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.