Chat session from January 2024 PNSN meeting
This is a quick recap of the chat session during our January 2024 PNSN meeting. We’ve truncated names to protect privacy (except for group leaders who are public).
14:06:14 From Glenn Ribotsky to Everyone:
Sending virtual chicken soup Pat’s way.
14:13:56 From Glenn Ribotsky to Everyone:
I keep thinking “Hello Muddah, Hello Faddah” through all this. 🙂
14:16:07 From lmazawey to Everyone:
If you saw the Dick Van Dyke 98th birthday special a week or so ago, he set a great example of a happy person – he smiled the entire 2 hours! It was inspring!
14:18:23 From Glenn Ribotsky to Everyone:
Fortunately, PNSN non-profit status should keep the Disney lawsuits at bay. 😁
14:25:08 From Glenn Ribotsky to Everyone:
Some information on hereditary neuropathy with liability to pressure palsies: https://neuromuscular.wustl.edu/time/hmsn.html#pp
14:25:32 From MW to Everyone:
Pickle juice?
14:25:52 From MW to Everyone:
I drink apple cider vinegar, diluted of course
14:25:55 From Shana Phelps to Everyone:
Replying to “Pickle juice?”
pickle juice is high in electrolytes, and helps with hydration
14:27:14 From Glenn Ribotsky to Everyone:
Replying to “Pickle juice?”
In particular it has high magnesium content.
14:28:05 From Peripheral Neuropathy Support Network to Everyone:
14:29:24 From MW to Everyone:
THANK YOU SO MUCH!
14:31:23 From Glenn Ribotsky to Everyone:
Part of the reason for salt intake is that it helps to raise blood pressure, which can be harder to control in neuropathies with autonomic involvement (which includes many small-fiber syndromes).
14:32:11 From ED to Everyone:
Can Chuck recommend a brand of hiking poles that works for him?
14:34:44 From Peripheral Neuropathy Support Network to Everyone:
Shana’s wheelchair is bomb!
14:35:30 From Chuck to Everyone:
Dr. Hoke said I would need a cane someday too. For hiking, I do for sure. I also have to hold to stair hand rails otherwise I would lose balance and fall. My supplements keep the burning pain at night – sometimes mild sometimes not mild – at bay as I go to sleep.
14:36:01 From Chuck to Everyone:
Replying to “Can Chuck recommend …”
Yes, when I remember the names. At break I’ll go look.
14:36:39 From Shana Phelps to Everyone:
https://www.permobil.com/en-us/products/manual-wheelchairs/tilite-aero-z
14:38:24 From Shana Phelps to Everyone:
703 772 5030
Owner of Mobility City: Bennet Helfgott
14:39:05 From Chuck to Everyone:
Prob bc I’m getting older I just find it more difficult to deal with heavy highway traffic. Traveling out west is the best as little traffic on highways!! 😁
14:39:24 From GF to Everyone:
For once I’m home on a Saturday but still can’t unmute and I dont show video. Oh well. Happy New Year!
14:41:46 From Glenn Ribotsky to Everyone:
Mechanical injuries can certainly result in one-sided mononeuropathies, as can a number of the anti-nuclear antibody autoimmune conditions (lupus, Bechet’s, Polyarteritis, etc.)
14:46:37 From Chuck to Everyone:
My supplements include Alpha lipoic acid for control of burning pain and other benefits, also benfotiamine (fat soluble B1), and new one – magnesium ‘neuro-mag’ by LifeScience, I think. I’ll confirm at break. ALA is best go to for me.
14:49:33 From Shana Phelps to Everyone:
Gabapentin has mixed reviews and reactions. For some people it works, for some only on specific issues (neuropathic itchiness, pain, etc), for some it doesn’t work. Some people have side effects, some don’t. The most common side effects are typically drowsiness, forgetfulness, and weight gain from gabapentin, though there are a variety. Contraindications do exist. Make sure to talk to your provider before taking (or stopping) any medication, including gabapentin.
