CAREGIVING: FEARING THE UNKNOWN

When your loved one is first diagnosed with Parkinson’s disease, there is an immediate reaction of horror within both of you. This gut reaction stems from disinformation you’ve collected in your subconscious over the years, and it is reflected in your fear of what you think you know and of the actual unknown.

Some people will immediately quiz the doctor. What is it? What happens? How do you treat it? Others take the news and internalize it in the beginning stages of denial. “Uh-uh. Not me. I don’t want it, and I’m not going to have it. I’m outa here.” Some react with rage: “How dare my body do this to me!”

There are as many reactions to the diagnosis as there are people in the world. Each response is personal. Each is natural. And fearing the unknown is common to us all.

For the one diagnosed, there is the fear of intolerable pain and personal embarrassment along with your fear of loss of independence/dignity and personal control. There is also the fear of losing intimacy with your partner and sexual attractiveness.

The care-giving partner also has fears. The prime one is a daunting prospect: you immediately recognize that your own life is forever limited by the disease afflicting your loved one. How daunting depends on your personal health, personality and circumstances. By your nature, you may be more predisposed to be a more effective caregiver than others who live with compromised health or independent interests.

The most important thing to understand is that there is no wrong way or right way to be a caregiver.

That’s difficult to grasp at the outset because many caregivers immediately experience guilt similar to survivor guilt. Why? Why not me instead? Sometimes it does seem easier to be the afflicted one rather than the observer. But it’s not true. There is nothing easy for everyone involved.

Those dominated by guilt act with pity. They overcompensate by trying to do too much. They become advocate, nurturer, nurse, and servant. They put themselves last in the act of providing tender loving care. Similar to a workaholic, they learn their service is never finished. Their sole reason for being becomes the dedicated care of the one with the disease.

Even those caregivers not dominated by guilt periodically feel it and are driven by it. This is why movement disorder clinics provide social work services as well as physiotherapy for both the patient and the caregiver. They are there to help you learn to cope, to suggest practical resolutions to the frustrations and problems that arise. This includes forming group sessions that allow you to vent, perhaps with other caregivers where no patients are present.

Those with the disease can also meet with others like them where they can share their experiences and talk about ways they’ve learned to handle difficulties, such as getting out of bed in the morning. A friend of Wally’s lives on his own with PD. He enjoys demonstrating how he rocks his body to get enough momentum to pull himself up and if he’s stiffer than usual how to roll off the bed and use the bed to pull himself up to a standing position. Patient groups can laugh at themselves as they talk about their day-to-day mishaps and ways to compensate.

I personally don’t find venting in a group helpful. To me, dealing with the disease depends on acceptance. I’m looking for solutions, not concentrating on the frustration. If I describe something that has happened, it is to give information that will lead to a helpful suggestion to change my way of dealing with the situation. It can be from communication to physical assistance.

For instance, if you don’t know how to brace your back properly when you try to lift someone in a seat or into a more comfortable position in the bed, you can wrench muscles and hurt yourself so you can’t do it any more. By not watching how you word something, you can destroy the patient’s self-esteem, and that can lead to unpleasant power struggles between you.

Mixed groups are also beneficial because some other person with PD who is more of a communicator might explain something your partner can’t to help you learn more about what their needs are and what would be a more effective way for you both to deal with a particular problem.

I am hoping that as we carry on with this journal, you will present questions, share ideas or offer helpful tips that have worked for you. Why not start with today’s post? How did you react when you first heard the Parkinson’s diagnosis? What did you do? What was your first or worst fear?

REFERENCES:
Basic Tips for Caregivers
http://www.allaboutparkinsons.com/seven-helpful-tips-for-caregiving.html
http://www.pdf.org/en/caregiving_fam_issues
Caregivers' Home Companion--worthwhile reading
http://www.caregivershome.com/news/article.cfm?UID=2209
Slowing the progression of Parkinson's disease
http://www.sciencedaily.com/news/mind_brain/parkinson's

CAREGIVING: AFTER THE ORIGINAL DIAGNOSIS

I am digressing from our ongoing story of Wally’s experience with Parkinson’s disease and going back to the initial period when you and your loved one first learn he or she has the disease. This came to mind when a dear friend’s husband was recently diagnosed with PD.

