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Ataxia UK
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Ataxia

Hi I'm new to this I have ataxia and I'm wondering if there any other people out there with this problem

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Hi Oswaldtwistle :-)

We all have SCA here, symptoms can vary enormously and to a greater or lessor

degree. But, whatever symptom your coping with, you can almost guarantee

somebody else here will also have it :-)

Tremors and shaking can effect people differently, the same with spasmodic

jerks. Sometimes I find typing difficult, words often appear on the screen that

I didn't intend :-)

Have you seen a Neurologist who specialises in Ataxia? :-) xBeryl

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Yes I'm currently under a specialist at Sheffield hallamshire I'm on a number of tablets but progressively getting worse

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I've heard of that hospital being mentioned, as I recall it's highly

regarded :-)

My own symptoms crept on over a period of about 20yrs, I didn't

get a diagnosis until 2011, and even then it was considered

Idiopathic, so really I was no better off.

Seeing a Neuro Physiotherapist can be very helpful.

If you feel you haven't been given enough information about Ataxia

by your Neurologist, AtaxiaUK have info on their website.

It is horrible when you're first diagnosed, trying to get your head

around it all, one of the worst things I realised was how little GPs

know about the condition.

If it's at all possible, try to attend an Ataxia Support Group, there's

a list of locations on AtaxiaUK website :-) or ring the person who

runs the group nearest to you, emotional support is guaranteed :-)

Actually speaking to someone else who knows exactly how feel

can be a turning point :-) xB

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I've been given a lot of information but it's taking it all in to be honest

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I know. Give yourself time to think it through,

try not to let your mind run away with itself.

I really recommend speaking to other people

who cope in the same way.

You first conversation with another person who

has SCA will be a revelation :-) xB

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Hi Beryl, i stil have not been referred to an ataxia neurologist or phisiotheripist. xray 25

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Hi xray25:-)

Sometimes it can take an unrealistic length of time for these Appts.

Your nearest Ataxia Centre, might not be on your doorstep.

If this would give you peace of mind, I would pursue it. But bear in

mind you may not be told anything different from that of the

Neurologist who treats you for the Stroke, if that's what triggered it.

The first referral from my GP was to a basic physiotherapist, even

though he knew about my Ataxia.

The therapist showed no interest in SCA, she gave my notes a cursory

glance.

I hounded the GP and he managed to get me an appt with a Neuro

Physio, who was totally different in her approach:-) she was used to

helping people cope with disability combined with neurological problems,

it was a revelation. So much patience and compassion:-)

Best wishes :-) xB

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+1 for the neuro physio, its a whole different kettle of fish to what you will get from a musculoskeletal physio. They will help you with everything from balance /strength exercises through to house modifications and legal support, though in my case the emphasis is on helping me to help myself. The psychological problems involved with having a neurological disability are quite extreme and she will help you cope with these as well. A neuro physio will always appreciate the mind/body connection.

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Hello to Oswaldtwistle.....You are most certainly not on your own - there must be thousands of us!. According to my dictionary, 'it is the loss of the ability to control or coordinate one's movements'. I have been advised that there is yet no cure - I have suffered with this condition for 18-months, There are two things I endeavour to do every day, exercise (in the bathroom - where the walls are close enough to steady myself) i.e. swing my arms out and back -bend each leg towards my stomach as far as I can - taking care to have one hand just touching the wall, combined with this, I pace the house, from the kitchen sink to the front door - again, whilst I am close enough to be able to touch either a wall, or piece of furniture - the thing is not to sit too long. I also bought a small 'tredle' bike like gadget - I sit in a straight-backed chair, put my feet on to the peddles, through the straps - to hold my feet in place - and peddle, about 500 times (there is a counter displayed so you don't have to count yourself). One other purchase I have made, it is a Circulation Booster. It is an electrical operated item, you place your bare feet on the platform, and with a hand control, you decide what 'strength' you want to set the machine too. I started at 30 and gradually raised it to 55. The length of time is set for 30minutes each session. You can feel the electric current in your legs....This is well worth doing.

In other words, you've just got to keep moving as much as possible. I cannot write legibly now, so I type when necessary. I cannot walk out alone...I use a 3-wheeled 'trolley' for just short walks, and a wheelchair when going (or being taken) any distance. I'm in my 90 th year....so just look after yourself, with help...but don't sit too long. Best of luck....Bill (Oldham)

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Hi Bill :-) I've got a 'circulation booster' too, I'm no-where near 30

never mind 55 :-)

Recently severe pain in my calves has been helped by this and

a small 'stepper'.

I've heard mention of a table top pedal machine, to keep arm

muscles toned.

