Mr. Parkinson, An Update

032It’s been a while since my last update about life with Parkinson’s disease. As far as health is concerned, I’m doing well. My drugs are still effective; I walk 4 miles a day (with my trusted cane), meditate and stay as far away from stress (good and bad) as I can. However, I have noticed a slight tremor in my left hand as opposed to my main tremor in my right hand. There are some differences in its development for I remember all too well how my right hand started to shake. Though PD is Continue reading Mr. Parkinson, An Update

Mr. Parkinson, “We All Fall Down”

5EA2FE752FwalkingIt’s been a while since I’ve talked about Parkinson’s Disease. The good news is I’m on my same basic medication I wrote about in Part 8- Medications… the Road to Levodopa and Part 9- Medications… All in Good Time. Though I know I will probably not decrease the amount of medication I take daily, its good not to have to increase. Continue reading Mr. Parkinson, “We All Fall Down”

Part 10- P is for Parkinson’s or Pain in the ….

imagesbutterflyImpulsive/compulsive

Having Parkinson’s disease comes with its share of pain, from my right hand that shakes too much to my feet being sore from walking with my toes curling under. But some things are just a pain in the mental ass.

Parkinson’s is caused by the loss of dopamine which controls movement. I take the drug Pramipexole, a dopamine agonist that does not make dopamine but fools the brain into thinking it is dopamine. I also take levodopa which makes dopamine. Since my diagnosis, I have gone to see a neurologist every three months or so. One of the questions I’m routinely asked is; do I gamble, drink or shop excessively?  It seems that both of the drugs I take have side effects of which impulsive and compulsive behavior is an issue. Continue reading Part 10- P is for Parkinson’s or Pain in the ….

Part 9- Medications… All in Good Time

astronomical-clock-5706_640“Tell me, what is it you plan to do with your one wild and precious life,”                                                                     -Mary Oliver

“All in good time, the bad times will be gone, ”                 -Ron Sexsmith

By the summer of 2014, this was the state of my mental and physical condition. My tremor was still constant; it had not decreased or slowed down. Indeed my hand shock as much as it ever did. My movements were slower because I was more conscious of the way I moved. I could think now to pick up my feet, move my arms, and walk erect. But as you can imagine I felt awkward and looked the same. To walk and have to constantly be mindful of it; like remembering to breathe… stop and the outcome is not so good. Stop being mindful of my movements and down I go. Continue reading Part 9- Medications… All in Good Time

Part 8- Medications… The Road to Levodopa

images (11)

“In every walk with nature one receives far more than he seeks,” -John Muir

Fresh from my diagnosis in October of 2012 for Parkinson’s disease, I began a new life, one filled with the mystery of drugs. I say mystery because, before my diagnosis, aspirin was the most potent drug I had ever taken. Now I was to go on a learning spree of medications, side effects, and biology. And yes I had not favored science while in school so this education was a long time in coming. Everyone says you can’t escape; now it was all coming back to me.

Continue reading Part 8- Medications… The Road to Levodopa

Part 6- Tremor… I’m All Shook Up

“Be yourself, everyone else is already taken.” -Oscar Wilde

“On the outskirts of every agony sits some observant fellow who points.” -Virginia Woolf

The program director for Raleigh Research called me up the other day and asked if I’d partake in a two-day overnight clinical trial to test a device which sticks to your skin much like a nicotine patch. It measures motor symptoms such as balance, stiffness and slow movement, to name a few, their decline is the result of Parkinson’s disease. But the most obvious motor symptom it will measure is ‘tremor’; the consistent uncontrollable shaking of one hand, as is the case with my right hand.
Continue reading Part 6- Tremor… I’m All Shook Up

Part 5- Meds… The Art of Symptoms and Side Effects

“The Light shines in the darkness, and the darkness has not overcome it,”  -John 1:5

It was the medical treatment with an emphasis on medication, exercise and mindfulness that came to my rescue from the deep-sea of cognitive and physical disparity. Those who knew me at the beginning of this ordeal and see me now comment on how much better I seem. With excited eyes they infer that the doctors must have made a mistake, the diagnosis was wrong, you’re not sick! So when they ask how, I tell them the truth, “I’m on drugs.” Suddenly they get this quizzical look on their face, not knowing what to say. I reassure them, “it’s still the same me shaking under this mask of medication.  I’m in control with a little help from my friends… for now”. Then it suddenly occurs to me, what an absurd statement that is; am I ever really in control. Yes, on some days you have to look a little closer to see if I have Parkinson’s at all. But it’s there and never really gets too far away, tied at the hip it seems constantly waiting for the next adventure. Continue reading Part 5- Meds… The Art of Symptoms and Side Effects

Preface

Some time ago whilst I was sitting in Starbucks, a woman noticed the tremor in my right hand and asked, “do you have Parkinson’s disease?” I looked at her a little surprised captured in my tremor and answered “yes.” She proceeded to ask questions of which I answered freely. Most of the questions centered on PD and the fact that she has is a distant relative who was just diagnosed.

I get this kind of attention a lot, which I don’t mind, either people ask questions or those too embarrassed to ask. However, they reveal a slight smile with a look in the eyes and you can tell they know. And rest assure, that whether you ask outright or you’re too embarrassed to ask, you have a few things in common; either you know someone with Parkinson’s or know somebody, whom you feel might have it. That someone might be you!

So the relative in question was a sister-in-law who upon hearing her diagnosed, stayed in bed for two weeks, too upset to get out of her room. And here is this woman looking at me and seeing two extreme reactions to the same diagnoses. I know in my mind I was thinking the same thing. Upon leaving, she told me she would pray for me of which I thanked her. This was probably the first seed of inspiration to write about Parkinson’s.

So the gist of my story is this: I am like these individuals and all others who know. And depending on what day it is, I can go to extremes. So my therapy is to write and share these words and just maybe this will give those with a close connection to this disease a rhyme or reason as to ‘why’ and move forward. As T.S. Eliot wrote in ‘Little Gidding’:

“We shall not cease from exploration,
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”

I didn’t set out to write about Parkinson’s figuring there was enough being said and written. But the more I told my story to friends the more encouragement I received. It wasn’t enough that others have written about this disease and their relationship to it, what mattered was, my story wasn’t out there for I had a voice and an obligation to write it.

For their understanding I want to thank family and friends for being there and patience in the fact that my life had changed and I now moved a little slower. To my fellow bloggers who encouraged my creativity in the blogosphere and to Mirja who always had an unending faith in my abilities as a writer.

Thank you,  JC                                                                     

Part 2- Diagnosis…Down the Rabbit Hole

320px-Down_the_Rabbit_Hole“All changes, even the most longed for, have their melancholy; for what we leave behind us is part of ourselves; we must die to one life before we can enter another,” -Anatole France

At first I made a doctor’s appointment because of my diagnosed pinched sciatica nerve in my lower back and wanted a second opinion but things had changed; I now suspected that I was experiencing certain symptoms not associated with nerve damage.

The office set my appointment for the morning of October 29, 2012; asked to arrive early to complete the new patient forms. As I arrived, I sat in my car in silence, the situation seemed too surreal and at the same time permanent. I knew I would see this place again. October is my favorite month and I couldn’t help but think of those lines by Thomas Wolfe: Continue reading Part 2- Diagnosis…Down the Rabbit Hole