She called me because they had been given the names of three drugs their neurologist will likely prescribe, and one of the comments the neurologist made had her concerned. They were warned that once he started to take the drugs, he could be irritable. That immediately frightened her because of her heart condition. Her tolerance level as a caregiver was compromised. She was already worn out dealing with his shifting moods.

First off, I’m not sure why the neurologist focused on this one side effect more so than any other. Every person’s metabolism is different. No one responds the same way as another. Plus, for some, there are preconditions such as rheumatism, arthritis or heart, for which they are already being treated, and the addition of Parkinson’s drugs complicates the person’s response. In some situations, serious medical problems can result if taken together with other drugs, including cough medicines or natural/herbal supplements. If a person has cancer, for instance, mixing Parkinson’s drugs with chemo therapy could be deadly. One of the agonists, selegiline, could escalate the progression of an untreated cancer or, on its own, actually trigger melanoma.

For some strange reason, a vast number of people afflicted with Parkinson’s are highly intelligent, multi-taskers. One of their frustrations is discovering they can’t juggle the variety of activities or thinking levels they once did. They become irritable because they are frustrated with themselves. They don’t understand what has changed, why they can’t cope the same as they always have.

Unfortunately, the onset of depression is also another product of Parkinson’s, not just a result. The person you love may suddenly become reclusive. Even going to see a movie becomes a big deal. Staying home is safe and unchallenging. I recall Wally would tell me to go with our grandchildren to the theatre. He didn’t want to go with us. “Someone has to stay home and look after Yogi.”

The dog needed a babysitter. Of course I was flabbergasted.

Once the diagnosis is made, then many things that may be irritating you about the changes in your loved one begin to make sense. I learned that change became threatening to Wally so if I told him about a social engagement or our going out somewhere in advance, he would fret. By the time we were to go, he would have himself so worked up the worst scenario was bound to happen. I learned not to tell him of certain things in advance because, taken by surprise, he would handle it with no problem.

With my friend, she and her husband are overwhelmed with the diagnosis, never mind trying to absorb all the information and implications of side effects. My advice to her and to you is:

1. The person who has the most knowledge about Parkinson’s drugs is your druggist. Make your druggist your best friend. Before the person with PD takes the first pill, make sure you have discussed all pre-existing medical conditions with your druggist to double check that other meds taken with the Parkinson’s won’t set off worse problems. Also make sure that the dosages aren’t too high. On any new drug, people have to build up their acceptance level.

2. Reduce the protein in their daily diet because it interferes with the effectiveness of the L-dopa (Sinemet) or dopamine replacement drug. It doesn’t mean you cut things such as meat out of their meals. It means reduce serving size and increase vegetables and fruits.

3. Encourage the person to eat one bar of chocolate per day, and the darker the chocolate the better. In fact, the person with PD may crave chocolate. Why? Endorphins, which give a feeling of pleasure, and serotonin, which acts as an anti-depressant, are naturally found in chocolate. They work together with the dopamine replacement to offset feelings of depression. I understand that drinking milk at the same time as you eat chocolate cancels the good effect of the chocolate. For people who are allergic to cocoa, this suggestion won’t work. Instead, they may suffer terrible migraine headaches.

4. Take one day at a time. Eventually, the person with PD will regain confidence in tackling more social events, but until then, avoid their fretting over all the imagined possibilities by telling them on a need-to-know basis.

5. Expect that some of the problems experienced before the diagnosis, such as irritability or depression, will actually improve or smooth out once the person starts on their daily pill regime. Yet, be aware that any change that upsets the person, such as dizziness, excessive sleepiness, drop in blood pressure, imagined vision or violent nightmare, can be side effects and must be reported to the neurologist immediately.

6. To prevent confusion in administering the pill schedule (and it can be quite a chore managing what pills are taken when), have the pharmacist prepare the pill dosages in bubble packets. Each one is labeled with the time the pills are to be taken, the name of the pill contained along with the matching description and the individual pill amount.

7. Exercise is pandemount to godliness for people with Parkinson's. To prevent their muscles from stiffening they need to exercise every day. Expect resistance to this suggestion, but those who follow it actually help delay progression of the disease. For those couch potatoes you can't motivate to exercise, then the alternative is to make sure they get professional massages as many times a week as you can afford.

