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By Julie Matherly

The first year of marriage can be the toughest, but not for us. My husband Tim and I were like one of the goofy couples on the TV commercials. After overcoming a major loss in our lives, we felt like two middle-aged kids, allowed to play again until an interloper crashed our first anniversary party. Who changed the music? I wanted to know.

After we’d been married a year, I began noticing what looked like symptoms of arthritis in my husband, and sent him to the doctor. After having some lab work and an MRI done, he brought home an uninvited visitor.

“I have Parkinson’s Disease,” he said without emotion. He showed me a book and medication a neurologist had given him.

My mind went blank. I was a PD virgin at age forty-six. He’s calm, so it can’t be too bad, I reasoned, but felt it was something complicated since doctors gave him an entire book about it instead of a pamphlet. At that moment, I could only recall one person I’d known with PD as it’s referred to by the medical community. I looked at my husband and visualized Muhammad Ali’s face struggling to communicate clearly through the disabling mask of the disease. I panicked. What will it do to Tim? I collected all the inner strength I possessed to reassure my partner.

“Everything will be all right.” Will it? I wondered. “We’ll handle it. We’re the Timex Twins remember? We’ve taken our lickings, and keep on ticking. What matters is that we have each other.”

Tim looked at me, adding some unexpected icing to the top of the stale cake we’d just been served.

“It’s OK. After all the sad things that have happened in my life, you’ve already re-balanced the scales between the good and bad things while we’ve been together. I won’t complain about this happening to me now,” he said.

I hugged him, wanting to cry from a combustible mixture of joy and pain, but not wanting sorrow to beat us down again. Inside, I was angry that the best man I’d ever known had been afflicted by a disabling disease with no cure, and asked, Why us? Why now? Silence is not always golden I found while waiting for a response. “You have some serious ‘splainin to do God,” I replied.

No Time for Fairytales

You can judge the seriousness of a disease by the initial reactions of friends and family. The more I tried to minimize the diagnosis and the new medication my husband was taking three times a day to manage, but not stop, the ongoing destruction of dopamine cells in his brain, the more other people maximized the truth. Hearing, “I’m so sorry,” painted a clear picture--there’s no room for illusions with PD. As Tim says, denial is just a river in Egypt.

Trying to fight fear with knowledge, I dove into research, searching for news of an impending cure. None were in sight. I studied the book, 100 Questions & Answers About Parkinson’s Disease, by Abraham Lieberman M.D. I have a thousand, I thought. I compared signs of the disease with my husband’s symptoms thinking that he might have been misdiagnosed, but he had the classic signs--a resting tremor in one hand, a stiff shoulder with rigid arm on one side of his body while walking and a slight change of gait. His doctor had also ruled out other disorders that can mimic PD. I felt like an ignorant fool that I hadn’t known what it was, but was also grateful that I’d sent him to the doctor since treating PD in its early stages can provide longer mobility.

The disease is a sneaky one, beginning years before symptoms appear at which point, it can’t be ignored for long by the patients it affects, or those who love them. PD must be fought with medication, exercise, education and proper nutrition. The fight is not an easy one. I was glad that Tim took the first proactive steps of drug therapy and exercise. “We’re in the Army now,” we said, knowing that we’d been drafted into a war that we’d previously had no interest in. Sometimes, your causes choose you.

No One Expects the Spanish Inquisition

Receiving the diagnosis blindsided us as it often does to other unsuspecting parties. After digesting the facts about what we were dealing with, we took the Monty Python point of view – it could be worse. I was thankful that my husband and I had the same warped sense of humor. How else does anyone get through this crazy life without one? we’d wondered. To help fight our fears, we made a list of worse case scenarios like having an inoperable tumor with only three months to live, and anything else we could think of to ease the emerging presence of PD in our life.

I remembered a younger friend of mine who had lost her young husband in an accident after only being married for a short time. Yes, things can be worse, I realized, giving gratitude for the four years I’d already had with Tim.

While counting our blessings, I also took a big step backwards in my spiritual enlightenment. The Dalai Lama and Deepak Chopra are just a couple of guys with funny names, I thought, as I worried about things I had no control over, obsessing over the unknown called the future. One of the curses of human nature is wanting to know all the answers when we never will. I wished that I could live in the moment like dogs supposedly do. Security is an illusion, so all we can control is how we handle the blows life hurls our way, whether we like them or not. Tim and I had experienced death and loss, but what would happen during the unpredictable course of this frightening disease? I wondered. Only the CEO of the universe knows those kinds of answers, and all the money in the world can’t buy them.

