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