REFERENCES:
Selegiline:
http://en.wikipedia.org/wiki/Selegiline
http://www.drugs.com/pro/selegiline-tablets.html
http://www.rxlist.com/eldepryl-drug.htm 
Risk of melanoma when taking Selegiline:
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697046.html
http://www.drugs.com/ppa/selegiline-hydrochloride-l-deprenyl.html
Chocolate:
http://longevity.about.com/od/lifelongnutrition/p/chocolate.htm

INNOVATIVE AND PRACTICAL

We moved June 1, 2005. To this day I don’t know how I survived that month except for sheer grit. Work pressure was at its worst. I would either get up at dawn and work in my office until lunch, go over to the other house and paint or wallpaper and come back for dinner and then work in the office until midnight, or later, OR work in the office all day and spend the night catching up at the other house.

For me, in other renovation projects over the years, the first week was the worst for muscle stiffness and soreness, but this time the agony just kept growing from day to day. The only thing that kept me going the last week was strapping a magnet flex pad to my back. My brother, a dear friend and our kids added their help to the movers on moving day.

Wally endured a nightmare of “freezing” as he tried to walk between stacks of cartons piled like narrow walls, first in the old house and then in the new house. I directed everyone to get furniture in place as quickly as possible, but it’s impossible to move and unpack boxes in one day. We did manage to get the kitchen and living room settled first and moved most of the boxes blocking passage to the bedroom to the den.

The main bedroom was 14-feet long, and it allowed twin beds with three feet between. Again I made a major mistake in the beds I selected. I thought Ultramatic beds would be the best answer. At first they seemed to be, but as time progressed, Wally could not get out of his bed easily, even if grasping a pole we installed. He preferred sleeping in his lift chair in the living room because he felt he had more control. Though the Ultramatic's raised position seemed to help my breathing through the night, the continual pressure on my lower back began creating problems. Neither of us slept soundly. I now realize I should have bought Wally a hospital bed and eventually replaced his Ultramatic with a rental hospital bed with a special comfort mattress to prevent bed sores.

The adaptations to the main bathroom made a huge difference. Just a simple thing like a raised American Standard toilet helped my stiff knees and the extra bars and supports meant Wally didn’t have to ask for assistance to get up on his own. Now, when we have to use a regular toilet, it’s always a shock to sink down to the lower seat. The standalone cupboards were only one-foot wide. Light switches were also lowered. The raised sink allowed knees underneath, and the shower could be converted into a drive-in by removing the short step. The shower design was more in keeping with an open Eurpean style. We used a glass-block enclosure and didn’t need a shower curtain. The shower walls were reinforced so not even an earthquake could budge the grab bars from their supports.

We had yet to install the smaller 4-foot by 10-foot bathroom. Originally, we planned for a half-bathroom, but one of my freelance clients, who published an HVAC magazine, proposed I write a showcase article about bathroom renovations for the handicapped. The publisher of Toronto-based Contracting Canada magazine wanted to feature advertisers who wished to donate product. To my utter amazement (and clearly the publisher’s salesmanship), Safety Bath, Nuheat, Moen, Toto Toilets/Washlets and Ponte Giulio (Italian manufacturers of grab bars) as well as Panasonic Whisper Fans were eager to contribute.

For this project, a walk-in tub was the best solution, and the dimensions of Safety Bath’s ‘Serenity’ model were perfect—30 inches high, 36 inches from front to back and 34 inches wide. Other comparisons also made the ‘Serenity’ tub ideally suited for this installation as it holds same amount of water as a regular bathtub (larger ones may need a larger water heater because of greater capacity); fills faster and drains faster than larger walk-in tubs; has a wider door that swings outward for easier entry—others are designed with a narrow door that opens inward, and this could prevent you from quickly removing someone in an emergency; has a low two-inch step in to tub; works as a soaker tub with 4-jet hydro-therapy action, 12-jet warm air massage and an optional heated seat; weighs 120 pounds and is Canadian-made from durable, easy-to-care-for fiberglass versus heavier steel used in some imports; accommodates and is primarily designed for the limited mobility of people using walkers—wheelchair users require a lift device; and finally comes complete with pop-up drain valve, MOEN pressure-balanced, scald-guard taps and MOEN hand-held shower. It’s ideal because hydro-therapy has been shown as beneficial in helping people with circulatory problems, arthritis and sore muscles.

