The Parkinson Alliance Blog

About our Blog

January 3rd, 2017

Our blog is primarily written by Margaret Tuchman, President of The Parkinson Alliance, and her blogging partner, Gloria Hansen. Margaret was diagnosed with Parkinson’s over 30 years ago and continues to be a voice in the Parkinson’s community. Read more about her here.

Parkinson’s Support Groups: Strength in Numbers

July 11th, 2017

Guest blog post by Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Research Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, Los Angeles, California

Parkinson's Social Support

Support groups for individuals with Parkinson’s disease (PD) and their care providers can play a key role in helping individuals cope with the progressive changes and variability of PD symptoms. As a clinical neuropsychologist, I have had the pleasure of being invited to speak at several support groups in the PD community, including support groups for 1. individuals with PD alone, 2. care providers alone, and 3. a combination of both individuals with PD and their care providers.

I have found that a key element to a successful social support group experience is “fit.” Like medications for an individual, the composition of the social support group has to have the right chemistry for optimal benefit. For many individuals, social support groups are very helpful in obtaining education and feeling supported; support groups can strengthen resilience and inspire both individuals with PD and care providers. Support can take many forms, including 1. practical guidance related to managing day-to-day activities, learning about practical coping techniques and accessing resources in the PD community, to 2. general emotional support.

Groups can have different formats, including, for example:

  • Size: small groups to large groups
  • Structure: from structured lectures from experts in the community to less structured general conversations led by a PWP or care provider.
  • Location: community-based resources, such as hospitals, community centers, and churches to family living rooms at a participant’s home.

Online: On-line or internet resources are also an option for many. A web-based community including numerous forums can serve as significant support for many.

As for preference of formats, I have heard from many participants who have attended different types of groups that a semi-structured group is preferred, a group in which there is a focus on a particular topic while still having the opportunity to process the topic and discuss other pertinent matters that may be of interest. Further, group participants have emphasized the importance of having groups that are uplifting, not just focused on the challenges that come along with PD.

When I have asked about the perceived benefits of a support group, most consistently, I hear that social support groups help to alleviate the feelings of disconnection and isolation, at least to some degree. Almost invariably, individuals have indicated that support groups help participants feel validated and connected with a community. It has been very clear that for many, expressing their voice in such a venue has been empowering and meaningful.

Themes: Some examples of themes that have come up in support groups have included:

  • New treatment options
  • Exercise
  • Nutrition
  • Effective coping techniques
  • Depression and anxiety
  • Cognition
  • Pain
  • Apathy
  • Speech and swallowing
  • Caregiver well-being
  • Loneliness and challenges with support systems
  • Living optimally with PD: Tips for healthy and meaningful living
  • The current status of clinical research for individuals with PD (medications; coping techniques; treatment options; etc.)
  • General supportive conversation about a topic of interest

Additional Considerations:
Some groups may be a good fit for some, while other groups may be a better fit for others. If one is not comfortable with the group, or if one does not find benefit from a group, it is recommended to try a different group that may better suit the person’s need. Furthermore, if a support group format does not meet the needs of an individual, consideration for one-on-one support with a mental health professional may be of help.

For general thoughts about social support for individuals with PD and related recommendations, it may be thought providing to read The Parkinson Alliance’s recent survey report designed to gain insights about social support for individuals with PD. The report can be found here. As another resource, should one want to locate a support group in closer proximity to where they live, the Parkinson’s Disease Foundation has a resource to call to assist in trying to connect someone to a support groups in one’s area: (800) 457-6676.

Patient-Centered Approaches for the Newly Diagnosed

June 1st, 2017

Newly Diagnosed with Parkinsons?

Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.

We “Parkies” never forget the date that we heard the words.

“You have Parkinson’s disease.  Progressive and incurable. But it is treatable.”

Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.

No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.

Lesson learned:
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Good luck.

That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.

University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.

PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.

Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence.  You can live well despite PD.

Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.

I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.

Our challenge is to find newly diagnosed Parkies and connect.

We are committed. We will find our way. We have so far.

– Thank for Gil, for your Parkinson’s voice.  For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.

Project Emma and Parkinson’s Disease

May 16th, 2017

Parkinson’s Support Groups & our Latest Survey: Social Support and Parkinson’s Disease: The Patient’s Perspective

April 13th, 2017

Social Support and Parkinson's Disease: The Patient's Perspective image

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 info@pdf.org.  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

Parkinson’s Dance Program in Pennington, NJ

April 4th, 2017

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.

You Have Parkinson’s Disease, by Laura Crawford

March 7th, 2017

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.

Laura Crawford

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.

© Laura Crawford.  Published with Permission.

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.

“Birds in Turquoise” © Laura Crawford. Published with Permission.

Thank you Laura! We look forward to sharing more of your artwork in the future!
— Margaret Tuchman and her blogging partner, Gloria Hansen