(Doses have a wide range, the maximum usually be around 3,600mg per day)
14:49:36 From MS to Everyone:
With Magnesium, there is a lot of research that our bodies do not absorb it well orally, better sublingually. Our bodies absorb it through the skin very well. Soaking your feet in Epsom salts water can be very helpful. Very salty water, a half cup of salt to a gallon of water.
14:53:40 From Glenn Ribotsky to Everyone:
Although, as regards magnesium absorption orally, magnesium citrates and chelates are considerably more absorbable than the cheaper magnesium oxide.
14:54:45 From Cj to Everyone:
Granddaughters over at 4 PM so, regrettably, I have to leave. Great meeting! My PN website (not selling anything) is: peripheralneuropathyresources.com
14:55:16 From lmazawey to Everyone:
Sorry I can only stay one hour- be well everyone!
15:00:42 From Chuck to Everyone:
That Neuro mag product is Magnesium threonate. I randomly found it and it helps relieve the weird feeling that I get in my feet at night without it.
15:02:40 From Peripheral Neuropathy Support Network to Everyone:
Brenda says this is a helpful podcast.
The Daily Respite. Clara Parkes.
Daily Respite: https://dailyrespite.substack.com/
Positive, interesting. Inspirational quotes. Humor.
Another is:
Maria Shriver. The Daily Paper.
15:05:15 From Peripheral Neuropathy Support Network to Everyone:
Brenda: read poetry. Kindness. Goodness. Light.
Don’t worry about the future. Focus on the here and now.
15:11:28 From Shana Phelps to Everyone:
Clara Parkes
15:13:46 From Pat Gualtieri to Peripheral Neuropathy Support Network(Direct Message):
Our website: https://pnsnetwork.org
15:18:47 From Peripheral Neuropathy Support Network to Shana Phelps(Direct Message):
GG: I’m experiencing an onslaught of “solutions” for PN.
15:19:17 From Peripheral Neuropathy Support Network to Shana Phelps(Direct Message):
GG: What about these low-voltage electronic impulses?
15:21:29 From Shana Phelps to Everyone:
WNA WEBSITE: https://pnhelp.org/resources/audio-and-video
15:21:38 From Peripheral Neuropathy Support Network to Waiting Room Participants:
Western Neuropathy Association.
pnhelp.org
15:24:14 From Shana Phelps to Everyone:
Emotions are healthy and can be motivators, but keep in mind where your emotions are directed (such as anger).
15:25:18 From Peripheral Neuropathy Support Network to Everyone:
Brenda’s new years res: The most important of any exercise program is the first 20 minutes.
15:26:58 From Glenn Ribotsky to Everyone:
I actually think there are entrepreneurs out there who are doing the “anger business” that Brenda mentioned; often it involves allowing people to take blunt objects to anger-inducing electronic equipment. Nothing like beating a printer.
15:28:06 From Peripheral Neuropathy Support Network to Everyone:
Shana: Setting boundaries is really necessary. Both for my own sanity but also to prioritize.
15:28:43 From Glenn Ribotsky to Everyone:
Here’s one of those “rage rooms”: https://www.rageroom.today
15:32:24 From Glenn Ribotsky to Everyone:
Never say “I lost my temper”. Say “I have FOUND my temper!”
15:38:32 From Shana Phelps to Everyone:
Talk Therapy (including CBT and DBT : CBT – Cognitive Behavior Therapy, DBT – Dialectical Behavior Therapy) is something I really do recommend to everyone at any age. Therapy is a great place to process emotions, ask for help with coping skills, and even work through interpersonal issues and boundaries.
15:41:20 From Shana Phelps to Everyone:
Great recommendations, Brenda!
15:41:26 From Peripheral Neuropathy Support Network to Everyone:
Brenda: I find garden gloves that have non-slip surfaces are very helpful. They make your hands much stronger. Also, A gripper tools is very helpful.
Many libraries offer free audiobooks
15:44:49 From Peripheral Neuropathy Support Network to Everyone:
Join our Facebook group: On Your Feet.
