PERSONAL RESPONSES TO SURVEY BY RESPONDENTS:
Primary Question: What have you gained from learning from Persons with Parkinson’s?
Andy Hendrickson: former graduate student helper from one of earliest LIU PD-Exercise program:
"I feel so blessed that I was given the opportunity to work with and learn from such amazing people and to get a glimpse into what it is like to live with Parkinson's disease. "
We are currently living in Cheyenne Wyoming where I manage the Cheyenne Regional Fitness Center. Our facility is a commercial gym for the community, a corporate fitness center for hospital employees and a medical fitness center. I was told after I being hired that one of the things that stood out to the hiring committees was how passionately I spoke about my experience at LIU with the Brooklyn Parkinson's group."
David Spierer, Exercise Physiology Professor at LIU, Brooklyn, NY:
Re: visits by PWP's (Persons with Parkinson’s) to my Exercise Physiology graduate classes:
Teaching theory only gets students so far. However, students taught from the perspective of the clinical patient will more readily acquire the clinical "pearls of wisdom" they so eagerly seek. Over the past 2 years, a teaching session to my curriculum including a presentation and personal discussion with a group of patients with Parkinsons; this allowed my students to see the application of what they were currently learning by putting a human face on a disease that is otherwise abstract. This experience engaged them in ways which will only benefit them when they become clinicians.
As a bonus, several of my students are seriously thinking about working with specific clinical populations instead of with athletic populations or just the general public.
From Yasser Salem, PT, PhD, NCS, PCS; Associate Professor
Physical Therapy; University of North Texas Health Science Center
From two of my former LIU students who attended class with PWP speakers visiting:
:
- I have greater understanding of the disease.
- I learned a lot about the disease and it was really interesting. It gave me a whole new perspective on PT and our roles in this disease.
“PwP’s are the best resource of info for us/HP on symptoms and treatment. They are the vital team members within Multidisciplinary team.”
“Learning to look more in depth at the whole person.”
“As a PWP on the stage with Neurologists about clinical trials, my MDS talked about a clinical trial, and then I added details about that same trial from the patient's perspective. People came u p to and thanked me.”
“I've learned so much from my participants. One of the main reasons, I feel we started the Fitness For PD was to blend a sense of security, comfort & camaraderie along with being on machines, doing corrective exercises, working on balance or performing dynamic movement during the cardio portion of the workout. I so enjoy socializing aspect! “
“I have learned to recognize the limitations people with Parkinson's face in their everyday lives. I also learned how a group setting can encourage and motivate individuals to strive to be well.”
“Training for Dance for Parkinson's Disease focuses on the disability and how to help the PWP forget that and enjoy the dance. Contact with PWP was impressive because of the extraordinary strength of character participants exhibit - courage, creativity and great good will in general.”
“More understanding of the personal, day-to-day feelings associated with the disease and how that impacts on social interactions small and large.”
“…Mainly how tricky the medication can be. Patients refer to them as "on or off" days.”
“…Sense of body image; sense of human capacity and limitation; sense of humor in the face of a very serious illness.”
“I was most affected by their gratitude for the opportunity to dance.”
“I learned that PD can present with a wide range of symptoms, not just the tremors and freezing that most people are aware of. I also learned that exercise in this population is for the brain as well as the muscles.”
“Wish I had known more years ago, while my Dad was still alive. It was learning that he had PD (after he died!) that moved me to learn more & participate in Dance for PD trainings.”
“Although I do not live with a PWP, to know the basic tasks that become a struggle, I cannot help but to feel compassion.”
If you work or study in the health-care or education world and engage with people with Parkinson's, do you wish your professor or trainer had educated you about this short-hand PD language, re. "On's" and "Off's"?
“Work in field, know ons, and offs very well”
“I did learn about the lingo while in training with Dance for PD.”
“We all have to have knowledge of the common PD language, speak the same language and reinforce the strategies through all our roles, across all of our roles to become trans-disciplinary teams - therefore we and PwP could benefit from this specialty amongst HPs.”
