Patient-Centered Approaches for the Newly Diagnosed

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.

About our Blog

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.

Happy New Year and More …

As we look forward to the New Year, our goal is to share educational and inspirational information with you that will help improve your 2017.  Our President, Margaret Tuchman (who has had Parkinson’s for nearly 40 years!) and her blogging partner, will continue writing on topics such as the latest in research, mindfulness, and exercise.  We also have several guest bloggers that will be contributing on medical-related topics, such as currently available Parkinson’s medications that you may not be aware of that can help improve the quality of your life.  As we go forward into this new year, please know we are always available to help answer your Parkinson’s-related questions.

Parkinson’s and Red Cord Exercise

In our last post, guest blogger John Cornicello talked about exercising at the School of Acrobatics and New Circus Arts to help combat his Parkinson’s and get in better shape. While not as exotic as a circus school, in early March I added another type of exercise to my program.  It’s called “Redcord” and is taught at Activcore in Princeton, NJ (although they have other facilities in central NJ and in Denver, Co).  Redcord uses a patented “bungee assisted” system of cords and slings that fully supports my weight throughout each of the movements my therapist directs me to do. After clearing it with my movement disorder specialist, I decided to give it a try.

When I first arrived, a physical therapist evaluated me and found I have problems with mobility (walking and moving around), pain in my left shoulder (unrelated to my PD), decreased standing tolerance, generalized body weakness, and I continue to use my walker. However, my rehab potential is classified as “good,” and I started the program. My plan is attending three times a week, and I’ve thus far made it through 15 visits.

This system allows me to perform many of the same suspension exercises as an athlete.  Granted, the amount of bungee assistance will vary, but it’s still exciting for me to do this work.

IMG_0399

Marge and her trainer, Tyler.

IMG_0374

Marge developing her core musclesMarge-RedCord

It is especially important for people with Parkinson’s to exercise, and this training is very exciting for me. We will be updating Marge’s progress on this training.  Check back for updates.

Meanwhile, what type of new exercises are you incorporating into your routine?  We’d love to hear from you!

– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance

Follow Us Follow us on TwitterFollow us on FacebookInstagram

Sign Up for Email Alerts

By providing your email you agree to receive periodic emails from The Parkinson Alliance.

Please tell us more about yourself:

This month is? (Anti-Spam)

Contact UsTerms Of UsePrivacy Policy

The Parkinson Alliance is a nonprofit, tax-exempt charitable organization under section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law. Copyright © 2018 The Parkinson Alliance. All rights reserved.