Hubby with ataxia

[Dishy]

Hi my husband was diagnosed with cerebellar atrophy 8 yrs ago he was then 55yrs he's been in a wheelchair for the past 5 yrs and has deteriorated a lot. He can't use the toilet in diapers full time can't do anything for himself he even needs help during the night to turn in the bed,his tremors are really bad now from head to toe plus he gets cramps in his toes,the dr has put him on Parkinson's medication 3 diff types together 1 type he takes 6 times a day. Worst thing now is his speech is so bad I can't understand a word he says, he can't even text anymore as the tremors are so bad.,it's heartbreaking to watch & deal with everyday. Any suggestions anyone?? Going crazy

Pat

[neta]

Dea Pat,

Sorry to hear of your husband's descent. My ataxia was diagnosed in 2010 although mild symptoms appeared in 2007. This year seems to be the worst ever thou not quite as challenging as your husband. I do exercise everyday and some form of self designed speech therapy . I think this is helpful; Also, I take monthly infusions of IVIG. I try not to react too much to constant stares and comments. Its a real problem for me. My MD and PT are not on the same page either. I am a;ways on the lookout for new treatments/cures N

[rankin1st]

Dear Pat as a carer I know those crazy moments when you feel so helpless and frustrated at not knowing what to do as the person you loves struggles and deteriorates before you. Have you got a good support network around you? Try contacting carers UK carersuk.org/help-and-advice they are great at supporting you to listen but help you get the services to help you both get the best out of life as best you can for you both. Has your husband been referred to a speech therapist to help with communication? Do you get respite as it sounds like your husband needs wrap around care. I would also contact the ataxia uk helpline to see if they can help you with the challenges your facing ataxia.org.uk/use-our-helpline. There is a lot of assistive technology out there to aid independence that might help all the best to you and your husband. Lisa

[Litty]

Hello Pat

SO sorry to read that. Do you have any help and someone to talk to?

Not being able to communicate is horrid for both of you. I use an alphabet chart to help me. I have a lovely speech therapist who came out and is making me laminated signs to hold up on bad days. When I get worse we are looking into technological devises - a bit like Stephen Hawking's uses.

Could you contact your GP and explain you need help and carer’s sound very good.

Sorry I could not help. Good luck x

[wobblybee]

Hi Pat🙂 Just last week I had a conversation with someone coping with Parkinson's, and in the past I've spoken to someone coping with the extreme tremors and poor speech associated with ataxia. It was exhausting for me for just a short while, I can't imagine what it's like for you, and your husband😕 A good support system is essential for both of you. If you are coping entirely on your own, please don't hesitate to contact the links already given🙂

Your husband is likely to feel very cut off and frustrated, even with your undivided attention. Although it may not seem a Speech Therapist can help, still ask your GP for a referral, you never know what sort of assistance could follow🙂 xB

[menessie]

Hi Pat I really feel for you as I care for my own husband too but he is not (yet) as ill as your own although his GP, when telling me what he had, as if it wasn't enough of a shock, told me abruptly that he would end up in a wheelchair all the time and doubly incontinent. You need to ask for the support you are entitled to. You sound like you desperately need it and I hope you have family or friends to support you too so that you can get a little time to yourself to just breathe. Don't feel you should do everything on your own. I hope your husband gets the higher rate of attendance allowance and you get carers' allowance as it will enable you to at least pay for your husband's night time care sometimes. Don't feel bad about needing help - you are not superhuman, none of us are. Hugs xx