“I speak to university students in training to be Physical therapists, exercise physiologists, nurses, doctors - and I go over these terms with them.”
“We learned from others with Parkinson's about putting a foot in front of the person with PD to jump start them into walking forward. We would love to be educated with more of these helpful things to do.”
“It is important for neurologist and also PWP to educate their Health Professionals what to see, how to see and how to ask questions and what to ask PWP”
If you are in the health care field, or an educator, did learning about the diminishing executive functions (short-term memory, concentration, task completion, etc) of many PWP'S prove useful in your subsequent relationship with, or work with this population?
“It helps me design classes and dance sequences that will work for, and be useful to, my participants with Parkinson's.”
“Knowing this plays an integral part in assessing, setting up a rehabilitation program and interventions; assisting young PwP to maintain the jobs, find hobbies and maintain any other roles in their life. Assist the family members to better understand PwP and maintain the family, relationship.”
“Being more educated about it enables me to be more understanding and empathetic.”
“Learning the symptoms and effects as well as terminology helps me to formulate and conduct the class to their needs and abilities.”
“I was overly helpful at times, for instance in helping a PWP find something that was missing. She let me know that she didn't need help, she just needed more time to go through her belongings. The "help" was a distraction.”
“I saw how executive functions Impact all social and interpersonal behaviors, and limits self-care.”
“I was used to training athletes where everything is quick explosive movements. One of the greatest things that has become useful by training people with Parkinson's is patience.”
“As a dance teacher, I had to find different ways to choreograph and "chunk up" movement for my students.”
If you have Parkinson's yourself, once you learned about these specific "Executive Function" cognitive changes, did it give you the desire to address these issues proactively in your own life?
“It gave me a reason for some of my behavior.”
If your significant other or family member is a PWP, did learning about the particulars of executive function challenges for her/him from a PWP make you feel more compassion towards your PWP?
“It helped me to be less frustrated and to recognize that these things were not being done intentionally.”
“I always feel compassion for my PWP, and also insist on getting it back for myself as care partner. That relationship is very important.”
“More understanding, more empathy and patience as well as shared coping skills.”
“Wish I had known more years ago, while my Dad was still alive. It was learning that he had PD (after he died!) that moved me to learn more & participate in Dance for PD trainings.”
“Although I do not live with a PWP, just hearing some of the people talk about the shape they were in before Parkinson's, and knowing the basic tasks that become a struggle, I cannot help but to feel compassion.”
“The (non PWP) professional social worker was a downer. She spoke of the progression of the disease as inevitable. My husband stood up and berated her. Then (the PWP) spoke of many cues she uses to help the problem of distraction. This was great!”
If training as a health-care professional or educator, did you change your actual specialization in your work after this experience?
If yes, what specialty did you choose?
“I gained better understanding of PwP needs, beliefs, and dreams. I realized how much Health Professionals do not know what they do not know. Treating PwP is a unique approach which is completely different to a generic neurological approach as majority of HPs use.”
“I wanted to mainly train athletes, but after working with the Brooklyn Parkinson's group, I now want to focus on training special populations.”
“Teaching and directing a movement class based on the Dance for PD model.”
“I had worked as a creative director at a healthcare company, but after the training and work with PWPs, I felt I wanted to spend my time working with those who lived the condition - rather than making websites or brochures about them.”
OF THOSE WHO ATTENDED ANY SORT OF PRESENTATION GIVEN BY PERSONS WITH PARKINSON’S, SUCH AS A LECTURE, PROFESSIONAL TRAINING CLASS, OR Q&A SESSION WHERE PEOPLE WITH PD VISITED TO DISCUSS LIVING WITH PARKINSON'S, WHEN ASKED ANONYMOUSLY,
“DID YOU FIND THE INFORMATION PRESENTED TO BE USEFUL TO YOU?”
83% RESPONDED WITH A RESOUNDING, “YES.”
