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Ataxia UK
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Vitamins...and walking!

A couple of questions. Due to the stress of the breakdown of a long-term relationship I have put on weight and need to shift it. Many ideas I look at include brisk walking! Can walk but the risk of falling hugely reduces my confidence and as my son said 'you walk as if you have a neck brace on'...so stiffly I imagine. What do you do to lose weight? Secondly vitamins...is there any single vitamin to take to help or just a multivitamin?

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I take vitamin D and also vitamin E, as for exercise I am too in same posìtion just seem to be getting bigger day by day 🙄

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Folks

i use a treadmill for walking and a stationary bike. You can place the bike in a corridor so if you over balance you can bump back up.

Also there is an app called iyoga that will lead through some yoga moves that will stretch and raise the metabolism to burn fat.

If you exercise before brekkie you will get the motor running (metabolism) early and burn food better.

Paddym

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Hi Jillj, My GP gave me strong vitamin B as it is suppose to help with neuro problems and I have vitamin D. I am always stressed never goes away, I have diazepam but rarely, this helps with stress and muscle twitching all over my body. If I feel too stressed I try and do one of my hobbies painting or go on my iPad, listen to music.

Suzie

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Hi Suzie,

Would you mind elaborating on "strong vitamin B"? Do you know which vitamin B and what the dosage is? Also have you seen my post on a new vitamin B called Niagen, and is your doctor aware of the research surrounding Niagen?

Thanks for any information.

Joe

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Hi Joe, no I have not seen your post on niagen, is it good or bad. My tablets are Vitamin B Compound strong tablets, twice a day. Not sure what type it is.

Suzie

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Suzie,

Vitamin B in general has a great deal of positive research building to support it's use in helping neurological disorders and Niagen is a new vitamin B that is just beginning to be researched, but the preliminary research in animal models and the earliest research in humans is encouraging. So far, however, the only human research results are those from the manufacturer. The good news is several national health institutes are recruiting for human clinical trials involving Niagen for treatment of a wide variety of disorders, the most serious being a study to try and treat Cockayne Syndrome. If your doctor has you on a vitamin B supplement, you might consider sharing some of the information I posted here with him next time you visit just to see what he says.

Joe

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Thanks Joe, yes I will mention it to her next time I see her, interesting.

Suzie

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Hi Jillj, I manage to walk for 10 minutes on the treadmill at the local gym 4 times a week. The speed I do is 5km an hour so the distance I achieve is less than a kilometre, and the indicator says I burn about 40 calories. There are supports which I cling on to for dear life! There's no way I could walk anywhere else for 10 minutes without falling over.

I then do a variety of other exercises (including a static bicycle) aimed at keeping me mobile if not flexible. Hope this helps.

Derek

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Hi Jill,

The National Center for Biotechnology Information hosts a search engine that contains an enormous amount of information that you can bring to your doctor to help come up with the latest in research related to ataxia, vitamins, diet, and exercise. The internet is full of both scientific and unscientific advice so you need to make sure that anything you hear first gets vetted by your doctor.

Here is the website:

ncbi.nlm.nih.gov/pubmed/

I will start you off with 3 papers that you can use as a spring board for further research:

ncbi.nlm.nih.gov/pubmed/281...

ncbi.nlm.nih.gov/pmc/articl...

sciencedirect.com/science/a...

I am not a doctor, but I will share my educated thoughts on your specific question that I hope you will use to further your own research. A diet low in simple carbs and rich in nutritious foods like kale has been shown to have tremendous overall health benefits. Equally true, simple walking has been shown to be an outstanding form of exercise in helping maintain weight. Finally, there is a large body of research on vitamin B in particular with regards to neurological disorders such as ataxia, BUT some people have become very ill whilst trying to take too much vitamin B without consulting a doctor, and furthermore there are several types of vitamin B with Niagen being the newest and least known by doctors, but the one that currently holds the most promise.

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Hi I’m on extra strong vit b 2 x3 daily thiamin extra strong 1x3 daily Thant’s what my gp prescribed

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Guy,

What kind of ataxia do you have?

If by any millionth of a chance you think of it next time you visit your GP, I'd love to know what research he has to support Thiamine as a treatment. I searched extensively and found Thiamine research related to Friedreich's Ataxia, but the mechanism of how it works is unclear and FA is an ataxia that results from a lack of cellular function whereas most SCAs are the opposite. In any case thanks for sharing the info on vitamin B.

Joe

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Thanks for your replies. I will certainly look into some of your suggestions for vitamins. At my last ataxia clinic appointment the consultant suggested I try and walk more, to keep myself going. That's all very well, but like I say, I feel nervous out and about and therefore I think because I think I'm going to fall, I walk very rigidly. I have Late Onset Idiopathic Cerebellar Ataxia. At the moment I can walk, but uneven surfaces and stairs/steps without handrails pose a problem for me, and also kerbs. I dither at the edge of a kerb before stepping out! I have a rescue dog, so would like to take her on exciting walks, but am very worried that if I encounter uneven ground or steps, I will either fall or get stuck. I recently invested in a hiking pole, so that people will think I'm out for a hike, rather than doddering along with a walking stick!

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I have it, my Mum gave it to me, my sister and her son. I do the opposite of my sister who is in a wheelchair, no speech hardly and says "I cant be arsed"! I do Pilates every day (Allen Menzies Lower Back Pain) DVD from Amazon £7.99) at home so no one sees, when I get up. Take 1 pain killer if I need. Take B6, B12 as I read a book on the cyclists on the Tour de France and they swear by it for energy. Q C10 (recommended by Doctors,rearch shows it stabalizes Ataxia. D and E and they do all work as my energy has improved so much. I walk with a walker around the shops as it gives me so much more confidence, I slow down, I don't wobble when standing still ( my core is brilliant) and I have no bingo wings thanks to the exercises. And after seeing people having chemo in hospital I thank god I don't have cancer (that makes me more positive)

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OhI by the way when shopping I used a shopper ( before the walker although I get more shopping o )n the handles

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Sorry my computer went funny. I was trying to say, it helps on kerbs. You

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