

Yes my son 36 yrs old has progressive cerebellar ataxia 4H syndrome

He was diagnosed about 6yrs ago.

His condition has deterioted so much since then.whole family is worried about his health,and are willing to go anywhere for the treatment if there is one available

I pray for all the people who are posting here,sick and with any kind of problem.

Do not lose hope

[neta]

Just wondering if resting as in sitting or lying helps? N

[Pheobe13 in reply to neta]

No he tends to stand up as when he sits and try's to walk he falls as he has no balance or coordination there has got to be more done for this disease ! No one talks about never hear about it on TV radio in the papers nothing !! Like we said if he had cancer of any sort we would know what to expect feel very bitter !

[neta in reply to Pheobe13]

Right. I agree. Are you in the UK? There seems to be a very good ataxia guy in Sheffield. His name is Prof. Mario Haddivoslu or soething like that.

[Pheobe13 in reply to neta]

Yes I am but we have seen top guy in Southampton only the once but we see neaurolgist every 3 months waiting on a dat scan at moment but still we need help here I still work but only mornings now but everything is a battle ! Don't me to sound negative but that is how we both feel he says to me how long can I live my life like this !! What do you say ?

[neta in reply to Pheobe13]

I say life sucks sometimes. Get help 4 yourself. Try and see .this Mario person. Fight it by exercising alot. Buy a stationary bike.

[winch in reply to Pheobe13]

What is the name of the top guy in Southampton?

[Pheobe13 in reply to winch]

I'm not sure if I've spelt this correctly DR Hammans ? We saw him last February as he specialises in ataxia ever since then we see Rhiannon Morris in neurology

[cjpotter]

My daughter is 5. She began complaining of a ear ache in October and by the 2nd week of November she was wheelchair bound. Sadly she has lost the abilities to feed herself, go to the toilet, and write. We do not have a definite diagnosis although amongst the many piles of paperwork possible progressive cerebellar ataxia is mentioned. I wonder what the next awful thing will be. All of this happend in around 3 months. We are now 6 months in. Progressing is definitely the word. Sorry I cannot post any positive details of our families experience.

[Pheobe13]

Really sorry to have just read this in someone so young xx

[Edward1958]

Hi, my husband has progressive cerebella ataxia , he has had it 3years now, use a scooter out side and walker in side, he had a dat scan and showed Parkinson's plus, not sure what next, going to see consultant on 20th March, no one has been in touch I got results when I asked my g.p. He Said best to see what your consultant says.

He is getting worse, he is eating ok, but getting slower and has urgency bladder problems, not sure how it effects the brain but at the moment I am not sure if he rembers things. Got a list of questions to take with me. Not convinced I will get all the answers I want,but hey, ho. Let you know how I get on .

[SuzQ787]

My son is 4 almost 5 and has CAMTA1 ataxia and EDMD but the ataxia affects him the most and has since birth. He is progressing and it is truly scaring me

[Pheobe13 in reply to SuzQ787]

Omg that is really sad although I don't know all of what you said is ? Do you know what some one has got to get this out in the media none of my family and friends have never heard of this disease

[pazzamadre]

hi Pheobe13. My daughters ataxia is getting worse by the month. Since 2009 she's had many scans showing signs of atrophy. She only has yearly appointments from Neurology Newcastle, their only help is an OT who asked me if someone is hitting her, and cannot suggest any aids to suit her. The Adult Mental Health Services are excellent but don't really understand her Ataxia. I'm embittered and can understand your frustration. Chin up, keep going.