Our weekly LOUD Crowd group of 14 people is as diverse a group of people you could have.
Although all have a medical diagnosis of Parkinson’s disease or a related diagnosis such as PSP, no two people look alike, sound alike, have the same motor or non-motor symptoms, or respond to medications the same way. No two people in our group have had the same life experiences, careers, family dynamics, wins or losses in life. And so, will be their experience with Parkinson’s.
Professionals working with individuals with a PD diagnosis must be mindful of the differences in their patients, who will all bring different symptoms, concerns, questions, and expectations to encounters. Professionals must also be mindful of their own differences and biases that may impact their treatment approaches.
“Variability is the law of life, and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease.” – Sir William Osler
For several years now in health care, there has been a movement towards patient centered or person-centered care. Person-centered care embodies respect for client autonomy and choice, values the individual needs of each person, promotes a therapeutic alliance between health care provider and client to meet those needs, and encourages a holistic view of the client in terms of caring for physical and emotional needs.
In the case of individuals living with a Parkinson’s diagnosis, it means considering the impact of motor and non-motor symptoms, the fluctuating nature of the disease and the impact it may have on a spouse or other primary carepartner.
Person-centered care requires a realignment of the relationships between health care professionals and their clients through shared decision making in which health care providers work collaboratively with clients and families. So, for example speech and physical therapists need to assess whether the treatment plan being offered matches the patient’s expectations, goals, and capacity for improvement
Value in health care is the new buzz word from payers, but it goes beyond financial considerations. Value also means that the experience and outcomes of health care services bring about meaningful change in clients’ lives such that they see the worth in having pursued that care.[i]
[i] Achieving Participation-Focused Intervention Through Shared Decision Making: Proposal of an Age and Disorder-Generic Framework Carolyn Baylor and Meghan Darling-White. American Journal of Speech-Language Pathology. https://doi.org/10.1044/2020_AJSLP-19-00043
One Piece of Advice
When I asked members of the Charlotte County LOUD Crowd for one piece of advice they would give someone newly diagnosed with Parkinson’s disease, below are their responses:
“you have Parkinson’s, it doesn’t have you”
“exercise every day”
“join a support group”
“assemble a team of professionals”
“live each day”
“don’t sweat the small stuff”
“be positive and live through PD one day at a time ”
and, from one of our members who has lived with Parkinson’s for over 25 years:
Check out the new Voice Aerobics Travel pack. Over 60 minutes of FUN speech and voice practice you can do on your own at home, or anywhere you go!
My MissionTo enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice
Hello, John, and thank you for your feedback. While everyone is different in how they ultimately manage their symptoms, your observation about automatic v/s purposeful movements is one we can capitalize on, and can be applied to gross motor movements or speech, however, that sort of focus may be difficult for some people and in some circumstances where the competing demand for cognitive attention is too great.
The biggest lesson I have learned is that Pd damages a certain part of the brain which controls movements we make without thinking about how we are doing them. Ie. Walking, Bringing food to our mouths, writing, and many other regular movements.
I have learned how to take conscious control of all the above and many more, and have lived with Pd symptoms since 1963. I was diagnosed with Pd in 1992 and have been medication-free since 2002.
Shouting, unlike talking, is a conscious activity, so, it does not cause us any problems. We can do everything that we have always done without having to think what we are doing, just by learning to control those movements consciously,
Norm, thank you for that great comment, and I will defintely take alook at the link you suggested. Whenever I have been at a conference with 500 people or more, and half in the room have a diagnosis of Parkinson’s, I can’t help but wonder what a group of heterogeneous people have in common besides the PD diagnosis.Adding to the complexity of symptom management are the treatments that in themselves cause new symptoms such as dyskinesia or speech disturbance post DBS.
Thanks, Mary for your email. I just reviewed an excellent book Brain Fables: The Hidden History of Neurodegenerative Diseases and a Blueprint to Conquer Them. Among the primary questions that the authors revisit throughout the work, are we focusing on the study of PD in the appropriate way? Are we asking the right questions? Their argument is that instead of treating PD as one disorder, we should recognize it as a collection of ailments. As explained: “despite all that we have learned of its complexity, and the array of neurochemicals and brain regions and cell types involved, we continue to put forward therapies that target single pathways in groups of patients, acting as if all that heterogeneity is applicable in one way or another to just about everyone.” Why are we not targeting defined subgroups of those diagnosed with PD?
Here is a link to the entire review: https://waa.ai/uuCP