ADDITIONAL SURVEY QUESTIONS
Were you ever given reading materials written by people with Parkinson's at events you attended?
“This material contains the most real facts that help us HP to understand the PD”
Would you recommend that training institutions working with this PWP'S incorporate these types of Q&A sessions into their training process?
“I'm surprised at how little most people know about Parkinson's. They seem intimidated by the idea of working with people with Parkinson's, which is not helpful, necessary, or realistic.”
“I think a good presentation should cover many bases, but these do not stand out as requiring special attention.”
“Problem of education of physicians goes way beyond this particular issue. How to educate family physicians who see the bulk of persons with PD—who are not connected to training institutions is the big issue to tackle together with neurologists in private practice who see many persons with PD—and also have no access to institutional training.”
“Yes. We do include this in our training that we provide and the feedback is great.”
“Yes. Hell yes.”
“Sure - the more informed we are, the better things will be.”
“There is nothing like learning from the source!”
“While a lot of information can be received through text books and research, it is extremely helpful to get first-hand knowledge from people living with PD or working with this population.”
“Although it is impossible to know how it feels to have PD, I have gotten my best understanding from PWP. For example, one person told me they feel like they are on a roller coaster trying to eat when they have dyskinesias.”
If you have the time, please use the space below to share any other personal thoughts re. the unique value you experienced as a result of learning from PWP'S, which may help enhance the poster presentation for its viewers.
“PWPs should be incorporated into ALL types of training for any professional who might care for us -- including professors who teach such students!”
“Learning about the executive function deficiency and the cognitive problems has come just when I'm experiencing these things and it is so so helpful to know about it!”
“By joining the Brooklyn Parkinson's Group I have benefitted from the community in a myriad of ways. My understanding of PD was enhanced my need for denial diminished and my self esteem and compassion increased. I now help others to come to grips with having PD whereas in my early post diagnosis I wanted to hide. I am grateful”.
“I have been a guest speaker at my Speech Pathologist's graduate program at Hunter College. Students in the health profession benefit from hearing directly from people with parkinson's disease.”
“Significance of social support, empowerment, resilience, hope, and continuing movement in maintaining reasonable physical/cognitive functions and quality of life living with PD.”
“Please encourage people to do physical exercise to counteract Executive Function. Many people see exercise as a way of keeping trim but they don't know how it affects brain function. My PWP (husband) is an intellectual and needs incentives. Thanks so much for your work on this.”
“Inspiration”
“Life Learning experience empowers us/HP and our PwP to live normal life with PD.”
“I was 11-yrs. old when my Mom was diagnosed with PD and then I married a man who was also diagnosed. So it's been part of my life for as long as I can remember. I've learned a lot over the years, but mostly that it takes a strong relationship of communication and compassion going in both directions if a couple is to manage this disease successfully.”
“I've learned from PWP every day for the last 3 decades. Inspiring.”
“PD is so varied in its progression, and its symptoms that it is very difficult to generalize about cognitive decline.”
“Whenever there is a meeting of any kind, and employees of national PD orgs are there to "represent people with Parkinson's" there should ALWAYS be a person with PD (PWP) at their side to make sure the true "patient voice" is heard. A PD patient advocate is a PWP who advocates. A staff member of NPF or APDA or PDF who sits on a committee about PD or clinical trials or whatever IS NOT a patient advocate. And again, when selected for committees members of orgs should have a PWP by their side. It is only in this way that the true "patient voice" will be heard.”
.
“I attended an annual scientific meeting a few months ago. And as I watched some scientific presentations about this clinical trial, I began to speak out. They mentioned a machine used to measure objectively Parkinson's movement - I spoke up and said I'd been in the clinical trial for that equipment at the NIH. When a new "arm" for the study was mentioned - I told the group that I was a member of that population, and again gave my personal experience. Later several scientists came up to me to thank me for sharing that information.”
