Hereditary Neuropathy On September 30, The Foundation for Peripheral Neuropathy (FPN) hosted Brett McCray, M.D., PhD, and Christy Smith, Sc.M., C.G.C., who presented insights into Hereditary Neuropathy and Genetic Testing. See the presentation here.
Hereditary Neuropathy Read More »
Pittsburgh Group adds Zoom September 15, 2021 – Tonight, the Peripheral Neuropathy Support Network (PNSN) helped the North Huntington (Pittsburgh) group hold its first Zoom videoconference meeting, but the circumstances were quite unusual. The North Huntington group is about 10 years old, and had always met in person. Planners, lead by Bill Wilshire, had planned
Pittsburgh meeting Sept 15 Read More »
What topics would you like to see addressed by experts or considered for discussion in future meetings? We’ve listed some sample topics below, but you may have better ideas. Here are several: • latest advancements in pain control• shoe shopping• neurologist/podiatrist update on technologies, medications• acupuncturist/ reflexologist/hypnotist• nutrition, supplements, and eating well• automotive hand controls•
Summary: PN is uncomfortable. Virtually every PN patient has discomfort or pain. This reflects the standard pattern: discomfort, possibly substantial, while PN silently destroys our ability to stand. A substantial minority of patients report major problems with pain. To many of them pain is the primary problem, not the degradation that destroys balance. Many have
Loss of Full Life: Pain (A work in progress) Read More »
I want to live to be 100 or more. How can I do that? Living to 100 is hard. Peripheral Neuropathy (PN) is chasing me down from behind. Could looking around help? I think of Eve and Billy. Eve was struck by MS in her 30s, with several small children. When she died, 60 years
Reaching for 100 – Eve and Billy Read More »
Overcoming PN’s Unique Support Group Barrier By Mike Foxworth Peripheral Neuropathy (PN) is a massive problem for our country. It rivals Alzheimer’s disease in complexity and cost. Yet all attempts to confront it on the scale it merits have been met with meager responses. The last few years have revealed some exciting research developments. Those
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These are the documents we are using for our preliminary meeting with the folks who are helping us make plans for 2021 & 2022 Our Scope of Work Document link to comment Link to edit Context Document: Overcoming PN’s Unique Support Group Barrier Link to Comment Link to Edit Link to Blog Post Presentation: Neuropathy
PMDoS 2021 – Project Management Day of Service Read More »
Carolyn Hax is an advice columnist for the Washington Post. On June 22, she posted a question and response about use of a wheelchair from a reader named “Invisible Disability”. (Note: I’ve put the link to the online copy at the end of this post. You may need to be a subscriber to view it.)
Don’t Let Your Pride Hold You Back Read More »
Topic Interest Survey At our July 2019 picnice, we asked party goers to pause long enough to fill out a survey about their topic and speaker preferences. More topics were added during the discussion. We apologize for omissions and overlaps in the topic list. Topics marked with * were added during the discussion We used
What’s Relevant to Members Read More »
Mike Foxworth’s second preliminary take on our survey: A sample of 19 is still small, but interesting trends seem apparent. There is plenty of pain apparent at our our PN Support group meetings AND in these responses. But these results still suggest that PN related MUSCLE WEAKNESS, with its associated movement limitations and physical danger,
Results of Our Recent Survey Read More »