Prognosis Varied

No Cure. Progressive. Degenerative. More words with emotional weight. As if aging isn’t hard enough, try adding a freedom robbing disorder like PD to the mix which can be terrifying – if you let it. Tim stopped reading books about PD when they reached the point of possible future scenarios of extreme immobility and greater dependence on me. I told him I’d read those parts since they’d only stress him out more, plus you don’t have to read too much before grasping what you’re dealing with. PD is like a terrorist—destructive, relentless, and indiscriminate with its attacks. We chose to practice manageable reality, accepting what was happening and taking action as needed, while doing our best to not let it rob us of our precious now, a tricky balancing act to master. We began noticing other PD comrades in the world like Michael J. Fox and the Pope, mining strength from how they managed to lead lives with their disease.

Even with the hopeful stories I heard about, I also read horror stories. I was afraid of what would happen to Tim’s body and brain then reminded myself that could and would have different meanings. Since no one can tell you exactly how PD will end up affecting you, you’re left with statistics, varied life expectancies, and other patients’ experiences—an overwhelming guessing game. To counter that frustration, I began searching for positive news of better medications and promising clinical trials. Since PD affects patients in so many different ways and with varied speeds of degeneration, that left open a possibility that Tim’s might fall somewhere in between in severity. I discovered at resources like the Parkinson’s Disease Foundation and the Michael J. Fox Foundation websites that tremendous efforts are being made to find a cure. Thank you, Mr. Fox, for using your celebrity to increase awareness and funding to defeat this, I thought, clinging to any lifelines I could find.

Hope--Use it, or Lose it

One of the strengths of human nature is the ability to overcome adversity. All we need is the will to do so. When times get tough, we can give up, or find ways to become proactive. I was reminded of this when the same friend of mine who had lost her young husband mailed me a letter recently with the logo HOPE printed in large purple letters on top. Her family had a relative suffering with a rare form of cancer, and they’d organized a campaign to raise funds for the American Cancer Society. She’s one of my heroes.

Maintaining hope during situations that appear hopeless can be the only way to survive those times. On days I get depressed about what might happen, I remind myself that anything is possible, and great improvements have already occurred in treating Parkinson’s. Having hope for a cure for any disease is not foolish, it’s essential to co-existing with one like PD.

During one of our walks one day, my husband told me he was concerned about losing the ability to do things over time, that it felt like he was having things taken from him bit by bit. I suggested a way to try and counter that kind of loss.

“Then, we’ll find something new to replace each thing with that’s taken away—when, or if, that happens,” I said. “No matter what, I don’t want to lose us.”

I felt grateful for that moment with him, hoping for many more years of walks together.

In Sickness and In Health

The vows we took during our marriage ceremony are more meaningful than ever. It’s been one year since Tim was diagnosed with PD, and I’ve realized something. We’ve survived. We’re still here by the grace of the universe, and our life has not changed drastically so far. Yes, my husband has had some gradual physical changes, and addresses those as needed. Yes, we have more doctor appointments. Yes, I do periodic research on PD. Yes, we have things to consider about future living arrangements that we didn’t before. Yes, managing PD is a top priority now, but what counts is that we’re adapting to the new dance steps we’ve had to learn. While absorbing the changes to our everyday life, the PD has settled into our home, becoming as much of a part of our day as deciding what we’ll have for breakfast. And, yes, we’ll be happy to evict the unwelcome tenant from the premises the first chance we get when a cure is found. Until then, we’ll ride the ups and downs the best we can, knowing the future is in bigger hands.

The dance will keep changing, and the fragility of life surrounds us every day. We’re only guaranteed one thing—that each of us will die some day. No one knows what will happen next, we just fool ourselves into believing we do with two-year calendars. All we have is now, and we are here to love, period. Disease, death and loss teach us that.

My husband is the bravest man I know. I gave him a copy of Michael J. Fox’s inspirational autobiography titled, Lucky Man, but I think I’m the lucky one. When Tim worries about becoming a burden, or feels that I’ve been short-changed in the matrimonial relationship because of the PD, I tell him that we don’t keep score in love. We’re here to look after each other like Ethel and Norman in On Golden Pond.

One night, when Tim was sad about what we might never be able to do together because of the PD, I held him close to me.

“Don’t worry. We’ll get to dance all we want in heaven.”

That’s only fair, God, isn’t it, I say, not needing a verbal reply this time.

Posted by PDF Admin on January 25, 2010

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