Finally! It’s the day of our first meeting. Attendance was what we hoped for, about 9 people. The hostess had a table in her lovely home that we all fit around. As the inaugural meeting, certain things had to be done. We introduced ourselves to each other and shared our PD history. Immediately, members found commonalities – similar medicine regimen, similar side effects
Some facts about the group:
- We were diagnosed at ages 45 – 77 years.
- Diagnoses were received between 14 years and 2 weeks ago.
- One of the members was diagnosed with Atypical Parkinson’s so her challenges are somewhat different from the others.
Many in the group know each other from a shared exercise class. The others were warmly welcomed and will be great assets. Casual discussion including comparing what medicines are being taken, side effects and issues related to timing of doses. Three neurologists are used by the group.
There seems to be a general consensus that we’d like to share our contact information with the group so that members can reach out to others, especially when winter weather makes it hard to get out. This is a positive way to fight the loneliness and isolation that we sometimes feel on bad days. Members, if you want to participate, please send an email which tells the best way for a group member to reach you, the best time to be contacted and a “No Later Than” time.
There was discussion about tracking down clinical trials in Parkinson’s research. A member provided the web address, http://www.pdf.org/en/clinical_trials, as a source and there are also some found through the Michael J. Fox Foundation . The website, VIARTIS, was also recommended for quality information.
To decide which topics we should discuss first, we each prioritized a list of our own. The agenda in future meetings will be dictated by members’ choices. Looks like first up will be handling the depression that can overwhelm and the emotional side of dealing with Parkinson’s.