The raised Toto toilet for handicapped users and electric Toto ‘washlet’ seat cover automatically cleans the private parts that may be difficult to reach. The Ponte Giulio grab bars come in colors you can co-ordinate with any bathroom décor, but the most significant difference is that they are covered with an anti-bacterial coating and have a special flange system to provide secure installation into any wall surface. One style of their grab bars raises to the wall when not in use and lowers when needed.

My resulting articles were posted on the Disabled World and Industry Canada web sites in addition to the feature that appeared in the 2006 Contracting Canada winter magazine issue. With these renovations, we were prepared to keep Wally at home until his final days, but our circumstances drastically changed in the winter of 2008.

RENOVATING AND ADAPTING

Once I drew the layout of the house from the measurements I had taken, Wally looked at my plan and suggested that we close the sale of our house one month after we took over the house we needed to renovate.

In some partnerships and marriages, both like to cook. That would mean adapting the kitchen to wheelchair use as well, but Wally rarely made tea, let alone coffee, so the kitchen was my domain. I didn't have to consider him when I redesigned it.

For the rest of the house, I searched the Internet for wheelchair accessible building specifications. The first thing to estimate was the size of wheelchair Wally would need. Wheelchairs differ with the shapes and sizes of people who fit them. Wally had sufficiently shrunk from his six-foot frame that he could fit a small wheelchair. These are narrow enough to pass through existing 33-inch doorways.

If he had needed a wheelchair wider than the doorway, we intended to remove the frames and mount sliding doors that move on tracks (similar to a barn door) above the entrances to the bathroom and master bedroom. We were also working with the smallest room size possible for a wheelchair-accessible bathroom—8 feet by 8 feet. Between the sink and entrance to the shower, there had to be at least a three-foot turnaround space for a wheelchair to rotate. This meant installing conventional two-foot-wide bathroom cupboards was out of the question.

Most pictures of bathrooms built for wheelchair use looked sterile and institutional. I was determined that our bathroom would not remind anyone of its principal use. There was no second bathroom, and for older couples, one bathroom could be a disaster if one couldn’t wait for a turn to use it. Luckily, the den was on a solid foundation and the crawl space linked to the piping under the main bathroom next to it, so, on my plan, I took four feet off one end to create a second half bathroom. We also decided that we would make the exit for the wheelchair to the deck and build a ramp down the side of the house to the driveway.

Flooring is another major consideration. Hardwood isn’t always the best answer. Whatever is chosen must be able to withstand the weight and repeated motion of the wheels over the floor. Tiled floors in a bathroom for an unsturdy person are risky. They are too hard and inflexible. If someone falls, the resulting injury may be worse than it needs to be. I selected a wheelchair-resistant cushioned flooring for both bathrooms.

Next I wanted to engage a contractor so I could be guaranteed full-time work on the new place during the month before closing the sale of our house. I interviewed ten contractors. To each of them I showed my plans. A few immediately told me what I could and could not do—no outside-the-box thinking for them. Others didn’t like the idea of my working with them. Too many had such high quotes that it made my sell-high, buy-low plan unaffordable. A group of four handymen disbanded over arguments about how to implement my plan. I was getting discouraged until I interviewed the tenth contractor. He seemed more open-minded, showed no hesitation in letting me become involved in doing some painting and wallpapering, but what impressed me most was, at the end of our discussion, he asked to take my plans for a few days. He wanted to do some of his own checking before he got back to me with a quote.

During those few days, he visited area long-term facilities to see their standard solutions and asked myriad questions. When we next saw him, he not only had a quote we could afford, he had great adaptations to suggest to my plan.

EXAMPLES OF EUROPEAN-DESIGNED
WHEELCHAIR-ACCESSIBLE BATHROOMS.

THINKING AND PLANNING

By Christmas of 2004, Wally was enjoying reasonably good days. We could go out for dinner, socialize with friends and enjoy a simple quality of life as long as it didn’t include long trips. This meant we could not travel to visit our daughter and her family, who live more than two hours drive away. They did and do come to see us often. That Christmas was great fun. Wally enjoyed playing family games with our grand kids and son-in-law while my daughter and I spent some mother-daughter time alone. The three children especially enjoyed playing with Yogi. They had him racing back and forth fetching his ball.

