Hi - am new here

[Capricorn9157]

Hi, my name is Steve and recently diagnosed with cerebellar ataxia. I live alone and looking to meet others to exchange tips and support. I live in South Yorkshire and will look at going to the Sheffield support group. Hope to hear from you soon.

[Litty]

Welcome

Sorry I am miles from Sheffield but every so often I make it to our local support group and I have made lots of lovely friends.

I think probably the best tip is to try and stay as active for as long as you can. Never believe anything is too hard until you try and often you can adapt stuff.

You need more rests than you think. Hobbies good and keep active. I do big sudoku, play boggle.

Writing and speech can be hard but practise.

Good luck x

[Capricorn9157 in reply to Litty]

Thanks Litty, I try to stay as active as I can but find it difficult. I use crutches to aid walking and can only walk about 200 yards before I have to rest. I spend time on the internet doing general stuff, read, cook when I can. Dont intend to give in to anything until I have to. Have a goodun.

[isabelalfaiate in reply to Capricorn9157]

Hi Capricorn9157,

I am also capricorn, just one tip, when sitting in front of your computer, stand up and sit down a few times every hour, it strengthens your legs and you do not even notice you are exercising.

best wishes

Isabel

[Capricorn9157 in reply to isabelalfaiate]

Thanks Isabel, I keep moving around when I can. Get up to get drinks, cook, etc...honestly, a mans work is never done...rofl. Seriously though, the Physio has given me exercises to do at home which helps, plus when sitting I find rolling and flexing my feet helps keep my calves and ankles looser. I am looking to have a gyroscope implant to help with my balance..:))

Steve

[Litty in reply to Capricorn9157]

We are all so different so it may not work for you, but I noticed my Dad used crutches and I am much safer and quicker with my 4 big wheeled walker. I have a lighter weight 3 wheels walker for my daughter’s little car and use upstairs too x

[wobblybee]

Hi Steve, welcome🙂 Are you working at the moment? That was the real big change for me, when I realised a decision had to be made.

With the winter approaching, staying indoors becomes more appealing😉 Apart from our group here, there are other Facebook Ataxia Support Groups you can while away the time with🙂 And, of course meeting up with your local Support Group will help🙂

Read up on the condition, on ataxia.org.uk and ataxia.org🙂 It really helps to understand what's going on with your body.

Stay active (staying safe) as much as possible, sitting still in one position encourages stiffness (I know only too well)😏 If you know you're inclined to wobble and lose balance easily, don't put off using a walking stick. It'll help others to be aware and show consideration, and hopefully stop you falling off kerbs😏 Losing perception of depth and spatial awareness takes some coming to terms with, try to allow yourself plenty of time and don't rush around. 🙂xBeryl

[Veteran250 in reply to wobblybee]

Hello Steve and welcome Beryl has given you so much info, what can I say except maybe this, when I first started using a walking stick I felt safer using two sticks, sadly for me I progressed to a manual wheelchair, then electric scooter, I'm getting an electric powerchair soon as I'm a Military Veteran and still go on parade...... take care and stay safe when out and about.

Don.

[Capricorn9157 in reply to Veteran250]

Cheers Don, good to hear you still go on parades. I applaud servicemen and vets. I have progressed from a walking stick (still use around my home) to crutches. As to the future, will see. What happens will happen but if I can delay it all the better. Good to hear from you and all the best.

Steve

[ddmagee1 in reply to wobblybee]

Excellent advice, wobblybee!

[Capricorn9157 in reply to wobblybee]

Hi Beryl, thanks for your tips. I am not working at the moment. Having to use crutches and only able to walk about 200 yards makes finding work difficult, especially when I am a slow walker. H&S factors prove difficult for employers. Have tried to look for 'work from home' stuff, but most are a rip off,either having to pay a bond, or having to buy own equipment, dedicated net connections, mobiles etc. and the pay is very poor and normally piece work.

Have read about condition on ataxia.uk, have joined them and following on fb and LinkdIn, and hope to be able to fund-raise for them in the future. Also, my consultant is very good and supportive, as is my physiotherapist.

Have got used to perceptions and spatial awareness over last few years. I think I was diagnosed a few years too late as I presented symptoms to my gp several years ago but nothing done. But over this time I adjusted my day-to-day living to suit my condition.

Steve

[kathie29]

HI Steve.no tips yet but stay tuned, a medicine is in the works!

[Capricorn9157 in reply to kathie29]

Thanks Kathie, would be good to be kept up to date with progress on future med developments.

Steve

[kathie29 in reply to Capricorn9157]

I WILL post when medicine is released in the meanwhile go to Biohaven labs trial of Trigriluzole.

[Capricorn9157 in reply to kathie29]

Cheers Kathie

[Capricorn9157 in reply to kathie29]

Kathie,

Just looked at the trial info and it seems to be going well.

Steve

[ddmagee1]

Welcome Steve, This is a good forum and great people to discuss Ataxia with. Over and over, I've come to realize, that no one knows best, on how to relate and understand my problems with Ataxia, then another person who suffers from the same, or similar, ailment. Having a nearby support group will be very helpful for you. Best of luck to you!

[Capricorn9157 in reply to ddmagee1]

Thanks ddmagee1, have contacted local support group and have had a great response from members here. I had never heard of this condition until I was diagnosed and am sure there are many, many people out there who havent yet. Best of luck to you to.

Steve

[ddmagee1 in reply to Capricorn9157]

Thanks Steve! My cerebellar Ataxia diagnosis came from a birth defect-arterial -pressing on cerebellum, causing multiple cerebellar symptoms, including Ataxia. Additionally, now that I am in my 70's, I have also been diagnosed with the neuro-degenerative disease, known as Parkinson's. Support groups and individuals with like problems, communicating with each other, has immeasurably helped me with being able to cope with the ups and down of chronic, debilitating illness.

[Capricorn9157 in reply to ddmagee1]

I am glad you have support and sorry to hear of the additional diagnoses. Wish you all the best.

Steve