My Published Articles for ViewsHound: Robin Williams and Parkinson Disease

Friday, August 15, 2014

Robin Williams and Parkinson Disease

photo from smh.com.au
The recent death and suicide of actor and comedian Robin Williams had touched the hearts of millions of his fans, all over the world. I am one of his admirer and his death has also left me heart broken. Yesterday news about his early Parkinson disease reminded me of an article I posted in my blogs about this malady that has also a personal meaning and effect in my daily life presently. Here's the article in case of you have not read it. It was posted on April 13, 2013.

Six months ago, my beloved wife of 56 years( Macrine) was diagnosed to have first stage Parkinson disease, commonly called PD. She has been experiencing typical symptoms of the malady with involuntary hand tremors, slow body movement ( walking), unbalanced gait, softer voice, difficulty swallowing and had a couple of falls during the previous year. We have to purchase a cane, to prevent another fall. Our doctor prescribed her Sinemet ( 25/100 carbidopa/levodopa) to be taken twice a day. Her first two weeks after taking the drug, she suffered nausea, vomiting, hallucinations and disturbed sleep, but her hand tremors stopped. As of today she is taking the drug twice a day and the nausea had stopped and the hand tremors controlled. She still walks very slow and her voice is very low and have a hard time swallowing. She needs my assistance in changing clothes, bathing and slicing her food into small pieces. She easily gets tired and from what I read in the Internet, there will be a time when the drug will no longer be effective. In the future as the disease progressed she will need palliative care and home nursing assistance. My wife's PD has a genetic component. Her father had PD and one of her aunts on her maternal side had also PD during their senior years.

Today, I called my Federal Insurance provider Blue Cross-Blue Shield-Anthem of California. The benefits coordinator informed me that home care visits are limited to only 2 hours per day and 25 visits for the calendar year. It has to be authorized by a licensed physician. I have a deductible of $350 per year with the insurance paying only 65% of the cost.

Currently, I am reading two books on PD which I found useful as follows:1). I have Parkinson: What Should I do? By Ann Andrews, Basic Health Publishing, 2011 and 2). Ask the Doctor about Parkinson Disease by Michael S. Okun and Hubert H Fernandez, Demos Health, 2010.

The following information from the National Parkinson's Foundation, I found very informative .

In the United States, 50,000-60,000 new cases of PD are diagnosed each year, adding to the one million people who currently have PD. The Center for Disease control rated complications from Parkinson’s disease as the 14th leading cause of death in the United States. Worldwide, it is estimated that four to six million people suffer from the condition. There is hope, however, as scientists work towards a cure and make progress in identifying the best treatment options for patients.

Parkinson’s disease (PD) is a neurodegenerative brain disorder that progresses slowly in most people. What this means is that individuals with PD will be living with PD for twenty years or more from the time of diagnosis. Parkinson’s disease itself is not fatal, but complications could occur and can cause death. There is currently no cure for Parkinson’s; however, investigations on animal models, gene therapy and stem cells research are undergoing so those with PD can have a good quality of life.

Treatment approaches include medication and surgical therapy. Other treatment approaches include general lifestyle modifications (rest and exercise), physical therapy, support groups, occupational therapy and speech therapy. Recent studies have indicated that a treatment is better than no treatment. In other words, medications and therapies may modify the progression of Parkinson’s disease. Michael Fox and Muhamed Ali are the two world famous personalities known to be suffering with PD.

Michael Fox and Mohamed Ali

Do you have a relative with PD? Were you the primary caregiver? Could you share your experiences as a caregiver?
Reference: www.parkinson.org ( National Parkinson Foundation)

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Guest Article from Susan Creamer Joy

In The Silence, by Susan Creamer Joy.

Today's guest article is from Susan Creamer Joy. Susan is one of my favorite authors in the ViewsHound community. Susan writes, draws, paints and cobbles together art from found objects making a variety of creations from jewelry to religious shrines. She frequently sports burns on her fingers from her soldering iron, paint on her palms and ink under her fingernails, but her hair is usually combed. When she is not losing time in the creative vortex of her studio, she is likely to be putting her knowledge of metaphysics and esoteric principles including Tarot, numerology, astrology and graphology to good use in consultations. Her children are grown, her husband still works and her four dogs believe she needs serious help. The title of her article is "A Matter Of Love And Death". Thank you Susan.

By the time they reached my bedroom door, I was already sitting up – my stomach ratcheted in the tense grip of an unnamed anxiety; my pillow, unburdened of my drowsy head.

To this day I cannot explain how I heard them coming up those stairs in their bare feet or how I knew that my father struggled to hold his composure as my mother unnaturally clutched at the folds of her dressing gown and followed him through the dark just a little too closely.

As the wooden groan of those old stairs tore into my bones that morning like a hacksaw, all I could see between the predawn shadows was the letter I’d written just hours earlier to my boyfriend, Chris, propped against the lamp on my desk across the room awaiting an envelope.

