Cerebellar ataxia

Posted by mvanstem @mvanstem, 1 day ago

So I started in this journey back in 2017. I have terrible balance, walk like a drunk, have nystagmus and double vision, blurred vision, clumsy, choke on saliva. I have had numerous falls but pride myself on easily getting back up. I use a rollator as canes are inadequate now.

I had a totally different experience last week. I didn’t really fall…it was more like I melted into a heap. I could not get up. It wasn’t that I lost my strength, it’s just that I no longer had control of my arms nor my legs. They were like rubber. No ability to grasp nor propel myself. My husband tried to get me up but all I ended up with were fingerprint bruises on my body. A neighbor successfully got me into a chair. Since I was still a ‘wet noodle ’ my husband called an ambulance for me. He was worried. I told him they would do nothing for me. Hours later we came back home. I was still in this sad state. I couldn’t drag myself up the 3 steps to get in. I tried and tried and after half an hour and having absolutely destroyed the skin on my legs and knees, I was inside. (Our regular home does not have any steps. We winter in a warmer climate in a modular home with steps). Our solution to getting me into the bedroom involved my husband literally dragging me by my ankles down the hall. This lasted at least 6 hours.

My question for those who have experienced this ‘noodle’ sensation. How could I do better next time? How could I improve the situation? (I am 5 states away from my neurologist until May. I am back to my usual wobbliness now)

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@mvanstem
I only had one episode of ataxia.
I was walking up to a friend's front door and did fine until I got to the steps. I tried and tried to lift my leg up onto the step but they wouldn't move so I decided to go back to my car. I tried to turn around starting with my right leg but I couldn't move it. I tried my left leg and although I could move it, I could only go in a circle because I could only move my left leg and ended up in the street yelling for help get me in my car. I haven't been diagnosed as having ataxia since that episode, but I do fall a lot and have weakness in my legs, but I attribute the falling to 60 years of taking seizure medicine. I also have muscle coordination problems maybe caused by ataxia or likely by my seizure medication.
Do you know the cause of your ataxia? Mine is believed to be caused by seizure medications.
Take care,
Jake

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Please check for SS. Dr. Kumar and Dr. Marsh. Mayo Minnesota

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@jakedduck1

@mvanstem
I only had one episode of ataxia.
I was walking up to a friend's front door and did fine until I got to the steps. I tried and tried to lift my leg up onto the step but they wouldn't move so I decided to go back to my car. I tried to turn around starting with my right leg but I couldn't move it. I tried my left leg and although I could move it, I could only go in a circle because I could only move my left leg and ended up in the street yelling for help get me in my car. I haven't been diagnosed as having ataxia since that episode, but I do fall a lot and have weakness in my legs, but I attribute the falling to 60 years of taking seizure medicine. I also have muscle coordination problems maybe caused by ataxia or likely by my seizure medication.
Do you know the cause of your ataxia? Mine is believed to be caused by seizure medications.
Take care,
Jake

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Mine is idiopathic

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