For Wally, the six weeks of hell had passed like a blink in time. They were behind him and he was marching forward, but I couldn’t forget. During the nurses’ daily visits, we often talked about what was ahead and the adjustments we would have to make.

Looming over my head was the house. What were we thinking when we bought it? I blamed myself for not being more realistic. The more I looked into the costs of what needed to be done, the more I worried. Now we didn’t have the savings it would take to renovate this house to accommodate the progressive stages of Wally’s disease.

Wally doesn’t believe in asking God for anything. Everything that happens in his view is a result of our choices, and we have to live with them. I, on the other hand, had nowhere else to turn. “I don’t know what to do, God. I just know I have to do something.”

As I was driving along one day, the mantra “location . . . location . . . location . . .” flashed across the screen of mind. I stopped the car. If Wally wanted the house because of its location, someone else would buy it for the same reason. We had kept it in a pretty state. Sell high, buy low, and use the difference to renovate for wheelchair accessibility and mobile limitations. “Thank you, Lord! That’s a great idea.”

This time I would measure every doorway and hallway. I went to a friend in Wilmot Creek who was a real estate agent and explained what I needed to do. She immediately saw the possibilities. Not only that, house values in Wilmot Creek had increased, to which I countered, “Which means we’ll have to pay more.”

“Not necessarily,” she explained. “Some houses have good bones but they don’t show well. Do you want to look at a few?”

Of course I did. She showed me five possibilities, and like Wally often did with his clients, she left the one she suspected I would like to the last. The first four left me cold but I could see potential. I had already conceded that location could not be a consideration this time, but the fifth house took me by surprise. As soon as I walked in, before I had measured a doorway, I knew the house was for us. There was lovely light flowing through it. I looked past the dismal wall colors and trailer-park kitchen, and headed straight for the den. Low and behold, it overlooked a golf course at the putting end so missed balls would not end up breaking our windows.

I then went home to Wally and explained the plan. At first he balked. He hated moving at the best of times. That forced me to go back over each problem we faced through the six weeks when he lost most of his mobility. I then went over the expense to change the existing house to what we needed as opposed to the possibilities by moving to a place that had a structure better suited to renovation. “I promise we won’t go into debt. We’ll buy low and sell high, and the difference will pay for the renovation.”

He looked at me with some skepticism and then nodded in agreement. “I doubt it will cover everything. But what concerns me most, you’ll be on your own. I won’t be able to help you.”

“Just inspect things as they go along. You can tackle the contractor if you see he’s neglecting something.”

“That’s true. And I want to go over the costs with him.”

“That’s good,” I agreed.

“Have you found a contractor you like yet?”

“No. First I have to draw a plan.”

Then he grinned. I had been drawing house plans since the day we met 24 years before. I was ready for this move.

DEPRESSED AND DEBILITATED

During the six weeks Wally was off any agonist to accompany his Sinemet (L-dopa), he descended into a personal hell. His usual good spirits failed, and he cried, begging me to let him go if God was ready to take him because he didn’t want to live like this.

No one seemed alarmed that Wally was not responding to Sinemet on its own, but I expected him to be up and dancing. I had read the story about Morton Shulman, Canada’s most famous pathologist who developed Parkinson’s and was the first to import L-dopa from Europe to treat his own condition. He wrote how it felt as if he had been blessed with a miracle drug. The Parkinson’s symptoms disappeared. Of course, in time, the miracle degenerated into a myth as the higher doses of L-dopa to keep the symptoms at bay turned on him and he developed involuntary shaking or dyskinesia.

The only ones to see Wally lose his mobility and spirit were his visiting nurses and me. Each day one came to dress his infected legs. When the antibiotic didn't work, our family doctor switched to a stronger form. I don’t remember the name.

Wally was so weak he needed help dressing, getting out of bed, walking to his lift chair, going to the washroom and feeding. He was a prisoner inside his own body. The “mask” appeared. When he tried to speak, there was no expression, just his eyes eerily following me wherever I was in the room. Signs of dementia were the most unsettling. He became forgetful and didn’t seem to understand when I explained something. He would ask the same question over and over again. That ripped my heart apart. I could take the physical breakdown but not the mental and spiritual.

