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.






 

Friday, October 16, 2020

Weekly Wednesday Virtual Support Group for Women with Parkinson’s Disease Every Wed Eve 7PM EST

Weekly Wednesday Virtual Support Group for Women with Parkinson’s Disease Every Wed Eve 7PM ES


We are like"Cheers" for women with Parkinson's Disease, except no beer. 

Sometimes you wanna go
Where everybody knows your name
And they're always glad you came
You wanna be where you can see
Our troubles are all the same

No speakers. No topics. No agendas. No membership. No sponsors. No fees. No RSVP.  We just talk about whatever is on our minds!

The group is open to all women with PD of all ages and stages from all across the USA, Canada and anywhere language and time zones permit. No RSVP needed. 


To allow for unfiltered conversation and to respect the privacy of the group, we do not allow spouses, partners, kids, or loved ones to come to the group or to listen in on the group. Please do whatever you need to do, lawfully, to carve out some private space and time to participate in the group.


Email me at cindybittker@gmail.com to get on the invite list. 



Monday, September 28, 2020

ABOUT ME

I have Parkinson’s Disease. I was diagnosed in 2005. I was 48. Two years later I met my first person with Parkinson’s Disease, Jim Maurer.

Jim had 25 years on me. I didn’t know why at the time, my knowing nothing about my disease and Jim being the only other person I knew who also had Parkinson’s Disease,  Jim took me under his wing, brought me Washington DC, introducing me to the most influential people on Parkinson’s disease, but later learned he was passing the baton to me because he knew he was dying. 


I met with Senators, Representatives, the family of the late Mo Udall, the  respected Representative from Arizona, and the first member of Congress to develop Parkinson’s disease. Moe created the Parkinson’s Action Network (PAN), a lobbying organization composed of patients, caregivers and PD research scientist from every state in the country. PAN was the “unified voice of the Parkinson’s community, and every PD Organization including the Michael J Fox Foundation, T Parkinson’s Disease Foundation (PDF), The National Next Parkinson’s Foundation (NPF), and The American Next Parkinson’s Disease Association (APDA), although I still was not entirely sure why.


I took my friend Jim’s place at PAN, and became a member of  Massachusetts Delegation. For the next 12 years, together with delegates in across the country, hundreds of patients will descend upon Capitol Hill in late March, meeting with every senator and representative from our states ask them to support important legislation to the Parkinson’s community I’m continuing to build relationships with them in their district offices throughout the year.


I was walking the from the House of Congress to the Senate, which is a VERY long walk. Member of Congress use the rail system running under both houses, which is why you rarely see them in the halls. One day I thought I spotted John McCain walking towards our group. I guess I was staring with that "Is that John McCain" look, because he winked at me.


Jim had introduced me to Robin Elliot, the head of the PDF, who later invited me to the second Clinical Trial Research Initiative, We are a select group of patients from across the country were brought To lovely Conference Center for four days of training on specified roles we would take to solve the problem of under enrollment of PD research trials in our community.


We are required to report every month the number of patients we spoke with. I see dozens if not hundreds of patients in various groups in the course of a month. I was sending my message out to all of them but I couldn’t identify how many have spoken with. Then we were supposed to follow up with each individual person overtime see if they actually enrolled in a trial.


This became the beginning of my transition from an advocate to an activist. 


I refuse to send a day that was impossible to obtain. I question the need for the process. I began to see that the entire system of patient recruitment was operating in reverse. I spoke out about the absurdity of asking patients With movement disorders, cognitive communication impairment’s and lack of mobility to go to clinical trials. It was obvious to me that the clinical trials should go to them. I began writing and publishing papers about the inherent bias in trial recruitment In addition to the absurdity of the methodology of recruitment. I was politely kicked out of this group. I became an activist.


I found a kindred spirits In the Michael J Foundation. They recommended me to be on Patient Advisory Councils at numerous pharmaceutical and therapeutics companies developing treatments for Parkinson’s disease. I work with companies like Pfizer to Revamp the design of clinical trials that were under enrolled to enhance patient participation.

