Your thoughts

Does Ataxia get to you sometimes? I know that it does me. Healthy folks just take their health for granted and I get jealous.

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Yes…I do get particularly ‘down’ when symptoms worsen.

Last week I had a distressing fall. I tripped and fell forwards onto a tiled floor, stopping short of knocking myself out.

Previously…I’ve fallen backwards and knocked myself out…but recovery was fairly uneventful. Hitting my forehead has been completely different …I have a renewed sense of vulnerability.

:slightly_smiling_face: Hopefully…my confidence will return to ‘new normal’ asap.

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Very sorry to hear that. I’ve fallen quite a few times also. It’s not fun. Whenever I make a move I have to concentrate or I lose my balance.

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I hope your symptoms also get better but remember having “confidence” is good but only to certain degree. You still need to be careful in what you do to avoid falling

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Definitely yes. Especially on sunny days when friends want to just be out for fun and exercise. I just can’t do that. Falling often and moving about so slowly these days.

:slightly_smiling_face: I have reasonable range of movement but…very poor Vestibular abilities. This is leading to me being more sedentary because overall it makes life much easier. But…consequently I’m stiffening more, becoming more unsteady…and realise this is a major cause of falls too.

I’ve found once I am down on the floor, it’s becoming increasingly difficult to get back up. In my case this is compounded because I have Osteoarthritis in my knees.
:slightly_smiling_face:I’m seeing a NeuroPhysio…once I’ve recovered from the current fall, we’ll practice ways of getting up from the floor safely.

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This is why it’s recommended to keep as active as you can by exercising to maintain the muscles and the joints the best you can. I myself belong to a gym where I spend a lot of time on the recumbent bike so as to keep my legs in good shape. Plus I do some weight training for the balance. I recommend that you consider the same. Incidentally there are folks there in wheelchairs and walkers.

Yes, getting up is a problem for me also!!:face_with_symbols_over_mouth:

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:slightly_smiling_face:Getting back to your original post ‘your thoughts’

:thinking: Although I’ve coped with my current issues for couple of decades…I can still visualise myself moving around as normal…instinctively/automatically. It isn’t easy knowing I need to move around slowly and purposefully just to stay upright and safe.
Exercise will help maintain strong muscles and core…and this stands a person in good stead in the long run…but no amount of exercise will restore a compromised balance disorder. And that is my major problem.
We’re told that repetition will create new pathways…and we know it’s still possible to find a way around certain obstacles, find new ways of doing things but…it’s inevitable old memories will surface and it’s these that are hard to deal with.

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I hear what you’re saying but it sounds like you’re thinking about giving up. Things aren’t going away but it’s important to keep trying. I know that it’s not the answer but that’s the best advice I can give you. Like NIKE used to advertise JUST DO IT!

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:joy:No…I’m not giving up. I don’t know how you interpreted that.
I was just ruminating…

Good to hear. I know that you’re a strong person.:hugs: Sorry about the confusion.

Yes certainly does … especially when saying goodbyes to visiting family. Normally I’m in a routine but when the adrenalin rushes in, I’m very frustrated. X

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Yes. I know what you mean. I get jealous watching people walk normal. Wishing I was my old self.

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It seems like it gets worse with each fall. I’m now in a wheelchair most of the time because my balance is so bad. I also have tremors, which I’m thinking is Parkinson’s. I think I have a hybrid. I have someone come in every day to help.

So sorry to hear that. I know that this is something you have heard before but try to keep your chin up!

:thinking: It isn’t unusual to experience Tremors with a diagnosis of ataxia.
Have you been diagnosed with a specific type of ataxia.

You’re absolutely right! I’ve been avoiding research since two of the four neurologists I saw told me I had MSA! One even called to tell me I was going to die! Talk about PTSD! They simply read the MRI report, which made reference to a hot cross bun sign. I’ve since found out that the hot cross bun signs are present in other diseases as well! I was diagnosed with a spontaneous sort of Ataxia. There’s no reason for it It’s late onset.

What a terrible thing for a MD to say!

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I’m so sorry…
Some Neurologists, for whatever reason, can be very callous…they don’t have a good ‘bedside manner’. There’s no excuse for some remarks.

It can be incredibly difficult to get an exact diagnosis, I’m still waiting myself…and misdiagnoses are very stressful, I’ve had this too.

I’m in the UK, due to our health system (NHS)…I’ve been seen by numerous Neurologists, and 2 Specialist Ataxia Centres, since 2011. At the moment, the most comprehensive testing available here is Whole Genome Sequencing…I’m hoping to hear results this year.

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Big, BIG +1 in regard to this comment Beryl.

I’ve often said some neuro’s seem to have the bedside manner of a common house brick. I’ve been told ‘They need to have an emotional disconnection from their patients…’ which I do comprehend, but to have a conversation in the 3rd person (me) to my wife, whilst I’m sitting in the same room. OR speaking down to me like I don’t understand Grrrrr

Going to see these specialists can be stressful enough, but to then get their clinical attitude…
…it lights my fuse every time.

Merl from the Modsupport Team

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