2017-Oct-07
21 patients and partners/caregivers met with Johns Hopkins Researcher Simone Thomas. Two aspects that made this special:
1. Her background equipped her with a rare ability to address our questions. Before joining Hopkins as coordinator of the PN Research Registry, Simone spent more than 20 years helping US astronauts (super-healthy and smart but not necessarily introspective about their health) understand complex aspects of human biology. Their “understanding” was vital for NASA’s scientific research goals. During her <Presentation PDF>, Simone patiently accepted and answered a wide variety of questions, honoring both question and questioner, threading together accurate responses using simple language. A rare gift honed on astronauts’ hard heads. We hope to have her back.
2. She works in the middle of the research world. Her answers reflected that position. Cure’s elusive, puzzles rampant, research underfunded (But happening!). Big take-away:while we all wander in the fog, place a lot of your bets on exercise.
Simone runs the Hopkins portion of the PN Research Registry (PNRR).
- It’s hard to believe, but there has been no national set of “longitudinal data” (data that follows a set of people over a long period of time) on patients that have ALL types of Peripheral Neuropathy. Such data sets do exist for certain sub-types of neuropathy, but not for the broader PN population. The Foundation for Peripheral Neuropathy is the chief funding source for this one, which does have that broad focus. Hopkins is the leader of a group of research institutions that are participating..
- What’s a Registry? A registry is a set of people. The people who participate have been evaluated (medical history, test results, periodic data given, etc.) and agreed to keep giving additional data over a long period of time. Since this is a PN registry, all the participants are relevant to PN (like, they have it!)
- So, How do I participate? This web page on the FPN site has details. The FPN “Patient Conference” in March 2018 resulted in more volunteers and there are tentative plans to hold another Patient Conference in 2019
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Personal Note: In her presentation Simone repeatedly emphasized exercise. As noted elsewhere on this site, there are no treatments for nerve death (numbness). Treatments for pain have results that are spotty and poorly understood, Perception of “pain” always involves higher brain processes, and the brain is not well understood (yet). For some, pain treatments,even adjusting for side effects, are worth it. In general, however, It is difficult to distinguish “relief” from “placebo”. This leaves exercise as the only relatively well-supported mechanism for treating general peripheral neuropathy (and even that evidence is not ironclad). Simone urged me to
- Increase my vigorous exercise schedule from 4 days to 6 days per week. Vigorous exercise improves blood flow and there is evidence that poor blood flow to legs may be a factor in nerve death.
- Vigorous, but not extreme. Cruising @ heart rate=120 for 20 minutes is better than peaking at 145 and pooping out at 10 minutes.
- Daily balance and strength exercise is vital to train the connections between the brain and our deteriorating nerves. This is the appeal of Tai Chi.
So we need both vigorous and balance/strength exercise. Almost every day. One is not a substitute for the other.