Establishing Your Medical Team

There are many ways to assemble the medical team recommended for Parkinson’s. The simplest way is to start with your current Parkinson’s medical providers. I’ve heard many complaints especially concerning neurology specialists. For me, I‘ve found two areas I have added to my criteria for choosing my specialist team members.

The first is time

So many specialists belong to practices that limit appointment time to fifteen minutes. The fifteen minute appointment may happen because of patient load, insurance policy requirements, or practice requirements. Short appointments can be a problem for Parkinson’s patients as it’s very difficult to talk about progression, worsening symptoms, treatment changes and other issues in 15 minutes. I’m not crusading to change the fifteen minute appointment but I’ve found solutions and workarounds that let me have essential information transfers.

Many specialists recognize diseases like Parkinson’s require more time and automatically book double or extended appointments. Often extended visits are based on your prior appointment. I also find that many specialists associated with medical schools have sufficient grants to be able to extend time spent with patients. My Neurologist is in the Movement Disorder Center associated with the University of Colorado Medical School. My Parkinson’s is well advanced and there’s a lot to discuss. My typical appointment lasts from fifty minutes to an hour. Another way to deal with the fifteen minute problem is to send a detailed but concise email about symptoms and questions to your specialist about a week before your appointment. In my case, one of my specialist’s staff highlights specific areas for the specialist’s attention. My last way of dealing with the fifteen minute question is to seek out doctors who don’t use the fifteen minute criteria by asking their receptionist when making an appointment. Too few and far between but worth asking.

Knowledge is my next criteria

Parkinson’s is a very complex disease that can affect any muscle group and has many symptoms including both motor and non motor symptoms. Everyone with Parkinson’s has a differing variety of symptoms. My symptoms cover a lot of knowledge and I prefer to find specialists to deal with symptoms that are of concern. Knowledge itself shouldn’t be a question with specialists. How they share that knowledge and answer your questions varies from specialist to specialist and the only way to know if their methods of knowledge communication meet your needs is to have at least one appointment.

My Parkinson's medical team

I’m 82 years old and my medical team currently consists of a large number of specialists as I have multiple comorbidities. Where I can, I have listed why I see an individual specialist. I didn’t collect all these specialties at once but over years as my symptoms have changed or worsened. Here is my team:

• Wife/caregiver
• Speech & Cognition Therapist Parkinson’s Speech issues and lingering cognitive issues caused by serious infections
• Neurological Physical Therapist Balance & Strength Training related to Parkinson’s
• Dermatologist Skin checks quarterly, one growth was Melanoma
• Opthamologist Parkinson’s vision problems, prism glasses
• Mobility equipment specialist, wheelchair evaluation & provision
• Internist (Primary Care)
• Nephrologist End Stage Renal Failure & dialysis
• Neurologist Parkinson’s, Neuropathy, Balance
• Cardiologist Heart Murmur, PVCs

My team never gets together and membership on my team is based on my short and long term needs. I do select my team members based on my criteria:

• Members are Specialists in their field and have Parkinson’s specific knowledge
• My neurologist is a member of the Movement Disorder Center
• Willingness to consult with each other when an issue or symptom crosses knowledge or specialty areas
• Willing to accept that one of my specialists is acting as my prescription crossing guard and checking for drug interactions
• Accepts that my wife/caregiver is involved in my care
• Accepts we do research and are willing to discuss that research with us
• Listens and answers questions
• Arrives at appointments prepared

Some of my specialists I see on a as needed basis and some on a three month to yearly basis. I am an active member of my care team.

Firing your doctor

I have had specialists and other providers not meet my expectations. It is aggravating and time consuming but there may be a time when you have to “fire” your doctor. The easy way is to not make follow up appointments. Otherwise, tell your physician specifically why you’re not satisfied with your treatment and you’re considering finding another specialist. If he or she says they’re willing to try to resolve the issue, give them that opportunity. You chose them in the first place because of their knowledge and style compatibility.

How much do you value them and how much are you willing to put up with? I draw the line with Doctors who talk in gobbledygook or won’t answer questions. I have fired three doctors in my lifetime. One just said fine and the other two weren’t interested in changing their approach. The task was not easy (I’m not very confrontational) and finding new specialists is difficult because there are varying shortages of specialists. Some now book appointments six or more months in advance. However, the question is about your health and health care. What do you need?