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Beau's Mom

Exaggerated Startle Reflex

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Dr. Okun,

I am 7.5 years post-diagnosis. I've had bad reactions to all agonists so have been on carb/levo followed by the Duopa pump since 11/2015 with very good symptom control and minimal dyskinesia.

For the past nine months I've noticed I am startled by movements that used to not bother me. For example, I have difficulty using my walker to go down a sidewalk ramp. I have to use the brakes to feel safe. I am sensitive to riding in a car and react with tightened muscles to every possible traffic danger. The past month I've been awakened from sleep by my body jerking as if I have just experienced an electrical shock, as much as three to four times a night. It also happens when I nap during the day.

Could this be disease connected or Duopa related?  It happens while the Duopa is running and when it's completely turned off for the night.

Lastly, I had a hospitalization with an infection at the g-j tube site three weeks ago. While I was there my oxygen sats ran consistently in the upper 80s at night and low 90s during the day. I was kept on oxygen 24/7 the first two days, and only at night after that. Could low oxygen cause the nighttime jerking?

As always, I am grateful for any insight you can offer.

Beau's Mom (Dianne).

        

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This is a tricky set of symptoms and it is unclear to me what is going on.  I would definitely discuss in person with your docs and try to get to the bottom of the issues.  It could be for example simple disease progression.  Or maybe it is myoclonic jerking and this was made worse by less oxygen.  Hope you sort this out.

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