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

Wednesday, January 15, 2020

Don't Buy the Lie: No One Knows How You Will Do

Relentless self-advocacy
Is the key to our survival.
Keep fighting Parkinson’s disease,
our greatest enemy and rival.

Don’t ever let anyone
stand in your way.
Don’t give up fighting
because of what experts say.

People with Parkinson’s need to be wary
of popular opinions masquerading as facts.
Many can undermine your efforts
to turn your disease progression back.

Our goal is to get better,
not just stop disease progression.
IMHO, any doctor who shoots for less
should exit the profession.

To the doctors who tell their patients
Parkinson’s disease does not cause pain
I say, “Tape your left arm to your side and in
6 months let’s meet and talk again..”

Incurable neurodegenerative disease?
PD’s most enduring “fact.”
Don’t buy the lie.
They might soon take it back.

Every cured disease
was once an incurable one.
Scientists are working on PD.
Their work is just not yet done.

Personally, I am certain
exercise is the way
we can improve our function
if we work out every day.

I have friends and family who tell me
they have the same aches and pains I do.
They don’t. I know the difference.
Because I am aging, too.

Depression is a part of the disease.
Depression is not a lack of gratitude.
Any “know-it-all” who tells you you this
is ignorant, insensitive and rude.

So, don’t take to heart
what you’re told is a fact.
Nothing about Parkinson’s
is that white or black.

To all of you with PD,
 those far and those near:
This poem is my way of wishing you
a happy and healthier New Year.

 Cindy Beth Bittker

Tuesday, January 7, 2020

PD As A Rubik’s Cube: Visualization of life and PD

Imagine that Parkinson's Disease is a Rubik’s cube. Every side of every cube represents a different variable associated with your life and your disease. Moving one cube (making one change in any variable in your life or disease)  effects every other cube (all other parts of your disease and your life.)

Variables might include such things as: the
medications you take, the side effects you experience, non-motor symptoms, how much you exercise, your financial well-being, your worries, your outlook on your life, your support system, your stage of life, responsibilities, mood, how much you sleep, how long you’ve had the disease, your gender, the doctor that you see, other  health conditions, life history, genetics, your temperament, your work, your relationships, your role in the community, and even the food in your refrigerator.

This visual analogy makes it easy to see the complexity of Parkinson's Disease. Doctors may look at symptoms and side effects as something separate from our lives. But the patient reality is that every aspect of the disease impacts every aspect of our lives and vice versa. They can’t be separated. It’s not how patients experience them. It’s just not reality.

Thursday, January 2, 2020

No Humor In This Post - An unedited late night rant about genetics

This is a late night, mostly unedited rant about generic Sinemet and 12 years being in the wrong one.

There’s really nothing humorous I can say about this post. I’m really pissed off and I’m rather shocked.

In medicine an unexpected finding is called an “incidental finding”. In casually researching Parkinson’s disease, which means glancing through the various Facebook groups I belong to, reading up on various sources and feeds, occasionally come across an “incidental finding” also. I ran into one today, on the heels of becoming aware, or rather re-aware, of something I heard on a podcast. It pisses me off more than I can express, that this basic piece of knowledge, which could’ve changed my quality-of-life for the last 14 years, was just not addressed.

As I have written about, the worst of my Parkinson’s is medication fluctuations. Wearing on and off. When our meds are working, we can move but as the disease goes on our meds don’t work anymore. They are either too high or too low. When they are too high we thrash about and cannot stop moving or control movement. When they’re too low we are frozen and it is very difficult to move. Our bodies become rigid and mine twists and rotates to one side.

Everything I do in my life has to be framed within these 2 1/2 hour cycles. Until four months ago, I had 45 minutes out of each 2 1/2 hour cycle where I completely couldn’t function.

These cycles contributed to panic attacks whenever I had to be out in public during my 45 minute off time and had to walk in front of people. It restricted my life. I became despondent and depressed to think that this is gonna be my life every day, only most likely, over time, worse. At times I felt like I was just getting through a day just to get through a day just to get through another day.

