Making You Aware
Parkinson’s Disease first introduced itself to me when I was in the Philippines. My companion and I paid a visit to a married couple from church. I remember walking into the tiny makeshift house, first meeting the healthy, approximately sixty-year-old wife, and then meeting Parkinson’s victim, the husband. His mouth gaped open, saliva dripping in a stream, denying the will of the man who would control it. This was a man who had raised a family and supported a wife; this man did relatively well compared with the other impoverished families in his neighborhood. But he could no longer control the muscles in his mouth.
I remember his walk. It was a shuffle. His feet didn’t lift off the ground. He held one arm at the elbow with the other arm. He mumbled some unintelligible words. We played at communication for a while, before he left the room in exhaustion.
Next, my companion and I commiserated with the wife. She drowned us in the tragedy of becoming the caretaker of a very needy man who is nothing like the one who once helped her raise the children.
That day, in that little house, meeting Parkinson’s Disease for the first time, I never anticipated getting reacquainted ten years later.
My dad has Parkinson’s Disease.
It is April and April is Parkinson Awareness Month.
What does Parkinson’s Disease do to a man who is an always-doing, always-helping, likes to be self-sufficient kind of man? It changes him.
When my dad was a student at BYU he passed a room of practicing singers and decided to investigate. Despite having minimal training in vocals, he gave the group a few performing pointers. Somehow he become their producer and director and formed a group called “The Sounds of Freedom.” They made records and gained national attention when they got to perform on The Ed Sullivan Show.
When I was a kid my dad worked for the Boy Scouts of America. He was a hyperactive kid-man. But this didn’t stop him from supporting his family of seven. He worked multiple side jobs and, having had a carpenter as a father, was always renovating one part of the house or another. He also found time to help us with school projects and other things. My dad liked to keep busy.
His creative work in the field of non-profits led him to a position with the American Cancer Society. He continued to challenge mediocrity, create new visions and lead in unexpected directions. My dad became a CEO of this well-known organization.
And now he has Parkinson’s Disease. Since he lives in a different part of the country, I only see him a few times a year. It is striking to find a man so different in many ways from the one who visited me the last time. Fortunately, medical advances and American prosperity has protected him from most of the symptoms that overcame the Filipino husband I visited with over ten years ago.
My mother talks about the personality changes she witnesses. She has had to switch plans for their retirement. They are now selling their dream home early in order to move into a smaller one before my dad becomes completely incompetent. Or worse.
All diseases are horrible, but people expect Cancer. We expect Heart Disease. We expect Diabetes. We do not expect Parkinson’s Disease.
April is Parkinson Awareness Month. If you feel inclined, you can click here to learn more and make a donation.
8 Comments »
RSS feed for comments on this post. TrackBack URI
Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>
April 30th, 2006 @ 9:49 pm
I lost an awesome friend to this disease, and my fiance lost his grandmother.
I’m so sorry to hear of your dads stuggles, I hope they find a cure someday.
May 1st, 2006 @ 7:49 am
Noell,
Parkinsons Disease has received some needed exposure through the efforts of Michael J. Fox and Muhammed Ali over the last several years. But, as you say, it still does not carry the recognition that cancer and heart disease do. There are, of course, many other diseases and conditions that get little, if any, public airing.
Numbers are important. Generally, as the cost of developing new drugs and other treatments are so huge, most of the pharmeceutical companies are not willing to spend the time and effort working on cures for low profile ailments. Some such research is being done through various universities – often in conjunction with one or more of the drug companies.
One of my wife’s uncles succumed to ALS or Lou Gehrig’s Disease back in the 90s. Joan had 9 uncles and 1 aunt (imagine being the only girl amongst 9 Italian brothers.) Mike, the ALS victim, was the first to go. Like Parkinsons, ALS robs sufferers of muscular control. Its effects are devastating and almost always fatal. It took Uncle Mike in about 18 months. One of the few people I know of to survive at length while being afflicted with ALS is Stephen Hawking. Nevertheless, it is obvious that it has taken its toll on him physically.
Since then Joan has lost both of her parents and all but 3 of her uncles. Two were victims of Alzheimers. Her father had a series of strokes. The others all succummed to a variety of heart ailments.
We are all too painfully aware that something is going to get us all, eventually. What is so frustrating is how so often we see announcements about some new advances in drugs and treatments for our various maladies, but utlimately, they are rarely heard from again. All too often, the results turn out to be far less effective than hoped.
I do believe that the most promissing area of research for cures lay in genetics. Also, if it weren’t for the idiot Bush and the right wing religious crazies, we could be seeing some results from stem cell research.
Whether any of the current work will succeed in time to help any of us is up for grabs. But, we must, nevertheless, maintain hope and support the efforts of the very scientists that we talk about in these blogs.
TLS
May 1st, 2006 @ 9:03 am
Something in your post really caught my attention, the line: “but people expect Cancer”.
Isn’t that a strange statement of our culture, that we expect cancer? When most cancer is due to the toxic lifestyle and industry of of culture… I know it gets pawned off as we are living longer.. but thats a smoke job… we get cancer and so many of us get cancer, since this lifestyle, and economy is toxic to our health.
And it goes beyond that I suspect 80% of these dread dieases are based upon toxic lifestyles.
We are a reflection of our lifestyle so I find it strange people don’t flip this around and create a lifestyle healthy based upon ourselves. Curing the dieases is one angle, but the real hope, the real difference will only happen once our culture matures in the way it lives in harmony (lack there of) with the enviroment and itself.
I hope your father does ok with the Parkinsons. Best sincere wishes for you and your family.
May 1st, 2006 @ 10:27 am
It will take time ,but the numbers I’m seeing regarding smoking and environmental awareness are beginning to turn somewhat> Bushes policies don’t help much but people are starting to see through him and his cohorts . None to soon…. We all need to tend to our own bodies .Eat right , get plenty of rest and above all avoid smoking and alcohol.
May 1st, 2006 @ 1:17 pm
Fran,
You forgot – drink a lot of water, take two of these and call me in the morning.
TLS
May 1st, 2006 @ 1:56 pm
Sounds like your father is a wonderful man. I’m sorry to hear about his illness, but thank you for your personal insight. It does make this disease seem that much more *real* to me.
It sounds devestating like all degenerative illnesses are. I’m glad he has your mom to help him through this, and I’m glad your mom has you. It seems it will take a family effort of love and support for all.
May 1st, 2006 @ 3:06 pm
Noell,
I am so sorry to hear that about your dad. Let me know if you need anything — seriously. You wrote a beautiful posting.
Sadie
May 1st, 2006 @ 11:38 pm
Noell,
Earlier tonite I happened upon a blog site that you might find of interest, http://www.dooce.com/. This is a woman, a former morman, now married, a mother and living in Salt Lake City, who also turned away from the church. She is quite outspoken, but you might find her ruminations of some interest. I don’t know if you would have anything to say to each other, but what little I read was, at least entertaining.
(Sorry about the link thingy. I still haven’t mastered that bit of bloggery.)
TLS