Rate of deterioration

General
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I know the rate of physical deterioration varies wildly for various folk but I am trying to determine if my rate of deterioration is very fast (my guess) or ‘within the range’. Within the last 7 months:

  • I have gone from being to be able to walk by myself (albeit slowly) to now walking less than 20 meters, even with the use of a rollator
  • My speech is now so slurred that I am reluctant to speak on the phone
  • I am exhausted 24/7 such that I have to sit often; standing is very tiring; my ‘naps’ are two hours long
  • I choke about 3 times a day on my own saliva
    I would like to hear how other folk’s rates of deterioration
2 Likes
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:slightly_smiling_face: Progression, rate of deterioration, can vary enormously from person to person, to the point where even people in the same family and diagnosed with the same type can be challenged differently. Apart from the genetic types, some people have ataxia which progresses slowly over a number of years, gathering symptoms along the way. There are others who experience Late Onset Ataxia, and find symptoms can quickly accumulate and progress.

My own journey has taken a number of years, I started experiencing Deja Vu and noticing balance problems in my mid 40s, and after having a seizure in my sleep, was diagnosed with Epilepsy. Several years later eye problems set in, I had Iritis and went on to have Nystagmus and double vision. At the same time balance was becoming worse.
In due course I was referred to a Neurologist Opthamologist who was very helpful, initially Prisms were tried to alleviate double vision, then a Botox injection into the eye muscle, and finally Strabismus Surgery, this had the greatest positive effect :slightly_smiling_face: I had no further need for Prisms.

Balance continued to deteriorate, I started having falls and because of my young age, my GP was at a loss to explain why. I was sent for a Tilt Table Test, the immediate after effect left me feeling extremely drunk :woozy_face: my legs wouldn’t support me and I found it hysterically funny. This resulted in me being sent for an MRI, Cerebellar Atrophy was visible, the diagnosis of Epilepsy dismissed, and replaced by Idiopathic Cerebellar Ataxia. That was in 2011, I’d fought for almost 15yrs to get a proper diagnosis.

Now, I need to use either a walking stick or rollator for safety outside my home. My eye problems have reoccured (possibly Cataracts) and I’m waiting to see a Specialist. Fatigue can be overwhelming, I often fall asleep at the drop of a hat. Speech can be variable, either good or embarrassingly slurry, I forget words or use inappropriate ones :woman_shrugging: I frequently choke, not just on food and drink, more often than not on my own saliva. My latest worrisome symptoms are pain and stiffness, for years I’d read about other people referring to these and thought I’d escaped :roll_eyes:

If necessary there are medications available to try…
Google ‘ataxia.org Medications for Ataxia Symptoms’ to see a link.

:slightly_smiling_face:

3 Likes
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Hi Jacques,

I checked my journal (good thing to have one) and my rate of deterioration has gotten very bad within the last 3 years and I had balance issues going back to 1999. It has gotten very bad where I am not independent any more. Do not drive, no work now for 4 years, speech is slurred like you, also very tired, cough all day, use only my rollator to get around, and always stuck in this house. You could say due to the pandemic it was easy. At my age, I am lucky I had a fulfilling life when I was able to do everything. Just make sure you have a support group and stay connected with your friends. Wish you a lot of luck!

1 Like
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I was diagnosed with SCA6 in 2016. I think I have been able to keep symptoms somewhat at bay thanks to regular exercise and light weights. I have noticed that I am more fatigued lately. I am fortunate in that I am still able to keep relatively active, which has helped with progression

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My deterioration is spasmodic. It comes all of a sudden and unsuspected. My hearing went first (1975), then my face (1975), then my eyes (1988), then my balance (1995), then my walk (2001), then my voice (2010), then my swallowing (2018), then coughing (2018), then (hush hush) double incontinence (2019). I can take manage with the rest, but that last one is so horrible.

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Dear Highways,
I’ve had ataxia 20+ years. I was diagnosed with Sporadic Cerebellar Ataxia initially and had genetic testing a couple of times to try to find out why I had ataxia. Then in 2017, I had genetic exome testing, which showed I had ataxia due to Niemann Pick C disease
(I had a skin biopsy and blood test to fully diagnose my NPC). Anyway, my ataxia has progressed rather slowly over the years. First, I was able to walk unaided. Then I fell and started using a cane. Eventually, I switched to a quad cane, as I needed more stability. I only used my cane when I went out of my house, as I was able to walk (extremely carefully) in my house unaided. A couple years ago I had a total knee replacement and now use a rollator all the time. I also have other small changes which I notice. I too sit more frequently and have fatigue, no matter how much sleep I get. I have a hard time walking very long. My best to you ;o)

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I am 44 now. Onset at 27, diagnosed at 28. I retired and went on disability at 33.

I have a rollator, which I sometimes on bad days. If I have a cold or miss too much sleep I cant really talk or move around. But I can still jog on good days. I get 8-10,000 steps most days, but I take adderall in the mornings and push myself quite a bit to do this. I injure myself all the time. I am constantly tired and sore, but grateful for anything I can do.

For me, I can get back quite a lot of function if I move things around in my life, such as when I retired. Or when I started taking Benadryl at night to guarantee better sleep.