You're so right when you say don't sit still for too long, it doesn't

take long for stiffness to set in :-) xBeryl

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Hi Beryl..thanks for your acknowledgement.----Hey! setting your circulation booster at less than 30, will take years to make any difference!....don't you like the electrical impulses you get, starting at your feet and gradually 'pulsating' up your calves?...at 55 setting, it really does help----it starts to pulse in 'spats' of 5, then a short break, and a couple of times, as many as 14 pulses one after the other.

Don't be afraid, indeed you will come to like the pulsing!! It will do you no harm whatsoever. I'm living proof of this...I shall be 90 yrs of age next.

Give it some welly, Beryl.......Good Luck!....Bill

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Hi Beryl.

I just recently was diagnosed with Ataxia at 72 years young it's

very difficult to wrap my brain around it (as one say's ) I have

beeing trying to be positive, and reading the book by Louise Hay

You can heal your body, I just started it . wanted to reach out to someone out there, that is familiar with this disease.

I like what you said to Bill.

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Hi Beryl..thanks for your acknowledgement.----Hey! setting your circulation booster at less than 30, will take years to make any difference!....don't you like the electrical impulses you get, starting at your feet and gradually 'pulsating' up your calves?...at 55 setting, it really does help----it starts to pulse in 'spats' of 5, then a short break, and a couple of times, as many as 14 pulses one after the other.

Don't be afraid, indeed you will come to like the pulsing!! It will do you no harm whatsoever. I'm living proof of this...I shall be 90 yrs of age next.

Give it some welly, Beryl.......Good Luck!....Bill

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You're an inspiration Bill :-) memo to self, do not be a wimp!

I'd misplaced the instructions and was doing it by guesswork.

Respect to your age :-) I hope it works for me :-) xBeryl

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Hi Brighouse

congrats on being 90 next, i'm 48 yrs and at times I feel like a antique :-) WOW your doing well :-) :-)

MEMO to self...if bill can do it, I can!!!!!!! :-)

Helen

P.S keep up the good work

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I have recently been diagnosed with what I believe is idiopathic CA. I am developing more and more tremors and my left arm seems to be the most affected at the moment. If I stand still (in a Q or similar) my legs begin to shake. I have been referred to a Neurologist who has recommended me for IVIG treatment, I have been having this over the last year and discussing this with the Neurologist he expects it to steady my condition rather than anything else. The thing that worries me the most is not knowing how much worse it could get, although I have resisted using any aids, (probably a vanity thing and me wishing it is no worse) I think I may have to use walking sticks more. Certainly whilst walking around a supermarket pushing and holding on to a trolley is very helpful. Before this condition I prided myself in being able to carry out most physical activities from DIY to gardening and I miss being able to carry out simple tasks. My job is a very high pressured and sometimes stressful one but as my symptoms have got steadily worse I have decided to ask my employer for ill health retirement, I will wait to see if they will agree. Boredom will become my greatest enemy.

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"but as my symptoms have got steadily worse I have decided to ask my employer for ill health retirement"

********

that´s the way it is, I think.

my greatest enemy is depression

Regards

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Hi trac 67 when you have been very active and kept your self healthy then it comes to a big halt your mind has gone into a condition of what has gone wrong and when it happens later in life it becomes a shock and then doubt sets in the minds and send it into negativeness. The hardest thing when you have been told is get all the facts and depending of what stage you are at, just sit down put the negatives of yourself about having CA and be truthful with yourself on a piece of paper and if you can't make them into positive then ask ataxia nurse, she be able to go through with you step by step your concerns that you can't get your head around.You are, I'm and thousands what you are going through this because it's natural. Have you been given your type of gene relating to your ataxia because a lot of people who have it take medication that can sustain that it does not get better or get worse. That needs sorting out by asking one of the following neurologist or ataxia nurse, and your GP

You have to go step by step each day soughting who to see where to go and who to talk to Ataxia uk is a good point of call.

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Lessening the pressure and stress levels will probably ease SCA symptoms

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I wrote a lot more than that opening sentence but it was chopped off!

This has happened before, bugs in the system?

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I was diagnosed in 2006.There are approx 10,000 adults and 1,000 children with Cerebellar Ataxia and Freidrich's Ataxia. Have you looked at the Ataxia UK website yet? There should be a support group near you. If you find one please let me know where it is and when they meet. I will be in your are sometime, I was diagnosed H.I.V. Positive in Blackburn Royal Infirmary, April 2003. This was because I lived in Blackburn 2002-2004 so have many friends in Blackburn and surrounding areas. I wish you well. Good luck with your endeavours.

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YES I HAVE AN ATAXI I IS MSA ( MULTIPLY SYSTEM ATROPHY)UT I AM IN THE USA

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