Open Discussion
Patrick started the discussion by espousing the great attributes of his ColPak large ice pack. And the many virtues of icing itself. Ice packs are the duct tape (gray tape) of the injury world.
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The group also discussed Covid-19 and its impact on PD symptoms. While not all PWP experienced a worsening of the PD symptoms and more severe complications, many did. Some were extremely sick for weeks and developed permanent damage to their organs.
A prior discussion touched on the two main PD research paths: Stem cell and Alpha-synuclein (the protein that accumulates abnormally in the brain). A member of the group investigated PD research and found that the FDA recently approved “Focused Ultrasound” for treatment of essential tremors and PD. The Focused Ultrasound Foundation (FUSF) was created to accelerate the development and adoption of focused ultrasound, thereby improving the lives of millions of people with serious medical disorders. The story of a swimmer who had to give up swimming because of the severity of his symptoms, went through the procedure and was able to return to swimming was shared by the group member.
DBS or deep brain stimulation was brought up and the person who presented her experience in a prior session answered specific questions for individuals.
A question was asked about the benefit (or perhaps detriment) of taking certain vitamins, B12 and D3 in particular.
People who have a spouse as a care-partner may discover that, at some point, the care-partner requires more assistance and support than the PWP. What happens now?
The discussion dealt with various sources of assistance that could be pursued under those circumstances. Suggestions focused on both the emotional and the financial needs of the couple. Local support groups, national foundations, Medicare, and health insurance companies were suggested, as were social workers, home health aides, and your PD doctor. Everyone should have a plan B.
