Quick moan: Just a moan my husband due to see... - Ataxia UK

Ataxia UK

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Quick moan

Edward1958 profile image
6 Replies

Just a moan my husband due to see consultant in Feb (9month app) rang to see if app booked told he is top of list my be March, getting worse, not sure if it's affecting his memory or not , he keeps dropping things, and not sure if his personality has changed, or it could be just me, feel like a full time career, not his wife.

Sorry about the winge, have a bar of chocolate makes it better.

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Edward1958 profile image
Edward1958
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6 Replies
wobblybee profile image
wobblybee

Hi 😊

According to Sky news, there may soon be a shortage of chocolate😐 Stock up😋

Has your husband ready been diagnosed, is this appointment a yearly review?

If his diagnosis is Cerebellar Ataxia and neither of you actually know much about the condition, it would really help to know what you're dealing with. There seems to be a distinct lack of information at appointments, quite often it's a case of looking online yourself.

If you haven't already done so, log onto ataxia.org.uk for helpful information. You may both benefit from meeting others coping with similar challenges, have a look on this site for your nearest Ataxia Support Group😊

Also, there's lots of helpful information on ataxia.org and if you need support as a caregiver, log onto livingwithataxia.org On the home page there's a list of all the support groups which come under the 'umbrella' of Ben's Friends. See Caregivers Support Group, you have to join and it's confidential 😊xB

Edward1958 profile image
Edward1958 in reply towobblybee

Hi. Thanks for replying, my husbands appointment is a follow up, he has been diagnosed with cerebella ataxia 3 years ago, he had a dad scan at his last app 9 month ago, I got the results from our g.p the results show Parkinson's plus as well as the ataxia, so far no help or contact from any one g.p says the consultant knows more than he does.

Got a list of questions ready and waiting, should be fun waiting for answers when we finally get there. Let you know when app arrives, until then it's wine and chocolate .

Edward1958 profile image
Edward1958 in reply toEdward1958

Feel better to day, made biscuits yesterday. Let me know how you get on with the scan.

Pheobe13 profile image
Pheobe13

I understand where you are comming from it is very frustrating my partner struggles with every day normal tasks which we all take for granted waiting on a DAT scan now he has got progressive cerebella ataxia and possibly msa as well now

february profile image
february

Dear Edward1958, Chocolate makes everything better!...,ha! Seriously, so sorry for you and your husband! I understand, it must be so hard on you to be his caregiver 24/7! And to see someone you love getting worse! Moan all you want, as that's what were here for! I have ataxia (many years) and see my neurologist every six months. Although there's no cure, it makes me feel better to be monitored. Symptoms do progress, that's the hardest part of all this! My best to you and your husband..., ;o)

Edward1958 profile image
Edward1958 in reply tofebruary

Thank you

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