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About JeffW

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  1. JeffW

    Passing out

    HI, Adams234 and jb49, how was it determined that the agonist was the cause of sudden sleep attacks? Was it necessary to wear a heart or brain monitor? Trial and error? What changes were made to eliminate the attacks? Thank you for sharing this information.
  2. My daughter has advanced PD and is taking Sinemet, Amantadine, Azilect and RequipXL. She has been on this medicine regimen for a few years. She recently started to lose consciousness without any warnings. This now happens every few days and has sometimes occurred several times in a day. She has low blood pressure that is controlled by midodrine and fluoronef. However, her bp has been stable before, (and amazingly) during, and after each episode. She completed a halter test (no results yet) and will wear a brain monitor for a few days. In addition, she has DBS implants. Two forum participants referred to similar symptoms as "sudden sleep attacks". They each thought the attacks were the result of an agonist. One member mentioned Sinemet and the other mentioned Requip. Is there a broader history of these agonists causing these issues? Thank you.
  3. Our 39 year old daughter was diagnosed with Parkinson’s Disease eight years ago. In that time, her symptoms have advanced aggressively and she is now categorized as having advanced PD. Her medications include Sinemet, Azilect, Amantadine and Requip XL. These require frequent modification of both dose and the time between. In addition, she had DBS surgery four years ago. In spite of all these treatments, every day is a major struggle characterized by an unpredictable onset and duration of symptoms. Due to freezing, significant fatigue and balance issues, she can’t go out of the house alone. She lives alone, but has aides assist her on a daily basis. Her mom and I also provide assistance. Treatment is provided by two competent and experienced movement disorder neurologists in Boston. However, her quality of life is poor; we suspect due to atypical response to medications and aggressive disease progression. Ideally, we want to extend her ability to reside in her own apartment, as much as is safe and practical. However, her decline is rapid. Her mom and I are at a loss of what to do next. Any guidance for treatment alternatives, both traditional and non- traditional, would be welcome. Thank you