How to manage Ataxia

[Knittlng]

My Ataxia seems to be getting worse, I try to go out but find I start to shake and get wobbly I feel I have lost my nerve. I wonder if there is some way I can keep this under control. I would be interested to know how others manage. I have had so many falls

[cocoa]

The best thing is to get advice from a neuro physio.

You will be given exercises to help with balance and core strength.

You will also be given advice on what mobility aids you need.

[wobblybee]

Some days are definitely worse than others, and some situations seem to trigger a worsening in symptoms. My vision seems to worsen, I’m aware of worsening balance and concentration is at an all time low.

Today, I managed to negotiate the supermarket without too much trouble..But some days I’m affected by the busyness-noise-lighting etc. When it’s one of those days, I almost have a panic attack and just want to get out as soon as possible.

[PatsyIpswich]

I feel for you.. I had counselling for this but still find it impossible to go out on my own. I try to stay positive and enjoy indoor activities xx you can get counselling by applying online NHS CBT give it a try. Xx

[Knittlng in reply to PatsyIpswich]

Thank you it helps to know you’re not alone

[Plain in reply to Knittlng]

I know how you feel, can’t get out of the house without help, so rarely go out. Enjoy knitting listening to Audio books spend far too long sitting in a chair doing puzzles on my Tablet. Tell myself must move more , but it is difficult. Take care….

[nigelrheath]

I think we all have good and bad days, the good we can just about manage but the bad need a different strategy.Undoubtedly exercise is key to more good days and less bad, bad days. The important thing is to start from where you are and progress at a pace that suits you. There’s armchair exercises online, either nhs or age concern.

If you diagnosis is fairly recent you are going through a grieving time for what you have lost.

This includes some negative bits. Look up Kubler-Ross and bereavement curve. This will give you a road map. The final stage of acceptance takes a different time to get to for each of us. Even though I am there, I still have the odd down day or ‘pity party’!

If you are specific with your gp regarding your needs, they will refer you to the right service. Whether that’s cbd, counselling, speech therapy, physio etc.

Please let us know how you get on, we’re all with you on this journey into the darker reaches of ataxia.

Nigel x

[Knittlng in reply to nigelrheath]

Thank you Nigel that was most helpful I feel I am still grieving and hope to come to terms with my new way of life soon, you certainly made me feel a little better

[penelope2]

Hi Knitting. It is ****** tough having cerebellar ataxia. With good days and bad, not only with the physical symptoms but mental health too.I realised the other day that feeling anxious, worried, frustrated, angry and depressed have been with me for years. Feeling like this is not positive especially when dealing with the physical symptoms. So I decided to try and let these feelings only last for a few minutes at a time. Play music, listen to the radio, do a puzzle, anything to try and keep my mind occupied.

Well it sort of worked, have cried more ( maybe cathartic?) Don't know. Have decided to talk to my gp, wouldn't trust them to prescribe antidepressants though. Their knowledge of what this could do to the ataxic brain is probably zero. Sorry am having a bit of a rant here!

Knitting is something I do a lot of, and it seems to keep my hands steady and precise. I call it my meditation. Also do adult colouring, this helps with mindfulness. And considering getting an electrical piano to help my brain work. All things to do indoors because going out is a problem for us.

H U is good for getting answers to specific questions. Do you belong to an ataxia support group? You can always speak to Ataxia UK they are helpful. Yes it is lonely, feeling isolated, so maybe forums would help you there.

Best wishes.

[Knittlng in reply to penelope2]

Thank you it helps to share feelings

[ninotchka]

Excellent synopsis of many of my own feelings and perceptions! I totally agree with you about anti-depressants...I don't want them. Everything has side effects, and usually one of them is dizziness. So, onward we go, ever hopeful.