Cerebella Ataxia: Hello, this is my first post. My... - Ataxia UK

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Cerebella Ataxia

Kazkaz profile image
14 Replies

Hello, this is my first post. My husband has been suffering with Ataxia for about 20 years now. He is also registered blind and has prostrate cancer as well.

He is falling over quite a lot now, I am unable to help him up as his muscles in his arms and legs has gone. I am looking for help when he falls, I don't want to dial 999 does anyone know of any organizations which give this sort of help? Thank you for reading this.

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Kazkaz profile image
Kazkaz
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14 Replies
Tiggywinkles profile image
Tiggywinkles

Phone 999 - they will know how to get your husband up properly and will check that he hasn't done any other damage when he has fallen.

Kazkaz profile image
Kazkaz in reply toTiggywinkles

Thank you for your reply, I was trying not to waste their time as he is usually ok once he is sat down again. Many thanks will do that

Tiggywinkles profile image
Tiggywinkles in reply toKazkaz

Better to 'waste' their time than do some damage to your husband!

february profile image
february

Dear Kazkaz, I agree with Tiggywinkles! 999 is your best bet, as you also want to make sure your husband hasn't hurt himself in the fall. Does he use any aids like a walking stick (s) or a rollator? If not, you may want to consider this for him to prevent falling. I don't know his particular circumstance, beyond what you've said. I've also had ataxia for about 20 years (officially diagnosed 12 years ago) and started using a cane (walking stick) about 6 years ago. I've suffered some very bad falls when not using it! I also have an outdoor rollator. My best to you and your husband..., ;o)

Kazkaz profile image
Kazkaz in reply tofebruary

Many thanks for your reply.

Yes my husband has a stick and a walker. He also uses a scooter.

I was looking perhaps for an organization or a group that provided the help I needed in helping him up again without using 999 I always call on the family when I know they are around but two sons could be anywhere in the country due to work.

Thank you and will probably ring 999 next time.

Jay1972 profile image
Jay1972

Hi KazKaz,

All of the advice to phone 999 is good as you need to make sure your husband is ok.

You might also want to check with your local council to see if they have a 'Careline' service or something similar. This is where, for a small monthly fee, you and your husband are supplied with pendants so that if you need assistance and cannot summon it, you press the pendant and it goes through to someone who can help. Certainly where I live, this service is very popular and a lot of people find it useful.

Pheobe13 profile image
Pheobe13

My partner also has bad falls as we are in the system if you like we have been given a cushion that inflates they came to the house and showed me how to use it very simple too it is what the paramedics use if a person is too heavy obviously if it is a head injury you just put into recovery position and call 999 your social worker should help get all the stuff you need at home as for emergency button we don't pay the provider is called agenti hope this helps my partner has progressive ca but also msa so things going down hill fast x

Kazkaz profile image
Kazkaz

Sorry to hear about your partner. Thank you for your help I will look into the cushion, which sounds like a brilliant thing to have.

Many thanks

sylviagreenhalgh profile image
sylviagreenhalgh

I have ataxia and live alone so I wear a pendant which I press when I fall over as I cannot get up again. last year I fell in the garden and evryone was on holiday or out as it was a Saturday afternoon so the police came and got me up. I have a key safe and the agent for the pendant told them the number so it was great, they checked me over and I was fine and on the Monday someone from Scial services rang me to make sure I did not need any service. I would not be without my pendant. I my area there is also a social worker on call for carers- i there a carers centre near you who can help you. all the best Sylvia

Kazkaz profile image
Kazkaz in reply tosylviagreenhalgh

Hi Sylvia

Many thanks for your reply. Yes I think I will get a pendant for him.

Wishing you well.

Pat

neta profile image
neta

Dear Kazkaz Hi! I am not British so I don't know what 999 is (guess its an emergency # and service). After 20 years don't you think your husband (and u!) deserve a private aid?? There are so many folks looking for work these days. Maybe a helper part time if money is an issue or some nursing student, church volunteer or college student? My mom, 92, and afflicted with Parkinson's has a woman aide who is actually Ukrainian.(Mom lives in NYC) She is like a saint, helps with bathroom activities, goes for walks w Mom and also prepares meals and assists with bed time!!

cclive35 profile image
cclive35

I'm sure other comments will help you but I would just like to say you sound like an amazing lady. I'm so glad to read your post as it makes me realise that although I have many problems, I have nothing to complain about in comparison.

Kazkaz profile image
Kazkaz in reply tocclive35

Thank you for your comments. I wish you well.

AnneMenzies profile image
AnneMenzies

Kezkaz, I have cereballar ataxia also. And I like your housband fall even with my walking stick. And whenever I go out I am in a wheelchair for my own safety, I don't know you would consider that option for him.

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