Thanks to Rodney Smith for assembling these notes.
Meeting Notes January 2, 2021
Here are notes from the Peripheral Neuropathy Support Group meeting, held Saturday, January 2, 2021
Purpose of Meeting: The purpose of this meeting is two-fold:
1) Learn about the benefits of cognitive behavioral therapy (CBT) to treat the anger, anxiety and depression one can get from having a chronic disease like PN. Thanks to group member Bruce Malkin for inviting our two guest speakers. They are two licensed, clinical mental health counselors: Lucy Dunning (L) and Jenevieve Wardell (J) with Blue Sky Family Counseling, Charlotte, NC. We learned how to change unhealthy behaviors and negative thinking into more self-confidence and happiness. Interestingly, both of our speakers told us they “have chronic pain conditions in regards to peripheral neuropathy.” Lucy has “peripheral neuropathy of the intercostals and ilioinguinal nerves, and complex regional pain syndrome type 2,” and is a support group and advocacy leader for the U.S. Pain Foundation for the Carolinas. Jenevieve has “neuropathy of the left lower extremity. ” Jenevieve is also a certified trauma-focused cognitive behavior therapist and certified grief therapist.
2) to provide an opportunity for open discussion and socialization among members.
Agenda: (Thanks to Steve Klitzman for a complete video recording available at https://youtu.be/LLM2wmeRf44.
1) Welcome to all and acknowledgement of new participants (2:00-2:15 – Pat Gualtieri, moderator) For the first time we have three international registrants: UK, NZ and Ontario, Canada. She provided background on our group (Resources Directory, On Your Feet Facebook, etc.) to the speakers.
2) Acknowledgement of donations and report of treasurer on current funding status; (2:15-2:30 – Rebecca Hotop) Three checks received and deposited so have about $1300 in the account. Donations are appreciated and help the group keep going. She needs the email listing so she can thank the donors and Pat agreed to help her.
3) Report on response to federal legislative initiative (DOD inclusion of PN for possible research funding)
(2:30-2:35 – Pat) Lou: PN is now included in the DOD research program for funding and the most available for research would be about $10 million. Still trying for NIH funding.
4) Lucy Dunning (L) and Jeneveive Wardell (J) of Blue Sky Family Counseling
https://blueskyfamilycounseling.com/meet-the-providers/ gave a thought-provoking presentation on Cognitive Behavioral Therapy to the PN Support Group. It generated much discussion and many good questions. It motivated many of our members to reflect more carefully on their approach to pain and how to deal with it in a more positive way. Lucy provided a handout available in Resources and this followup offer: Thank you so much for your kind words. We are happy to help in any way. Please see the following handouts. I did include a worksheet on changing your pain story/narrative. I am happy to lead a further discussion with the group if anyone would like me to walk them through this. Thank you for letting us join the call! I apologize in advance for scanning-I had to scan it out of a resource book that we use for chronic pain. Thank you, Lucy Dunning, Ed.S, NCC, BC-TMC, LCMHCSOwner of Blue Sky Family Counseling and Coaching www.blueskyfamilycounseling.com, 10801 Johnston Road, 115 Charlotte, NC 28226.
L-shared about resources being available from the U.S. Pain Foundation
https://youtu.be/LLM2wmeRf44, American Academy of Pain Medicine https://painmed.org/ and Pain Society of the Carolinas https://www.carolinapain.org/ .
She has heard good things about peripheral nerve stimulators in reducing pain but doesn’t have one yet herself.
J-explained CBT as a triangle with thoughts, feelings and behaviors at each point and connected. We need to catch/stop our negative thoughts/patterns and replace them with positive ones that are honest and genuine to us. L-supported this view with chronic pain flareup and remembering that it has ended before and will again. We need multiple modalities in addition to CBT. She shared visuals to help change our narrative positively but it takes time. Some will be posted on the website. The cycle illustration below is good for PN sufferers :
Bruce Malkin-shared his experience and recommended having a CBT therapist to help the transition possibly over a number of years. Remember it is just one of the tools you need in your toolbox along with mindfulness and acceptance for example. L-recommended looking for a therapist who specializes chronic medical conditions and pain rather than focusing on certification in CBT and understands the dynamic. J-supports L but also recommended looking online for a CBT specialist if you want CBT.
https://www.findcbt.org/FAT/ https://thervo.com/cognitive-behavioral-cbt-therapy
Bill Porter-how often would you have to see a therapist? L-responded once or twice a week depending on your relationship with the therapist;
J-depends on where you are in your journey and took her a year and a half to complete.
Dave Matz-asked about any resources for caregivers and others effected by the individual’s PN.
L-research has shown that loved ones have more depression over the limitations than the person experiencing it and mentioned there is a support group for them. Bruce has hired a full time caregiver to reduce the load on his wife and also has PN proofed his home with additional gripping devices.
5) Open Discussion
Santa made a guest appearance at Steve’s request and invited anyone to take a Zoom picture with him. He confirmed the beard is real.
Judy Gulbis: asked that DCPN be in the subject line of any messages so she knows to look at it rather than trash it.
