Resources to help you live with Parkinsons

Whether you have been diagnosed just recently or a decade ago, you don’t have to deal with PD by yourself in Pamlico County anymore. In just the past few years a number of resources have evolved to help people with Parkinson’s.

Here are some of them:

Support Group:
The Pamlico Parkinson’s support group meetings give people with Parkinson’s a chance to connect with other PWPs who understand what you are going through. The meetings are also open to caregivers (and others who care about their friends with PD.) In our informal setting, you share as much – or as little – as you want. Someone may be able to suggest tips or hacks to help you navigate the challenges PD presents. Sometimes it’s just good to talk about your Parkinson’s experiences with others who are on the same road.

We don’t do all of the talking. At many meetings guest speakers share their expertise in the world of PD. In our first year, speakers have covered topics such as speech therapy, deep brain stimulation, music therapy, incontinence. As we line up guest speakers and discussion topics, we will post them at our Meetings page. There is no charge to attend meetings.

PD-Specific Exercise
Getting diagnosed with PD doesn’t mean sitting back and waiting for things to get worse.. Evidence in recent years has shown that exercise can help alleviate the symptoms and slow down progression of the disease. Or, to put it more simply, exercise is medicine. The sooner you get started, the better off you’ll be. Forced exercise – in which someone else is setting the pace – is especially effective (in part because it overcomes the apathy that is a non-motor symptom of PD.) Two examples of forced exercise are boxing and tandem biking, and both are available in Oriental.

Rock Steady Boxing is a nationwide program that is designed specifically for PWP. ( Something about throwing a 1-2 jab-cross flips a switch in the neurological network. Sessions happen twice a week, Tuesdays and Fridays, 3:30pm-5:00pm at Village Health and Fitness, in Oriental. Physical therapist, Jennifer Smart was one of the first RSB coaches in North Carolina to be certified to lead these classes, which began in May 2017 in Oriental. A host of volunteers assist. You don’t have to live in Pamlico County to take the class. Class fee is $80 per month payable to VHF.

ParkinRide Tandem Cycling Program
There is evidence that PWP can ease their symptoms and slow progression of their PD if they ride a bicycle for 45 minutes at least 3 days a week at a cadence of 85 rpm – each foot going around 85 times a minute.

85rpm can be a tough pace for most people with Parkinson’s to sustain on their own – but on the back seat of a tandem bike they can. That’s the idea behind the ParkinRide program which has two stationary tandems set up at Village Heath and Fitness. The program matches area cyclists, who set the pace from the front seat, with PWP’s in the back. (Public Radio East did a story on the program.) The half dozen PWP’s who began with this innovative program since its start in January 2015 are still riding today. (Gym membership required.) PWP’s interested in taking part, and cyclists interested in volunteering as captains, may contact Jennifer Smart at 252-249-1051.

Dance with DA Troupe Parkinson’s can shorten our gait, slow our steps and do a number on our balance and flexibility. Dance has been used to counter that rigidity. Since the summer of 2015, choreographer/dancer Wendy Osserman has led a weekly dance/movement class session for people with Parkinson’s. (No charge.)

PD – Parkinson’s Disease
PWP – People (Or Person) With Parkinson’s
DA – abbreviation for dopamine

Resources On Line
The Parkinson’s Foundation advocates on behalf of PWP, offers all kinds of support – a hotline, Aware in Care kits, booklets about various aspects of PD – for free. (They also provide grants to community-based groups such as Pamlico Parkinson’s.) Webinars and more info can he seen at

The Michael J Fox Foundation has raised hundreds of millions of dollars for research to find a cure for Parkinson’s. The Fox Foundation website has, among other things, updates on research, monthly webinars which you can hear as podcasts, links to clinical trials seeking participants.

Perhaps not as well-known, but worth checking out:
The Davis Phinney Foundation focuses on how to live well despite being diagnosed with Parkinson’s. Without glossing over the challenges of PD, the Phinney Foundation emphasizes taking control thru exercise and attitude. In fact, they wrote a manual, “Every Victory Counts“ on how to do it; they’ll send you this manual for free. (though donations are appreciated.)

Leg freezing in place? Arm won’t swing? Posture going? Dancer Pam Quinn’s been there, done that and now shares what she’s learned from 2 decades of dealing with Parkinsons’ herself. Drawing on her dance training, she has become a movement coach and her site offers invaluable tips and motivation to keep moving. (Scroll thru topic list under Blog to find the subject you want.)

As you read about research into Parkinson’s, it’s easy to get lost in the scientific jargon and the hype of some reporting. The site can help; Science of Parkinson’s lays things out in plain English.

Connect with other PWP who are trying to get most out of their meds and other therapies.

Don’t give up - check us out. Connect with others who really understand what you are going through. It is said you don’t die from Parkinson’s but is a disease you learn to live with. Thank you for your interest and support.