Tips and Tricks: Hi everyone! I’m Jess, the new... - Ataxia UK

Ataxia UK
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Tips and Tricks

Jess_Ataxia
Jess_AtaxiaAdministrator

Hi everyone! I’m Jess, the new Communications Intern.

I was just wondering if you could all share with me what your tips and tricks are to help with your ataxia symptoms? Are there certain things you do to help improve your well-being, or do you have a great hack for mobility issues?

Thanks!

23 Replies
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Hi Jess...... I am an undiagnosed Ataxian. But have the symptoms. Wide gait walking, balance problem, always falling over, furniture and wall walking indoors, use an electric powerchair when out and about. My wife is also my unpaid carer...... I have many other medical problems and I’m registered disabled.

What keeps me motivated, I am a British Military Veteran, I still go on parade with local Military Veterans, get out as much as possible, weather permitting.

I have not bothered getting diagnosed at an Ataxia Clinic, I dont want to know about anymore medical problems at the age of 76...... I put my medical problems to the back of my mind, and forget them, getting on with my life as best I can..... I live in the Garden of England(Kent) Uk.

Don 😀👍

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to Veteran250

Hi Don! So great to hear that you still go on parades when you can!

Hi I suggest getting your b12 levels checked as low levels cause ataxia and is very easily cured by injection or sub lingual tablets.

Exercise helps .. I do it first thing after visiting bathroom or never get round to it. Too tired to make the effort later. Obviously some days other commitments dont permit.

My favourite exercise machine is a vibroplate with front handle which I use for hula hoop movements, knee bends and just raising heels then toes.

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to PatsyColchester

Hi! Exercise is definitely key! Sounds like you have a great routine

yes .. not always of course . I also use Nintendo Wii which monitors my progression .. I am 77 now and progression has been very slow. I have idiopathic CA and still using rollator indoors and for short distances outside. Good luck with your work. Patsy

Dear Jess_Ataxia, I'll be 66 years of age in February. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) at 49 years of age, although I had extremely minor symptoms starting at about 43 years of age. Therefore, I've had ataxia 20+ years. In 2017, I had genetic exome testing and a single Niemann Pick C (NPC) gene was found. I had a skin biopsy followed by a blood test, which was positive for NPC. It was ultimately determined I have ataxia due to late/adult onset NPC disease,. Over the years my ataxia symptoms have progressed. I bot only have a single NPC gene but an unknown variant as well. First I used a cane/stick and now I use a 3-wheeled rollator to get around. I had my 6 month neurology appt. the other day and I found out I'm now also showing symptoms of Parkinsons Disease or Parkinsonism. So I'm going to try the drug Levadopa (the drug of choice for Parkinsons) to see if it helps. Anyway, I do neurological physical therapy once each year (my insurance will only pay for 30 visits per year) for balance and also exercise on a NuStep in my home. I do some floor exercises also for strength, as well as some standing (holding onto the back of a sturdy chair) balance exercises. Finally, I do a series of stretches each day, as they seem to make my muscles feel better! I did aquatic therapy in a warm water pool a couple of years ago and would like to do it again, as no chance of falling in the water...,ha! I try to eat as healthy as possible, lots of veggies & fruit! I rarely eat processed food! My best to you..., ;o)

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to february

Hi, I'm so sorry to hear about your progression of symptoms. Great that you're still doing your exercises and finding that they are helping!

Hi exercise is the key.The more you lose fitness the more tired you get and more wobbly!

🙂I heartily agree with everybody’s comments re exercise. Recently, I’ve found if I sit still for just half an hour stiffness sets in 🙄 A NeuroPhysio advised me to set a timer, just to make sure I actually got up and walked about regularly. And, she also suggested I count my steps ( I do it on an app on my IPhone).

This morning, I was waiting for a lift from an appointment, and thought about sitting because the person was late. Instead, I paced back and forth just to keep my step count up 😉

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to wobblybee

Setting a timer and goals is a great idea!

Hi,

I agree with the other comments that exercises are paramount. Also so is stretching.

I go to a physiotherapist twice a week and do a total of 4 hours a week there. I exercise there and then the physiotherapist stretches me and then massages my neck and sorts out any other problems I may have.

