Monday, February 24, 2020

Rookie Mistakes: Part 2 Does My Doctor Think I'm A Pain In The Ass?

-In Part 1 of Rookie Mistakes, I wrote about why newly diagnosed patients should have a Parkinson's doctor who is a Movement Disorder Specialist and not a General Neurologist.

Most patients who first hear the words, "You have Parkinson's disease" lose a week of sleep Googling "Parkinson's disease." That is the #1 Rookie Mistake. 

Your first task should be to research Movement Disorder Specialist's you can see. This is arguably the  most important decision you will make as a new Parkinson's patient. Your comfort, your disease progression and the quality of your life sits squarely in the hands of two people: You. And your Parkinson's doctor. 

You and your doctor are a team. You provide data. Your doctor provides you with a game plan.

To thrive and survive Parkinson's disease, you must practice relentless self-advocacy.

I use those words in almost every blog post. No one knows what is happening to you. So much of Parkinson's disease can't be seen, even by those closest to you. It's nearly impossible to articulate the whole of what happens to our minds, bodies and souls. Even if we could, no one can understand us more than another person with Parkinson's disease. 

And that includes your Parkinson's doctor. Unless you Parkinson's doctor is also a Parkinson's patient.
Dr. Maria DeLeon - Movement Disorder Specialist and Young Onset Parkinson’s patient diagnosed about 15 years ago. Blog: DefeatPaekinsons
Dr. Soania Mathur - Family Medicine Doctor and Young Onset Parkinson’s patient diagnosed about. 20 years ago. Blog: UnshakableMD

There is no precedent for your unique symptoms. There really are no symptoms of Parkinson's disease. Parkinson's disease doesn't exist on its own. Every symptom is inextricably bound to your life and your entire body and mind. 

Your Parkinson's doctor cannot see what is problematic to you. You are the only one who can make your needs known. And that stream of data is never ending in Parkinson's disease. 

Things change and new data given. Things don't change and you have to be relentless in continuing to ask, over and over, until you get a handle on the problem de jour. You may have to tap into a number of doctors and you may be the conduit in putting together the various pieces of your PD puzzle as each doctor gives you a piece of your puzzle.

This is a disease of endless problem solving. We don't go straight downhill. The long term trend might be down, but like the stock market, in between are ups and downs. Problems and problem solving.

Our efforts to problem solve are often misconstrued as complaining to our loved ones. But your doctor should see this as problem solving and should be in there with you trying to figure it out.

There will be countless times, in between clinic visits, that you will want to call your doctor about a problem and will do battle in your head trying to determine if your problem is call worthy. You will wonder if you call too often, will you doctor think you're a pain in the ass and not be as willing to respond to you as quickly in the future?

So, when you first meet with a Movement Disorder Specialist (and I'd suggest setting up appointments with a few of them to figure our which doctor you want on your team), there are a lot of questions you will ask.  

The most important question I've had over most of the past 15 years since my diagnosis is the one question I've never asked.

Does my doctor think I'm a pain in the ass?

It's a question that comes with the territory of ruthless self advocacy.

Of all the questions you will have, this is the one you really need to know!

Rookie Mistakes: Part 1 Seeing General Neurologist for your Parkinson’s Care

I have heard newly diagnosed patients give these reasons for seeing a General Neurologist instead of a Movement Disorder Specialist:

"I'll wait until I'm worse before going to a Movement Disorder Specialist."
I hate to burst your denial bubble, but you already have full fledged Parkinson's disease. You may think you are just dipping your toes in the PD waters, but your whole body has been fully immersed those waters long before you were diagnosed. You don't have Parkinson's Disease Lite. They don't make it.

You'll probably get to "worse" faster if you are seeing a General Neurologist. Studies show that patients who see a GN fare worse than those seeing a MDS.

PD doctors follow you over time. A long time. Perhaps 20-30 years or more. 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.

A common time to want to change doctors is mid-stage PD, when your meds don't seem to work as well and your doctor seems slow to make changes in your meds to get you back on track. You see other patients doing better than you and you start asking around for who they see. You book an appointment with their doctor who may have a different approach.

Mistake. I've made this one. I saw the same MDS for 12 years, and then made a change. My new MDS didn't know me from the get go. He didn't know how far I'd slid and what my potential should be. He compared me to how I was doing against other patients who'd had PD as long as I had. Given that I was doing better than most, he was satisfied with where I was at.

I was not okay with that. I don't care at all how I'm doing compared to other patients. My goal is not to get worse more slowly or even to be better than I was. My goal is to get better than I am. I went through a year of hell, being underestimated and under-medicated. It was a mistake to change doctors mid-way.

I did share with my doctor that I was going for a second opinion and he was okay with that. He was curious to know what the second opinion doctor said. I didn't discuss that with my doctor.  I felt like I had to sneak out of his practice, politely and just sent him a note saying I was making this change. I wish I had stayed with my doctor and discussed second opinion doctor's opinion with him. After a year, I was back seeing my first doctor.

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.

While on the topic, 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.

