Welcome to Parkinson’s Disease

I once heard a story on how we make plans for our lives, only to have them overturned. Kind of like planning to take a trip around the world and somehow you end up at the North Pole. This is my version of that story …

Life can be like planning for a once-in-a-lifetime around-the-world trip. In life, you plan for the college you want to attend. You plan for your wedding. You plan how many children you will have and more. You can liken it to a magnificent trip to seeing all the Seven New Wonders of the World.

You’ve scanned the internet for information. You’ve talked to others who have been and you pick their brains. You download all the information you might need and just in case you’ve missed something, you buy a couple of guidebooks to carry with you. You make all your plans for the places you’ll see: the Great Barrier Reef, the Great Pyramid of Giza, or Chichen Itza. First, you’ll visit the ancient Incan ruins of Machu Picchu in Peru.

Meanwhile, feeling unusually tired lately, you‘re counting on being rejuvenated. You count the days until you leave. The last several years of preparation lead up to the moment you’ve been waiting for. Your bags are packed and in the taxi. Everything will be perfect while you spend the next several months or more, traveling the world.

Tripping as you step onto the plane, you find your seat and settle in. Now, shaking (something you’ve noticed you now do even when you’re not nervous), you close your eyes but find it difficult to sleep, chalking it up to the excitement. Several hours later, the plane lands. You can hardly wait to breathe in the wonderful air of Peru. The pilot comes on the intercom and tells you that you may now take off your seat belt and, “Welcome to Parkinson’s disease!”

“Parkinson’s disease?!” you say. “What do you mean, Parkinson’s disease? I’m supposed to be Peru!” At least you weren’t re-routed to places with Ebola, The Black Death, or smallpox, as some were. You are in a different place, yes, but it could have been much worse.

Now you research for different information for this new season in life called Parkinson’s disease. You must learn a whole new lingo. Things like basal ganglia and dopamine and dystonia will become your household words.

Of course, this is not what you had dreamed of. Parkinson’s is a place where all the other things in your life have been, could be, or will be affected. Your marriage may change. Retirement may come sooner. Your kids may not understand. Parkinson’s disease. It certainly isn’t what you hoped for.

This life you will now live may be slower-paced than that trip you had planned. It may be filled with many unknowns. However, after you have caught your breath and have looked around, you will notice that Parkinson’s has something (in a roundabout way) good to offer.

It affords opportunities to see things differently. It offers the ability to deepen your level of compassion and understanding. It allows you to meet new people you would never have met if you had gone anywhere else. People who have been on a journey with this disease before you: patients, caregivers, movement disorder specialists, and more. It gives rise to a deeper faith.

However, others are busy coming to and from all the beautiful places you dreamed of going. They tell you about the wonderful time they’re having and from now on you will tell yourself,“Yep. That should have been me.”

The pain of that loss — your dream — may never end. You may never stop grieving for what you’ve lost and continue to lose, for the loss you can experience through Parkinson’s is a truly devastating loss.

However, if you spend the rest of your life (or even a part of it) commiserating that life isn’t exactly the way you had envisioned, then you may never be free to enjoy the very special blessings that this life has to offer. So …

Welcome to Parkinson’s disease.

It’s not what I had planned either, but here I am. I would much rather have been able to stay on course and make my way to The Seven New Wonders of the World, write to you from atop the Great Wall of China — but, alas, my Pilot had other plans. So, having come here before you or perhaps feeling a bit better than you are feeling, I am here walking with you. Welcome. Together under the guide of our trustworthy Pilot, we will forge through this unplanned journey and when we get to the end of this road, may it be said of us … “Well done, good and faithful travelers.”

What Every Person with Parkinson’s Needs to Know

A while ago, I received a note from a gentleman who had just lost his father-in-law to negligence within the medical community. “Negligence” is my opinion, but with the information I was given, I believe that’s what it comes down to.

Before a person goes in for any type of surgery, it has been my experience that the medical staff involved has a decent understanding of the patient’s medical history, including possible treatment allergies. Yet, not all medical personnel are up to date on how a certain therapy will affect someone with a certain disease. And medical staff can’t know every treatment’s interactions or negative effects associated with a certain disease.

Several months ago, I wrote a blog post about Haldol and how anyone with Parkinson’s disease should steer clear of it, as it can be life-threatening to a Parkinson’s patient. I’d like to share one man’s story with you (with his permission) that he communicated to me.

