Hi i'm Beth, an 27 year old

Hi my name is Beth, it has taken me a long time to do something like this. I am an 27- year-old living with ataxia with isn’t inherited, mine is that the cerebellum hadn’t developed properly at birth so they call it (cerebellar ataxia) it is very hard for me as i can’t ride a bike, am very unsteady on my feet, my speech isn’t brill. I dont know if this is anything to do with this but am having seizures, burning sensation in my head and my leg like something is crushing my leg.
I hope I can get to advice from others who have ataxia


Welcome Beth,
I’m sorry to hear that you’re experiencing those problems. The best thing that you can do is to exercise by doing cardio and strength exercises. It also helps to take vitamin D3 and vitamin B12 as long as your doctor says it is ok. These things are not cures but they have been shown to help. Especially the exercise.

I do a lot of exercise but for me it doesn’t seem to help me much

It’s very important to keep your joints and muscles moving to keep them fluid. While exercise is not a cure it might help with progression or at least slow it down. Keep it up!

Hi Beth, welcome :slightly_smiling_face: Despite the fact that we don’t all have the same type or diagnosis, we can empathise with similar challenges. The symptoms you mention are linked to ataxia. Generally speaking, Ataxia can be coped with by either …helping yourself by exercising as well as you can to retain muscle strength (this will also help keep stiffness and pain at bay), or having prescribed medication/therapy to help alleviate specific symptoms. You may already be taking medication to help with seizures, or have been referred to a SALT team (Speech and Language Therapy) :thinking:

Are you being seen for reviews, are you a member of a local Ataxia Support Group? You can find links to support groups on www.ataxia.org.uk :slightly_smiling_face:

Hi Beth, Like you I have been diagnosed with CA and presumed to be from birth. I was an awkward child physically but overcame it and it wasnt til my late 50’s that I thought my slightlly inturned foot was the reason I kept tripping up nothing or just losing my balance, However after surgery to straighten my foot, I was referred to neurologist who eventually diagnosed CA, I am 77 and still mobile so I hope that will give you some encouragement to, as others here recommend, eat healthily, exercise and control your weight. I have a 3 rollators for different types of use and a powered chair which has been used twice so far but that could be due to lockdown. Stay safe and dont forget to smile xx Patsy

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Beth, aside from the very good advice given I want you to give yourself permission to be clumsy and slower. Just going down the stairs may take 10 minutes, but take pride in your accomplishments. Daily chores with advanced ataxia are so hard but you’ll be amazed at what you can accomplish.

Thank you for your very kind words

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I have CA (late onset). I was living my life, minding my own business, when Ataxia got me in 2015. I’ll never forget it, I was in my classroom writing on the board when all of a sudden it was as if someone pushed me and I almost fell into my computer. Two MRIs, 4 neurologists, 1 ENT and a few PA visits later (by 2017) I was diagnosed. Needless to say, I’m no longer teaching, I have to use a walker, I can’t speak audibly, and my handwriting is horrible! I’m now on disability. It’s been really hard to get used to! I’m 61 and I had to retire early. Even though I’m not on here much, this website has been a blessing. Welcome and thank you for joining! Remember to exercise!

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Nice to speak to people with the same kind of diagnosis

Hi Beth! I’m 28, and have genetic ataxia. Welcome!

The seizures/burning sensations aren’t something I experience, but I’ve heard lots of people get pain relief from CBD oil - if it’s legal where you are, maybe it would help you?

In addition to exercise, stretching is really important. A lot of gait problems can arise just from muscles being too tight - which can happen easily if you, like me, are mostly sedentary. A while ago, I noticed I kept falling because my toes kept grazing against the ground mid-step, but I realized that was happening because my ankles/calves were too tight. After a few months of regular stretching (google “ankle dorsiflexion” for examples) that doesn’t happen anymore.

I’m not sure about seizures. I have seizures too but nobody else seems to. Everything else you mention sounds absolutely normal for ataxians. The burning doesn’t seem to be common but does happen sometimes. I also get it, also in the right upper arm (never left) and my feet are often cold and like you, I miss my bike.

Hi Beth! I am 19, I also have a type of cerebrall ataxia. However it is from the removal of a brain tumor in the cerebellum when I was 2 years old. Like you, it also took me a long time to do something like this, around 10 years. It is not something that is easy to do or admit to yourself, or to even feel like you are one of those people who can benefit from a support group… at least that is how I feel. It has been really useful to me and interesting to just realize the vast array of experiences of people like me. I am glad you are here! I have been able to work through it and now can function pretty well. It turned into a lot of determination and falls. But it eventually worked. I had to work on balancing on one foot for years before I could even hop on it, so keep it up! I assume the seizures are more a sympton of an underdeveloped cerebellum rather than a symptom of the CA. Have they started recently? I am glad that you are still playing football and getting outside!

Hi Jeggert.

The seizures started when I was 16 years old even though when I was 3 years old I had a bad one and was hospitalisation for 3 days so am not to sure what it is

Have you looked into a recumbent trike? I have one of the kinds with the two wheels in the front and one in the back. You can’t fall out of it unless you’re racing reckless around a corner. And even then, you’re already on the ground so not much harm done.

When I first started riding it, it did wonders for my confidence. Plus, it works out those troublesome core muscles without you even realizing it!

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I will have a look into it thank you

Hmmm, that is so interesting. I assume that the doctors have looked into them multiple times. When I had my brain tumor and started having seizures, I assume due to the death of cereral cells and the exspansion of a tumor, therefore inhibiting the cerebellum to do what it is supposed to do. I would think that you have something similair. NOT to imply that you have a tumor or anything like that, just that your cerebellum is being obstructed from doing it’s job to the fullest extent. I think the ataxia and the seizures are totally unrelated but may come from the same thing. However, your doctors definitly know better. That was just to explain my understanding of it!

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well to be quite honest my doctors don’t seem like they do know what they are doing. When I went for my last mri scan in march I got a call 4 weeks ago from my neurologist saying that she didn’t like the look of the scan so she’s fobbed me of and referred me to another hospital without me even knowing what is going on. I know am getting worse because I keep falling more days than not It wasn’t a good day yesterday as i went falling down some stairs bruised my back and did my ankle in.

:slightly_smiling_face: I hope your referral turns out to be useful. If you didn’t already know, AtaxiaUK have a 16-30 Support Group.

The group is for anyone with ataxia aged between 16 and 30 years old, looking to meet with others and make friends. The group is to support young people with ataxia and acts as a support network. Speaking to others who know how you feel can sometimes be the best kind of support. People who know exactly what you are going through, who can offer support and who can be unashamedly honest with one another! If you’d like to join the private Facebook group, drop Leanna Coleman an email at communications@ataxia.org.uk and she’ll send you an invite to join.

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