Bingham Farms, Michigan
Michigan Parkinson Foundation's mission is to educate and provide support to people with Parkinson's disease (PD) and related disorders, their loved ones and care partners, and the physicians and other allied health professionals who diagnose and treat those affected by the illness. The average age of onset of Parkinson's is 58, however, the incidence increases with age. People can live with PD for a long time, and Michigan Parkinson Foundation's programs help people maintain their quality of life as the disease progresses. Our programs and services include: Financial assistance for in-home Respite Care, Financial assistance for Parkinson medications, Daily Parkinson Exercise Classes via Zoom (Monday through Saturday) led by physical therapists, Information about the symptoms of PD, diagnosis and treatments (provided at no charge); Parkinson Caregiver Training Module (to be released Spring 2021) and provided at no charge, Education Programs provided throughout all of Michigan such as Orientation to Parkinson's (for newly diagnosed - provided at no charge), Living with Parkinson's (a series of workshops addressing the care, treatment, and management of PD - provided at no charge); Annual Symposium (all day event with a series of workshops on how to maintain quality of life with PD), PD Self Efficacy Program (a nine month programs for those diagnosed less than 3 years that provides an in depth understanding about PD and self-efficacy tools to manage it with confidence,
Parkinson's disease and its Impact
Parkinson's disease is a neurodegenerative progressive disease that has no known cure. It is the second most common neurodegenerative disorder.
Currently there are one million people in the United States who have Parkinson's disease and the incidence is growing. The average age of onset is 58. If an otherwise healthy individual with no other chronic disease is diagnosed with PD at the age of 58, the life expectancy for a male is 80 and a female is 84.Two thirds of those diagnosed are male; often requiring the spouse to be a caretaker in late stage Parkinson's disease. Typically, this coincides with the time period when the spouse is battling their own health care issues related to aging.
The Michigan Parkinson Foundation provides the following program and services for people with Parkinson disease and their families.
Financial assistance for Respite Care Services: Families become round-the-clock caregivers for those with Parkinson's. MPF helps by providing financial assistance for in home respite care, short term over night care at a facility or day time Adult Day Care service. In 2020 MPF experienced a 300% increase in requests for financial assistance for respite care, which is now available throughout ALL of Michigan. The need is great and shows no signs of decreasing in 2021. Our fundraising initiatives provide some of the financial support needed for this program, but additional funds are needed. The goal is to say YES to all who need respite care.
Medication Assistance: Medications taken by people with Parkinson's cost between $1,000 and $20,000 out of pocket each year! For many who cannot afford this expense, it is a choice of food or treatment. In response, MPF helps pay for prescription medications for qualifying individuals with Parkinson's disease. We provide up to $600 per year per person.
Information and Referral: For patients and families alike, a diagnosis of Parkinson's often results in fear, misinformation and lots of questions. MPF is there with needed help. We provide a toll free help line (800-852-9781), a website, a newsletter, educational brochures, a library of books and videos, and referrals to neurologists and other community resources.
Information on the symptoms, diagnosis and treatment of Parkinson's disease (PD)
Schedule of PD patient education programs throughout the state
Calendar of events
List of PD exercise and dance programs listed by region
76 support groups listed by county
Articles about various aspects of Parkinson's written by experts in Movement Disorders
List of PD Medications, indications and side effects
Neurology Referral List
Electronic version of the Messenger Newsletter
Parkinson Caregiving Training Module (to be released Spring 2021) offered at no charge to those caring for people with Parkinson's.
Orientation to Parkinson's a two hour program for the newly diagnosed. This program is delivered by health care professionals throughout the state.
Living with Parkinson's, a series of six workshops addressing the care, treatment and management of Parkinson's disease. Topics include, An Overview of PD, Medications, Non-Motor Symptoms, the Role of Physical and Occupational Therapy, Mental Health Issues, Captain of Your Own Ship, and Speech & Swallowing Issues. This program is offered free of charge and is delivered by health care professionals. 2020 events dates to be announced.
PD Self Efficacy: A program for the newly diagnosed (under three years) that meets once a month for four hours for nine months. The program provides people with Parkinson's with an in-depth understanding of the disease and the self-efficacy tools to manage it with confidence. The program is taught by an occupational therapist and an individual who has lived PPD for 8 years.
Care Partner Forums- Programs delivered for the spouse, family member or care partner that is caring for the person with Parkinson's disease. The goal of the program is to connect care givers with community resources; provide social interaction with others in similar situations; and a day of respite from day to day responsibilities. Most important is the realization that they are not alone caps the benefits caregivers receive by attending the MPF's Caregiver programs.
