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.