Finding the right medical team to help me manage Parkinson’s
I'm grateful to have so many knowledgeable and skilled providers
Parkinson’s disease has many facets, and research into its progression and treatment is constantly evolving. So is my health. Navigating all the changes takes a team, and over the past 11 years since my diagnosis, I think I’ve recruited a pretty good one.
So who’s on my medical team?
Primary care physician
My primary care physician (PCP) played a crucial role in my diagnosis of early-onset Parkinson’s disease in the fall of 2013 by being observant, listening to me, and not shying away from referring me to a specialist. I’d had doctors that I wasn’t comfortable with, and I found myself not telling them things. If it weren’t for this physician, I might’ve put off getting help until much later.
I also need a trusted PCP to help care for the rest of me. With Parkinson’s, I see many specialists who talk about my brain, but someone needs to make sure the rest of me is functioning well, too.
Neurologist/movement disorder specialist
I have a great neurologist who is also a movement disorder specialist. She didn’t diagnose my Parkinson’s, but when I met her in 2014, I was just 37. One of the first things she said was, “You’re too young. You have too much to do. We’re going to make you feel a lot better.” That attitude was something I wanted on my medical team.
Also, because she specializes in movement disorders, and Parkinson’s in particular, she and her nurse are highly skilled in programming my deep brain stimulator (DBS) system and making adjustments to my treatment.
Neurosurgeon
I have the great fortune of living in Boston, where I have access to excellent hospitals, doctors, and medical research. My neurologist works with top neurosurgeons all over the city and helped me find one who was a good match for me, both in terms of skill set and which DBS device was right for me.
I’ve found that many surgeons are kind of cocky and a bit brusque when it comes to bedside manner, but I’m OK with that. If someone is going to drill through my skull and poke me in the brain with a wire, I want them to be pretty sure of themselves!
Physical therapist
Over the years, I’ve worked with several physical therapists (PTs) on injury recovery and ongoing gait and walking issues. I’ve learned to ask if the person I’ll be working with has experience with Parkinson’s. Every PT has probably seen a bad shoulder or a bum ankle, but Parkinson’s can be tricky, and having someone with experience working with me is nice.
Another thing I look for in a PT is a willingness to push me. I don’t want to work with someone who has low expectations of me because I have Parkinson’s. I like working with a PT who knows I can kick some butt and challenges me to go beyond what I think I can do.
Women’s healthcare providers
I was just 36 when my Parkinson’s was diagnosed. Very little research has been done on premenopausal women with Parkinson’s, although there is some. We don’t know much about how female hormonal changes may affect the Parkinson’s experience, but my gynecologist is a good thought partner. We’ve discussed birth control options that won’t affect my symptoms and navigated other women’s health issues.
Another women’s health issue I hadn’t considered until it happened was getting a mammogram with DBS. DBS involves wires implanted in my brain, connected to batteries, and the actual stimulator in my chest. The first time I tried to get a mammogram, the radiologist got so freaked out by this implant she hadn’t heard of that I left the appointment. I have found a new place to get my mammograms that listens to my concerns and has no problems with the device.
I could go on about my medical team — and I’m sure I will in future columns. My ever-vigilant pharmacist, my excellent orthopedic surgeon who replaced both my knees, the DBS device representative, and exercise and support groups have all played a part. What’s important is that I have a team that listens to me and makes me feel comfortable, and that I advocate for myself with all of my care providers. Parkinson’s is a big journey. We all deserve a solid medical team to get us through.
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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Ivan UK
Most of this article is useful - but there is one glaring gap which we have also encountered with my wife's Parkinson's - Neurologists and doctors in general are well aware that there is not yet a cure as such and they regret that often can only offer to vary the dosage of Levodopa !
Medics often neglect to add that while we wait for a cure - much can be done to alleviate symptoms by making good informed choices using expertise from other specialists especially in nutrition and exercise. We also were told nothing else was needed or available and struggled to find such expertise, until thankfully at last Parkinson's UK found for the annual Edinburgh lecture slot a nutritionist lady who herself had PD - That was such a revelation !
We now have so many ideas and actions to follow up that we find ourselves totally re-engaged, mentally uplifted and so busy !
There is a wide range of help out there - just persevere and cast your net way out beyond the present purely medical capability.
You are what you eat ! and sometimes what you refrain to not eat !
Teresa Strong
I would like to add another therapy: Speech therapy, not noteably Parkinson's Voice Project. It is based on the theory that because Parkinson's results in the loss of autonomic muscle control, sufferers move less and as a result, become progressively weaker. It happens with all muscles, including the muscles used in speaking and swallowing. The remedy is to take back control by doing specific movement exercises to regain and retain muscle control. Their mission is to help people live with intent.
Home page:
https://staging.parkinsonvoiceproject.org/
About Parkinson's Voice Project:
https://staging.parkinsonvoiceproject.org/about/
The Speech Therapy Program:
https://staging.parkinsonvoiceproject.org/program/
You can access the daily speech practice and sing-alongs through the home page and the Program page.
Explanation of what happens in the brain regarding muscle control,both automatic and intentional.
https://parkinsonvoiceproject.org/education/what-is-parkinsons/
Cindy Mcgrath
Husband has Lewy Body Dementia so Parkinson’s is also on board. Can’t get him to do PT or see movement specialist because the dementia causes apathy. Muscle tightness in neck and back are daily and very painful. Hard dealing with two diseases at once.
Don
More glaring gaps: 1) my neuro didn't realize losing 40 pounds woulds cause osteoporosis and so now I have to take a medication to build up my bones for a yea before SIJ surgery - 1 year of not being able to walk or even sit for long. And PD exacerbated fflare ups from pain. What makes PD symptoms worse - neeeding back surgery for sure, and not being able to get it.
Gap 2) my neuro didn't think it was possible for me to have gastroparesis - she viewed it as all or nothing I guess. So I had to find my own half successful work around. The symptom of Gp in PD is levodopa doesn't work. (According to some neurologists).
Gap 3) the most common Parkinson's plus syndrome - Parkinson's plus back injuries - Urgent Care wont touch me. ER is worthless, back surgeon wants Neurologist to order any muscle relaxers. Neuro wants back specialist to order them.
Enough glaring gaps for now. Coordinator of care? Me.
Melissa Mosley
It is vital to get a team. I was diagnosed 12/21 by a very nice Neurologist. When we moved 3 yrs ago he sent me to a new neurologist who was also nice but neither were PD specialists. My new Primary care doctor was a life savior.
she wanted to know more about my symptoms , which ones were PD related. She got a sleep study since I was sometimes only sleeping 2 hours a night. I am now waiting for my sleep apnea mask as a result. She sent me to PT and OT therapy which has helped me with my balance and pain in my back through exercise. Sent me to a speech therapist who had another patient with PD who had gotten a PD specialist at UC of Colorado and suggested I go there. After much encouragement and several phone calls we finally got an appointment. After a 40 minute appointment she gave me a 10 page after 'appointment summary' that was so detailed from PD symptom terminology to tweeking my dosage of carbidopa/levodopa that I had basically figured out myself, to a recipe for a bread that helps keeps you from having to deal with constipation, with information that was everything pertinent to me and my PD. Oh how I wish we had this information when I was first diagnosed. If my experience could help every PD patient get a similar summary when they are first diagnosed I would feel there was a reason it took so long for me to realize how important your PD team is. Hope this helps Doctors and patients realize this.