PNSN Meeting Notes December 2022

Our guest speaker was Dr. Maryam Dadkhah, who is an D.C. area nutritionist and dietician.

Her video and presentation materials will be posted here.

Meeting Notes (from the chat)

01:06:57 susan: Have you heard of anyone getting PN from the Pfizer COVID shots?

01:16:35 Shana: I have Mast Cell Activation Syndrome (MCAS), so I also have to follow a gluten-free diet. There are still many options for whole grains that don’t contain gluten, but in limited access depending on where you live.

01:18:10 Karen: what supplements cause liver and kidney disease?

01:18:33 Shana: How can you improve b vitamin absorption, especially in people with pernicious anemia?

01:19:41 Joanne Jessen: If you have an  idea for a topic and/or a speaker for one of our future meetings, please send it to me! Joanne – jessen.joanne@gmail.com

01:21:00 Gordon: Recent research on vitamins basically says they are not helpful. Same for supplements.

01:23:05 Shana: Does joint pain also decrease if the reason for pain is chronic injury (I have lupus and potentially hEDS) in regards to weight loss aiding in less joint pain?

01:23:27 Peripheral Neuropathy Support Network: To lose weight: portion control, exercise, and smaller plates.

01:27:18 Pat Gualtieri: Does using an app like My Fitness Pal, where you list your total food consumption each day, help with weight loss?

01:27:42 Shana: how do you control cholesterol levels (LDL, HDL) when you have conditions that cause high cholesterol, and have a family history of high cholesterol?

01:29:18 Shana: Pat G- I found that MyFitnessPal helped a ton with getting caloric consumption down/controlled. However, if you want to do the vitamins/supplements portion, you have to make sure each and every food has the full list (ie make your own foods and check them with the internet). So, for just caloric consumption and aiming for caloric deficit, myself and at least 4 people I know found MFP helps.

01:29:32 Peripheral Neuropathy Support Network: What are some benefits of staying in motion?

01:30:12 Peripheral Neuropathy Support Network: Set expectations: plan on losing 2-6 pounds over six months.

01:32:22 Peripheral Neuropathy Support Network: 150 minutes per week of moderate intensity physical activity (20-25 minutes/day)

01:32:58 Gordon: Join a gym  It can be free.

01:34:59 Mike Foxworth: Don’t rely on exercise alone to lose weight..2019 Scientific American article reports research that the body will simply change what it uses the food for. With food restriction it may rob the ability of the body to repair its cells. With excess calories food goes to fat. But metabolism will not change – you use the same number of calories a day no matter how much exercise you do that particular day. Over a long time with systematic change in exercise the persons metabolism might change.

01:35:17 Pat Gualtieri: Check out virtual and in person classes linked in our December Footnotes (in your December invitation and on the website: pnsnetwork.org) Almost all of us are eligible for Silver Sneakers – free classes at participating gyms

01:39:42 Peripheral Neuropathy Support Network: Great presentation. Thanks, MaryAm.

01:39:42 Brenda: For weight control consider Intermittent fasting. Read about it on the Johns-Hopkins website. We are in our 80’s and both have neuropathy and other challenges so we sit more than we once did. This helps. We both go to the gym, my husband to use weight machines and I go to water aerobics and there is always housework, inside and out.

01:42:21 Peggy: Is Turmuric truly an anti-inflammatory?

01:42:28 Peripheral Neuropathy Support Network: Pernicious anemia.

01:43:58 Peggy: If I’m 90% vegetarian, should I take B12 supplements?     Also Is 400 IU of vitamin D enough?

01:44:25 Karen: what supplements cause liver and kidney disease?

01:45:27 Karen: can we get a copy of presentation?

01:46:04 judy262: What is a good source of USP vitamins

01:46:10 Peripheral Neuropathy Support Network: KAREN: Yes. We will post both the video of her presentation and PDF of her slides

01:46:11 Brenda: What about fish oil capsules?

01:47:20 Karen: thanks, where will it be posted?