15:45:16 From LS to Everyone:
Look up the term bibliotherapy
15:46:10 From Rebecca Hotop to Everyone:
Speaking of library – GET THE LIBBY APP FROM THE LIBRARY AND YOU CAN GET AUDIOBOOKS TOO IF YOU LIKE TO LISTEN TO THEM. I LISTEN TO AUDIOBOOKS WHILE I DRIVE. Sorry about all caps.
15:46:10 From LS to Everyone:
Bibliotherapy: The therapeutic use of didactic and literary texts in treatment, diagnosis, prevention, and training
15:46:43 From Peripheral Neuropathy Support Network to Everyone:
Roar in ’24
15:46:50 From Shana Phelps to Everyone:
Motion is lotion
rest is rust
go slow, go low
sit n be fit – Bill Porter
15:47:22 From Glenn Ribotsky to Everyone:
And, of course, I have to list the Western Neuropathy Association virtual support groups in January for those interested: January 13 2nd Saturday Virtual Support Group
11:00am-1:00pm Pacific/1:00pm-3:00pm Central, Meeting ID: 856 7106 1474, Passcode: 114963
Host – Katherine Stenzel, klstenzel@hotmail.com, contact Katherine for Zoom link
January 17 3rd Wednesday Virtual Support Group
10:00am-noon Pacific/12:00pm-2:00pm Central, Meeting ID: 833 4473 0364 / Passcode: 341654
Host – Glenn Ribotsky, glenntaj@yahoo.com, contact Katherine for Zoom link
January 17 3rd Wednesday CIDP and Autoimmune Virtual Support Group
3:00pm-4:00pm Pacific, 5:00pm-6:00pm Central
Host – John Phillips, johnphillips.wna@gmail.com, contact John for Zoom link
15:47:27 From Glenn Ribotsky to Everyone:
January 27 4th Saturday Virtual Open Discussion
11:00am-1:00pm Pacific/1:00pm-3:00pm Central, Meeting ID: 851 7949 9276 / Passcode: 159827
Host – John Phillips, johnphillips.wna@gmail.com, contact Katherine for Zoom link
15:49:06 From Glenn Ribotsky to Everyone:
All of the WNA support groups, webinars, and the like can be accessed through our website at www.pnhelp.org
15:49:07 From Shana Phelps to Everyone:
Upcoming Western Neuropathy Association meetings and webinars are always available to be seen at pnhelp.org, as well.
https://peripheralneuropathyresources.com/
CJ Holliday’s group. His next meeting is Mon, Jan 8, at 3:30 EST
15:59:45 From Peripheral Neuropathy Support Network to Everyone:
Chuck: Is there any benefit to a barometric pressure chamber?
16:01:46 From Mike Foxworth to Everyone:
read the book Breath – national best selller
16:01:49 From Shana Phelps to Everyone:
Alpha Lipoic Acid and R-Lipoic Acid are highly recommended OTC supplements
16:02:54 From Shana Phelps to Everyone:
Breath, the book Mike Foxworth is recommending
16:04:55 From Peripheral Neuropathy Support Network to Everyone:
We installed an exit survey when you leave this meeting. Please consider understand that one question.
16
The Art of Breathing, the book GT is recommending
16:06:21 From LS to Everyone:
Daoism breathing is well known method
16:14:35 From MW to Everyone:
I didn’t even know they offered it. Thank you
16:18:22 From Pat Gualtieri to Peripheral Neuropathy Support Network(Direct Message):
To write to the group leader (Pat): leader@dcpnsupport.org
16:18:36 From MW to Everyone:
Expensive
16:22:54 From Shana Phelps to Everyone:
Parkinson’s: https://www.parkinson.org/library/fact-sheets/parkinsonism
16:31:38 From MW to Everyone:
I THANK YOU ALL. Looking forward to next month
16:33:29 From Shana Phelps to Peripheral Neuropathy Support Network(Direct Message):
Before I forget – my new email for work is ShanaPNHelp@gmail.com