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Sunday, April 25, 2010

Happiness is a Bicycle

Spring is here and with it comes the usual restlessness that afflicts us all. Michael is no exception. Though his times of wellness are no more frequent right now, when he does feel well his thoughts run to his usual springtime activities of former times.

Michael was an avid cyclist right up until a few years ago. A confirmed though quiet environmentalist, he always used public transit to travel to work and in the warmer months, out came his bicycle. The three homes we've lived in together have all been chosen for their proximity to public transit routes and place of work. Even in our small town on the outskirts of Ottawa there is a single bus that winds its way into town twice in the morning and back again twice in the evening, and throughout the winter months my husband would be on it. But during the warm weather he took great joy in the 20 km round trip into the city, climbing the killer "Mile Hill" at the end of each day. On weekends he'd set off to climb the arduous hills of the Gatineau Park. I rarely joined him, having a strong aversion to the over-exertion required to climb those hills, but in our child-free days we used to take long trips together, relishing the freedom. He could always leave me in his dust but would chivalrously hold back on my account.

One of the strange aspects of this disease is the unevenness of the symptoms and some pretty interesting paradoxes. Michael can go from complete mobility one moment to complete disability the next as his drugs wear off. But what is so strange is his ability to run even when he cannot walk and, more curiously, ride a bicycle, an activity that requires great balance and strength, when he would otherwise have to crawl.

Recently research has come out of Holland on this subject, investigating how and why Parkinson's patients can successfully go for a bike ride when they cannot walk; my husband is apparently not an anomaly. Dr Snijders and Dr Bloem of the Donders Institute for Brain, Cognition, and Behavior (Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands) have made no conclusive statements on why this is. They have theories but nothing proven as yet. It has long been observed that many PD patients can often do complex movements, like dancing or running, for a short while, freezing immediately after. There is a well known case of a group of PD patients running out of a burning building only to freeze in place as soon as they got outside (Gina Kolata, New York Times). This phenomenon is called a kinesia paradox and it never lasts long. It could be explained by the possibility that these actions use a different, unaffected part of the brain or that visual or emotional cues are offered (like the feet on pedals of a bicycle or the strong survival instinct in the case of the fire escapers), but no one knows for sure.

I stumbled upon reports of this research almost a year and a half ago but it has only been published recently in the April 1 issue of The New England Journal of Medicine and thereby hitting the media, prompting all family members and friends who read about it to call. When I first heard about it back in early 2009 and knew that Michael fit into this category of PD patients displaying this strange phenomenon, I urged him to hop on his stationary bicycle and get moving. Not only would it be good for his atrophying muscles but also for his cardiac system which has taken a beating the past few years. Though he made occasional valiant efforts it just wasn't fun so he rarely did it and I got tired of being a nag all the time. So the stationary bike sat unused most of the past two winters.

But last summer we made a big effort to get out on our bicycles as much as possible, enjoying many trips on the region's vast system of bicycle trails and avoiding the main roads as much as possible because even though he could still leave me in his dust while pedaling steadily, as soon as he stopped, he would fall off risking life and limb at every stop sign. As the accompanying cyclist it took all my nerve to embark on these trips. Planning was essential to success; I always had to keep in mind his drug cycle, and choosing a safe route was critical. I always cycle a safe distance behind him in case there are any calamities and I can be his eyes and warn him of upcoming problems. He tends to cycle like a child, with joyful abandon and often oblivious of others on the trail.

When Michael's condition worsened so severely back in the fall I never imagined we would cycle together again. He has spent the entire winter mostly couch-bound, unable to move most days. His limbs are visibly thinner from atrophied muscles. He made occasional weak efforts to climb upon his stationary bicycle but exertion was too much and he'd give up after a couple of minutes, labouring for air.

So imagine my concern and surprise when, one day last week while talking on the phone, I see Michael walk by dressed in his cycling garb, announcing he was going for a ride. I say nothing at first, thinking I'll wait this out and see how far in the readying process he gets. As I predicted, getting out his bike, finding his shoes, helmet, wallet and other perceived necessary paraphernalia took ages and ate up all his available strength and mobility. Nearly a half hour later, he slumped on the couch, exhausted from the preparations. I had to sit down with him and express my concern over his plan to go out by himself. I had already been making plans in my head to try some very controlled cycling trips with him on easy, quiet trails but going out by himself is simply out of the question. Despite his collapse, he bristled at my prohibition. The problem with dementia is an inability to properly assess one's capability to do anything and I find it is an ongoing problem, with me usually having to step in and be heavy-handed.

But I came up with what I thought was a brilliant plan. Lately I have been plagued with caregiving issues (I usually don't have anyone most days) so until I am confident enough to take him out on the populated trails, I suggested that he accompany me on my daily dog walks which otherwise I have to forgo when there is no caregiver. He can ride his bike while I walk on the safe, quiet path I usually take.