01:47:23 Pat Gualtieri: I was asked about Silver Sneakers. Go to Silversneakers.com and click on ”Check Your Eligibility” Have specific classes designed for Seniors

01:47:45 Shana: I asked about managing LDL and HDL, as in what is the best way to do it?

01:49:20 lmazawey: what about dairy, coffee, tea???  good/bad/mixed?

01:49:40 Shana: Do you find the FODMAP diet to be a good anti-inflammatory diet? (I have MCAS, and Non-Celiac Gluten Sensitivity, so this is what I was suggested).

01:50:07 Peripheral Neuropathy Support Network: 25 grams of sugar per day for women; 36 grams of sugar per day for men.

01:51:05 Peripheral Neuropathy Support Network: Fruit is sugar, but it comes with so many other benefits, that it is helpful. Raw fruit, not processed.

01:51:06 Mike Foxworth: Many “low-fat” foods are bad for you because they add tons of sugar to make them palatable.

01:51:26 Peggy: If I’m 90 percent vegetarian, do I need B12 supplements?

01:51:56 Peggy: If don’t like fish, need fish oil capsules?

01:52:13 Peripheral Neuropathy Support Network: LDL and HDL

01:54:12 Brenda: raisins?

01:54:14 Peripheral Neuropathy Support Network: Coconut and palm products are not helpful.

01:57:34 Mike Foxworth: What does Maryam think of 1989 Atlantic mag: “Diet has hardly any effect on your cholesterol level; the drugs that can lower it often have serious or fatal side effects; and there is no evidence at all that lowering your cholesterol level will lengthen your life”

02:00:55 Mike Foxworth: The corollary is that eating saturated fat will not negatively affect health (other than its effect of being very high in calories and may make it hard to avoid excess calories if the rest of the diet is not balanced)

02:04:57 Natalie: What are best foods to eat pre and post workout

02:09:24 Peripheral Neuropathy Support Network: How to get good research?

02:10:50 Karen: what about alpha lipoic acid?

02:11:11 Peripheral Neuropathy Support Network: PubMed is a good source for good science information on research studies.

02:16:07 lmazawey: many nerve supplements have it – Nervive for example

02:17:49 judy262: Just me personally have used a tumeric blend and had incredible antiinfmamatory results

02:21:25 Peripheral Neuropathy Support Network: Thanks to all who have contributed.

02:32:10 Peripheral Neuropathy Support Network: Lou says that Shanna Patterson is a very good physician.

02:35:20 Peripheral Neuropathy Support Network: CheddarUp focuses on non-profits.

02:35:32 Rich: Resource reminder: go to following website: “https://pnsnetwork.org/” and click on the tab for “Resources” — lots of good info re: all aspects of PN

02:39:23 judy262: Would you put the donations address up in chat. Yes

02:39:54 Karen: pudendal neuralgia

02:39:54 Rebecca Hotop: Rebecca Hotop (Make check payable to PNSN)

02:40:06 Rebecca Hotop: 10639 Canterberry Rd., Fairfax Station, VA. 22039

02:40:09 Shana: The pudendal nerve supplies areas including the: lower buttocks. area between the buttocks and genitals (perineum) area around the anus and rectum. vulva, labia and clitoris in women.

02:42:03 Peripheral Neuropathy Support Network: Dr. Joseph Choi, Neurosurgeon,

02:42:37 Peripheral Neuropathy Support Network: Gordon recommends him.

02:43:08 Peripheral Neuropathy Support Network: Falls Church, VA

02:43:16 Peripheral Neuropathy Support Network: He’s now returned to INOVA

02:43:21 Shana: Northwestern Medicine has a ton of subspecialties listed under their doctors via the search, so if you’re in that area (Chicago, Illinois area), use their website.

02:44:12 Peripheral Neuropathy Support Network: Gordon, we can post Dr. Choi’s contact information on the website.

02:55:48 Peripheral Neuropathy Support Network: Speaker’s website is eatwellguru.com