I have tried exercising at home every day as well, but this proves to be too much for me. I value social time with friends and family. If I exercise every day then I'm too tired to enjoy anything else. So now I just work hard at the physiotherapist.

I get very tired very easily and have found that the only way to be at all functional is to rest/, sleep for minimum 2 hours every afternoon. I actually get right into bed and nobody disturbs me.

I eat healthily. Lots of fresh veg and fruit. Never buy processed food, everything here is cooked from scratch. However I do love a KFC occasionally! So I allow myself to have a little treat.

I think you have to try to embrace life and do what I can however I can and sod what other people think. I go into the sea on all fours and get out like that too. Usually I have complete strangers offering to help me - which I very rarely accept. If someone pulls me about it leaves me with pain for days so I'd rather do things my own way.

I find the tiredness the most difficult thing to deal with. Though I'm quite dangerously wobbily!

Oh I could go on and on! But I'd better stop 😂

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to ww-wibblywobbly

Hi! Great to hear that you're getting on so well with the physio!

Hi Jess

I am afraid I have nothing new to add. I complete balance exercises once or twice a day use a stationary bike and try to walk the track assisted every second day. I have a weighted vest, try to eat healthy and stay away from gluton due to an increase in headaches and wobbles. I take several vitamins and find b 12 to be of the most importance to me personally. I was just diagnosed this past August. We do not know what is causing my ataxia as of yet, still in the process of testing. I do have positive antibodies for some type of cancer -tumor. So a possibility of paraneoplastic syndrome ataxia. I have learned so much from the wonderful members on this and other sites. My neurogist did not discuss the importance of exercise etc at all with me. I also have a walker for work and long distances outside of the house. I use furniture in the house to walk. I sit in the shower as that is a real chore as I fall backwards if I close my eyes. I have problems with uneven surfaces stairs ramps elevators and escalators....not sure if others do? I have had to adjust how I type...may need to look into that further for some type of equipment. Like to use non break able glasses when possible as I tend to drop things.

Jess_Ataxia
Jess_AtaxiaAdministrator
in reply to Castlelight

Hi, I'm sorry your doctor wasn't able to be more informative but it's great to hear that you've found help and support through the ataxia community. Getting some typing equipment to help you is such a great idea!

Your last dozen lines of your post, describes me to a tee? 😀

Exercise, range of motion stretching, and having a positive attitude, are very important to utilize, when one is dealing with Ataxia!

Jess_Ataxia
Jess_AtaxiaAdministrator

A positive mindset is key! Thanks for this

Hi Jess

I have SCA 15. Ataxia was diagnosed over 20 years ago, but the 15 only a couple of years ago. My tip is that as soon as I started to use a walking stick people's attitude to me became much more positive and considerate, No more police tests for drunk driving, no more whispers about me being drunk, people got out of my way if I was walking on the pavement - overall it was very positive, even encouraging, Other people are nearly all kind and considerate,

Jess_Ataxia
Jess_AtaxiaAdministrator

Hi! It's so great to hear that people are being so much kinder towards you- it's how it should be !

Hello Jess I’m 74 , have cerebellar Ataxia inherited from my father. Use a trolley inside the house and a rollator outside . The only tip is when making a cup of tea put the cup into a large bowl , when wheel the trolley and the slops go into the large bowl.

Find it is such a long day , so try to push the rollator around the block for some fresh air . My husband is very good , we live on top of a steep hill and have no car, so get a taxi when needed.

I knit and listen to audio books and play games on my tablet to keep the brain active.

Our family live many miles away so face time is very good.

Find as I get older the Ataxia symptoms are getting worse.

Try to find things that make me smile You Tube is very good.

Wish you all the best Jess in your new job

Jess_Ataxia
Jess_AtaxiaAdministrator

Hi, putting the tea in a bowl is a great idea! Sorry to hear that your symptoms are getting worse but it's good that you're finding ways to keep your brain active!

Good luck.

Not sure if common problem but my temperature control is nil - body gets far too hot but feet can be freezing!!

Socks are a must in walker basket, but I was getting lines so use these now

amazon.co.uk/gp/product/B00...

I wear a wet clothe (old napkin) round neck and at night and when out in wheelchair use cool blocks. I have found fans help and personal are great - my kids bought me one to charge with computer, brilliant x

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