EMERGENCY AND NUMBNESS

In November 2001, we were confronted with a frightening change.

Because I often worked until 2 a.m., Wally let me sleep in the morning, at least until 8 a.m. He tended to awake around 6:30 or 7 a.m., would go to the washroom in the main bathroom rather than the ensuite, get dressed and take Yogi for his walk. The weather had drastically cooled, and he turned on the electric heater in the bathroom. He also liked to read the newspaper while on the throne. That night, before we went to bed, he showed me a blister on his left leg, on the outside of the calf. I asked him how he got it and he told me he didn’t know. Wally seemed in no discomfort. I surmised he must have braised the skin, spread aloe on the blister and didn’t think about it again.

Five days later the blister broke, and I was horrified to see a third-degree burn down to his bone. “How did you do this?” I asked.

“I didn’t know my leg was leaning against the electric heater.”

I stared at him in disbelief. “For how long?”

He shrugged. “Maybe fifteen minutes.”

I was in such shock I couldn’t speak, and then I burst into motion. “We have to get you to Emergency.”

“Why?” he asked. “It’s not that bad.”

“You have to be joking!”

“It doesn’t hurt.”

“Wally, it’s beyond my first-aid capabilities. It may already be infected. We’re going . . . NOW!”

He grumbled all the way to the hospital, telling me I was making a mountain out of a molehill—“ . . . your favorite miracle, moving mountains.”

When the nurse removed the burn dressing and gauze I had wrapped around his leg, she likewise stared at the wound in disbelief. “How did this happen?”

I explained. She turned to Wally. “Are you in pain?” He shook his head. She frowned. Seconds later she returned with two doctors and two nurses. One doctor asked Wally, “Do you have diabetes?”

I answered. “No. He has Parkinson’s.”

The doctor glanced at me with irritation. “This is not Parkinson’s.”

I nodded. “I know.”

They took a slew of blood tests and carefully treated the wound. As they worked, they kept glancing at Wally’s face to see how he was reacting. He sat calmly, with no expression. Within an hour, they had the results of the blood test they wanted. The senior doctor announced, “He does not have diabetes.”

I nodded. “I know.”

“I think you had better get in touch with his neurologist," the doctor instructed. "Your husband will have to come into Emergency every two days to get the wound dressed for the next week, and then we will assign a visiting home nurse to change the dressing every day.”

I did call the neurologist. For once he answered his phone instead of his sergeant-major receptionist. After I explained what had happened, there was a brief moment of quiet on the other end of the phone. “When you take Wally back to Emergency, I want you to ask the ER doctor to do a simple test for me.”

He named it and I wrote it down.

The next time we went to Emergency, I gave the ER doctor the slip of paper with the name of the test the neurologist wanted him to do. He looked at me in a way that made me think that he thought I knew what the test was, but I didn’t. “Under the circumstances, it’s a good idea. I’d like to know why this has happened too.”

The doctor bulked up the sheets around Wally’s waist so he couldn’t see his legs. The nurse removed the dressing, while the doctor broke off a tongue depressor until he made a sharp point at one end. He gently stroked the point along his leg above the burn, and then below it. “How does your leg feel today, Mr. Toews?”

“Fine,” Wally answered.

“Are you feeling any pain?” he asked more specifically.

“No,” Wally answered.

The doctor then showed Wally the broken wooden point. “I’m going to do a little test. I’m going to prick your skin. You let me know when you feel me do it. OK?”

Wally nodded.

I watched as he picked some spots on his skin above the wound and below it, and then he made a sharp jab. Wally lay relaxed. “Remember, Mr. Toews, to let me know if you feel me prick you.”

Wally nodded again.

The doctor picked and jabbed the other leg with no reaction from Wally. I wasn’t even aware I was holding my breath for I understood what was happening. Wally asked me, “When is he going to start?”

The doctor answered, “Just give me a moment, Mr. Toews.” He ran the stick down Wally’s left ankle to his foot and jabbed his big toe. Wally winced.

