Thursday, October 20, 2016

Optimism and entanglement, My Changing view of Parkinson's Disease



Parkinson's Disease is considered rare. But most of us carry a vague mental picture of it, or more precisely, its effects. This picture centers on the brain and usually includes uncontrollable shaking, drooling, gait impairment and weakness. What's more these effects are progressive, disabling and incurable. Aside from this, the other thing people know about Parkinson's is it's a disease of the elderly.

That was roughly the mental picture I had when I was handed my diagnosis in 2002. Bang went the illusion that youth was a bulwark against PD. I was 43, much "too young:" to have Parkinson's. This rude shock was just one of many changes to the picture I have of PD 14 years after diagnosis.

First, yes, Parkinson's is a brain disease, but it is more than a malfunction in the tiny part of your brain where the dopamine that tells muscles how to move is made. We now know it also affects the motor cortex and the prefrontal cortex, where it has effects beyond movement problems. This never-tiring disease also involves the body beyond the brain, afflicting those who have it with constipation, loss of sense of smell, and sleep disturbance a decade before the appearance of motor problems most commonly associated with the disorder.

Which brings up a whole class of symptoms that were, for the most part, downplayed. These are non-motor symptoms. There is a raft of them, but perhaps the most significant are depression and cognitive decline. Can I get an oy vey?

On top of these underappreciated non-motor symptoms is a boatload of motor complications that add to the many miseries of Parkinson's. Miseries of which I was blissfully unaware. Suffice it to say that PD not only fucks you up, it fucks you up in great detail. Like a jagged coastline, the closer you look at it, the more of it there seems to be. Oy. Vey.

In general, my perception has moved from terribly oversimplified to a realization that PD is fiendishly complex. Yet I am now far more optimistic than I was 14 years ago about the prospects for PD patients to live fulfilling, meaningful and dignified lives.

What is my basis for this outlook? Do I have some inside information on a cure around the corner? I do not. Nobody knows when the longed-for cure will finally make its appearance. I doubt it will be in the next few years, As I wrote above, PD is terribly complex. The cure hasn't been found yet because it's hard to cure. The likelihood that a simple fix, let alone a complex one, will be found in time for me, now two years shy of 60 years old, seems small.

But consider: I've lived the last 14 years, not without loss, but with fundamental quality of life largely intact. There are unquestionably things I have given up. I rarely drive anymore. I have found myself looking over at the last minute and avoiding disaster too many times to be confident behind the wheel. I would dearly love to be unchained from the pill routine that I must maintain to approximate normal. And don't ask about my ability to play guitar and sing.

So, despair, right? No. After 14 years, a bit of brain surgery, a devotion to exercise, and a simplification of life following the loss of my wonderful but stressful job, my experience leads me to believe with a bit of luck, some discipline and maybe a bit more luck, a person using the information and interventions we now have available can live a life that is full and rewarding.  I know this is possible, because I live it. Maybe not full in the way you expected. But, to quote John Lennon, "Life is what happens while you are making other plans."

5 comments:

Amy Carlson said...

Hear Hear!!

Anonymous said...

CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION…LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU…BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS….
STILL INTERESTED? READ ON!…(and no I am not selling anything!)

I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.

The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamet, though he had a lot of side effects from Mirapex and Artane.
I was busy teaching Science and although I lived close, found it tough to find the time to help out….though I’d often come over on the weekends.

Years 5-10 became tougher as you know…Sinamet was introduced in year 7 and really helped for a while…but in year 11 Dad got Aspiration Pneumonia…spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:

The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or “Sinamet”) you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET…INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.

I did this with my Dad and it really helped! Read on…

What does it mean? It means that when you take a tablet or 2 of Sinamet…the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias…

So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you’d take just a a little BEFORE you normally would…and the second just a little AFTER you normally would…about 15 minutes apart may work (AGAIN…ASK YOUR NEUROLOGIST FIRST!)

WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low….then the second tablet can later “Buoy” up the dose level, BUT avoiding a sharp spike.

My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended “off” periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart…
HUGE DRAMATIC IMPROVEMENT….70%-80% BETTER IN ALL AREAS

I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad…and shrugged their shoulders and said , “Well, 12 years with Parkinsons….and….what can you do?”

I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.

Though my father’s has it tough, at least this has eased his discomfort some…
REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING…IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET…PERHAPS…
Again Ask your Neurolgist…BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS…BE RELENTLESS….OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU’LL MAKE PROGRESS

Good luck…I hope this helps someone….in the name of my Dad…Ed
Love ya Dad…

Steve

Peter Dunlap-Shohl said...

The following comment was accidentally deleted, so I am restoring it, with thanks and apologies to my friend, Dan, "You say it so well, Peter. Love your book! I write a short review about it on my blog. Great job, friend! Dan Brooks"

Peter Dunlap-Shohl said...

Thanks Steve. The idea of continuous delivery makes sense to me. Bill Bell, co-founder and director of the Northwest Parkinson's Disease Foundation told me that when he was caregiver to his mom, they used a similar strategy with Sinemet in Orange juice. More about that here

Dan Brooks, Ed.D. said...

Hi Peter, You always find words that lift and inspire with clarity. Your purposefully chosen words make your prose provide food and education for our spirits as well as our minds.

Thanks for our renewed contact. I am always reminded of our many things we have in common as patients, musicians and a desire to share in order to benefit others. You are a great role model for all of us that fight degenerative brain disorders! I know you have had many losses from PD but yet you never quit, bro! Blessings Peter! www.wewillgoon.com dan