  

I thrive in these positions, brainstorming with the entire clinical trial teams and often the CEOs of these pharmaceutical companies. There were no limits on thought, no judgments on brainstorming. Often the meetings are attended by the CEOs and talked decision-makers in the company. They want to know what patients were saying.


Those experiences gave me confidence in my perspectives, as different as they were from main stream. 


My writing skills picked up and I develop the confidence to start speaking publicly about the needs of Parkinson’s patients in the system changes that we needed.


The most rewarding part of my work has been meeting hundreds and hundreds of other patients with Parkinson’s. 

In 2007, I found in my first support group, the Young Onset Parkinson’s Disease Support Group of Greater Boston. I lead the group for many years until we aged up and had to rename ourselves the Baby Boomers Support Group And turned it over to the APDAMA.


I went onto found a number of other support groups and social networks. Including Shaky Ladies Group. As a result of Covid, I recently started a “Weekly Wednesday Virtual Support Group for Women with Parkinson’s Disease.” It’s been an amazing experience to start this group out of nowhere and have women from across the country joining it in droves. Were using breakout rooms to accommodate everyone and still maintain small groups. It’s fascinating, rewarding and affirms my belief that until there’s a cure, there’s a community.



 

Saturday, March 7, 2020

Do You Have Plutonium in Your Medicine Bag?


I had Movie Night with my two granddaughters, Kyla and Aubrey. I picked the movie. They could stay up past bedtime to watch it.

We got into our PJ’s. I made a concession stand in the kitchen with “real movie popcorn,” loaded with butter, big cups for taking popcorn into our home theater (aka the TV room), juice boxes, and 2 movie-sized boxes of each candy; Junior Mints, Milk Duds, Swedish Fish, Malted Milk Balls and Nerds.

The movie was my pick because I cannot handle seeing any more movies with characters from video games. Ditto for princesses or in plastic spoons that come to life.

I chose “Back to The Future.” They’d love it!! The characters. The time travel. The love story. The 1950’s. The action. Most of all, I was excited to watch them see Michael J. Fox before he had Parkinson’s disease.

Since I’ve had Parkinson’s disease before I had grandchildren, they’ve never known me without my symptoms, I thought seeing the movie would give them an understanding that I wasn’t always like this, either.

What I learned that night is they can’t detach Michael J. Fox from his Parkinson’s anymore than they can detach me from mine. I’m just Grammie. And Michael J. Fox, logically, would have Parkinson’s in “Back To The Future.”

The following conversation took place at the end of the movie, which told me everything:

Aubrey, the younger sister, watching the final scene at the Clock Tower, where Doc is standing at the top of the tower in high winds as a lightning storm moves in, trying to plug in the two wires before the clock strikes, asks “Does he need to take his medicine?”

Kyla, the older sister, corrects her sister who clearly does not understand the plot: “Aubrey. That’s the boy’s doctor. The boy has Parkinson’s.”

With the DeLorean picking up speedy, Aubrey, referring to the Flux Capactor box, asks “Is that the Doctor’s medicine bag?”

Kyla: “No, Aubrey. I already told you, the boy had Parkinson’s. That’s the boy's medicine bag.”

Me, trying to explain the movie says:”That’s not a medicine bag at all.  That’s the Flux Capacitor. There’s Plutonium in the bag to make the car go so fast.”

Letting this thought sit for a moment, Aubrey asks, “Grammie, do you have Plutonium in your medicine bag?”

Tuesday, March 3, 2020

Humpty-Dumpty Syndrome



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.


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

There are the obvious, visible ones that make our movement abnormal, 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. No one puts us back together again. At least ALL the King's horses ALL the king's men gave it a good try.

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.

Saturday, January 25, 2020

Don't Buy The Lie



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:
“Tape your left arm to your side for 6 months.
Then we‘ll 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

The PD Rubik’s Cube


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 (makin
g 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 tosee the complexity ofParkinson'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.




Wednesday, January 1, 2020

A Day in the Life of a Person with Parkinson’s Disease Shopping at Trader Joe’s


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.)
Thanks 
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 display. 

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 treatments.