Rorey Smith: asked if anyone knows a mover who has experience with PN clients. Steve responded. Helaine recommended Abilities Network: Heather Murphy, SMM-C Director of Move Management Services Senior Service Logo FINAL [Abilities Network] 8503 LaSalle Road, Towson, MD 21286 Phone: 410-828-7700 ext 1271 Fax: 410-828-7708 E-mail: hmurphy@abilitiesnetwork.org
Website: www.abilitiesnetwork.org . Terry Orlando asked how his treatment for sensory and motor deficit was going and he said it was going well.
Steve: mentioned Pat is replacing him as group leader while he focuses on programming and establishing a group in Chevy Chase. He would like assistance on programming as well as membership.
Peter: He asked Bruce how does he reconcile his physical limitations with his mental attitude. Bruce answered go to a certified CBT counselor for 18 to 24 months and do what they say to do to get your mind straight. Joel Minton confirmed that recommendation to reduce the emotional burden and be better equipped for balance through practice. He will address next month.
MaryJoe: has a spinal cord stimulator but has been a little disappointing. She asked about stem cell research and Steve responded that nothing found yet for regenerating nerves and numbness.
Terry: asked about lasers and infrared. Steve responded that consensus has been that they aren’t effective so need to ask if they have had a blind trial. Judy has one that is phenomenal and really helps her pain.
Bruce: takes Melatonin every night and helps him sleep. He also reminds himself how to properly walk bending his knees.
6) Next meeting is 6 February 2021 at 2PM with a presentation by Joel Minton.
Additional information is available in the chat excerpts last below.
Chat Excerpts:
13:59:59 From Pat Gualtieri to Everyone : dcpnsupport.org Our website
14:15:53 From David Matz to Everyone : Are we using the waiting room on purpose – for security reasons?
14:18:50 From Pat Gualtieri to Steve Klitzman(Direct Message) : hit record button!
14:21:53 From David Matz to Everyone : DJM should turn the auto-record function on. to record meetings to the web. If the recording has a lo of wasted schmoozing time before and after the meeting. DJM willedit the video to remove those areas.
14:26:01 From Terry Orlando to Everyone : Maybe we can post it on the website?
14:48:13 From judy262 to Everyone : Can I get home page web site?
14:49:11 From Pat Gualtieri to Everyone : PN Support Group of Metro DC – dcpnsupport.org = website
14:58:45 From Jeneveive Wardell to Everyone : Applied VR or Psious for virtual reality therapy
14:59:58 From Jeneveive Wardell to Everyone : blueskyfamilycounseling.com
15:01:37 From Joel Minton to Everyone : Apollo?
15:07:01 From Terry Orlando to Everyone : Eric H Williams
15:08:21 From Jeneveive Wardell to Everyone : US Pain Support Group
15:08:29 From Terry Orlando to Everyone : US Pain foundation
15:14:50 From David Matz to Everyone : Calm App for mindfullness
15:15:26 From Helaine Zonderman to Everyone : AARP has free guided meditations.
15:15:41 From Joel Minton to Everyone : That kind of meditation practice is called PMR “Progressive Muscle Relaxation”
15:16:32 From judy262 to Everyone : judygfoto@verizon.net
15:16:47 From judy262 to Everyone : Calm app trial
15:20:39 From judy262 to Everyone : Trying to [post Calm to website, need password?
15:21:09 From Helaine Zonderman to Everyone : Heather Murphy, SMM-CDirector of Move
Management ServicesSenior Service Logo FINAL[Abilities Network]8503 LaSalle Road, Towson, MD
21286Phone: 410-828-7700 ext 1271Fax: 410-828-7708E-mail: hmurphy@abilitiesnetwork.org
Website: www.abilitiesnetwork.org
15:23:44 From lou mazawey to Everyone : Happy new year everyone! Take Care!
15:24:24 From Rebecca Hotop to Everyone : apple$auce
15:26:53 From Joel Minton to Everyone : Oh, the device I was thinking of is called Apollo Neuro, but I don’t know whether it is effective.
15:27:29 From judy262 to Everyone : What is “field 7” at end?
15:43:16 From Joel Minton to Everyone : the device or technique should have Randomized double-blind trial published in a peer reviewed journal
15:48:45 From Lori to Everyone : I have no specific questions. Most of my questions or concerns have been addressed. Good stuff!!
15:49:36 From Gloria Norris to Everyone : I wonder if anyone has used “Ceremony CBD Oil” Anderson
Cooper was recommending it on Facebook. Also for moving -used to be TAD
15:50:38 From Gloria Norris to Everyone : Transport Company-free consultation 240.4030177
15:51:53 From Diane Mowitz to Everyone : I have to leave soon but I want to thank you, Pat and Steve, for arranging today’s session and for everything you do.
15:55:12 From Joel Minton to Everyone : Couple places for online research, look up pubmed and Google Scholar.
15:56:21 From Pat Gualtieri to Everyone : talk soon
15:58:55 From Joel Minton to Everyone : It affects the priopriception, sense of body in physical space
15:59:18 From Joel Minton to Everyone : *proprioception
###