Parkinson’s Support Groups & our Latest Survey: Social Support and Parkinson’s Disease: The Patient’s Perspective
Social support is a necessity for everyone, including people with Parkinson’s. The goal of our latest survey, Social Support and Parkinson’s Disease: The Patient’s Perspective is to better understand the issues surrounding social support from the perspective of the person with Parkinson’s. You can download a free PDF of the complete survey report here.
Many participants commented on how important support groups are, both in person and online, to their well being. “Thank God for my PD support group, they really care and are everything to me … they talk to me about PD in a non- judgmental way.” We were also surprised, however, at the number of participants who didn’t know how to find support groups in their area.
Some of the major Parkinson Disease foundations offer information to connect you with area resources. The Parkinson’s Disease Foundation keeps a listing of nationwide Parkinson’s support groups. You can call them at (800) 457-6676 to ask for a referral or email them at email@example.com. The American Parkinson Disease Association maintains a nationwide network of various information, including support groups. To find a support group in your area, first go to this webpage. Then enter either your zip code or state into the form and click Go. A result page with additional links will appear. Click the Resources & Support link. Then, on that resulting page, click the link for Support Groups and click Support Groups again.
If you are unable to go to an area support group and/or want more daily interaction, consider joining an online group. Doing a web search on “Parkinsons online support groups” brings up a variety of options. Before joining a group, take a look around the site to see how active the members are and if it seems like a good fit. Margaret is a member of My Parkinsons Team. Membership requires registration and is free. Once you create a profile, you have the ability to check in each day and answer the question “How is your day? good, bad, so/so?” You can comment on how others are doing, ask and answer questions, and even meet people who are in your area. As you find yourself chatting with certain people on a regular basis, you can add them to your “team.” A team can include anyone on the site that you’d like to keep track of and get to know better. A great thing about online groups is you can participate as much or as little as you want.
As one of our survey participants noted, “The importance of social support cannot be overrated. … It takes courage to reach out for support once physical symptoms or mobility are bad. … You must believe in your own worth as a human being, and continue to reach out to and encourage others as well.”
We welcome your comments.
– Margaret Tuchman & her blogging partner, Gloria Hansen
The Parkinson Alliance is proud to sponsor the Parkinson’s Dance Program at Capital Health Medical Center–Hopewell in Pennington, New Jersey. Join in every Thursday 1:30–2:30 pm through June 15, 2017 in the 4th floor conference room, One Capital Way, Pennington, NJ. This dance class utilizes specifically designed creative movement and choreography which will help participants develop more freedom of movement, with a sense of grace, rhythm, and ease. All classes incorporate live music and is lead by professional dance instructors trained through the MARK MORRIS DANCE GROUP/DANCE FOR PD PROGRAM in Brooklyn, NY. This class can accommodate those who walk independently, need a cane, or need a wheelchair. Caregivers are encouraged to participate. While there is a suggested donation of $30 for the entire program, all are welcome.
On the third Wednesday of every month between 2–4 pm is a Parkinson’s Support Group. The first hour is focused on educating and empowering patients, their families, and caregivers through talks about PD. The second hour the group splits. Patients can share and learn from one another in one private session while family members and caregivers can do the same in a nearby room. Meetings are held in the NJ PURE Conference Rooms B and C at Capital Health Medical Center–Hopewell. Register by calling 609-537-7157 or register online at capital health.org/events. Complimentary valet parking is available at the main entrance, and refreshments are provided.
Recently Margaret Tuchman joined an online Parkinson’s community at MyParkinsonsTeam.com, a social network for people living with Parkinson’s. Laura Crawford sent Margaret a welcoming note, some of her original artwork, and also spoke of how The Parkinson Alliance website was a help to her after she was diagnosed with Parkinson’s. We are very grateful that Laura agreed to share her story and some of her artwork here.
When people ask me: “What do you do?” I mumble and look puzzled. In my case, a better question would be: “Why do you do what you do”?
You see, in many key aspects, I’m no longer who I was.
I was born in 1962, and for half a century my life ran on what I believed were firm tracks. I loved to read and majored in Literature. For 15 years I did media relations for a telecommunications firm. In 2009 I opened a Design and Communications agency. There I wrote copy while my partner led the graphic side of the business.
Then one day in February 2014 I heard four little words — how can I say this in a way that doesn’t seem melodramatic and yet conveys the massive importance of the moment?— that flipped my life over like an omelette on the range:
“You have Parkinson’s Disease.”
Duh. It was sort of undeniable: I shook; the muscles on one side of my body were scrunched taut; I couldn’t smell a thing (which on occasion was a blessing); I cried for no reason; I fell asleep in front of a client (he was very boring).
With time, though, it became apparent that the truly fundamental changes were occurring in my brain.
Once my life was encased in books; now it is overflowing with markers, pencils, sketchpads and other paraphernalia of the arts. Instead of flipping the pages of a novel, I doodle, draw, and my hands are usually dirty with ink.
I don’t illustrate or draw to please, though that would be nice extra. I do it because I have to, as I free fall into this raw and surprising stage of my life.
Where I was very coherent and (blush) quite eloquent, I now bumble and look for words that sometimes are no longer there.
Yet, even if it were possible, I would not change this final stretch of my life (dopamine-eating monster inside me and all) for the one torn away by those four words.
I have found an undeniable pleasure in graphics and purpose and vibrancy (though that could just be the shakes) in the community of Parkie colleagues and their caregivers.
If you think it through, even if Parkinson’s is a life-sapping monster that disfigures us with time, everyone ends up a corpse at the end.
Given that cheery fact, at least I can say that at this very moment I’m thoroughly enjoying a cup of coffe while writing this. You have what you have, life is what it is… And moreover, I was given the opportunity to march this last bend of the road in the loving loving loving loving company of my husband and my peers.
Just listen to our collective footsteps resound in deep compassion of the human condition that we share.
Thank you Laura! We look forward to sharing more of your artwork in the future!
— Margaret Tuchman and her blogging partner, Gloria Hansen
Michael Norton shares fascinating research on how money can buy happiness — that is, when you don’t spend it on yourself.
“Giving to others gives us pleasure. It makes us happier people which in turn leads us to give more which makes us even happier and… you get the picture.” — says Brady Josephson who wrote “Want to be Happier? Give More. Give Better.” Likewise, in “Want to be Happier? Stop Being So Cheap,” author Jordan Michael Smith discusses the correlation between generosity and happiness. In fact, doing an Internet search on “happiness and donations” resulted in more than 1,200,000 articles that supports the good feeling you get when giving to a worthy cause.
The Parkinson Alliance is a worthy cause and one we both personally support. It is dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson’s, and we certainly welcome any donation. Each of us also support other organizations. For example, Margaret loves horses and she regularly supports Habitat for Horses. After watching Norton’s talk, we visited DonorsChoose.org and completely funded a project at a South Carolina school so that special needs children could have a day with therapy horses. Immediately we felt great and agreed, you absolutely can buy happiness!
– Margaret Tuchman & her blogging partner, Gloria Hansen