That is what we did yesterday. It was such a joy to watch him whiz back and forth on his bike, clearly enjoying every moment. He fell off a couple of times but nothing serious, sustaining no injuries. The dogs enjoyed the confusion of him careening up and down the road, covering probably triple the distance I walked so everyone came home happy.

I was feeling pretty pleased with the day, thinking that at least I can now get out for some exercise while we get through the latest caregiving mess. But everything has a cost it seems. He was feeling so confident and happy and liberated by the biking experience that it seemed to give him a sense of independence. My day ended with him grabbing the car keys to go for a spin. More angry negotiations, more attempts to explain why he cannot do that. But he doesn't understand. He only thinks I am trying to thwart his independence. But at least he had those moments of joy and freedom on his bike. It has made me resolve to get him out every day either cycling together somewhere safe or at least with me to walk the dogs. And I'll hide the car keys.

Monday, April 5, 2010

Resurrection

While the Christian world celebrated the Resurrection of Christ this Easter weekend, our family was enjoying a renewal of our own.

During the past several weeks I have seen an enormous improvement in Michael's condition, something I never thought we'd see again. He is sleeping better most nights which is perhaps why he enjoys more mental acuity during the day and seems to have longer periods of physical fluidity. It could be the result of a recent adjustment in his medication or that he is simply getting better after the horrific few weeks of an extreme Parkinson's crisis during the late fall and winter. But Thursday, the day before the weekend, he seemed to slip once more into the usual torpor, unable to move or even stay awake most of the day. I wasn't sorry because I could buzz around vacuuming and cleaning the house before family arrived for the weekend, confident that even the noisy vacuum cleaner would not disturb him, though, as the day wore on, I anxiously checked him more frequently to be sure he was still breathing.

The first offspring arrived Thursday evening, two more by noon on Friday. That day he perked up a bit but still succumbed to several naps throughout the day. On Saturday the weather was spectacularly warm and we planned to have a houseful of friends and family for a buffet supper, thirteen of us, in fact, and three dogs. I was certain the day would exhaust him. We lead a very quiet life with the only child still living at home rarely around, so we notice an enormous increase in the noise and energy levels with each additional child. It's amazing how loud adult children can be when they get together but I love the positive, happy energy in the normally quiet household.

As the day wore on and I was immersed in cooking and preparing for the crowd, I noticed something remarkable. My husband never flagged all day. He was out there playing with the kids in the back yard, running around and hurling the football like the pro he always was. Given the extra drain on his energy, I was careful to stay on top of the five doses of medication he needs to get through the day, a total of 23+ pills, but I found at each dose time he was still full of energy and fully mobile, not normally the case. I was sure the evening crowd would do him in - it has in the past - but, no, he was calm, engaged, aware and talkative. When everyone had left by 9:30 pm he slumped and had to go to bed immediately.

I felt sure the next day would see him exhausted and drained after a full day of activity but he was just as energetic. In fact, during a brief Skype conversation with a relative in Britain, his old wry self-deprecating humour surfaced as he joked about tinkering with the tractor (a serious bone of contention between us) and knowing how to mask his blunders from everyone's sight. A rare glimpse into the old Michael.

Easter Monday, with the last child returning to university, he was still busy. By then, though, there were no kids to throw a football or kick a soccer ball so he focused his attention back on the tractor and other large machinery we have, bringing back my anxiety over his restlessness and how to channel it safely away from dangerous machines that he can no longer operate but thinks he can. By Monday evening it had escalated to a kind of mania where I was seriously planning to sell off everything in the house that could harm him. But that would be an impossible task and without merit because on a bad day even things like the electrical outlets are a danger for him (I found him kneeling before one just last week ready to insert needle-nose pliers "to fix" something). There were angry words between us when I felt I had to intervene and few words exchanged the rest of the day as we both were on slow simmer.

I had resolved to take steps on Tuesday to rid the household of as many dangerous things as I could if this new energy and wellness were the new reality. But, for better or for worse, he slumped back into lethargy and immobility. I welcomed it on one level but was saddened by it too. He had truly enjoyed a kind of resurrection last weekend and for all the problems that posed for me, it was wonderful to see. It is also humbling to know that my company alone lacks the stimulation he seems to need. He enjoys, more than anything, the fun and camaraderie of a good game of something, anything, with like-minded people.

On pondering the remarkable events of the weekend I've concluded that much of his listlessness and immobility might be the result of depression and boredom. But then there was something more at work this weekend because he has had countless opportunities to engage in fun activities with people and has just not been physically able to do so. Perhaps the warm weather was a factor, perhaps the company. Perhaps with all the kids home and playing with him, I felt comfortable enough to pay him less attention and thereby he felt the lift of my watchful and oppressive eye. Or maybe it was a small miracle reflecting the joyous events celebrated at Easter.

Who knows?