In March, Chuck and Donna Barnhart presented a national tour of their experiences hiking the U.S. National Park System with Neuropathy. Their biographical sketches are here.
Here is the video recording of the meeting.
Here are chat notes:
13:42:15 From Peripheral Neuropathy Support Network to Everyone:
PNSNetwork.org
Facebook – On Your Feet
13:43:03 From Peripheral Neuropathy Support Network to Everyone:
Chuck and Donna Barnhart are today’s presenters. They are talking about exploring the national park system. Traveling with PN.
Mountain Smith trekking sticks
Today, Greg Maassen launched his fund-raising cross-country tour on his electrical bicycle. Details at ebiketour.org
Try aqua aerobics for exercise. in deep water . wear a belt to keep you buoyant . very easy on joints. most gyms with pools offer this program
14:52:01 From Diva Parekh to Everyone:
Mini backpacks are great when you don’t have pockets! I’ve replaced all purses with those
14:57:48 From Judson Vaughn to Everyone:
I have a Terratrike recumbent tricycle with a sling seat.
Padded bike riding pants
Types of shoes?
Skecher’s. Merrells. Hoka. Another good brand.
For everyday use.
And Socks, the thicker the better.
Shoes, always buy one size bigger than you used to wear.
Get shoes professionally fitted.
Diva: I went to Potomac Running to get my shoes professionally fitted.
Chuck: Does glucose control help Neuropathy?
15:20:10 From Judson Vaughn to Everyone:
John Deal, please join our group at pnsNetwork.org and click the JOIN button
Camomile oil
Roman Chamomile. It is a bit pricey.
There might be something out there dealing with glucose to maybe improve usage of it in the body. It would be a supplement I’d have to research.
15:30:29 From Chuck and Donna Barnhart to Judson Vaughn(Direct Message):
N acetyl carnitine and N acetyl cysteine are on my list to try in future.
doTerra brand essential oil
15:31:03 From Mike Foxworth to Everyone:
I have read multiple times that there is no research that shows convincing positive results from supplements unless there is a test that shows a chemical is low. The absence of evidence does not prove the absence of effect. The results for Alpha Lipoic acid are not strong enough to convince me. But I have little pain and stakes seem low for me. We live in an era of very limited research.
15:31:08 From Chuck and Donna Barnhart to Judson Vaughn(Direct Message):
CORRECTION ACETYL L CARNITINE.
15:32:37 From Chuck and Donna Barnhart to Everyone:
Yes to your response on supplements. But, I have proved to myself that ALA really helps as does the benfotiamine.
15:32:43 From Judson Vaughn to Chuck and Donna Barnhart(Direct Message):
MetaNX is a food supplement that took my pain from 8-9 down to 0-2. Doctor prescribed. I’ve been taking it for four years.
15:42:03 From Diva Parekh to Everyone:
It doesn’t help that because I’m in my 20s and look healthy and have a disability, those two things don’t compute for people so they get all angry and think I’m faking
15:43:50 From Chuck and Donna Barnhart to Everyone:
LifeExtension Benfotiamine fat soluble Vitamin B1
15:44:57 From Chuck and Donna Barnhart to Everyone:
That’s what Benfotiamine is – Fat soluble Vitamin B1 250 mg capsule
15:49:07 From Mike Foxworth to Everyone:
PT person told me to not use my hiking pole because it would not properly support me as well as a regular cane with a handle that I could rest my weight on. So I’m going to try using a regular cane for a while. But, like Diva says, the hiking pole lets me feel like I have another set of sensations that makes me feel more willing to keep moving. I find myself not as confident with a cane.
15:49:45 From Diva Parekh to Everyone:
About the sugar thing, I was told to eliminate refined sugar — I still eat fruit/natural sugar but eliminating that white sugar has helped a lot, and they have a bunch of dark chocolate options with natural sugars
15:49:59 From Diva Parekh to Everyone:
My favorite is https://hukitchen.com they have them at target
15:51:17 From Chuck and Donna Barnhart to Everyone:
See book ‘Sugar Crush’ by Dr. Richard Jacoby. Very enlightening
15:53:15 From Judson Vaughn to Pat Gualtieri(Direct Message):
15:54:09 From Judson Vaughn to Pat Gualtieri(Direct Message):
April 21 – Bethesda Chevy Chase. Next meeting
15:55:26 From Mike Foxworth to Everyone:
Generally speaking, Humans did not evolve with ready access to sweet tasting foods. Same for fats and salt. As a result we crave all three. That gives food companies a lease to hook into our noses to lead us to their products. One of the worse: things with high fructose core sugar