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Ataxia UK
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info for understanding For Me Jemma 42

Hi everybody, I am new here, I seen my Neurologist Last Thursday, and she said that it is time to get a wheelchair, as I must not walk far ( I can't anyway ) so must use the wheelchair---- as I have Ataxia !!!!---- It was the same Neurologist I seen years ago --Ataxia was not mentioned then , --- it is too long a story to type out, I shall try my best --- 1990 I had a MRI Scan, I could not balance and my shaking was awful -- was told I had Parkinson's Disease , so was treated for that, --- more problems with severe Depression came and went, My "Parkinson's " seemed to the hospital to change from that to --- Essential Tremor !!! Okay, !! so I carried on, I got worse, then a bit better and worse again, so from 1990, I have battled on my own, TILL ---- I got osteoporosis, broken bones --- ribs, shoulder, elbow, ankle , my balance has got so bad that I cannot stand at all now, unless my back is against a wall, I bought myself a walker, and walking sticks, ---4 years ago, to manage in my home alone became unbearable, so my Daughter came and took me to live with her, She took me to her G.P., as I have peripheral Neuropathy, my feet were so swollen, and Numb, the G P got me an appointment with the Neurologist , I am awaiting another Scan, she took blood,--- had that before years ago from the same Neurologist, to look for "a Gene " !!!, after some tests with her she said that I have Ataxia, that is when she said it was time for me to be in the wheelchair, she spoke as if I should Know that I have had ataxia for years !!!, I am Baffled. ???

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Hi lottiejemma

Wow-that is quite a story! I am so sorry about what you have been through.

Do you know what type of ataxia you have?

Best wishes

Harriet

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thank you Harriet , I am not sure what type, I always forget what is said, As the Neurologist had me taken Bloods --- seven vials !!!, and My reflexes with the hammer and pin, I could not feel the pin , just like a little soft tap, also the reflexes were non existing, again , just felt a little tap, like a sponge , so I await results from the blood tests, and to have a heart x-ray, so I just guessed that I have the Fredericks one ??, as she said the blood test I had years ago, found a gene, But this test is for another Gene ---- Oh I am so Baffled, all I know is , she said I have Ataxia, and told my daughter , that I should use a wheelchair, as my walker with the seat is not good enough now with my Balance and walking . Should I phone her and ask ? or wait for results, or will my GP let me know when he hears from the Neurologist?? I am so tired -- a bit depressed, and feeling like I am not Me, and I am just looking on . --- lottiejemma

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Hi lottiegemma

Has the neurologist that you saw last Thursday given you an appointment to go and see her again?

Harriet

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yes in three months time -- June

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Ah right. DNA rests can take a little while to come back. I would wait to see your neurologist in June to get the results. In any event they would probably be able to explain the results much better than your GP. Before you see your neurologist write down any questions you want to ask. You will forget things during the appointment and it is horrible to walk out thinking ‘Grr, I meant to ask that!’

If it hasn’t been suggested to you already please ask for a referral to occupational therapy (OT) and physiotherapy. Apart from anything else it is essential that you have the correct walking aid/wheelchair and OTs and Physios are best place to advise.

Harriet

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Hi Lottiejemma.

When I ended up walking with a wide gait, and falling over, being a Military Veteran, I applied to the RAF for assistance.

They gave me an electric scooter and last year they changed it for an electric powerchair..... it gives me so much freedom without worrying about falling over.

If you can afford an electric wheelchair, I would recommend it as it will save a member of your family having to push you around in a manual wheelchair, and you having to rely on them, I am 75 now and get out and about as often as I can.

I wish you well for the future.

Don 😀🌞🌹

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the neurologist said that she would do a referral for a physio, for exercise's for me ,my C P N has put in a referral for the .o.t , who are coming to see what needs done in the house, I shall need a Wet room, where my walk in shower is, hate the thought of a wet room , but hey , Safety First. I shall need an electric wheelchair, and will need work done from the door to get out and in, only have a very small cottage over 100 years old, and have steps to get in and out,, can't see a wheelchair fitting into the hall ??--- anyway, How are you ? Keep well and safe jemma

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The neurologist has done a referral for the physiotherapist -- and my C P N has put in a referral for the O T , I am under the O T already, from the past.

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I HATE THAT"WHEN DOCTOR'S LOOK AT YOU",EXPECTING YOU TO KNOW WHAT THEY ARE ON ABOUT....

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I wish I can be in a wheel chair my back hurts I have EA1

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I have a lot of pain in my back , and ankles, , My speech seems okay " well to me it does " --- Also, I have no bother eating or drinking, well, just sometimes I Chock , but I have an "overeating disorder", mostly sweet stuff and bread, I am 4 stone overweight, No wonder my balance is bad, don't know what bothers me most, my overeating , or my Ataxia, anyone else bothered with overeating ?

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Hi Gemma. It is Anne here what I used to go do was confitte eat whan my ataxia was bad

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Comfort eat ??, I do that, but it is always the wrong things, sweet stuff !!, if only I can eat raw carrots well I can, but oh dear, the sweets and crisps call , causes chocking -- do you have sweet cravings Anne ?

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Oh yes it's really bad x

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it was good speaking to you today, I have felt so tired and in pain, have just had a strong painkiller, and going to have an early night, THE O T did not come today, maybe tomorrow, I have a clinic appointment tomorrow , it is in the diary, it just says, clinic 1130, but I can't remember what clinic, and neither does my daughter !!!, will phone the health service in the morning,, we are fortunate here, the surgery, clinics are all in the same building , my memory is not good , it is getting worse, is this quite right with Ataxia, I am starting to worry ----also I am always pressing the wrong letter on my computer, that is something new ! anyone affected with memory

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