 When you have so much off time, and on time is so limited, there’s not much you can plan to do. It’s hard to be with people for a long time and it’s hard to nail the hour and a half when you’re actually closer to normal.

When medicines ware off, faces become expressionless, voices become expressionless and people react to you as though you are as emotionless and stonefaced and depressed as you look. The more people reacted that way the more you kind of become that way. You look around the world and you see a bunch of exuberant faces and people who can maintain their moods for more than an hour and a half. And you can’t. And it’s not mind over matter.

This is more than fits in a post but gives you an idea of why am so pissed off.

In a podcast link below, the title being “When Life Gives You Parkinson’s”, I listened to an episode on the shortage of Sinemet in the world. Within the podcast was a brief interview with  a
Patient who explained why the variation in different manufacturers of generic Sinemet is so impactful  for treating Parkinson’s disease. Taking one generic over another may not matter in some illnesses, but it matters a lot and Parkinson’s do to the nature of the disease.

For the last 14 years plus and I have been taking Sinemet I have asked for a specified generic, “sun pharmaceuticals.” “it is an oval shaped pill and I could swallow it better than the typical round ones. Countless times the pharmacy has made a mistake and given me the round pills by various generic manufacturers. I sent them back each time.

After listening to the podcast my mindset had changed and when CVS, once again, gave me the wrong generic, I did not give it back. I used it. And I was shocked that my ofttimes were significantly better. Where as before, I was off for about 45 minutes of every 2 1/2 hours. (I take meds every 2 1/2 hours.)

For some reason I was actually stretching near my next dosage. Sometimes I didn’t wear off at all. It was such a significant difference that I started to You’re out what was causing the change. I thought maybe it was my training, maybe it was receiving care from an aid and the reduction of stress from that, and maybe it was from a change I had made in the mirtazapine I take, Which has resulted in my being better able to sleep.

This change may some ramifications in my eligibility for the clinical trial I think I’m starting. Because At the time I was referred, I was on the oval shaped generic where I had a lot of off times. And since that time I have had far less off periods and the trial requires and I have 2 1/2 hours of us. Per day.

I was reading a post on “StrongHER Women“ a private Facebook group for women with Parkinson’s. A patient posted about being switched to Sun Pharma brand  generic Sinemet and was experiencing more off times. She wondered if it was possible that was due to the generic. I was blown away because it’s confirmed my experience that I had a lot more often times on that generic.

I’m pissed off  that all these years that I’ve been struggling with off times, why was it not suggested to me that I try another generic. In fact why aren’t  all patients advised to try a different generic from time to time just to see if they do better. There’s no hesitation to offer deep brain stimulation surgery. or add  layers of new medications. Why don’t doctors from time to time  try patients on a different generics?

This is a huge reminder to everyone with Parkinson’s that your story, your questions, matters to all of us. It may save some of our lives and that’s not an exaggeration. We are winging this disease. No one knows what causes it. No one knows how to treat it. And no one has ever had any experience with our generation. patients, diagnosed young, whose disease is advancing, and who are still relatively young. who have taken an Unprecedented number of different drugs for an unprecedented number of years as we have.

I wanna make a note of this because the “incidental information“ I found, is not the kind of information that’s gonna be repeated through various Facebook groups and news channels. This is one woman’s experience who happen to post about it. And I happened to read it. And it may happen to change some lives.

We have to learn from each other. We have to share of the itty-bitty’s of our life. We have to ask the questions.The information I get from one patient is far more life-changing than 10 multi billion dollar studies of Parkinson’s medications.

To all of you who post and share and ask, thank you. You are lifesavers. To those of you that don’t, please start. Please know that everything you contribute and everything you share, could make a difference in someone’s life.

Wednesday, January 1, 2020

Just Sayin': What would a ‘normal person do if this happened to them?

Parkinson’s patients live every day with a lot of symptoms. I think if they happened to a normal person, they would be in the ER. Like.....What if you went to Trader Joes, got a cart in the parking lot to use for stability and went shopping? Your'e cruising the aisles, picking up items and making tough decisions. 

