In an April post, I challenged researchers with the following:
“Given that almost all exercise studies (and many other topics, too) are aimed at people who have been diagnosed in the last 2-5 years, it seems that there are no exercise guidelines for those of us living with PD for 10, 15 or more years. Can someone design a study aimed at people like me?”
One of our wonderful Twitchy Women, Ethel Meyer, forwarded my blog to a researcher she knows at Shirley Ryan Ability Lab in Chicago. Ethel has invited me to go to classes with her there several times, but it had never worked out for me. She introduced me to researcher, Miriam Rafferty, PT, PhD, NCS, who is doing research relevant to people with long term PD like me. She invited me to come see their facility near Northwestern Hospital the next time I was in Chicago.
A big welcome to Shirley Ryan Ability Lab
A few weeks ago, I finally met with Miriam Rafferty and Eric Espinoza, the program outreach coordinator at Shirley Ryan Ability Lab. They took me on a tour of the 1.2-million-square-foot facility, which is in the Streeterville area of Chicago (near downtown). Each inpatient floor is designed to support patients as they recover from complex injuries and conditions and work to regain specific abilities.
When I was shown an inpatient room, my reaction was “this is what every hospital room should be like”. A prominent feature was a white board with the medication schedule for each patient that stressed that all meds need to be given on time, everytime, quite different than what usually happens with PD patients who are given their meds by the hospital schedule, not theirs.
Miriam Rafferty’s Office
The physical therapy areas reminded me of Parkour or Ninja Warrior courses, with fun exercises that promote wellness.
The view from the treadmills cannot get any better than this
A place to say thank you
The Research
All very impressive, but the real reason I was there was to talk to Miriam Rafferty about her research. She told me that research is incorporated into everything they do there. This is her philosophy about Parkinson’s research and why they are looking beyond just the newly diagnosed.
“The researchers doing mechanistic exercise intervention studies in Parkinson’s disease are doing needed work. Their studies will discover new things about exercise and the brain to help us optimize exercise prescription. But that research is slow and provides opportunities for a very limited number of people to participate due to the tight inclusion and exclusion criteria. Those tight criteria limit how we can generalize their results to all people with Parkinson’s in the future. We know that exercise is an important part of a comprehensive treatment plan for people with Parkinson’s. Physical therapy, along with my rehabilitation colleagues in occupational therapy and speech language pathology are a part of an existing healthcare structure that can provide evidence-based exercise support for people with Parkinson’s. I am excited to work in the field of implementation research for Parkinson’s rehabilitation because we can use what is known about changing behaviors of individuals (e.g., physical therapists, physicians, people with Parkinson’s), communities (sociology), health systems (organizational change), and existing technologies to facilitate exercise participation and supportive communities in our patients and research participants. “
The Study
This is why I came to Shirley Ryan Ability Lab:
In recent years, technology has given us easy ways to track our exercise using a smart phone and a tracking device such as an Apple watch. Dr. Rafferty and her team are using that technology to determine the benefits of exercise not just for the newly diagnosed, but for everyone with Parkinson’s or Multiple Sclerosis.
This study is tracking long term exercise with remote monitoring and is open to anyone with PD, in any stage as long as they can walk without an assistive device. It doesn’t matter if you were diagnosed yesterday or 20 years ago. You need to have a smart phone and a physical activity tracker, which they provide if you do not have an Apple watch or similar tracker. Communication can be done by video, so you don’t have to live in or travel to Chicago.
I am planning to sign up for this and I suggest that everyone of you reading this who meets the criteria, should participate in the study.
The more of us who participate will make a difference for all of us.
The Survey Says……
Have you had Parkinson’s for more than 10 years? If so, please contact me about a survey for people living well with PD long term. Twitchy Woman is working on a project for the blog about people who are living well with PD for over 10 years. If you are interested in filling out a short questionnaire, please email me at twitchywoman18@gmail.com
Have a great week
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