One good thing. The shower was so small that if I managed to get him into it, he couldn’t fall over, just slide down on his knees, but then I would have the problem of how I was going to lift his deadweight. So, showers were only taken in the slim window of the day when the Sinemet seemed to take hold for short periods. Most embarrassing to him was becoming incontinent, but through this period the usual constipation resulting from stiffening muscles that could no longer contract properly changed to bouts of diarrhea. Wally experienced the loss of his dignity and quality of life, and it nearly destroyed this proud man of mine.

At first I held up well. I was amazed at my strength and resourcefulness. But, working in my home office and being at his beck and call 24/7 took its toll. During the third week, fatigue set in. By the end of the sixth week, I had to face reality: I might not be able to keep my promise to keep him at home.

Just as I had run out of ways to motivate him to keep fighting, one of his ‘pool’ buddies visited him. As Bob spoke, I sat in amazement. He spoke the words that Wally not only needed to hear, but I had prayed would reach him. Bob said, “I felt God directed me to see you today, Wally. I had no idea what I would say, but I know the Lord, and I knew He was using me to tell you what you needed to hear.”

Wally was amazed and humbled. His self-pity party was over. “I promise I will keep fighting,” he told me. He not only soldiered on then; he has ever since.

At the end of the sixth week, his infection cleared up, and his neurologist started him on low doses of the agonist, Mirapex (pramipexole dihydrochloride). It was a relatively new drug. The first person I consulted was my good friend the druggist. It was he who confirmed the young doctor’s suspicion that the Permax was likely the cause of Wally’s legs swelling and infection because of the way the drug attacks the circulation system.

The first thing he explained was that most of the agonists were based on the same chemical foundations. The differences were only subtle shifts in the mix of chemical components. He warned I would have to watch Wally’s legs for signs of inflammation or swelling as the dosages of Mirapex were gradually increased.

Together we read in the pharmaceutical reference book listed under the manufacturer, Boehringer Ingelheim: “MIRAPEX tablets contain pramipexole, a nonergot dopamine agonist . . . believed to stimulate dopamine receptors in the striatum [brain] . . . Pramipexole is rapidly absorbed, reaching peak concentrations in approximately two hours . . . Food does not affect the extent of pramipexole absorption, although the time is increased by about one hour when the drug is taken with a meal . . . Urinary excretion is the major route of pramipexole elimination, with 90% of a pramipexole dose recovered in urine, almost all as unchanged drug . . . Epidemiological studies have shown that patients with Parkinson’s disease have a higher risk (2- to approximately 6-fold higher) of developing melanoma [cancer] than the general population.”


Under Patients’ Information:
“Patients should be instructed to take MIRAPEX tablets only as prescribed. Patients should be alerted to the potential sedating effects associated with MIRAPEX tablets, including the possibility of falling asleep while engaged in activities of daily living . . . patients should neither drive a car nor engage in other potentially dangerous activities until they have gained sufficient experience with Mirapex® (pramipexole dihydrochloride) tablets to gauge whether or not it affects their mental and/or motor performance adversely. Because of possible additive effects, caution should be advised in taking other sedating medications or alcohol in combination with MIRAPEX tablets. Patients should be informed that hallucinations can occur and that the elderly are at a higher risk than younger patients with Parkinson’s disease.

“There have been reports of patients experiencing intense urges to gamble, increased sexual urges and other intense urges and the inability to control these urges while taking one or more of the medications that increase central dopaminergic tone, that are generally used for the treatment of Parkinson’s disease, including MIRAPEX tablets. Although it is not proven that the medications caused these events, these urges were reported to have stopped in some cases when the dose was reduced or the medication was stopped. Patients may develop postural (orthostatic) hypotension, with or without symptoms such as dizziness, nausea, fainting or blackouts, and sometimes, sweating. Hypotension may occur more frequently during initial therapy. Accordingly, patients should be cautioned against rising rapidly after sitting or lying down, especially if they have been doing so for prolonged periods and especially at the initiation of treatment with MIRAPEX tablets.”

More great things to look forward to, I thought angrily. But without the medication, Wally would end up a basket case, so I breathed in and prayed, “Over to you, God. Only you know what’s ahead.”

