Wednesday, October 21, 2020

Top 6 Rookie Mistakes

1.   Looking up Parkinson's Disease online
Most every patient and loved ones, after diagnosis, stay up for days Goggling "Parkinson's Disease," trying to learn everything they need to know. What you should do first is figure out who you want to see for your Parkinson's care. It is probably the most critical decision you will make. Not much else will be as a big a determinant of how you fare.

 1. Seeing a General Neurologist GN) Instead of a Movement Disorder Specialist (MDS)
MDS are better at diagnosing PD. MDS have completed a Fellowship in Movement Disorders, an extra 2 years of training after medical specifically in Movement Disorders. 

MDS are better at getting you optimally medicated, which is an art, not a science. MDS only see Parkinson's patients, so they have a lot more knowledge of how various medications work together. There is no standard protocol for treating PD. Everyone is guessing which meds will work best for you, so you want the best guesser. There are lot of new drugs that come out now. A MDS is going to know more about how the drugs are really working in patients. Clinical trials look at the trial drug, primarily. Most of us take way more than one drug. A MDS is going to know better and sooner how new drugs work.

It is more important than ever for this generation of patients to see a MDS. We are in uncharted water. There has never been as many of us diagnosed young and living longer with advancing PD. We are taking an unprecedented number of different drugs for an unprecedented number of years. Our doctors are learning from us.

3. Waiting to see Movement Disorder Specialist Until You Are Worse
I hate to burst your denial bubble, but you already have full fledged Parkinson's disease. You'll probably get to "worse" faster if you are seeing a General Neurologist. 

Each doctor has a different feel for interpreting your progression, even though they may all use the same measurement scales. There is a learning curve that takes some time when doctors see a new Parkinson's patient. They have to get to know about your life, your lifestyle, what happens when you are under medicated/over medicated. They learn how you respond to various meds, drug interactions and how your other health problems fit in the mix.

There is no way to transfer this knowledge to another doctor. The next doctor has to ramp up their understanding of you from scratch and they will never know what you were like when you were first diagnosed. Their goals for you might be set relative to other patients diagnosed when you were, rather than against your full potential. 

If you plan to hold off on seeing a MDS until you are worse, you will be short changing yourself of the value of having one doctor see you from the start.

4. Seeing the Most Senior Movement Disorder Specialist at a Clinic or Practice
PD doctors follow you over time. A long time. Perhaps 20-30 years or more. Think twice about starting with a MDS likely to retire during the next ten years or so. You will set yourself up to be changing doctors midway and will have to find a new doctor whose practice is open at the same time as all the other patients in the retiring MDS's practice.

5. Not seeing a Movement Disorder Specialist because they are too far away
PD doctors follow you over time. A long time. Perhaps 20-30 years or more. Make the drive. Ride the train. Most of us only see our Movement Disorder Specialist in person twice a year. Four times max. Most contact happens by phone or email and increasingly, especially now, with the  Coronavirus pandemic, Telemedicine is in routine use.

5. Avoiding support groups because you think they will be scary or depressing. 
Assuming you are full of anxiety and fear about what this disease will do to you, you need credible sources of hope. The only way I know of to reduce the anxiety that comes after a new diagnosis is to have credible sources of support. The only way I know to find that reassurance is to meet other people (in person, not online) who were diagnosed around the same age as you, with similar symptoms and now are 5 or 10 years out and doing well. These people go to support groups. Recently diagnosed people go to support groups. By and large, people with advanced PD, who can't get around easily and need a lot of care, don't go to support groups. You'll find people like this at PD exercise programs too. Go to a Rock Steady Boxing class, any class sponsored by the APDA. Call the APDA and the Parkinson's Foundation. Also local knowledge is powerful knowledge. You won't find that online. 

6. Not enrolling in a clinical trial
You might think it's too risky to join a trial, but many do not involve taking experimental drugs. There are trials about exercise, speech, sleep, etc. Even if you have no need for any clinical trial, and you don't feel particularly altruistic, enroll for your benefit. Toasters come with better instructions than a diagnosis of Parkinson's Disease. You are going to have more question than your doctor will have time to answer. Participating in a research trial, especially ones that have site visits, gives you a lot of face to face time with  MDS and other experts in PD.