You bend down to get meringue cookies from the bottom shelf and get so light-headed, you think you might pass out. There are no chairs at TJ's, FYI, except for the toilet. You make a beeline to the restroom, where regroup, and go back to the aisle with the meringue cookies. (just sayin'.) 

Last but not least, you hit the frozen food aisle. You try to pick up a box of frozen bake at home chocolate croissants (just sayin'), and you can't make your hand grab it. You feel like that machine at the circus with the claws you operate to pick up the toy, but they don’t do what you think you are making them do, and mostly you lose your money and don't get the toy.

You are starting to have really bad back pain and you can't stand straight up. You are bent over on your right side. Your torso starts rotating, too. You look like the Leaning Tower of Pisa. You now have Pisa Syndrome. (It's real. I didn't make that up.) It's hard to walk like this - try it. (and just for funzies, duct tape your left arm to your left side, so it won't swing.)

Pushing your cart up aisle toward the check out area, you try to take a step and your legs won't pull your feet off the floor. Your hip flexors (or whatever holds you hip in place), won't lift up your legs. Nothing will recruit the muscles needed to take a step. 

So you lean into your cart and press go. You're walking like a toddler just learning to walk. On your tippy toes, taking tiny little steps - but fast -- and forwards. You have no steering and you have no brakes. You're picking up speed, and head toward the checkout lane in front of you. You have no choice. You can't turn your body.

Like a newbie walking toddler, who stops their Frankenstein walk, arms outstretched, by running into a wall, you push your cart, arms outstretched, and hit the checkout stand. Crashing into the end of the check out counter, you drape your body over your basket while you try to recover your balance. 

While you are trying to lift yourself off the cart but before you are fully upright and balanced, the cashier takes the cart out from under you to his side to ring you up. Sans shopping cart, you shelf-surf around the end cap filled with must-have items, like Sour Jelly Belly’s (just sayin’). You reach for your box(es) of Sour JB’s, make a minor miscalculation in the distance from your arm to said JB‘s and take out the entire displa
Making a feeble attempt to pick them up, customers from 360 degrees around you who had been trying to determine if you were drunk or having a heart attack, dive in to pick them up for you. 

Your feel a panic attack coming as you realize you are not flying under the Parkinson’s radar anymore. The jig is up. Your mind drifts into the future. Like Ebaneezer Scrooge, you see the ghost of Parkinson’s disease future. "If this is what it's like now, how am I going to handle this when I get worse?"

Your thoughts are brought back to the here and now when you feel a vibration on your rear end. It's your cell phone. You keep it in your pocket so you can't miss your medication reminder. (Also because you keep an emergency dose of medication taped to the back of your phone in case your purse ever got stolen.)

You are so relieved. It's your meds that have worn off. Now it all makes sense. It's the usual. You laugh at yourself that you were so wrapped up rationalizing your decision to buy both the meringues AND the frozen, bake at home chocolate croissants, that you forgot your plan to take your meds 15 minutes early so you wouldn't wear off while shopping at Trader Joe's. 

While leaning on onto the edge of the cashier's counter for stability, you get an early start on sliding your credit card out of your wallet, before prime time, when the cashier asks you to slide your credit card in the slot. Under that kind of pressure, your fingers develop stage fright, operating like the claw-toy-pick-up-frustrating-money-wasting-machine-at -the-circus, as you feel the impatience and irritation of the lengthy line of shoppers behind you.

You know the drill. Don’t make eye contact. You’re almost at the finish line, you tell yourself as you plan your best exit strategy out to your car. Car is your home away from home where you can sit, wait the half hour for your meds to kick in. And eat those meringues. 
What would you do if this happened to you at Trader Joe’s? 
Most healthy people would be in an ambulance en route to their closest ER, leaving behind a shopping cart with defrosted, mushy bake at home chocolate croissants.

For those of us with advancing Parkinson’s disease, this cycle repeats every 3 hours, every day, year after year, until things get worse. Sounds awful and frustrating, but for people with Parkinson’s, this is a good day and a successful mission. We are grateful for the hours our meds are working, knowing we are destined to lose even this, unless there is a cure or life long treatment