"The MDS is too far away."
Make the drive. Ride the train. Fly the plane. 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 patients are seeing their Movement Disorder Specialist by video.

"The GN tells them he/she takes care of lot of Parkinson's disease and knows all about PD."

No matter how many patients your GN sees, your Movement Disorder Specialist sees more.

No matter how much GN knows, your Movement Disorder Specialist knows more. GN see patients with at least 100 neurological disorders. A MDS focuses primarily on PD, and movement disorders such as dystonia and tremors. You are much less likely to be misdiagnosed by a MDS than a GN.

MDS have completed a Fellowship in Movement Disorders, an extra 2 years of training after medical specifically in Movement Disorders.

GN do not see patients in the resource rich centers offering patients a team of PD health care professionals that is offered by MDS in one of 48 medical centers around the world, including 34 in the United States" designated as "Centers of Excellence" by the Parkinson's Foundation. A lot of research trials take place at these centers, and doctors are more involved in trials and their patients more likely to be referred into trials.

MDS know better than GN how medications really work. Drugs work differently in patients than they do in clinical trials. In trials medications are looked at separately. In real life patients take many different drugs. When new drugs are approved, it is the doctors who are seeing the most patients that have a more accurate guess about who the new drug will help. New drugs are usually insanely expensive and your MDS is more apt to make the case for your insurer to cover the drug.

When you have PD, you will have urgent questions for your PD doctor. MDS and their clinics are set up to have MDS on call for you 24/7. MDS understand the urgency of patient calls.

It is more important than ever for this generation of patients 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.

There is a new bimodal shift in patient gender. In older people, more men are diagnosed with PD than women. In younger people, more women are diagnosed with PD than men. Women are typically diagnosed a few years later than men. At the time of diagnosis, they have more residual dopamine in their brains. Women tend to have tremor predominant PD, which has a slower progression and yet women do not fare any better than men and possibly worse. Why? Perhaps because women are 25% less likely to see a MDS than men.

No one understands Parkinson's disease. There are no standard protocols for treating Parkinson's disease. Every doctor is guuessing. You want to see the best guesser possible. Choose a Movement Disorder Specialist.

Read Part 2 of “Rookie Mistakes, “Does My Dr. Think I’m A Pain In The Ass?”

Wednesday, February 19, 2020

Support Group for Women With Parkinson's Disease and Young Onset Parkinson's Disease in Natick, Massachusetts


There is a monthly support group for women of all ages and all towns with Parkinson’s disease. 

We made the first Saturday of every month at the Natick Community Center from 10:30 AM till noon.
117 E Central St, Natick, MA 01760

We are not affiliated with any organization and there is no fee to attend.

There’s ample parking and the building is accessible.

The group is open only to women with Parkinson’s disease. We ask that partners and companions wait in the lobby.

For more information contact:
Liz: Group Leader/Facilitator (508) 380-6862‬
Cindy: Publicity/Logistics (617) 921-9966

Tuesday, February 11, 2020

Humpty Dumpty Syndrome in Parkinson’s Disease

Most all patients with Parkinson’s disease will develop Humpty-Dumpty syndrome. It is a syndrome we get from our doctors. Our doctors get it from our health care system. It may be a silly name, but it’s a serious condition.

In Humpty-Dumpty syndrome, pieces of our disease symptoms are referred out, but rarely is there anyone putting all the pieces back together again.

Those of us with Parkinson's disease know how many medical problems come with the disease.

There are the obvious ones, like tremor, rigidity, slow movement and postural instability.

There are problems with functions that should happen automatically, but don’t, like: blinking, smelling, vision, swallowing, digesting, eliminating, sleeping, walking, and balancing, to name a few.

There are problems that come from side effects/interaction of medications we take fo treat these symptoms. Often the side efffects are the same as the symptoms they treat, like: nausea, tremor, shaking, muscle spasm, loss of coordination, dizziness, confusion, hallucinations, excessive sweating  extreme changes in blood pressure, increased heart rate, serotonin syndrome, which in severe cases can cause coma or death.

When you have this many problems, you see a whole lot of specialists. Like Humpty Dumpty, we get broken into pieces, each sent out to a different specialist for diagnosis and treatment. At least all the kings horses and all the kings men tried to put Humpty-Dumpty back together again. Rarely is there a health care provider taking responsibility for putting us back together again. 

The job of putting us back to together again usually rests on our shoulders. Most of us are not qualified for the job. We may not be trained in medicine. If our specialists don't talk to each other, we try to pass the messages along for them. We make very poor messengers, having problems with memory, cognition and communication.

The only antidote I know of to Humpty-Dumpty syndrome is to practice relentless self advocacy — first in finding a doctor who will oversee your care, who will work together with you as a team and who responds quickly to your calls when you are trying to put your pieces back together. Secondly, to keep looking for answers and solutions. When you hit a dead end, back up and take another pathway. Lastly and most importantly,  talk to other patients, because until there’s a cure, there’s a community.

Monday, February 10, 2020

Perks of Parkinson’s

Perks of Parkinson’s!!!
When your granddaughter goes to school dressed as a 100 year old to celebrate the 100th day of school, she nai