“If you get the inside right, the outside will fall into place.”
When I wrote ‘Private Tremors of the Frozen Man’, I introduced a litany of symptoms prevalent to Parkinson’s disease that most people didn’t know or realized were just as prominent as a tremor in the hand. As time goes on, I discover new symptoms, some I experience and other I may or may not ever play host to. All in all, it’s an education for me and a vicarious one for you, the reader. As I’ve often said, when I was diagnosed back in October of 2012, I didn’t know anything about Parkinson’s except for the handshakes. Now I can see someone on the street and pretty much can tell if they have Parkinson’s or not. Continue reading The Frozen Man- Go to the Mirror
“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
It’s been some time since I’ve written about Parkinson’s disease. Not that it doesn’t want to be heard as it does make itself known but I tend not to give it a voice and I really should give it it’s due for awareness is the best medicine. This post also comes as a special request. So to my benefactors, here goes.
As with many other disorders, especially cognitive, outside appearances can take on an air of normalcy, like nothing is wrong. But as in the adage, don’t judge a book by its cover, don’t judge a Parkie just by Tremor. There’s more that goes on than one wants to admit, hidden in the depths of a brain running low on dopamine. Continue reading Private Tremors of the Frozen Man
Every experience, no matter how bad it seems, holds within it a blessing of some kind.
The goal is to find it. -Buddha
It’s been awhile since I’ve updated this blog as to my conflict with Parkinson’s disease. I say ‘conflict’ for every day is like fighting the dragon; win, lose or draw. Since I last wrote about PD, I’ve attended a 28-day clinical trial and moved to St.Augustine, Fl. which required me to find another neurologist. And since April is Parkinson’s Awareness Month, this seems like a good precursor to next month’s activities. Continue reading Mr. Parkinson Rides Again
The darkest stretch of night is just before the dawn. So one cannot help but be enthralled by the silent majesty in a cold dark winter’s morning; Brother Moon sits overhead in a pool of stars with Venus, the Virgo queen, in her disguise as the morning star, hovering close behind just as the eastern horizon gives birth to the first panes of light emerging from the sun. Continue reading Winter’s Morning Sky
It’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
“Our task must be to free ourselves… by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty,” -Albert Einstein
I keep a card in my wallet from the National Parkinson’s Foundation that list my name and address, family members to call in case of an emergency, medications I take, drugs I should not take and so on… On the back, it states that I have Parkinson’s disease which could cause me to move slowly and have difficulty standing or speaking. Now here’s the clincher and most of you will think I’m making a joke. Underneath the above statement, printed in capital letter it states I AM NOT INTOXICATED. Now why would it say this? Continue reading Parkinson’s and the Mindfulness of Stress
“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
“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
“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
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