“What did that feel like, Mr. Toews?”

“Like you stuck a needle into my toe.”

“Which toe?”

“My big toe.”

“Which foot?”

“My left foot.”

“Good, Mr. Toews. That is correct.”

He made the same test on the right leg down to the big toe of his right foot with the same results. Afterward, he held on to the slip of paper where I had written the name of the test and the neurologist’s name and phone number on it. “I’ll call. I’d like to talk to your husband’s neurologist.”

I prompted the doctor in an effort to get his opinion. “This is not Parkinson’s.”

“That’s right. It’s not.” And he offered nothing more.

STYLE AND PERSONALITY

After Wally’s diagnosis in January 2000 and our first years living in Wilmot Creek, his quality of life marginally changed as his daily dosage of bromocriptine crept up. He walked the dog every day, joined the pool club and was soon playing in all the tournaments. He even played some tennis with his longtime buddy Jack, who also had Parkinson’s.

Jack, who went on Sinemet (L-dopa) immediately, developed a routine where he followed the daily recommended exercises for people with Parkinson’s and danced with the ladies every weekend. He didn’t care if his partners were young or old, as long as they danced. His right hand noticeably trembled except when he played tennis or his electric keyboard. He maintained a straight posture, while Wally grew more stooped.

Jack invented a stretching machine for Wally to use to help him straighten his shoulders, but on his own, Wally never used it. Occasionally Wally’s left leg shook, but most of the time his tremors were invisible. He never enjoyed physical work outs. “Work” was the key word. For him, tennis and golf were fun, and they gave him plenty of exercise. His attitude never changed after he developed Parkinson’s.

In the meantime, I was putting in crazy hours working from home. I was afraid to turn down a magazine assignment or editorial project in case I would lose the business. I went through many deadline marathons where I barely slept. We often ate out because when I’m working 60- to 70-hour weeks I lose interest in cooking.

Wally’s very social. He enjoys being around people and interacting, especially in competition, though he would never call himself a conversationalist. He expected that I was also social. I do make public speeches when needed and jump into conversations that interest me, but he never realized I don’t seek to be with people until we moved to Wilmot Creek. I love the sanctuary of my home and working from home fed my introspective nature.

If Wally never had Parkinson’s, I doubt we would have questioned our styles of respite. When he worked late selling real estate or played in tennis tournaments, he never had to feel guilty because I didn’t need him home to entertain me. I welcomed my alone time because that’s when I pursued my dream of writing novels. Many things we did together as well. We were partners on the same path, holding hands but not clinging. We were independent and free, yet spiritually joined. We enjoyed unconditional love. I can’t remember a night when we didn’t go to sleep laughing because of Wally’s one liners. We welcomed life, and we enjoyed it. In our home, we never dwelled on problems. We figured out solutions and moved on. Life was always a forward motion. Consequently, neither one of us is good at remembering what happened yesterday, so we don’t hold grudges. Not usually.

But, as Wally’s Parkinson’s progressed, he began to resent my computer. What he really meant was my time at the computer because it’s time we didn’t have together. As he began to lose more control of his life, being together became increasingly important to him.

SIGNS AND ATTITUDE

Thinking back to the early 1990s, it’s easy to track the signs of Parkinson’s disease developing. Hindsight always makes us smarter, doesn’t it?

I even remember peculiar snippets in the late 80s that may have been warnings of the onset. Wally craved Tim Horton donuts, the sweeter the better. If I had ever known how many he was consuming per day, I would have been alarmed just for the cholesterol levels alone. And salt. I’ve never seen anyone sprinkle clouds of salt on his food the way Wally did, and does. Again I attributed it to his playing tennis almost every day. He needed salt to replace his sweat, but in truth, I rarely saw him sweat or ‘glisten,’ even on the hottest days or after his longest matches.

