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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Yesā¦I do get particularly ādownā 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.
Previouslyā¦Iāve fallen backwards and knocked myself outā¦but recovery was fairly uneventful. Hitting my forehead has been completely different ā¦I have a renewed sense of vulnerability.
Hopefullyā¦my confidence will return to ānew normalā asap.
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Very sorry to hear that. Iāve fallen quite a few times also. Itās 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 āconfidenceā 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 canāt do that. Falling often and moving about so slowly these days.
I have reasonable range of movement butā¦very poor Vestibular abilities. This is leading to me being more sedentary because overall it makes life much easier. Butā¦consequently Iām stiffening more, becoming more unsteadyā¦and realise this is a major cause of falls too.
Iāve found once I am down on the floor, itās becoming increasingly difficult to get back up. In my case this is compounded because I have Osteoarthritis in my knees.
Iām seeing a NeuroPhysioā¦once Iāve recovered from the current fall, weāll practice ways of getting up from the floor safely.
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This is why itās 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!!
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Getting back to your original post āyour thoughtsā
Although Iāve coped with my current issues for couple of decadesā¦I can still visualise myself moving around as normalā¦instinctively/automatically. It isnāt easy knowing I need to move around slowly and purposefully just to stay upright and safe.
Exercise will help maintain strong muscles and coreā¦and this stands a person in good stead in the long runā¦but no amount of exercise will restore a compromised balance disorder. And that is my major problem.
Weāre told that repetition will create new pathwaysā¦and we know itās still possible to find a way around certain obstacles, find new ways of doing things butā¦itās inevitable old memories will surface and itās these that are hard to deal with.
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I hear what youāre saying but it sounds like youāre thinking about giving up. Things arenāt going away but itās important to keep trying. I know that itās not the answer but thatās the best advice I can give you. Like NIKE used to advertise JUST DO IT!
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Noā¦Iām not giving up. I donāt know how you interpreted that.
I was just ruminatingā¦
Good to hear. I know that youāre a strong person.
Sorry about the confusion.
Yes certainly does ā¦ especially when saying goodbyes to visiting family. Normally Iām in a routine but when the adrenalin rushes in, Iām 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. Iām now in a wheelchair most of the time because my balance is so bad. I also have tremors, which Iām thinking is Parkinsonās. 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!
It isnāt unusual to experience Tremors with a diagnosis of ataxia.
Have you been diagnosed with a specific type of ataxia.
Youāre absolutely right! Iāve 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. Iāve 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. Thereās no reason for it Itās late onset.
What a terrible thing for a MD to say!
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Iām so sorryā¦
Some Neurologists, for whatever reason, can be very callousā¦they donāt have a good ābedside mannerā. Thereās no excuse for some remarks.
It can be incredibly difficult to get an exact diagnosis, Iām still waiting myselfā¦and misdiagnoses are very stressful, Iāve had this too.
Iām in the UK, due to our health system (NHS)ā¦Iāve been seen by numerous Neurologists, and 2 Specialist Ataxia Centres, since 2011. At the moment, the most comprehensive testing available here is Whole Genome Sequencingā¦Iām hoping to hear results this year.
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Big, BIG +1 in regard to this comment Beryl.
Iāve often said some neuroās seem to have the bedside manner of a common house brick. Iāve been told āThey need to have an emotional disconnection from their patientsā¦ā which I do comprehend, but to have a conversation in the 3rd person (me) to my wife, whilst Iām sitting in the same room. OR speaking down to me like I donāt understand Grrrrr
Going to see these specialists can be stressful enough, but to then get their clinical attitudeā¦
ā¦it lights my fuse every time.
Merl from the Modsupport Team
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