December 5, 2020 Launch Resource Directory
Peripheral Neuropathy Support Group, ZOOM meeting, Saturday, December 5, 2020
by Rodney Smith
Purpose of Meeting:
1) to launch the Resource Directory with an explanation of how members can submit information on providers, products/services and medications/supplements.
2) to provide an opportunity for open discussion and socialization among members.
Agenda:
Pat Gualtieri: Welcome to all and acknowledgement of new participants (opportunity to introduce themselves after launch of Resource Directory).
I’m very pleased to see such a large turnout. This is our eighth official oom meeting of the PN support group and most people seem very happy and satisfied with it. We’re thinking of doing a survey of the members to ask for any recommendations, suggestions, whatever, based on how the meetings have been running so look forward to that in the new year.
The purpose today is twofold: We’re very excited to announce that we’re going to officially launch the Resource Directory, and Terry Orlando and Judson Vaughn are going to show us exactly how you find the Resource Directory, talk a little bit about what it is and the value of it in terms of sharing information.
We’ll practice a little with some examples. The second half of the program will be open discussion for people to socialize and just schmooze. We’d like to welcome everyone especially those who are new to the PN Support Group. We are happy to have new people every month and it shows that we are doing outreach and reaching people. We’re going to give you a chance to introduce yourself after we launch the Resource Directory. As the opening to our open discussion part of the meeting, we’ll ask new people to tell us a little bit about their PN journey. Then we’ll have give and take on whatever you want to talk about.
Mike Foxworth: We’re recording the video. The advantage of recording the video is that Rodney can see what’s going on when he’s trying to make notes about what happened in the meeting. We’re also recording the audio to a product called Otter and it’s going into three places, first it’s appearing as closed captioning on the bottom of your screen; second there’s also a option to view full transcript and third it’s being recorded. This transcript can be edited for a pretty good version of what was actually said.
Report of treasurer on current funding status
– Rebecca Hotop: We opened up the bank account last month. We transferred $852.11 from the account Steve Klitzman closed. We had a $100 check deposit and we had to pay $20 to get our checks. Justin sent a cheddar up deposit of $260.30. We’ve got a total now of $1192.41 and we are legitimate.
Pat Gualtieri: it sounds like we’re flush with over $1100 in our bank account, but at least $800 of that has been spent already on website, MailChimp and other expenses. I know this is a time when people are watching their money because of COVID and such, but if you would like to make a contribution, there are two ways to do that: there is a Donate button on our website https://pnsnetwork.org/for-members/donations/ or you can simply mail a check to Rebecca Hotop, 10639 Canterberry Rd., Fairfax Station, VA 22039. I also put at the beginning of the meeting, the information how to access our website is https://dcpnsupport.org/ , how to access our Facebook page, On Your Feet https://www.facebook.com/groups/515594619050826 , and also how to find the Resource Directory https://pnsnetwork.org/resources/providers-directory/ .
Launch of Resource Directory
The Resource Directory is all about sharing information within the group. We’re excited about it because for the first time, you should be able to find a provider, a product, a service, a medication, or a supplement that someone in the group has tried and you will be able to contact them directly to find out more information.
Terry Orlando: I first got this diagnosis in March, and I found this wonderful local group. The thing I was most interested in is Who do you go see, Who is your neurologist? what have you tried for this. I thought this would be a great way that everybody in our group could share resources. Steve initially sent me a list of products too. But this is a way that we all can put down the names of professionals that we have gone to see or products that we’ve used, and other people can access the resource and they can talk to you about if you like the professional they want to see. It’s all here on our
website, and it’s password protected. I’m glad that you’re here so you know how to use it. I think this will be most beneficial for everybody. You go to the DC Peripheral Neuropathy Support Group website: https://dcpnsupport.org .
To get on to the directory, you go back to page two and provider. When it asks you for a password you put in Apple$auce . It’s Apple capital A and instead of the s it’s the dollar sign $. (NOTE: This password will change periodically to protect the listings)
That’s our official website, our homepage and you can see tabs:
Home Events Mike’s Blog Resources Footnotes Members
Under Resources, you’re going to click that down arrow going to go to Resource Directory and the you’ll see the yellow box which says:
“This Resource Directory is for information sharing only. It is not meant to be evaluative or a critical review of any resource.”
