Encouragement through H.O.P.E.

Submitted by: bbell 10/19/2009 2:45:37 PM

In 2002 I wrote a book called H.O.P.E. It was developed primarily to provide encouragement to people who had recently received the shocking diagnosis of Parkinson’s disease.

Shocking to me is that the Northwest Parkinson’s Foundation has printed 10,000 copies of the book, and another 5,000 will come off the press this year. I never dreamed that this simple guide would be so popular.

I get email from people with Parkinson’s from all over the world. I even got a call from a young sailboat skipper in the South Pacific who was heading for Australia. He had read the book and wanted my assurance that the disease would progress slowly.

I couldn’t give him that blessing. I did tell him he had to find a way to exercise, even if the cabin was no more than 20 square feet.

Lots of people ask me what I would change in the book if I were to come up with a new edition. Probably very little. In the last six years my Parkinson’s has progressed. But my beliefs about how to live a full and happy life have remained the same. 

Help. Optimism. Physician. Exercise. These remain the keys to a good quality life. They have become even more critical as I face a new stage of the disease. Let me tell you what I mean. When I wrote the book, I had just finished the 200-mile bike ride from Seattle to Portland. I probably couldn’t do that today. Parkinson’s has sapped some of my energy and recovery time.

I still ride a street bike, but at 8 mph and for no more than an hour at a time. If I ride for longer, my legs cry out for me to stop. I become less stable and run the risk of weaving into the path of a car. Before, I could gut it out. These days, extra training doesn’t seem to build extra endurance. My maximum performance level is lower than it was six years ago. What am I doing about this decline? I’m living with it. I could quit exercising, but that would be giving in to the Parkinson’s Devil (the Satan who lures people into the Lazy Boy and causes the muscles to become stiff and immobile). Instead, my route is 10 miles rather than 50.

I used to be able to high jump over six feet. But I can’t do that anymore either. I’ve lowered the bar. And when I find that 8 mph is too fast, I’ll lower the bar even more. As long as I have the balance.

 My balance has affected my skiing. Six years ago you could find me on the upper slopes of Crystal Mountain. Last year I had to give up skiing because I couldn’t respond fast enough to the varying terrain on even the simplest slopes. I was falling, which was not like me. I figured if I continued I might wrap my body around a tree or crash into my wife on a downhill run. I took on a new attitude. I decided I wasn’t going to call it giving up something I loved, but I was going to replace it.

I replaced skiing with a new laptop computer. I love to write, so while Peggy is skiing, I am busy with my replacement. Frankly, the laptop doesn’t have the same thrill as a schuss down a hill, but it surely is a lot warmer. I’ve talked to others who have had to give up something they love and proposed that they think of replacing it. The thought is that if you close out activities without replacing them with others, you may wind up with 24 hours a day and no excitement in your life. And that spells Depression with a capital D.

When I wrote H.O.P.E. I was taking what I might call a modest amount of medication. It consisted of taking my medication three times a day. In 2008 I am up to five times a day and an increase in certain medications of more than 300 percent.

 The added medication is necessary and seems to work for me. Otherwise, my “off periods” would be more intense and frequent. I would spend more time bent over like a man carrying a load of bricks and shuffling like someone with chewing gum stuck to his shoes.

I’ve read about some drugs becoming ineffective if used long-term and in large quantities. But I don’t worry about that. I’d rather be functioning well at the moment than sitting in a “wear-off ” funk day after day. Fortunately, my body responds well to medication even though I never took any pills of any kind before this Parkinson’s thing.

My doctor and I work as a team. I feed her the changes that are occurring. She listens well and seems to always recommend the dose that does the trick. Together, we are constantly monitoring the dosage.

If you don’t have a good talking relationship with your doctor, I strongly urge you to get a second opinion. The mistake all of us can make is to compare our progression and symptoms to another person with Parkinson’s. The disease does not have a universal pattern.

I am 78 years old and was diagnosed 13 years ago. At support groups I hear people ask if the medication that Joe is on will work for Martha. I see others figure if he’s had it for three years longer, then they’ll be like him in three years.

That’s not how it works. I make this preface before I go into what’s going right for me at this time. I’m still as active as I was six years ago. I drive my wife’s new Prius (even at night). I go to Husky football games (climbing to the upper deck). I usually walk two or three miles a day (a little slower than before).

I go to evening activities (“Jersey Boys” was terrific). I like to go out to eat (Chinese food is my favorite). I like to travel (Peggy and I go to Maui twice a year). I enjoy company in our home (I make a popular Manhattan that seems to attract people).

I still attend meetings (the Northwest Parkinson’s Foundation board is a great group). I read a lot, do crossword puzzles, compose by the hour on the word processor (though Peggy thinks my poems are corny).

These activities are possible because I am religious about taking my medication precisely on time. I have seen far too many Parkinson’s people in trouble because they don’t take the timing of their medications seriously.

I think of my body as being like a car. Most cars run on gasoline. My body runs on dopamine. If a car runs out of gas, it won’t move. If I don’t supply a pill that activates dopamine, then my body runs out of gas.

When I do forget to fill the dopamine tank, the results are mindboggling. I sputter to a stop. But if I can maintain a steady supply of dopamine in my body, then I can operate on all eight cylinders. By the way, I have another book title in my mind. It’s Living with Parkinson’s When You’re 100 Years Old. But it’s on the back burner and will have to wait a bit for publication. 

Hal Newsom and his wife Peggy live in Seattle, WA. Newsom is author of H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson’s People as well as a booklet for caregivers. Both are available from the Northwest Parkinson’s Foundation.