I had not slept well. It was late November and there had been so many changes since the middle of August when he left for the Air Force in Texas to begin basic training and I began my third new school in as many years.

The conspiracy between fate and the last surge of the Vietnam draft had broken apart the every-waking-minutes of our two-year union with unceremonious indifference. All that night my sleep had been infested by difficult dreams and by the illogical fear that truth and reality were merging into a darkness only a martyr could grasp; and at sixteen, martyrdom seemed reasonable only for the nuns among the poor in Bangladesh

I tried to remind myself that he would be home on leave for Thanksgiving in another few days. It was the only tether to calm I could find, but reviewing the facts offered little relief from my baseless fears.

Chris had been girding his pacifist sensibilities preparing to fight in an unpopular war that had not yet slaughtered its last innocent. I was hovering just over the line of inclusion at an exclusive girl’s school – missing him – and finding myself at odds with these young women and their attachment to propriety and with the prep-school veneer that blinded them to the fact that they were no better than anyone else.

Neither one of us was coping well with the worlds into which we were respectively summoned, and although we both knew that the best hope for any future together depended upon our individual successes apart, it was far from comforting most days.

But in spite of our discomfort, we each did our best; and, of course, there were the letters: Thin, plain-paper sheets with row after row after row of inky blue words penned with the intensity and awkward locutions of a love learned too soon. It had come down to just that little, but without them, I would have had nothing.

Chris was learning to fly. I was learning to drive, and both of us were aching to transport our souls to an earlier time through the hallowed intercourse of memories and dreams. Of course, as with all progress, there was the positive element: We were both clean and drug-free for the first time in years.

Now, without pretense, both healthy cognition and sincere motivation surfaced regularly in my psychology and prompted me to care about myself and to arbitrate against all temptation for a better standing in the world, in school and in my own eyes. I even did my homework.

No longer was I escaping today but, instead, living for my day of escape. Lying still in the dark of my room, I listened to the slow, padded footfall of my parents approaching and looked to the floor and to my history book half hidden beneath the nightstand where I’d tossed it the night before. Even in this early morning dark I could make out the swirls and stars in colored marker and the bubble-formed letters that spelled C H R I S in soft, juvenile curves on the torn book cover I’d fashioned out of a brown paper grocery bag.

I vaguely remembered throwing it there somewhat hastily. I had been doing my homework when a sense of urgency struck and I realized I had not written him as I promised I would and glancing at the clock, I noted it was nine-twenty-three. Why that mattered I had no way of knowing in that strange moment, but within hours, it would be one I would never forget; and although I was becoming drowsy and still needed to finish my work, I felt beyond reason that my letter to him could not wait.

So, I wrote. I would always write. I would always be there. He would always be there.“Suzi."It was my name spoken in the smooth and familiar voice of my mother, although weighted and slow, her head bowed to her chest almost as though she were speaking only to herself.

"Suzi.” She said it again, this time with sharp gravity, like a chisel against stone.

As if on cue, I leaned forward, flanked now by my parents who were sitting on either side of my bed.

I had been waiting for them. I don’t know how. I didn’t know why. The lights in my room remained off, but it seemed that the darkness clung more to them than to me, as though they were holding it there – away from me to give me enough light to see through the next moment. They were crying. My father was crying. My father. “Suzi. We have something very, very bad to tell you." Chris has been in a car accident." And he was killed."

If the world moved forward from that moment, I could not know it. f there were air around me worth breathing, I could not take it in. And if there were another sound beyond the leaden bellow of my own raw grief, I could not hear it.

"Who am I going to talk to? Who am I going to love?” I wailed. Who will love me? In that sodden moment violated by the intrusion of a predawn light that had no business rising, everything I ever believed about happiness, hoped for in life, trusted in or held as my own was annihilated.

After that – there was no after that. After that came months of hollow redundancies that would inform my way of being in the world for years to come. A serial commitment to waking up each morning, remembering he was gone and dedicating the remaining hours to forgetting. To that end I would try anything, drink anything, ingest anything, inject anything. It was a slow and arbitrary suicide by indifference.

Many years later, at 25 years-old and in the midst of a pharmaceutical free-fall leaning dangerously close to terminal, I discovered that I was expecting a child, and after a decade of forgetting, I remembered. I named him Griffin after the legendary winged lion, a symbol of the divine because what he inspired and the miracle that he was, were nothing less. I remembered and I loved again, and I went on to marry and to the gift of two beautiful daughters.

Today my son is struggling not to drown in the same well of drug abuse and apathy that almost swallowed me – his great, divine wings clipped by his own hand; and while it is up to him to restore his place in the sky, I will do my best to help provide an open runway.

In the meantime, I will continue soaring for both of us; bequeathed as I have been, with a determination to fly from a boy whose ragged fate precluded that dream.

Death took one young man from me once upon a dark time. If it has any intention of coming for this one, it will have to go through me. And trust me, it will be in for one hell of a fight.

Note: If you enjoy this article, please let me know.

Friday, August 15, 2014

Robin Williams and Parkinson Disease

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