There are three types of resources you can submit: PROVIDER, PRODUCT/SERVICE or MEDICATION/SUPPLEMENT that has worked for you. if you scroll down, some of our members have already put some information in here for you.
Pat Gualtieri: You can see we’ve got the provider, who it was submitted by and then the
person’s email in case you want to contact them and ask them questions and the date submitted. This is where people begin writing information. We wanted it to be available across the page so that you can read all of this in a single section. So at the bottom right of the table in small print, there’s something called: View larger version. If you click on that it shows you across the page, who the provider is, the address, the phone number, what their specialty is and Other Specialty Specify, like I have put in about
Dr. Chun, who is a vascular and interventional radiology specialist. Well, that’s not in the drop down menu so had to call it other specialty and say what exactly he is. Then submitted by which shows the members contac information who is actually providing us with this information.
If you don’t recommend the provider, please don’t put it in the data base. We’re really excited and hopeful that you will start adding information. Peter might talk about someone he saw at a local hospital. Bruce might talk about medication, he knows a lot about medications and why has he tried it. When you see the submitters email and the date submitted, that is part of the privacy thing that we worked really hard on it.
We want you to be able to, for example: if you say Oh, I’d like to know more about Dr. Parikh, I’m going to email Pat. It’s not Pat’s phone number or anything else. You just go to her or me and you say, I’d like to know more about Dr. Parikh who gave a good presentation last month. Do you really trust that she’s monitoring COVID restrictions and such before I go make an appointment with her. I want to know that she’s being careful. If you don’t recommend them, don’t put them in.
Judson Vaughn: You can sort the database on just about any field. So here’s the database, let’s say I guess this is products and services. So if I wanted to, for example, sort on location, I’ll click sort by address, and then it comes up to show me.
Peter Corro: I have a journal where I wrote down a lot that’s happened to me in WordPerfect. How do I share that with your group if they want to read what I wrote.
Response by Judson: just send it to him by email and he will put it on the website and then reference it from the Facebook page.
Judson: All we’ve done is create a skeleton here now. Now we need some beef. We need the muscles. That’s where everybody here comes down and that’s my advertisement.
Pat Gualtieri: I’m going to challenge you at the end to take a few minutes and add something even just one thing. Jud’s going to show how to add a medication. Go ahead and click. Remember he’s already done the password Apple$auce so he has access. My medication is pregabilan generic for Lyrica.
Jud and I are all the only ones who can edit this. So if you make a mistake let us know and we’ll fix it.
Don’t worry if you spell something wrong, or the only address, you know is he’s in Falls Church. We’re going to be monitoring this and we’ll fill in gaps that we notice. That’s what the email is for. You would email me and you’d say, Pat, I see you’ve been taking Lyrica? How long have you been taking it? What’s your dosage? Do you think it helped. They prescribed it for my sciatica and it didn’t do much for my sciatica, but it has really helped the burning in my feet.
So that’s serendipity. I might never have tried Lyrica if they hadn’t prescribed it for my sciatica. This is why it’s important to email and then if the person feels comfortable, you might say, Hey, could you call me? Or can I call you and we can have a better conversation that puts the control in the person who submitted it. You can say as little or as much as you want when the person emails you. November was National Family Caregivers month and Fairfax County has all these free webinars for caregivers, and even a support phone call when you feel like you’re at the depths of despair, call them, they’ll call you back. There’s a free calendar of events. Bruce has been really good about sending us articles that he thinks relevant so we’re putting them in
Footnotes. Footnotes has every URL, every website for success stories for CJ, everybody that people mentioned to us in emails, I tried to put in Footnotes. So there’s one place that you can go to, and they are clickable links and you can go immediately to C J or you can go to our Facebook page, or wherever.
Brief update on response to federal legislative initiative (DOD inclusion of PN for possible research funding)
Full report in January . Not discussed?
Introduction of new participants and open discussion of issues and questions of interest
(3:15-3:50)
Scott – first time with this group but has joined others, first diagnosed this year with mostly lower extremities affected. Really likes the resource page.