“My father in law lived by himself and was doing fine, alone with PD. He passed away 5/10/10 after entering the hospital 4/28/10, after he tripped going out to his car, to make the 2 hour drive to come and see me, his son in law and his daughter (my wife) and our children.

“A simple 45 minute hip surgery had taken place 4/29/10. They kept covering him with blankets and he always complained he was hot from the shaking, so he would take the blankets off, so they started giving him HALDOL. Why, I don’t know. A day later he was in ICU for 4 days on complete life support. He somehow managed to snap back from ICU and make it back to a regular room, after we found out what Haldol was and told them to stop giving it to him. Even their pharmacist at that point said ‘Yeah, don’t give him Haldol.’ He still had to be on a respirator. I guess the Haldol in pill form was aspirating him also.

“A few days later he died. They said the cause of death was advanced PD. How does someone with advanced PD live on their own, sharp as a tack (this man launched rockets for Nasa and designed aircraft for Boeing, could drive a car fine, talked fine on the phone), but after the Haldol, he became a vegetable and mumbled and didn’t know who anyone was? At least I was there when he died. I am sure glad my wife did not have to see her father dead as she was there with him through the whole thing but had went home for a few hours to rest. His name was John and he is probably the finest, most caring, loving man I will ever have the pleasure of knowing. He was involved in the MJF foundation, as well donating money to help others like him with PD. Thanks for letting me share his story…

“It was your post here that alerted me when my wife phoned from the hospital and asked me to find out what Haldol was. She could not understand the state John was in from a simple 45 minute surgery so she inquired as to what they were giving him.

“I have now been doing my homework. This is what we experienced with John and it amazed me how he could one day be perfectly fine (minus some shaking that his meds controlled fairly well) one day to be basically out of his mind the next day.

“I searched ‘Can PD kill you’ and found this: ‘Just as there is dementia in Alzheimer’s, so there can be in Parkinson’s. This is not a pretty dementia, it is frightening to comprehend. Another problem is that in PD it is coupled with a myriad of other neuromotor problems including possible loss of intellectual capabilities. While this is not death it can be a form of living death for the patient and for the family.’”

If you’re having a procedure done — any procedure — take someone with you. Someone who can speak for you if you’re not able to. Make sure the medical personnel know your allergies, and any other vital information like, “I have Parkinson’s disease and cannot take Haldol!” Get a medical ID bracelet with your medical information on it and/or carry a PD card. As best you can, be proactive in your care. Your life may literally depend on it.

Little Monsters Plan Thwarted with PD

Hollyhock Beauty

I don’t feel very good. My stomach feels nauseous, because my head hurts. My head hurts because I can’t stop grinding my teeth, which only adds to the stiffness in my neck, which makes my back hurt more, which makes me want to yell, “ENOUGH ALREADY!”

But – I am not going to yell for who would I yell to anyhow?

It’s all part of Little Monster’s game: Pick an innocent bystander. Get inside their head. Turn the knob on the basal ganglia a quarter of a turn. It won’t take much – it’s a small, tiny, minuscule, little thing.

And yet, in that oh-so-small, minuscule, tiny, little thing lies the key to Little Monster’s plan. The plan to take over your life. To put a stop to the production of dopamine cells.

No one knows how Little Monster enters. No one knows which knob he turns in his quest to rule your body. But it works.

Production stops – or at least slows – and you begin to feel different. Strange. Off-balance. You stumble. You shake. Your movements no longer belong to you.

You begin to take a pill for this. And then you take a pill for that. And before you know it, you have a handful. You wonder why you’re sad and then all of a sudden you’re not. And when you’re not, you wonder why you ever were. And it goes around and around and around.

Your toes curl in, your legs cramp up, and your hands and arms take part in the plan. You are left feeling pain and disfigurement and despair and loss. And you grieve for what was, for what could have been, for what is now.

But, then you have a good day. A day with sunshine, although, perhaps hidden behind the clouds. You see the rays break through and you turn your face toward them, just to soak in the healing warmth. And they do warm you. They warm the muscles from your head to your toes and you feel like you just might make it through another day, because Little Monster has gone to sleep. He cannot overcome the one who decides to overcome him. And — we can all overcome if we put one shaky foot in front of the other take another step, and smile. Because that’s one thing Little Monster didn’t count on… to see a beautiful smile on a face he turned to stone.