1. Seeing a General Neurologist GN) Instead of a Movement Disorder Specialist (MDS)
Wednesday, October 21, 2020
1. Seeing a General Neurologist GN) Instead of a Movement Disorder Specialist (MDS)
Friday, October 16, 2020
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.
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 email@example.com to get on the invite list.
Monday, September 28, 2020
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
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
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
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