EA2

[Tottenham0102]

Hi I suffer with EA2 and in the mornings I get jelly legs and its the hardest thing about my condition. Does anyone else suffer with jelly legs? If so does anyone have any tips to help with that?

[edfosho]

I get really weak legs too, amongst dealing with many other symptoms. I just put up with it, take things slowly, know when you need a rest, avoid getting yourself into situations where you can't rest (I know that bit is not easy, especially whilst trying to enjoy hobbies!). I have a SYNE1 related cerebellar ataxia, and still coming to terms with it and learning how best to manage symptoms.

[Tottenham0102 in reply to edfosho]

Hi thanks for your comment. I'm sorry to hear that. If you don't mind me asking does it affect you at work? It affects me doing my job properly

[edfosho in reply to Tottenham0102]

Fortunately, I work at a desk, at home, 95% of the time and I can take regular breaks when needed. I run a small IT company with my Dad, so it's very flexible - managing workload, appointments etc. However, I do need to attend customer sites occasionally, and need to ensure I don't 'over do it' (e.g. making sure I don't plan too much in one day).

What sort of work are you doing? A desk job will obviously help, and something where you can take breaks when needed (even if it 5 minutes just to relax for a moment between tasks, meetings etc). I have also heard great reviews from Scope - scope.org.uk/employment-ser... - a UK charity that can assist with access to work for disabled people (I haven't used them myself, yet). I also recommend speaking to your current employer about any issues, or what you need to manage your symptoms.

[Tottenham0102 in reply to edfosho]

Oh OK I was looking to doing office work but I don't have any IT experience. I work as a support worker ie carer. I've done it for 9 years and I've never had a problem but I come out of a 7 year relationship about 10 months ago and stress can trigger my symptoms off

[edfosho in reply to Tottenham0102]

Sorry to hear - yes I believe stress triggers my symptoms quickly too. Interesting, I Googled the term "jelly legs" (when I first saw your post, first time I've actually heard it worded like that) and the first result was about how anxiety can trigger weakness in the legs - I haven't done more than a minute's research into it, but it sounds interesting, very similar to what I get, amongst many other symptoms.

Edit: On the work side of things, there's many office/desk jobs that require little IT experience.

[Tottenham0102 in reply to edfosho]

Yeah I actually thought I suffered with anxiety and I've been signed off work in the past with anxiety and I've gone to see a psychologist about it and everyone has come back and are surprised that I suffer with it because of how I am and then I realised it was not anxiety it was my condition. About the work thing can you point me in the right direction because every IT job I've looked for requires experience?

[edfosho in reply to Tottenham0102]

Work-wise, sorry I meant other non-IT jobs that are desk based, or office based e.g. an admin role, data entry, or other skilled jobs like finance or legal. Generally these require basic IT skills, such as navigating your way round a Windows desktop, or knowing how to print a Word document.

Edit: but if it's specifically IT roles you're looking for, there's tons of IT courses out there. Google's your friend. I hear LinkedIn Learning is good.

[Tottenham0102 in reply to edfosho]

Oh OK thanks I'll have a look

[wobblybee]

🤔Has your Neurologist offered 4-ap...It’s one of the meds specifically recommended for EA2

[Tottenham0102 in reply to wobblybee]

Hi thanks for your reply and no he hasn't. I am currently taking Acetazolamide

[ddmagee1]

I certainly can relate to your having problems with episodic ataxia, sir! I have had to deal with my legs becoming weak, many times, and have had a few falls, where I lost my balance! These weak spells seem to come at inopportune times, and are hard to predict, when they will occur! I’ve lived with this condition my entire life, and I’m still trying to cope and adjust, at 75 years old!I have been diagnosed with Cerebellar Ataxia, which occurred as a birth defect, when an artery attached itself to my brain stem, at the Cerebellar nerve root conjunction! I’ve had some of the best neurologists, and neurosurgeons analyze, and diagnose my condition, and, all have stated, it is an inoperable condition, because it lies so close to the brain’s control center. Doctor’s have had me on two blood pressure medicines, for years, that keep my blood pressure low. Anxiety, and getting myself extremely upset causes detrimental symptoms, like the weak legs, to act up. In the first 35 years of my life, it was not a major problem, and only occasionally flared up. As I got older, it gradually became worse. It didn’t help, when I had an accident riding a horse, at 36, and fractured/crushed a back vertebrae, at the lumbar level, breaking my back! I was not paralyzed, but have had many times, when I have leg weakness, and numbness! I’ve managed to get along, with out having a back operation. I’d rather not be operated on. My Aunt had a back operation on a vertebrae, at the Mayo Clinic, in the USA, and has not been able to walk, without a Wheeled Walker ever since! That was 25 years ago. It was a botched operation. So, when I saw your blog entry, Tottenham 0102, I thought I would try to encourage you, to hang in there! My job, in the early years was working assembly lines, in factories, and, after University, I worked my way up to supervisory and management jobs, in a major manufacturing company, in the USA! It was not easy many times, but my success was hard earned, and I stuck with working, without taking a disability. After I retired, I worked part time supervisor jobs, for about 10 years. I had to completely stop working any jobs, about 10 years ago, when I started to have symptoms, and was later diagnosed, with Parkinson’s Disease! That was when I joined Health Unlocked’s blogging! I have gotten the most emotional, and practical advice, support, from the wonderful people, who contribute to this blog! Actually, most of the practical information, of living with Ataxia, and PD, that have helped me, has come from this blog, rather than from Doctor’s, or other medical personnel! Welcome to HealthUnlocked.com -Ataxia!!

[Pacitto]

Hi wobbly legs oh yes I never know which way I am going! They just do there own thing. I have a walker, without this I am very unsteady.This last 6 months my speech has become a lot worse, jumbled, cannot say words get stuck I know what I want to say but it's gobbly guck. Jeez it's a language all of its own.

I go to Sheffield in Nov so I will see what happens.

Keep on being positive, you will find your own way and we are all here to listen and encourage on the toughest days. Xx