Going to the Doctor: Mr. Parkinson's is doing well

On Tuesday, Gary and I went to see his doctor, a Tucson neurologist who, in addition to seeing patients, leads the University of Arizona’s Parkinson's research team.

A most personable man with an engaging smile, Dr. Sherman is arguably the best specialist working with Parkinson’s patients in the Tucson area. We are lucky to be able to see him. A couple of years ago, when we were looking for a new specialist, a friend from the Tucson office of the American Parkinson’s Disease Association made it possible for us to get on his schedule.

On the day of the appointment, Gary wrote a list of things he wanted to discuss. Although he is still in good shape for someone who’s had Parkinson’s for over ten years, the activities of life get a little harder each day.

He’s already breathing hard after just getting out of bed and putting on his compression stockings, which he wears for a condition other than Parkinson’s. He has trouble doing the finances unless he works on them in the morning, when he’s not so tired. (For those who don’t know, 20-40 percent of people with PD suffer cognitive difficulties and even dementia.) He’s losing strength in his legs. He’s noticing for the first time the “off” times when his meds aren’t doing their job, but it’s not time for the next dose.

There are more things on that list, and on some days they loom large. But after Dr. Sherman listened to Gary’s concerns, had him walk up and down the hall, and reviewed the notes the intern had taken earlier, he said, “Your Parkinson’s is doing very well.”

Or something like that. On the way home, Gary and I agreed that what Dr. Sherman meant to say was that in spite of worsening symptoms, Gary is doing well.

That’s true. Even though Gary is forced to make adjustments as his condition gradually worsens, he is still able to do things that make his life meaningful. For instance, he’s just discovered that he can bowl pretty darn well—on a Wii machine! That means a lot to a 300-bowler who’s had to give up the game because of balance issues.

A few years ago, Gary and I started responding to the question, “How are you doing?” with, “For where we are, we’re doing well.” It’s always the truth, no matter what our day has been like. It was our way of acknowledging that while we have some difficulties, we have many blessings and always find something to be grateful for.

I wonder if I’ll be able to see life that way later down the line, when Gary’s condition worsens and my days are more consumed with caregiving tasks. Maybe the years of slow decline are meant to give me time to build up my “caregiver muscle.” I hope I’ll be strong enough to take it on when it gets to that point. I hope I’ll always be able to find something to be grateful for.

But for now, Gary and I—and Mr. Parkinson’s—are doing well.

Living with PD—a Caregiver's Perspective

Let me introduce myself. I'm a semi-retired writer and hypnotist, the mother of four grown children, the wife of Gary Morris, who has Parkinson’s Disease. A couple of years go, I was asked to speak at a corporate convention held by Teva Neuroscience, sharing what it was like to be the caregiver for a person with Parkinson’s. I think my remarks on that day are a good was to begin this new blog on caregiving.

I was first a caregiver for my mother, who was diagnosed with Parkinson's in 1982. For the next 13 years, my husband Gary and I provided increasing levels of care for both my mother and my father. The last year of my mother's life she lived with my sister in Utah, who offered heroic service as a caregiver under difficult circumstances. If she were here, my sister would tell you that that year had a devastating effect on her relationship with our mother, who resented the care even as she needed it; on her marriage and on her relationship with some of her children.

Mom passed away in 1996, Two years after her death in Gary was diagnosed with PD. He was 56 years old at the time.

The Gary I married was an athlete. He played football and basketball in high school and was the recipient of the Most Valued Athlete award his senior year. He was the captain of the bowling team while a student at BYU. After getting his MA in 1970, was hired by the Wayzata High School in Minnesota to teach German and coach the tennis team. From then until 1997, his life was very full.

In addition to teaching and coaching, he was active in our church and Boy Scouts of America. He was twice selected as a Fulbright exchange teacher, which meant he traded classes, house and car—everything, in fact, but wife and kids—with a German teacher for a year. He created a student exchange program with a school in Duesseldorf that is still going on almost 30 years later. Even so, he managed to play basketball, softball and tennis, as well as bowl 2 perfect games in league play, which got his name in the Bowling Hall of Fame.

Having grown up a committed couch potato, I couldn't keep up with Gary. Actually I didn't even try, except when we were walking. We really enjoyed holding hands as we walked through the neighborhood and around the small lake not far from our home. We talked about a lot of things during those walks—kids, jobs and what we wanted to do when Gary reached 59—the age for early retirement in the Wayzata School District. Gary had lots of plans for retirement, much of them, as you can imagine, revolving around enjoying the sports he loved so much.

