What My Sister and I Looked for in a Top Parkinson’s Center
How do I know that my family members are receiving the best care for their Parkinson’s disease (PD)? What criteria should I consider when choosing a disease management strategy?
Given my nursing background, I asked myself these questions when my sister, Bev, was diagnosed with PD in 2017. Fortunately, Bev, who was also a nurse, lived near Cleveland, Ohio, and I had grown up in that same suburb.
We were aware of the two medical center giants in Cleveland healthcare: the Cleveland Clinic and the University Hospitals Cleveland Medical Center. Before my move to sunny Arizona, I worked at both organizations’ cancer centers as the director of cancer communications and community outreach.
Gratefully, Bev was referred by her excellent primary care physician to the Cleveland Clinic’s Center for Neurological Restoration, which is dedicated to the medical and surgical management of movement disorders, including essential tremor, PD, and other neurological disorders. It is also designated as a Parkinson’s Foundation Center of Excellence.
This designation means that the medical center has a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals, and others who are current on the latest PD medications, treatments, and research to provide the best possible care for individuals with PD.
Bev and I both knew that her diagnosis would require a team of skilled healthcare professionals working with Bev and her caregivers. We wanted to make sure that the team specialized in PD and other movement disorders versus general therapies for all diseases.
The Johns Hopkins Parkinson’s Disease and Movement Disorders Center recommends that a person’s PD healthcare team include a neurologist, occupational therapist, physical therapist, speech therapist, mental health provider, case manager/social worker, and others who will play a role when needed. Bev’s team at the Cleveland Clinic included all of these healthcare professionals.
Although Bev, her daughter, and I met with the PD team at the Cleveland Clinic, her “main man,” as she still calls him, is her neurologist, who seems to coordinate any and every kind of care she has needed since her diagnosis.
Bev, who now has stage 3 PD, continues to see her neurologist at the Cleveland Clinic, and adds other healthcare team members as needed. She has a physical therapist to improve her balance, gait, and strength, a speech therapist for some swallowing issues that have started over the past year, and an ophthalmologist to evaluate her vision and treat her dry eyes due to infrequent blinking. She is also on a low-dose antidepressant.
After dealing with Bev’s PD over the past four years, she and I can offer the following tips on what to look for in a top medical center:
- Make sure your team is available, capable, and open to questions from both patient and caregiver.
- Online chart information allows caregivers to view test results and check on doctors’ appointments. As a caregiver, it is helpful to know appointment times and dates, not only for transportation needs, but also to remind the patient. I have access to Bev’s online information (with her permission) from the Cleveland Clinic through MyChart. This keeps both of us up to date on her current PD status.
- It is critical for healthcare team members to provide understandable information, be compassionate, and demonstrate great listening skills.
Whether you’re an individual with Parkinson’s or a caregiver, we are in this together managing a progressive and sometimes challenging chronic disease. Don’t accept second best. Look for a top PD center. Stay informed. We’ve got this!
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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.
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Comments
mihai
good luck!
Unfortunately, in Romania we do not even have neurologists specialized in this disease, nor does it fit any chance at specialized therapy centers.
there is no correct research and diagnostic program
everything is based on the patient's visual symptoms
if anyone knows a top center in europe
Regina
Hi Mihai. May I suggest that you come to USA and see if you are a DBS candidate. Perhaps through a grant or sponsored program through the Michael J Fox Foundation. Also, call the office of Michael G. Kaplitt, MD, PhD for a Zoom video visit first.
emily G profeta
I have parkinsons since Dec 22 2020 when I was called with test results of EEG test... I am too a nurse have no tremors just unbalance walking .. . my blood pressure goes up and down for no reason...... trouble swallowing liquids.... eye vision changes daily I wear glasses... before parkisons I was always constipated on medicine linzess, but now more constipated. I. Wear a hearing aid ,, also have Neuropathy of my right foot ..I have COPD.. take Breo.. Hiatal hernia. And dropped left foot..... had cataract surgery on both eyes last year and I do not get relief from sinemet.. I need help cause I can not clean my house and have trouble going up my 2 story house
Chuck Easton
Diagnosed in 2017 and have been trying to identify the various changes in behavior and physical changes. What to attribute PD and what is part of Old age. Turned 79 in May of this year.
Was told that I would probably die of old age instead of PD.
kathy provorse
Unfortunately,we live in a small area in Dolgeville NY. We do not have a so called team here to provide good care for my husband with Parkinsons.
we tried to get an appointment in Michigan with the Mayo Clinic,but were not given the opportunity for an appointment. If we could only get better care,I do believe my husband would have a better life and quality of care. Thank you
Jo Gambosi
Kathy, I am not sure of the distance for you but you could check out the Robert & John Bendheim Parkinson & Movement Disorders Center at Mt. Sinai in New York, 212-241-5607 OR the Marlene and Paolo Fresco Institute for PD. At NYU Langone Medical Center 212-263-4838. Hope this helps.
may a
I believe the Unviversity of Rochester in NY is a center of excellence, and also has a well-regarded telemedicine program for PD along with it.
Beverly Davis
Live in Phila and wonder where is a good Pd center to go to, Also what research for Pd .. …?….is why is the therycycle bike so expensive and can help Pd .?.Is there any group that fundsPd patient a. ? Why not? Do you know about the following info on hidrox , mannitol, berberine,and TUDCA, Look up pub med research
Richard Odessey
Has anyone looked into the practice of Mindfulness for PD. Jon Kabat Zinn has written a book about it which I highly recommend. There is quite a bit of evidence that the practice of mindfulness can improve symptoms.
Richard
Marlo Kimmel
My husband is with the VA and they have one neurologist on staff in Dallas. We saw a neurologist thru Medicare and he did nothing except offered to put him on three drugs. He doesn’t like to take anything if he doesn’t have to. He’s 72 does not have high blood pressure and takes no medication other than for thyroid and his Parkinson’s.med. He was given some PT therapy by the VAfor a while and then that ended and not restarted even though he asked for it again. He’s had his eyes checked, had cataract surgery and gets something for dryness from VA. There is no one really helping him with the Parkinson’s at the VA here in Dallas. Unless you reach out on a consistent basis once you get seen there’s no follow up or anything you are on your own. He’s even limited to see his primary at the VA to every 6 months He was able to get a walker to help his balance from them. I don’t know where to go here in Dallas to help him we do have Medicare if anybody knows someplace here in Dallas that he could go and maybe get treatment under Medicare.