“I am truly blessed to be able to work in a unique environment that allows PWP's to workout in a safe and supervised manner with fitness professionals. It's more than a great workout. It helps mentally and emotionally. If we could somehow clone this program, that would be A dream come true!”
“When a PWP addresses a group the feeling is that the presenter has insights that the professional does not have.”
“Because Parkinson's expresses itself so differently and with such a wide range of symptoms and rates of progression, it is absolutely necessary for students in any medical field who will have contact with PWPs to be exposed to the various expressions of the condition, There is no "classic" case, no singular description that you can adequately absorb from a book. This variability makes exposure to numerous patients necessary to understand the disease in its many forms.”
“The greater the contact with the same PWP's in group meetings creates a closeness, acceptance and support that instructs people without Parkinson's on how better to give and receive. I think the great benefit of this social support must be always included in any assessment. There is a different dynamic in groups that meet weekly only for a class and have little contact otherwise. Additional involvement with the same people creates a closer connection and I think has a greater therapeutic effect.”
“Hearing from, and meeting with PWP helps put a human face on PWP and the issues they face. Humanizing PD helps caregivers (and Dance for PD teachers and other movement professionals) remember we are all people, some of us just have different needs. The more we understand, the more positive our interactions can be. This spills over into all my interactions, for instance, I also lead sessions for a group of people who have varying dementias. The more I understand, the better our joint experience.”
“Reminds the audience how vibrant and insightful PWP are about their disease, and reminds us all to enjoy life!”
“I believe students going into any exercise field of rehabilitation should know more about programs like the Brooklyn Parkinson's group. The program flies under the radar and it takes place on a University campus with an excellent Exercise Science program. If the students knew about it and could work with the program more it would not only benefit the students tremendously but also the Parkinson's community.”
“This population is the most pro-active group of people that I have ever had the privilege of knowing. They show all of the most noble qualities of the human spirit: determination, curiosity, humor and kindness.”
“I was excited about the teacher training for Dance for PD, but I didn't fully understand how important the class was until the Q&A after the demo class with DWPs (dancers with Parkinsons!). Hearing their thoughtful, articulate comments and suggestions reminded me how important it is to treat PWPs as the intelligent, independent people they are.”
“I came to this new work over the age of 60, when I thought I was settled in my career and my life. Through a series of events, I had to make very big changes in order to take on what I'm doing now. But they are nowhere near as large as what a PWP (or a person with Alzheimers, whom I also teach), is going through daily. I think I am both happier about the aging process because I have "beginner's mind" about what I do each day and also more empathic and emotionally involved in my career because of these novel experiences and learning so much from the PWPs I work with in my classes. I am also less afraid of disease and disability and better able to see the humanity in every situation.”
“Myriad of symptoms under the "umbrella" of PD.”
“I appreciated hearing the individual stories about being diagnosed with PD, handling the symptoms as they presented, and having to give up certain activities. There's an emotional aspect involved with PD, as with any other chronic illness, that cannot be taught or truly explained in a book or class lecture.”
“One should not confuse the body movements and other symptoms of PWP with being sharp intelligent, creative, and capable people.”
“Our experience (PLWPs) is varied, and not easily summarized. The more we are heard from DIRECTLY, and LISTENED TO the more effectively can we be helped.”
Respondents to Survey Included Those In…:
“research…”
“Supervisory capacity during group activity sessions to ensure safety of all”
“…as part of a non profit organization”
“Manager of Multidisciplinary team specialised in PD, researcher, clinician with my own caseload as important part of my role and lecturer”
“Volunteer”
“Nonprofit work”
“Physical Therapist”
“I am a Certified Personal Trainer working with BPG as their fitness trainer.”
“strength and wellness coach”
“I am a movement/dance teacher for PWPs”
“I am a volunteer for the Dance for Parkinson's Disease group.”
“I help weight train people with Parkinson's”
“Dance for PD”
“Dance for PD teacher”
“Teach Dance for PD”
MEMBERS OF A LONG ISLAND UNIVERSITY PD EXERCISE CLASS
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