At some point during this period, his right forefinger began to tremble, but he never mentioned it to me. I don’t know if he told his doctor either. Tennis buddies noticed it was easier to beat him, but said nothing to me or to Wally. One thought his game was getting better and was proud he could beat Wally. Another noticed his serve didn’t have the force it once did, though Wally still won games because he could keep his opponents running. Neither one of these buddies said a word to me until years later, after he had been diagnosed with Parkinson’s. Their playing hadn’t improved beyond his as they thought then; his game had been “off” for physical reasons, so their wins didn’t feel so triumphant.

I was deeply absorbed in writing a novel and never noticed signs of depression until one day his broker called me because she was quite concerned about him. I felt terrible that I hadn’t noticed any changes. We both assumed that the depressed real estate market and the switch to computer technology frustrated him. He was working as hard as ever but not showing the kind of results he normally produced. That would discourage any top real estate agent, and Wally had reigned for a number of years in Toronto.

As I observed him more closely, I realized he wasn’t multi-tasking through the day. Normally he balanced his routine between cold calls for new listings and research for buyers’ preferences before taking clients out on prospective house tours in the afternoon or evening. Often I went with him to agents’ Open Houses. Now he seemed to work more methodically and slower, a task at a time.

It’s easy to blame aging, but is it really? My father was 31 years older than Wally, but he was still consulting for mining companies in his late seventies. In my view, Wally was still a pup compared to Dad.

I noticed these things, but they didn’t sink in until one day, in 1995, we were visiting my Dad, and my brother took a picture of Dad, Wally and me. Days later, when I looked at the photo, I was shocked to see Wally standing shorter than Dad. Wally was six feet. Dad, five-foot-eleven. That couldn’t be right. Since Dad was so much older it made sense that he would shrink, not Wally.

Wally is the baby of three brothers, each nine years apart from the other. But, at age 63, Wally looked older than his eldest brother eighteen years his senior, just as in that picture with Dad, he looked older than him. In my mind, it didn’t make any sense. Yet, when Wally returned from his annual physical exam, he was declared as healthy as a horse. Everything was normal, including his cholesterol levels. I decided I was being a worry wart over nothing and let it go. My conclusion: Everyone’s different and we can’t compare them.

PITY AND SELF-PITY

Our first neurologist told me I would have to be as tough as nails. He explained that people with Parkinson’s give up easily—partly because Parkinson’s creates a depressed state of mind and partly because Parkinson’s robs the person with it of energy. It’s easier to sit and let the world pass by than to try and battle the discombobulating, shaking or hammer-shot reflexes that throw each one with PD off balance.

In Oprah Winfrey’s recent interview with Michael J. Fox on television, she said a caregiver had to be a rock. He corrected her and explained that his wife Tracey Pollan was very fluid. She constantly adjusted to his changes and needs. She was not like a rock at all.

I think Michael and Tracey are a unique couple, even if he never developed Parkinson’s. Although I can picture him arguing that having Parkinson’s changed him because he came to appreciate his family’s love and to live each moment with them to its fullest, I believe his life with Tracey would still have evolved into something special for them because of their mutual interests, talents, styles and personalities.

Had he not had Parkinson’s, he speculates his job would have consumed him and he would have missed out on the time he’s been given with his family. Possibly. When we’re healthy, we take it for granted. We forge ahead, sometimes selfishly. But no one goes through life untested. If his disease didn’t challenge their relationship, something else would have.

As couples, how we evolve depends on our inner spirit, on our approach to problem-solving, on our backgrounds, on our commitment to each other and on our faith.

When Michael first learned he had the disease, he hid it from his co-workers and the public. He went through a long period of denial and often drank himself into oblivion, until he faced the disease and acknowledged it. This struggle is a personal experience for each individual diagnosed with the disease. But, once he went through that phase, he formed his own philosophy for handling it, and he and Tracey’s deep love influenced their way of communicating with each other. As a result, they grew more deeply in love. Oprah calls their relationship a “spiritual union.”

