Caring for spouse: I have cerebellar ataxia of... - Ataxia UK

Ataxia UK

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Caring for spouse

PatsyIpswich profile image
21 Replies

I have cerebellar ataxia of unknown cause with very slow progression. I have been able to incrementally adapt my exercising and daily routine. However now, in our 80s, my husband has been diagnosed with parkinsons.

I do my best to sympathise with his coming terms with this diagnosis but I have now lost his constant attention. I feel like a spoilt child but guilty and confused.

Stay safe and don't forget to smile. Patsy x

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PatsyIpswich profile image
PatsyIpswich
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21 Replies
Plain profile image
Plain

Hello Patsy. Stay strong, take one day at a time, sending you a hug , don’t forget to look after yourself . Take care.

PatsyIpswich profile image
PatsyIpswich in reply to Plain

Oh thank you. I'm doing okay, crocheting and deheading in the garden. Too blustery in the garden today though. Hope you are well xx

Plain profile image
Plain in reply to PatsyIpswich

Yes thank you , very rarely get out these days, still knitting hats and listening to audio books, which I enjoy . Xx

wobblybee profile image
wobblybee

🙂 I was just saying to my husband earlier..’I feel particularly shaky and fragile this morning’

He replied saying he felt groggy this morning too…his usual type of reply if I mention anything to do with ataxia symptoms.

I’d only mentioned this to him because I’ve previously ‘blacked out’…but I don’t know if I had his full attention.

🙂 I find I make a lot of allowances because he’s getting older (77). We can only do our best to keep ourselves safe.

PatsyIpswich profile image
PatsyIpswich in reply to wobblybee

Exactly my point Bee. It's such a responsibility though, isnt it? Knowing that if you dont get the support you need and fall, you cause even more disruption to daily living. Then you're told, you should have told me/him xx Just sit there and feel guilty ha!

wobblybee profile image
wobblybee in reply to PatsyIpswich

🙂 Yes..I’d feel it was my fault..I sometimes feel as though I’m thinking for both of us. Growing old is no picnic 🙂

Jellybean75 profile image
Jellybean75

sorry to hear about your husband Patsy. It must be very difficult for you both to come to terms with his Parkinson's as well as your Ataxia. As Plain says, take one day at a time and do what you can. And Wobblybee - I can relate to you too, my husband is the same !! Remember ladies - we are strong, just keep going. Love to all x

PatsyIpswich profile image
PatsyIpswich in reply to Jellybean75

Bless you. Your comments reassuring and encouraging.. thank you xx

Telegraphist profile image
Telegraphist

Thinking of you both, Patsy. Hope you stay safe; sure you are not forgetting to smile.

PatsyIpswich profile image
PatsyIpswich in reply to Telegraphist

Thank you.. you've made me smile 😍

paul456 profile image
paul456

Stay strong my friend remember we are all stronger than we think take one day at a time and try not to worry. Ataxia suffers have built a lot of resilience, in other words we are a hard army to beat so use it to help.

I built a lot of strength as a young lad we were so poor my mum would send me next door with a button to see if she could sew a shirt on it.

Take care my friend and stay safe 😊

PatsyIpswich profile image
PatsyIpswich in reply to paul456

thanks Paul, I enjoyed the laugh. Yes I am staying strong albeit very slow ha! you take care too x

wobblybee profile image
wobblybee in reply to paul456

😂I had to think about it

Sea_ profile image
Sea_

So sorry to hear about your husband not easy. It’s blustery here too but sitting in a bit of sunshine 😀

Hope things look better soon 🤗🤗

PatsyIpswich profile image
PatsyIpswich in reply to Sea_

thank you, greatly appreciated. you take care too xx

Trinity1948 profile image
Trinity1948

Hello Patsy I only look at Health Unlocked on a Sunday so have just seen your sad post.I am so sorry for you both, it’s difficult to keep smiling. I can fully understand how you are feeling - - my husband who is 91 had a stroke in April. He was in hospital for a week and 4 weeks in rehab. Whilst there he kept telling everyone he was my carer so he worried as to how I was managing without him and also how we would cope when he came home.

He has been home since the end of May and life isn’t easy but as Paul 456 says we have to be strong.

I seem to have deteriorated quite a lot since ‘that’ day as it was so unexpected as he has had such a healthy life. I have had SCA 6 for 23 years and am 86 now but the hardest thing is we are housebound now as we both in wheelchairs.

Sadly, no attendance at the conference this year although there is always the virtual option if I have time.

Best to you both Peter and Jeanette Risley

PatsyIpswich profile image
PatsyIpswich in reply to Trinity1948

Oh thank you Jeanette. I really appreciate your encouragement. I will certainly stay strong and make the most of what 'we' can achieve 'safely'.

My main aim is to overcome the guilt I feel for not being more sympathetic. Hopefully I am motivating Ken.

Stay safe and don't forget to smile x

nigelrheath profile image
nigelrheath

being a mere youngster (73) I do sometimes wonder if I would cope if my very able wife became as disabled as me!

We had a conversation yesterday about buying in help to decorate and do the chores in the garden. We realised that we were remembering a life spent dealing with things easily that have now become harder or impossible. A decluttering is planned to get rid of those things we can no longer use. In my case many of the tools in my garage. Not to mention the come in useful someday bits and pieces. Money raised will be spent on fun things only.

Getting old is hard enough without ataxia, Parkinsons etc.

Nigel

PatsyIpswich profile image
PatsyIpswich in reply to nigelrheath

Thanks for sharing this Nigel. I think the incremental changes forced on us by ataxia, stand us in good stead. Good luck with the decluttering. Stay safe. :)

Psalm119 profile image
Psalm119

Hi Patsy again. I am with you on the journey. I can understand a little of what you are feeling now. Stay strong and be kind to yourself. Welcome to the 80’s , I think we are similiar in many ways - a determined spirit. Keep in touch through Ataxia uk.

MarjorieCheltenham

PatsyIpswich profile image
PatsyIpswich in reply to Psalm119

Thanks Marjorie, I will. A new month and less pressure to get out and enjoy the warm weather. Take care x

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