Professional Education Symposiums. Due to the COVID-19 virus, the 2021 program will be a VIRTUAL. Date TBD.
MPF YouTube Channel: Educational programs, symposiums and forums on Parkinson's are videotaped and posted to our own YouTube channel.
Legal Assistance: Attorneys on our volunteer board provide assistance and direction on various legal issues that people with Parkinson's encounter such as remaining in the work force, obtaining medical disability, estate and trust planning, long term medical guardianship, and power of attorney.
Research Grants: MPF awards an annual grant to a scientist in Michigan in April of 2017 we awarded the Bauer Research Grant Award to Kathy Steece-Collier, PhD, Professor of Dept. of Translational Science & Molecular Medicine at Michigan State University Research Goal: Examining the structural reorganization of nerve cells and their circuits in pre-clinical models of PD associated with drug- and graft-induced side-effects and/or efficacy failure.
Support Groups: MPF sponsors 76 Parkinson's support groups throughout Michigan. These groups provide individuals with Parkinson's disease, their families and friends a network of information, fellowship and understanding. The MPF provides financial assistance for each group; advertises the group's meetings and maintains and updated list of current support group calendar of events on the website. A hard copy list of all support groups is included in each patient information packet.
Facilitator Training: Each year, MPF holds a two-day training event at which Facilitators (support group leaders) are invited to come together for training and updates on Parkinson's disease. MPF provides training, lodging and meals for up to four representatives from each support group. This program is offered free of charge by invitation only.
• There are 76 support groups affiliated with the MPF throughout Michigan. Research shows that people with Parkinson's who actively participate in support groups and other
patient advocacy programs have a better outlook, experience less depression and are 40% less likely to experience apathy as compared to those that do not participate.
Here are some comments form people who attend MPF support groups.
From Vasudevan Srinivasan regarding the support group on 4/3/18
Dear Mary Sue,
I write this to let you know that I appreciated the chance to participate in today's conference call. Thank you and your team members for the dedication, patience and encouragement you brought to the occasion, to get the rest of us to do well in our efforts to enjoy normal life, despite the severe influences imposed by the disease on the afflicted patients.
Today I did take a quantum leap forward in understanding the pros and cons of getting a DBS done. My pseudo fears and anxieties related to undergoing this procedure have been totally vanquished. I will gladly volunteer to have this procedure done on me without any qualms on my part, if and when the next opportunity presents itself. I feel that I can muster a good presentation of the facts that are available and convince my wife that I have given serious attention to this feature as presented herein. Going ahead with this choice and having the procedure done within a Michigan site should give us a win-win result.
I look forward to getting your support in carrying forward this attempt to rescue myself from my current tenuous situation.
Best wishes to all my compatriots and my best regards to the mentors like you who help us find our solutions towards a better life style... Vasudevan Srinivasan.
From Tom Simpson regarding the support group on 4/3/18
Is your Virtual Support Group open to anyone with PD? I myself might like to join in if possible - there was some good experiences and info there tonight!
This was my first call with the group and I found it helpful. I have recently moved from North Carolina where I was part of a terrific community of doctors and patients, to a rural area in northern Michigan, where the resources are more scarce. I found your facilitation very warm and also professional. Many thanks for offering this virtual support group.
From Steve Femminineo
"Nobody chooses to have this disease, but we can and must choose to do all we can to minimize its effects," said Steve Femminineo, who was diagnosed with Parkinson's disease (PD) at age 48. I can say without question that the MPF has made a world of difference for both me and my wife Rose."
From: Rosie Huby, a recipient of medication assistance, says, "The Michigan Parkinson Foundation is a godsend.Without it, I would not be able to afford the medication."
From Nancy Maxwell a recipient of financial assistance for respite care
• Respite Care financial support is available for family members who often need a break and cannot leave their loved one with Parkinson's unattended. "Thank you for the funding and the support you give to others!"
• Educational programs developed by the MPF are designed to teach people how to manage PD symptoms with the goal of improving their day-to-day quality of life. These programs are presented throughout the state and are offered to patients and their families free of charge. • After attending the 2016 MPF Symposium for medical professionals and patients, a
healthcare provider commented, "The care of people with Parkinson's is far more complex than I originally thought; I will be more mindful in providing care."
Meanwhile, a patient participant commented, "I feel inspired and not alone, thanks for making this opportunity available."
To educate and provide direct patient services and support to people with Parkinson's and related disorders, their loved ones and care partners, and the physicians and other allied health professionals who diagnose and treat those affected by the illness.
Every person with Parkinson's and related disorders shall receive responsive compassionate quality care and support.