They are an inspirational example, but what has worked for them, might not work for you, or for Wally and me. And as I talk about Wally and me, our way of handling Parkinson’s will not be yours. Every situation is as unique as each individual’s set of symptoms. Not all couples grow closer together on this PD journey. Sometimes the stress kills caregivers before their PD partners. And though we make the promise, “you will never go into a home” to our loved one with good intentions, we cannot always keep that promise.

One approach is common to all, however. If you pity the person you are caring for with Parkinson’s, you enable his or her self-pity. How can I say that? Why wouldn’t you feel sorry for someone with PD? It’s a no-fun disease.

Pity is like pride. It brings out the worst in us, instead of the best.

I’ve seen well-meaning people change the way they see the person with PD. They feel sorry for them and start doing things for them instead of letting them carry on in their own way at their own rate. In other words, they pamper them. Sometimes we pamper because we feel guilty that our loved one has the disease and we don't. But, as soon as we start doing things to make it easier on those with PD, we rob them of their independence and dignity. There is such a thing as doing too much or being too helpful.

When Wally has been down on himself or indulging in what I call a self-pity party, I tell him, “I am sorry you have Parkinson’s, but I am not sorry for you. You are not my child. You are my husband. I am not dressing you. I am not feeding you. You will do everything for yourself. It will just take you longer. You will retain your independence for as long as you possibly can. Is that understood?”

He nods. And then I hug him. “I love you, you know. The neurologist said I would have to kick you in the pants now and again, but don’t make me do it too often.”

REFERENCE:
http://www.oprah.com/article/oprahshow/20090319-tows-michael-j-fox

YOGI AND LOCATION

Looking for a retirement home distracted our inner dismay at this disease invading our lives. We toured through 25 houses at Wilmot Creek, but no matter what house we looked at, Wally had already decided on his choice. It met his criteria for location . . . location . . . location, and it was perfect for Yogi and me, in his view.

The real estate agent finally showed us a home on the sixth hole of the Wilmot golf course that I liked, and it was already decorated to my taste. I could fit our furniture and it had a fireplace. The view was lovely, but not private. I presented my reasons for preferring this house to Wally. He listened and agreed but suggested perhaps we should look some more. He didn’t like the closeness of the neighboring houses, and he was concerned that golfers on the golf course would set off Yogi’s barking. So, we kept looking, but after every trip through Wilmot Creek, he would drive us by the house he wanted. A friend who knew the owners told Wally that they had taken the house off the market but were willing to sell privately if they got the right deal. Wally beamed, and I thought, “Shucks! I’m goobered.”

The friend arranged with the owners to show us the house. Inside it was filled with light from the west, but I saw problems with the configuration of the rooms. The location was ideal for a writer. The back of the bungalow sat overlooking a creek fringed with a canopy of willow trees. You could hear the peaceful gurgles of water skipping over the stones. It was a private sanctuary, and the property was wide enough that Yogi wouldn’t have to be tied on a leash to a tree or to the end of the porch.

As soon as we got home, I drew layouts of the house because my eye “knew” we could not fit our furniture, and it did not have the one thing I was determined we were going to have for our retirement home: a fireplace. Wally bided his time. He had decided what he was going to pay for it, while I thought of design and décor. We went through it three more times. Of course Wally could sell iceboxes to the Eskimos. His defense of the location was winning me over. When it reached the point where he was certain he could get the price he wanted, I began my negotiations. I wanted my fireplace, and since the room designated for my office was much smaller than what I already had, I would need new office furniture. Tick. Tick. And done.

We got the house under the conditions each of us wanted, and the only thing we had included in our thinking to accommodate his Parkinson’s was that it was all one-floor. We never measured a doorway. We did not consider whether either bathroom could be refitted for wheelchair accessibility. We never imagined what would happen if we had to switch to twin beds with a three-foot aisle between for a wheel chair. And worse, we never thought about the day when we would have to build a ramp for wheelchair accessibility into the house. The front of the house perched on a low hill that slid down to the street. You stepped down to the concrete floor of the front porch, which led to stone steps and a rock garden that curved down from the entrance to the driveway that continued slanting downhill.

