Gardening with a Tremor
Roses since 1962. Parkinson's since 1994. The roses are winning.
Douglas Caddell · Macon, Georgia

Come on in · What Parkinson's is · My medicines · Staying busy · What's growing · The Thursday Tremblers · Where to get help · My adapted tools

Come on in

Pull up a bucket and sit a spell. I'll warn you up front that I take the long way around a story. My wife Alma says I could tell you how to drive a nail and make it last through supper. She's not wrong, but I'll try to keep it moving.

I taught shop at the high school for thirty-two years. Woodworking, mostly, some small engines, and a little bit of manners when the occasion called for it. In 1962 Alma's mother gave us a Peace rose for a wedding present, and I planted it by the back steps of our first house, and I've been growing roses ever since. Tomatoes too, because a man has to eat.

In the spring of 1994 I was turning a walnut bowl on the lathe in my garage, and I noticed my right hand was shaking. Not when I was cutting. When I set the gouge down and let my hand rest on my knee, it shook. I figured it was coffee. Alma figured it wasn't, and she made the appointment, and she was right, as is her custom.

The doctor called it Parkinson's disease. I was fifty-nine. I went home and sat in the greenhouse for a long while with the door shut. Then I watered the tomatoes, because they didn't know anything had happened and they were thirsty.

That was five and a half years ago. I'm still out there most mornings. This page is about how, and about what I've learned about PD along the way, for anybody who just got the news and is sitting in their own greenhouse with the door shut.

What Parkinson's is, in plain words

I'm a shop teacher, not a doctor, so here's the plain version, and your neurologist can give you the rest.

Parkinson's is a brain disorder. Deep in the brain there's a small group of cells that make a chemical called dopamine, which helps carry the messages that make your muscles move smooth and when you want them to. In Parkinson's those cells are slowly lost. Nobody knows for sure why. When enough of them are gone, the signs show up:

• Tremor, usually in a hand, usually when it's resting. Mine goes quiet when I'm using the hand, which is a mercy for a man who likes sharp tools.
• Stiffness in the arms, legs and neck.
• Slowness. Buttons. Getting out of a chair. Everything takes longer.
• Balance trouble, later on for most people.

Some folks also notice their handwriting gets small and cramped, their voice gets softer, or their face doesn't show what they're feeling. Alma says I look stern when I'm happy. I tell her I always looked like that.

It is not catching. It moves slowly, over years, and it's different in every single person. Don't read the worst story you can find and decide that's you. The fellow next to me at our group has had it fifteen years and still drives himself.

My medicines, in general

I'll tell you what I take in general terms, so you know what the words mean when you hear them. Do not change a thing about your own medicine without your neurologist. Every one of us is different, and these are strong drugs.

• Sinemet. This is the old reliable. It's levodopa, which the brain turns into dopamine, together with carbidopa, which keeps the levodopa from getting used up before it gets to the brain. I started on it in 1995 and it gave me back my mornings.

• The newer drugs. In 1997 two newer medicines were approved that work by acting like dopamine in the brain. My neurologist, Dr. Marmol, added one of them to my Sinemet last year. Ask about them. They aren't right for everybody.

• "On" and "off." You'll hear these words a lot. "On" is when your medicine is working and you move pretty well. "Off" is when it's wearing off before the next dose, and you get stiff and slow and shaky again. I keep a little notebook of my on and off times for a few days before each appointment so Dr. Marmol can see the pattern. She likes the notebook. I'm a shop teacher. I measure things.

• Pills and protein. The protein in meat, eggs, milk and beans can get in the way of levodopa getting where it's going. My doctor had me take my Sinemet a half hour before meals, and we eat most of our meat at supper, when it matters less if I'm a little slow. Ask yours what's right for you.

Exercise and staying busy

The best thing I've done for myself, outside of the pills, is refuse to sit down. Every doctor I've seen has said the same thing: keep moving.

• I walk every morning before it gets hot, a mile and a half around the neighborhood, swinging my arms big like a soldier on parade. Big movements are good for us. Small, shuffly ones are what the disease wants.
• I stretch every night during the news, and I do it even when the news is bad.
• I sing in the choir at church. It's good for the voice, which wants to go quiet on us.
• I write a page in a notebook every day, in big letters, on purpose.
• And I garden, which is all of that put together: bending, reaching, lifting, carrying, planning ahead and paying attention. A rose bush doesn't care what you've got. It wants deadheading.

Some days are better than others. On a bad day I sit in my rolling seat and pull weeds in one bed and call it a day's work. On a good day Alma has to come out and tell me it's dark.

What's growing this fall

I built my greenhouse in 1991, ten by twelve, cedar frame and corrugated panels, before I had any idea I'd need it like I do now. I've since raised the benches to waist height and put in a wider door for the rolling seat. The roses live outside in the beds along the fence, and the tomatoes go wherever I can find room.

The Thursday Tremblers

Alma and I go to a Parkinson's support group every Thursday afternoon at Cedar Ridge Baptist, our church. The official name is something longer, but we call ourselves the Thursday Tremblers, and the name has stuck. There are about twenty of us most weeks, half with PD and half married to somebody with PD.

Some weeks there's a speaker: a physical therapist, a pharmacist, once a lady who taught us all to get up off the floor safely. Most weeks we just talk. Alden, a retired railroad man, keeps us laughing. Pauline brings a pound cake that ought to be against the law. Ida, who's eighty-one, does her chair exercises harder than any of us. The spouses go off to the next room for part of the time and talk about what it's like on their side of it, which is its own kind of hard, and I'll say here that I married well.

If you're near Macon, write me and I'll tell you how to find us. If you're not, ask your neurologist or call your local hospital. There's very likely a group near you, and you ought to go. You'll learn more in one afternoon than in a month of reading.

We're not the only ones

Alma and I watched the Olympics open in Atlanta in July of 1996, and when Muhammad Ali came out with the torch to light the cauldron, with his hand shaking, holding it up anyway, I'm not ashamed to say I cried in my recliner. And late last year the actor Michael J. Fox told the public he has Parkinson's. He's a young man, and it reminded folks that this isn't only an old man's trouble. Every time somebody well known speaks up, more people go see their doctor sooner, and more money goes into finding a cure. That's good for all of us.

Where to get help

• Your neurologist. If you can, see one who sees a lot of Parkinson's patients. Write your questions down before you go, and take somebody with you.
• The National Parkinson Foundation and the American Parkinson Disease Association both have free booklets and can help you find a support group. Your doctor's office or your library can tell you how to reach them.
• A physical therapist who knows Parkinson's can teach you exercises and tricks for getting up, turning around and keeping your balance.
• Your family. Let them help. I didn't, at first. That was pride, and it was foolishness.

And for those of you who like to tinker, here's how I've fixed up my garden tools so I can keep at it.

Folks who've come by the greenhouse:

since October 1998

Write me a letter: [email protected]
My son Ted helped me set up this page. Any mistakes are mine.
Last updated September 20, 1999