Rorey – had chronic lyme disease and rare autoimmune disease which affected sensory systems, daytime sleepiness, has to have a weekly infusion for six hours. He will put his excellent providers into the database.
Jud, note that everyone must join our group in order to get invitation to meetings.
David -is trying medical marijuana and seems to help him sleep.
Judy – you can specify manufacturer when ordering drugs and recommends the rollator (Rorey: Nitro rollator at Walmart $147.00
https://www.walmart.com/ip/Drive-Medical-Nitro-Euro-Style-Rollator-Rolling-Walker-Red/687353000)
Drive Nitro and the Vienna (formerly Rexall) Pharmacy, 150 West Elm St. Vienna, VA Phone 7039387111 as they work with you to ensure the same manufacturer on generics and also coupons for discounts.
Diane – the consumer lab subscription is just for supplements not medications. They rate a lot of supplements and get recommendations such as safe ranges to take.
Max -has an excellent estate sale person who will handle small estates which he will add to resources.
Pat Gualtieri: we have two things to finish and then we’ll get Steve for the wrap up.
First, I’m challenging you to add one thing to the Resource Directory. After you close out of this meeting, before you get up and get going on dinner or something else, take a minute and add one item to the services and providers or medications part of the Resource Directory, and we’ll see it be much more useful if we have 50 entries than 15.
Secondly, I want to remind you that the Foundation for Peripheral Neuropathy
December 16 webinar is on living with PN. It is an expert presentation with a major question and answers session.
Announcement of Foundation’s Dec. 16 webinar (Living Well With PN), report on PN Support efforts at Chevy Chase and our January 2, 2021 meeting (3:50-4:00 – Steve, Bruce)
The National Foundation for Peripheral Neuropathy https://www.foundationforpn.org/ on December 16 had a webinar on living well with peripheral neuropathy which you can view at https://www.foundationforpn.org/webinar-ask-the-expert-with-dr-shanna-patterson/ as well as previous ones. This is the value of registering with them. Lou Masse from the National Foundation often attends our meetings. The Foundation is a wonderful resource that we need to use, because it’s putting a lot of effort into it.
Bruce: he has two behaviorial therapists to speak at our next meeting. He has been talking for months about our need to get a cognitive behavioral therapist. He is convinced that once you go through all the aggravation of mourning your old self which will never return and accepting your new self living with peripheral neuropathy, it’s all psychological. You need a good psychological outlook and thank God that you have another day to be grateful for every minute of it and what can I do to help
somebody else today. When you have a purpose in life it makes it a lot easier to bear your pain. Two behavioral therapists, Lucy Dunning and Genevieve Wardell, are lined up for the January 2 nd meeting and have put together a good program. They belong to the Blue Sky medical group that does all kinds of things for all kinds of people.
Steve Klitzman: Joel Minton, the physical trainer who came to us twice when we were meeting in person in Virginia is developing a presentation on Mindfulness for either February or March. Then a brief status report on my attempts to see if I can get a support group going in Friendship Heights, Maryland where I’m living in an area that has about nine apartment buildings, with about 5000 residents. I estimate at least 100 people probably have neuropathy here in Chevy Chase. I’ve been in touch with the village center twice, and they’re in touch with Suburban Hospital, the nearest hospital, to see if they have any interest in working with us. I hope in the new year to start a support group based here which will be the first support group in Maryland, in many years, and frankly, for DC as well. I’ll let you know how that goes.
Pat Gualtieri: I have to end the official meeting. Anyone who would still like to continue talking please do so. Anyone who feels that they’re exhausted. Feel comfortable leaving and thank you. We’ll see you on January 2.
Attendees:
Terry Orlando
Pat Gualtieri
Michael Foxworth
Marilyn Zak
Rorey Smith
Rebecca Hotop
Helaine Zonderman
Steve Klitzman
Gloria Norris
Diane Moritz
Judy Gulbis
Peter Corro
Bill Porter
Gloria Norris
Diane Mowitz
Rodney Smith
David Bush
Brenda Cheadle
Bill Porter
Bruce Malkin
Myrna McKee
Walt Carlson
703-352-5438
703-362-6112
Max Dex
Scott