Then in the second half of 1997, things changed. Gary had an emergency appendectomy in August and a bilateral hernia operation in October. Being so used to having his body do whatever he wanted it to, he didn't give himself the necessary time for recuperation and rest after these procedures, and he paid for it. He was constantly exhausted that winter, and spring didn't bring a renewal of his normal vigor. One day when we went walking, I realized to my surprise that instead of him slowing down for me as was usual, I was slowing down for him. Then I noticed that one of his arms didn't swing naturally when walking, which was the first sign of something wrong I had noticed with my mother so many years before.

That was when I insisted that he go to the doctor. His primary care physician referred him to a neurologist, who made the diagnosis. When she told Gary he had PD, I burst out crying. She asked, “What’s the matter? Why are you crying?” and I said, “Because I know what PD does to a person. I know what the end is.” Shock was followed by anger—it wasn't fair that I had a mother with PD and now my husband had it as well. It wasn’t fair that just when we had the kids almost launched and retirement was around the corner, we got tackled by a disease with no cure. But that was the reality we had to accept.

If I were to characterize what the 7 years of caregiving have been like since Gary's diagnosis, I would say it's like being on a journey to a place I don't want to visit. Nor does Gary.

It is journey marked by inevitable losses in both physical and cognitive ability. I've noticed there's a pattern to this. First comes the recognition of some loss. For instance, Gary and I no longer hold hands when walking the short distance from car to grocery store, because he has to use arm motion to “pump” himself forward. Recognition is followed by frustration and anger: This shouldn't be happening, damn it! Then comes grief, which we often suffer in isolation. It’s too sad to talk about what's happening, too scary to acknowledge our fears.

After a while, we hit the acceptance stage. We make whatever adjustments are needed, and gradually we get used to the new situation. Then we enter a time of what I'll call “a new normalcy.” This can last several months, long enough that we get used to it and don't notice the small inroads the disease is making. Then one day it’s suddenly obvious that Gary’s ability in that or some other area has gone down another notch—while we were sleeping, so to speak. Then the cycle of frustration, grief, acceptance, adjustment and new normalcy starts over.

I admit I don't always handle this graciously.

I get impatient when I have to wait because Gary moves so slowly. I get frustrated when I have to repeat something over and over again because he doesn't understand or doesn't remember. I ask myself if this is the first sign of the cognitive impairment that is a part of PD and I wonder what is coming next.
I also get scared when he drives, because it seems he no longer has the reflexes, focus and judgment to drive safely. When I mention my concern, he gets angry—and I know the anger covers his fear of losing autonomy and control. Is it time for him to consider giving up driving? I don't know.

Driving is just one part of a greater issue that I get tangled up over: In what circumstance is it necessary for me to make unilateral choices because safety and health are involved? What choices can or ought I leave open to him so that he retains a sense of autonomy and dignity? I suspect there is not definitive answer. I’ll have to figure it out as we go along.

I get really scared when I allow myself to wonder what will happen to our finances if and when Gary needs the kind of care that a nursing home provides. This fear is heightened by the memory of difficult choices my siblings and I had to make regarding my mother’s care. I don’t like thinking about it and even less talking about it. But we must, so we have conversations we never wanted to have, conversations about end of life issues and hard choices.

Finally there’s the sorrow that comes with loss of companionship. Gary and I don't talk like we used to do. I thought it was just us, until I heard other women in the Parkinson’s caregivers group comment on the lack of conversation in general and especially the kind of sharing that leads to emotional intimacy. Sometimes I feel so alone. I try not to get down, but when the reality of what is and the sorrow at what we’ve lost hits me broadside, there's nothing to do but cry. Or as I put it, howl to the moon.

In all of this, Gary has his own fears, frustrations and sorrows. But life goes on. So I go on… and Gary goes on… and the disease goes on.

Yet there is much to love about our life together. We have four delightful children who love us and come to visit often. We have dear friends who give us a chance to play and laugh and forget our concerns for a moment. We have access to wonderful doctors, medicines and other resources. We have a lovely home—with a recreation center just down the street where Gary plays billiards every day.

And every day, we look for the little miracles of life—a splendid cactus flower that lasts only one day, the sound of children’s laughter, the smell of rain in our Arizona desert. On most days, we feel that in spite of our challenges, life is good.

I discovered the other day that Gary reads a poem by Dawna Markova when he’s depressed or feeling sorry for himself: He says it helps him to get his priorities straightened out so he can live with Parkinson’s Disease without letting it overwhelm him. I find it quite inspiring and I hope you will, too.

I will not die an unlived life.

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible;
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit.