As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w narcolepsy/cataplexy. I’ve the next few years, I lost my back ability. Then I developed Myoclonic seizures. My medication protocol was changed. (sleep disorder) Then my gait changed with periods of aphasia. My emotional affect change along w constipation and slow hand movement. I saw 9 neurologist during all the above issues. Lastly 28 moths ago I went into hospital for surgery. (2).
Before going in the hospital I could mob normally and talk. They gave me propothol. When I got out of surgery I couldn’t move or talk. I was diagnosed with ataxia and MSA. I was told no treatment. I researched my options. My sleep medication protocol helps me a lot. I use 5% epinephrine patch (1) and place it on my worst area. I also use scopolamine patch only on my bad day. I also or an infrared photon map magnetic and now sleep and sit on it. It penetrates my body by 8 inch’s. In 4 weeks I now can talk move around (improved 60%). I changed my diet and use 3 supplements. I use a bidet for my bowels w ACV. My bowels and urination has improved 80%. I know as a retire internist, that this disease will still kill me.
However my qualify of life has greatly improved. I can exercise and walk. No hard core pain meds yet for me. My affect is 90% better. My thinking has improved by 60%. My eyes can track a little bit better. I have not listed all my changes…I just celebrate what functions I have.
When Were You Diagnosed? Which Type (If Known)?
18 months ago
How Has Ataxia Impacted Your Life?
It has been difficult, however I celebrate the functions I have. It is isolating in nature.
What is One Thing You’d Like the People to Know About Ataxia?
Educate the patients better (diagnosed and not diagnosed) Moreover educate doctors and that means primary, neurologist, sleep specialist psychiatric.
Share Your Advice – How Can Others Support Someone with Ataxia?
Until we educate effectively patients and medical professionals it will be hard for ataxia patients.
Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.
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