Ataxia UK
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64 with Friedreich's Ataxia

Hi

My husband has Friedreich's Ataxia and due to the increasing severity of his condition he moved into a nursing home four years ago. He is hugely compromised by his condition as in addition to the physical limitations he is also blind and has a hearing loss. As his speech is very difficult to understand he has limited engagement with other residents in the nursing home. Depression is becoming an issue. I visit and take him out three to five times a week. Does anyone have any other suggestions about how I can support him? Thanks

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Hi Mary

Thank you for your post. What a difficult and horrible situation both you and your husband are in. Depression is awful, particularly as it makes the symptoms of FA so much more difficult to manage and to live with.

Although I have a cerebellar ataxia I don't have any experience of caring for someone with ataxia. However I cared for my Mum through a three year battle with cancer. We found she was very receptive to smells and to touch. I used to massage different areas of her body regularly which I know she looked forward to as she found it so relaxing and therapeutic. This was done with many things from E45 lotion to lavender oil and was often done in silence.

I don't know if this is something your husband would enjoy or be receptive to, indeed any complimentary therapy.

It is difficult and tiring to visit and care for someone regularly, even more so if they have both physical and mental health problems. Please try and make sure you are looking after yourself, both for you and your husband's sakes

Very best wishes

Harriet

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Many thanks for this suggestion Harriet. I think David would really enjoy this treat- I'll give it a try .

Thanks again

Mary

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I hope the massage helps, it sounds so hard.

Just an aside, I am spoilt and have a massage twice a week and I use Cetraben cream that comes in a handy pump. I have several pumps on the go.

IF your husband can cope with technology. I know that my sister (also in a home) finds talking hard and uses a machine to help her. My children found me an App for my iPad too.

Hope this helps x

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Thanks Litty

Sadly David has very little independent movement and no fine motor control so he can't access technology independently.

Also (please excuse the gripe and moan), but because his support needs are deemed to be predictable he doesn't qualify for Continuing Healthcare funding , therefore a lot of money is spent on the home costs, not much left for professional massages.

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Don't consider it moaning, it often seems very unjust the way things are assessed. Just last year I went through this process with my Uncle, it's degrading to say the least. Can you ask for a reassessment in due course🤔xBeryl

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That is a real shame.

So sorry x

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Dear Mary, This must be a very hard situation for you to see your loved one (husband) having to deal with his FA. I send you and your husband my blessings! I have ataxia, although not FA, and am on a perscribed medication for depression. Any chronic illness can cause one to be depressed and I find medication just helps me deal better. I do feel sad at times, although this is short-lived, not clinical depression like before I started taking this drug! My best to you..., ;o)

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Many thanks for your kind comments and support.

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Hi Mary, my heart goes out to both of you. I have FA I have found foot massage to be of great benefit, I manage to do it every night as my feet get very tight,hurt a bit enough to disturb my sleep.Would the staff their help? It's very simple to do small circular motions heel to toe. I use baby oil ( fairly cheap and does not interact with medicine ) another thing that shouldn't cost too much is visiting gardens that can be accessed, that provide touch and scent experiences that you can enjoy. It sounds like the staff need to be more creative and helpful to both of you. speak to the manager their if you haven't already ( I expect you have, sorry ). Carol☺x

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Thanks Carol, I take David out two or three times a week and if the birds are tweeting loudly he can hear them and he does enjoy that.

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