If you’re thinking, “Were they crazy?” The answer is, “Yes.”

You are looking at a classic example of big-time denial. We were partners in love and partners in denial. And when we first moved into Wilmot Creek, we were happy. The air was fresh and clean. We slept like babies. I no longer suffered from sinus headaches. We went for walks along the bluffs. Yogi made friends with our resident mother fox. The nearness of the lake moderated the temperature in summer and winter. We didn’t experience extremes of heat and cold. In fact, we barely had snow. Our first Christmas was green. Except for the pills Wally had to take, we succeeded in forgetting Wally had Parkinson’s.

COOL HOUSEPLANS FOR WHEELCHAIR ACCESSIBILITY
http://www.coolhouseplans.com/wheelchair_house_plans_home/index.html?mode=fl1#35706

FINE AND SO-SO

Social workers will tell you that it is unhealthy not to talk about the Parkinson’s diagnosis with each other. On the website for the Michael J. Fox Foundation for Parkinson’s Research, there is a section with this advice for caregivers:

"Like any other important development in the lives of two people close to each other, whatever the relationship, a PD diagnosis should be discussed as openly and honestly as possible. Don’t fall into the trap of considering your own concerns as a caregiver less important than those of your person with Parkinson’s (PWP). A Parkinson’s diagnosis is a life-changing event for everyone affected. Talking openly about what you are experiencing can help prevent resentments from surfacing further down the road."

This advice makes sense, but it doesn’t speak for every individual. Wally is not macho, but he did grow up in a Mennonite home where he was not encouraged to brag or whine. Before the onset of PD, he was an amateur A-ladder tennis player. When he came home from a game, he would never announce, “Well, I beat so-and-so,” or “What a terrific game we had!”

When I didn’t think first and simply asked, “How was your game?,” his answer would be, “Fine.” This always forced me to ask, “Did you win or lose?” “Win.”

If his answer was, “So-so,” and I asked, “Did you win or lose?,” you can guess his answer: “Lose.” Eventually I learned what “fine” and “so-so” meant and didn’t have to ask the second-stage question. I call this form of communication short-tongue.

Wally is a fundamental Christian. His faith, private. He has never questioned his childhood teachings. He does not believe in asking God for things, such as money, a house, a car or a briefcase, but in moments of need he will ask the Lord for the wisdom to make the best choice, or the strength to endure, or the patience to understand. He follows the basic rule: God helps those who help themselves. He has worked hard and provided well over his lifetime. He lives for today and never worries about tomorrow. His love has been steadfast and unconditional. Even in my worst moments, and the Lord knows I’m the epitome of imperfection, he has not complained. He’s no saint, however. He’s quite human with a quick sense of humor. At times, it’s difficult to tell the difference between his tenacity and his stubbornness. Both test time and patience. Not his. Mine.

So, it is no surprise that he has never asked, “Lord, why me?” Neither has he blamed God for his having Parkinson’s, not even in his most frustrated and angry moments. “It’s not God’s fault.”

At first, we both had a ‘go-forward’ attitude. When you were at the bottom of the barrel, there was only one way back out—UP. Thus, I learned as much as I could at the time about Parkinson’s and the drug treatments, and he learned to compensate for his growing weakness and sense of imbalance. I told him what he needed to know when he was ready to hear it, and he asked me for help only when he couldn’t do something for himself. I let him struggle on his own because that’s what he needed to do, but sometimes in the morning, I swear our Toy Pomeranian—Yogi—crossed his legs waiting for Wally to dress and take him outside. I could have done it, but that was their routine and I was not interfering. There would come a time when they could not enjoy their morning exercise together.

