Barbara
Forum Replies Created
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Diagnosed in 2014, my neurologist did not rush to C/L, instead enrolled me in research testing … “what length of time a newly diagnosed patient can go before requiring medication”. I made it to 18 months before both of us agreed it was time. To answer your question, YES C/L does relieve tremor. As for the other 100 or so symptoms, they are so individualized please seek the advice of your doctor or other PD friends. I hope you have found a support group, as they are the best, they live with Parkinson’s. Good luck.
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Thought one person could not really do much. I was wrong. Today I went to my library to ask about obtaining Parkinson’s Diva, a book I read about in the Univ of Rochester Clinical Research Center video, specifically made for 2022 Parkinson’s Awareness Month/Day. I was referred to the Adult Services section of the library where a knowledgeable Librarian listened to my explanation of Parkinson’s Awareness Month, agreeing that if I had given earlier notice (my fault) the library would have offered an informative display with appropriate PR. He not only ordered “Parkinson’s Diva, a woman’s perspective on PD”, but also said he would speak with the librarian assigned to the Parkinson’s section of my request to update the library’s PD offerings, stating, “We appreciate our members suggestions, that’s how we improve and grow.” So, one person can indeed do something! I made a calendar note to remember next year.
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No. I have heard DBS is risky for those over 80.
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Yes, but not from diagnosis. Now that I am 8 years in, through much reading and observations I have been experiencing what I call “good happenings “.
Barbra -
Yes, a few, in-person and thru technology. My first neurologist (at a teaching hospital in 2014) gave me my diagnosis and asked if I would like to participate in research. Yes! Of course. I willingly participated in any research that was “looking for a cure”. That was a 3-year trial to ascertain how long a new patient could go without taking CD/LD (Sinemet). It was 1.5 years before I took medication.. I followed each step, learning along the way. Research is my defense and motivation. What is or may be learned may not be accessible to me, but there are more diagnoses of Parkinson’s every day; someone someday will benefit. An on-going trial by the Univ of Rochester is simply tracking daily symptom via Smartphone, done at home, on-line. Every three months you join thru an app and for ten days complete three simple routines of walking, finger dexterity, and tremor increase (or not). Takes about 10 min of your day at a time of your choosing. I have also done 1 day group participation for balance, sensory reactions, trials I hear about thru my support groups, doctor, PD friends. Research is important. If you can participate, please do. Barbara
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Yes! I was diagnosed in 2014, age 75. Prior to PD I was able to multitask no matter the task. In the past few years, my patience has lessened while stress has increased. I had been thinking it is my age however, I’ve had discussions with my children and they agree that my stress level explodes in proportion to the number of people involved, the amount of noise, and my own expectation of what is required of me. I am working on my daily schedule, keeping it to 2 activities per day (exercise plus laundry or exercise plus book club with perhaps a short nap if required), especially with holidays looming. Listing daily activities on my wall calendar helps me keep to parameters. Stress limits enjoyment, and I do not want to do that!
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Never thought about it. Will discuss with my support group tonight.
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When I hear that “quip”, I feel like Parkinson’s has been turned into a joke, something “cutesy “ to laugh about. It makes me uncomfortable. There are many things to laugh about in this world, just not Parkinson’s. FYI: I am a positive, active PD woman who greets each day with a smile, doing what I can for the greater good.
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Yes! (Because it.works.)