RED AND SWOLLEN

It was Canada Day, 2004. Wally asked me about his legs. He didn’t want to wear shorts because of the way they looked. Again I was alarmed and cursed myself for not insisting he show me his legs before we went to sleep every night. His legs were swollen, the skin was flaking off and an angry redness spread from his ankles to his knees.

Luckily, the Emergency Room was not backed up and a young doctor looked at his legs within half an hour. Again, Wally was asked if he had diabetes and again he was tested for it. The result came back negative. The doctor scratched his head. When I explained to him about Wally having Parkinson’s, I also gave him the name of the drugs and the exact dosages he was taking. To my amazement, this doctor produced a new carry-round gizmo, typed in the drugs and a few moments later exclaimed, “Bingo!”

He showed me the text from a pharmaceutical reference book. The side effects of Permax produced the condition in Wally’s legs. But, he cautioned me, if we took him off the Permax cold turkey, he couldn’t predict the outcome. It would have to be his neurologist’s decision. In the meantime, ER started Wally on an antibiotic and dressed his legs. They also assigned daily visits of a home care nurse to monitor his condition.

Wally’s legs did not improve through July, August and September. In September, the neurologist made the drastic decision to take Wally off the Permax. Left on Sinemet or L-dopa alone, Wally went down to 10% mobility and the next six weeks became a nightmare. The neurologist did not want to add another agonist until the Permax was completely out of his system.

BETTER AND BEST

If I don’t get information fast enough, I tend to search on my own. I wasn’t content to make an appointment for Wally with the neurologist and then wait to see what he had to say when he saw us. I wanted to know what the lack of feeling in his legs meant. I sat down at my computer, typed in “legs insensitive to pain and loss of feelings in legs” and searched. That was three generations of computers ago so I don’t have the site saved for reference now. Because I am blogging, I decided to go through the same exercise and see what pops up for your reference. It may not be the same as I found then—information and knowledge have changed over the past eight years.

Sure enough! My search this time produced myriad possibilities. I could not focus on anything specific as I did in 2001, when one disease jumped off the page to my attention: Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS). I can still relive the dread and horror I felt.

In the morning I called the neurologist. His receptionist answered and to my surprise she did put me through to him. I told him what I had found on the Internet. “Don’t go there,” he said.

“I have to. I’m the caregiver. I have to know what we face.”

“I know you want to be prepared, but I suspect it’s the Bromocriptine. Wally is on the highest dosage I have ever prescribed for a patient. He hasn’t shown side effects and I wanted to keep him off the L-dopa for as long as I could.” The neurologist cleared his throat. “Bring him in. I’ll test him.”

After he examined Wally, he said, “We’ll ease back on the Bromocriptine and introduce low doses of L-dopa or Sinemet to replace the dopamine he's not producing. Then we’ll work up the strength until we get a balance between the two.”

Because of the severity of Wally’s burn in his leg, he had to be very careful, but since he didn’t feel any pain, he was gung-ho to play pool with his buddies at the recreation center. For three months, visiting nurses dressed his wound. One warned me, “as the nerve ends in his leg begin to heal, he may be in excruciating pain.”

I was prepared but it never happened. So, the lack of feeling in his legs remained a mystery. It also meant we had to become more vigilant because if he banged himself or developed infection in his leg, he wouldn’t know.

In six months, Wally’s leg was completely healed. No scar tissue. No depression. Just a faint scar. Amazing.

My work increased. Wally spent most of his days playing pool and he still took the dog for walks. About this time, our physician wondered if it might be less of a hassle to seek a neurologist closer to where we lived. Our city neurologist's receptionist—the sergeant major as I called her—was making it difficult for our family doctor to make appointments for us.

So, we switched over to a different neurologist. He was a milder version of House. I suspected he was burnt out from lack of sleep and too many patients because he was the only neurologist in the area. After he tested Wally, he explained Bromocriptine had been around since the 70s. He suggested we start Wally on a new agonist to go along with the L-dopa: Permax.

The neurologist started Wally on low doses and worked up to what he called his “tolerance” level. Over the winter, Wally’s quality of life improved. His days smoothed out between the peaks and valleys when the meds wore off and he experienced “freezing,” an inability to move his feet. A narrow or cluttered space could still set off “freezing” but for the most part, he felt regenerated. The combination of L-dopa and Permax seemed to work until July 1, 2004. Then we were back in Emergency.

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.