REFERENCES:
Guide for Caregivers: http://www.michaeljfox.org/living_patientsAndCaregivers_guideForCaregivers.cfm
Research Viewpoints: 
http://www.michaeljfox.org/research_viewpoints_researcherAreaPositionPapers_biomarkers.cfm

SHOCK AND SADNESS

Even though you suspect something is wrong, it is always a shock to hear the words that confirm it. When the first neurologist we visited pronounced Wally had Parkinson’s disease (PD), my first reaction was to hold my husband's hand. He took the news calmly. He had experienced enough symptoms to know what to expect, but he had never shared either fear or concern with me until I raised my own questions. Until then, his approach was: if you ignore it, it will go away. Then if it doesn’t go away, you deal with it later.

Later had arrived. He wasn’t interested in learning about the disease. He had memories of his mother suffering with PD for years. He just wanted to live with the best quality of life he could manage. Besides, he knew me. He didn’t need to learn about the disease or its progress because he could depend on me to do that. The neurologist gave positive advice to Wally, even joked about some medications causing hallucinations—talked about one patient who saw his dead wife’s head travelling along the top of the sofa. “Now, if you see strange things, or hear voices other than your wife’s, you need to tell me about them right away. We’ll have to look at trying a different medication.”

While Wally was getting dressed following his physical examination, the doctor told me it would be my responsibility to learn about the disease and the drugs prescribed. He gave me a list of web sites to visit. “This is not pleasant reading so do it when you are alone. You need to read about all the possible side effects. As the disease progresses, we have to increase the dosages, but there comes a point when we can’t strengthen the medication any more. All these drugs are toxic, and in the later stages, prescribing higher dosages only makes the drugs turn on the patient. The resulting side effects can be worse than the symptoms of the disease itself.”

To Wally, he said, “I’m going to give you less than perfect days so that later on, we can prevent the onset of uncontrolled shaking—dyskinesia.”

The first medication he prescribed was bromocriptine (Parlodel), a dopamine receptor agonist. The agonist enhances the transmission of electrical energy between the neurons to correct the fouled up connection caused by the dimished dopamine the brain produces. The neurologist delayed prescribing the dopamine replacement, levodopa, for another year. His purpose was to prevent the onset of dyskinesia for as long as possible, but a recent study called the Cochrane review has found no evidence to support this claim.

As I browsed through the web sites and read about Parkinson’s medications and progressive disease symptoms, a deep sadness strangled my heart. I refused to let myself cry, and the weight of my sadness increased over the next three months. We didn't talk about the disease. Instead, we focused on living each day as much as possible. Wally was taking his pills. His balance had improved so he could return to playing tennis, and he was a happy camper. I didn’t nag about his retiring, but he couldn’t multitask as he needed to do to remain the successful real estate agent he had been. I looked ahead to moving into a one-floor bungalow that could be adapted for reduced mobility and redecorated the front entrance in preparation to selling our house. I was just starting to repaint the main hall when Wally came home with a MLS listing agreement in his pocket.

“We’re going to move,” he announced.

“Really? To where?”

“Wilmot Creek.”

This was the patch of paradise I dreamed about 40 minutes east of Toronto on the shores of Lake Ontario. “But I haven’t finished repainting the house.”

“Leave it. The buyers will paint it their own color anyway.”

Within two weeks we sold the house and were planning the next stage of our lives.

REFERENCES:
Dyskinesia: Difficulty or distortion in performing voluntary movements, as in tic, chorea, spasm, or myoclonus. The term dyskinesia may be used in relation to Parkinson's disease and other extrapyramidal disorders. Dyskinesia can occur as a side effect of certain medications such as L-dopa and the antipsychotics. The word dyskinesia (dis-ki-ne´ze-a) is logically derived from two Greek roots: dys-, trouble + kinesis, movement = trouble moving.
Bromocriptine: http://www.medicinenet.com/bromocriptine-oral/article.htm  http://www.drugs.com/pro/bromocriptine.html
Cochrane Review: http://en.wikipedia.org/wiki/Cochrane_review

FEELING DISCOMBOBULATED

When Wally first tried to help me understand what Parkinson's was doing to him, he said,"I feel discombobulated."

Not only was his balance affected, he also experienced a sudden reflex motion that reeled him backward. It was like being hit in the chest with a giant sling shot.