Ataxia Diagnosis.: hello my friends, after having... - Ataxia UK

Ataxia UK

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Ataxia Diagnosis.

Veteran250 profile image
18 Replies

hello my friends, after having had body tremors and shaking hand since I was a small boy, I had an appointment with a Neurologist at my local hospital on Saturday 3rd February, and he sent a letter to my GP, and a copy to me, stating that I had Ataxia, but he didn’t say which type.

I have used an electric wheelchair to get about outside for nigh on twenty years, can’t walk in a straight line, but get tired and exhausted anyway…… I use furniture, walls and doorframes to walk around indoors…… my county council(Kent) put a disabled parking bay outside my house, and lowered the curb, my local council converted my bathroom inti a wetroom, with shower and safety bars, and also installed a through the floor lift from my dining room up to the small bedroom…… all this at no expence to me

Hoping you can all get out to enjoy the forthcoming spring/summer.

Take care and stay safe out there folks.

Don(Veteran250)

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Veteran250 profile image
Veteran250
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18 Replies
Cavalierrubie profile image
Cavalierrubie

Sorry to hear of all your problems. I hope now the council have installed aids for you that life will be that much better for you. Thank goodness we have the summer to look forward to. It has been a long miserable winter with all the rain, so hope you will be able to get out and about very soon. We all need a break l think. Keep smiling through and keep safe.

wobblybee profile image
wobblybee

Hi Don🙂 It’s good to hear from you…it’s been a while.

🙂You’ve had wonderful help from your Council..I hope it’s made day to day more manageable.

I still don’t know what’s caused my ataxia....but hope to hear results of Whole Genome Sequencing in the near future.

🙂 Like most people..I’m looking forward to warmer weather.

Plain profile image
Plain

Nice to hear from you, yes I find door frames very useful too.

Sweetheartonvdayl profile image
Sweetheartonvdayl

Hi Don 🙂Furniture walking is my "thing ". Thank God you got help w/the counsel @ no cost to you.

🙏🧡Lisa 💕

MaggieSylvie profile image
MaggieSylvie

Good to hear from you Veteran250. It sounds as if your local council is unusually caring. I have body tremors now and put it down to Pregabalin but I'm not sure. I've been asleep all day pretty much and think I overdosed last night. Or just tiired. I will go to bed soon.

PatsyIpswich profile image
PatsyIpswich

Hey Don Your services in your area sound good but can Imagine it wasn't smooth tasks. How are you? X

Jellybean75 profile image
Jellybean75

Hi Don. Its great that you've been able to have your house adapted in so many ways. Must be of great benefit to you. Like all the others on here am looking forward to being able to get outside in the garden

paul456 profile image
paul456

Good to hear from you Don thought you had gone to Russia on black ops to sort out Vlad the mad.

Take care my friend things can only get better 👍🏻

Sea_ profile image
Sea_

Brilliant update hope all your changes work for you and make life easier. Yes the better weather is coming and will make us all feel better

I just got an acer compact yesterday and I hope it’ll help me

Good luck and stay strong 😀xx

Crisfromshipdham profile image
Crisfromshipdham

Good to hear from you again Don. Have you got some grab-rails upstairs? They help me enormously. Roll on the warmer weather Xxx

Veteran250 profile image
Veteran250 in reply to Crisfromshipdham

Hi Cris, yes I have grab rails in my top landing, bedroom, and shower room.😀

Guardsman68 profile image
Guardsman68

Hello Don, firstly I hope you are the best you can be it’s unbelievably difficult suffering with ataxia no matter what type.

I’m so pleased your local authorities have recognised your needs and provided you with the essentials to get by every day.

My local council and city council have done the same for me although I had to pay a contribution towards some of the work which wasn’t an issue as it was only a small amount. The wet room and raised toilet is a revelation. Stairs are my nemesis my wife assists me going up and I come down on my bum I have slid down them quite a few times taking skin of my face I’m to big for a stair lift 6’2 15stone 🤨 I have started process with local enablement team for a lift like yours so fingers crossed

NO SURRENDER

orange33 profile image
orange33

hi Don it’s good to hear that you are getting the help that you need.

Yes, I have grab rails wherever I can have them. I really wish it was more easy for me to get outside on my buggy as it has to be stored in the garage.

I don’t often post here because of my infernal, shaking due to neuropathy, however, I am using dictation on this occasion.

I hope we will all be able to get outside soon in that sun and get some real good vitamins. I wish you the very best health and it was lovely to hear from you again.

Veteran250 profile image
Veteran250 in reply to orange33

Hello my lovely, my hands shake too, I use one finger for typing on my iPad, it gets me bye….. it was nice to get your message….thank you😀

Eveie78 profile image
Eveie78

Hi, I'm glad that your council seem to be doing things to make your life easier. My daughter replies to my messages because it takes me ages to write them. I can't wait for some outside fun. in the sun. All the best x

Veteran250 profile image
Veteran250 in reply to Eveie78

Wishing you the best Eveie, thank goodness for your daughter…..take care and stay safe.

Don. ❤️

auntiesally profile image
auntiesally

Hi Don, I dont visit this site much, but was so pleased to read your post. Lovely to hear from you. x

Veteran250 profile image
Veteran250 in reply to auntiesally

Hello my lovely, it’s nice to get your message, I don’t visit HU very often either….. I was very surprised to learn that I have had Ataxia all of my life, my hands have shaken ever since I was a small boy, but the Neurologist didn’t elaborate on which type of Ataxia I had….. but life goes on, and I’ve turned 80 now.

You take care and stay safe. ❤️

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