Design vs. Delivery: One Size Does Not Fit All Parkinson’s Patients
It's important how techniques and treatments are implemented in care
The most success I had helping those with brain injuries was when I had regular access to both the design and delivery of therapy. Inside a rehab center, there’s good access to both these elements. This would often change when the patient was sent home. My success in designing rehab would often sink like a stone when my clinical staff’s constant reinforcement was removed.
The degree to which clinical staff can assist and reinforce treatment can vary. Inpatient services generally provide intensive rehabilitation, usually by multiple disciplines. Services at nursing homes strive for less intense levels and for less than three hours a day. Outpatient rehabilitation is still based in a clinic or hospital setting, but the patient returns home the same day. Typically, a therapy session lasts from 30 minutes to an hour. Home health therapy is provided in the patient’s home for up to an hour per visit, up to three times per week.
My forthcoming book, “Possibilities with Parkinson’s: Developing a Self-Management Toolkit” describes the design of my Parkinson’s outpatient rehabilitation program. I have the advantage of designing this program for myself within a personally tailored home sanctuary, compliant with the Americans with Disabilities Act. I have a support partner who understands the medical issues around Parkinson’s and the comorbidities that my aging self is now starting to show.
My focus has been on retraining my brain processes to work around the disruptions caused by Parkinson’s.
Experience reminds me that the design cannot be used by others in the same way that I use the toolkit. Parkinson’s patients have different brains, different pre-Parkinson’s experiences, and live in different environments. What I’ve attempted to do is separate the design elements (outlined in the book) from their delivery.
“The experience of living with Parkinson’s over the course of a lifetime is unique to each person. As symptoms and progression vary from person to person, neither you nor your doctor can predict which symptoms you will get, when you will get them or how severe they will be. Even though broad paths of similarity are observed among individuals with PD as the disease progresses, there is no guarantee you will experience what you see in others.”
The American Parkinson Disease Association recognizes that attempts to measure and predict progression of Parkinson’s are still inadequate. The Hoehn and Yahr scale, for instance, focuses solely on the progression of motor symptoms. It doesn’t consider the psychiatric, cognitive, and autonomic nonmotor symptoms. Unfortunately, measured tests that could quantify the nonmotor symptoms haven’t been developed.
In my case, I’ve identified useful strategies to cope with issues caused by Parkinson’s disease. I call this approach TBM: threshold management, brain rewiring, and mindful movement. I must apply these strategies daily, even hourly, to see positive results, thus the need for self-management.
Threshold management tells me to be careful of crossing over the loss-of-control boundary, but says little about how to do that every day. The same is true for brain rewiring and mindful movement. Design is different from delivery.
I’ve written a little about several key delivery elements:
- Resilience and learning how to use failure to show up every day.
- Time management to conserve energy and keep the well of resources full.
- Holding proper intention so that our energy is aimed in the right direction.
- Patience to wait and allow my efforts to succeed.
My worldview is described in last week’s column, but it’s taken me a while to fit its use into my everyday life. I check in with myself to stay on track.
Because my Parkinson’s self-management toolkit aims to train higher cortical functions to compensate for the damage done to my midbrain structure, the need for reducing the triggers cannot be understated. Being extremely attentive to how the self-management program is delivered means being attentive to all the little triggers throughout the day. The toolkit must be used in such a way that it reduces their occurrences, both internal and external.
When I work on these and diligently apply the toolkit, I see the gradual result of more good days. And a happier Mrs. Dr. C, who is grateful for the progress.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.