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.