When I was a teenager, we had a silly saying that went as follows: So I said to myself, “Self, don’t go away. But I turned around and there I was, gone.” I make no claim as to its origin but it seems to demark some sense of searching for identity, or more appropriately, a sense that our identities were rapidly changing and no sooner had we latched onto the latest version than it was gone. Gardens are a bit that way actually, ever changing over the seasons.
Please garden: don’t go away. Photo: S. Marshall
My last post was largely about searching for an identity in a new Parkinson’s body and the saying would have been apt to describe that process. However, this post is largely about dealing with Parkinson’s on a day-to-day basis while revisiting an identity that I have been shedding for about ten months.
I am a retired staff from the Canadian Union of Public Employees (CUPE). I will not bore you with all of my tasks and responsibilities, as I don’t believe they are germane to this post. Suffice it to say that I was employed in several senior positions for almost 24 years. It is impossible for the work, and more importantly, the people, to have not influenced almost every aspect of my persona.
This influence was brought into sharp relief recently when my wife, Anne, and I attended the 50th anniversary convention of CUPE in Quebec City. CUPE has a wonderful practice of inviting those who retired after last convention to attend the next convention. This gracious gesture acknowledges the contributions of the recent retiree, permits the retiree to meet and greet colleagues both old and new, and allows the retiree to witness the formulation of new policy and practice as the union moves forward. Don’t worry; I will not bore you with policy decisions and debates, although I am sure they would be interesting to some, and infuriating to others.
Over 2500 delegates and staff. How many will have to deal with PD in their lifetimes? Photo: S. Marshall
I didn’t know what to expect as we made our way to Quebec City. On the one hand, I was excited with eager anticipation to see members and staff who were so integral to the mission of the union. I had worked closely with thousands of them. On the other hand, as the kilometers clicked away on the train, I had a sense of trepidation. I would be meeting many people, for the first time, as a Person with Parkinsons (PwP). How would they react – hell, how would I react? I was not concerned about my own mental state as I indicated in my last post, I have largely come to grips with Parkinson’s and my identity. I was more concerned about how my Parkinson’s body would react? Would I be able to control my temours so that I didn’t look like my legs were going to fall out from underneath me? Would the pain debilitate me at inappropriate times such that I would regret being in the presence of others? I did not want to appear frail and weak. Would I have the stamina required to do all of the things I wanted to do? I just didn’t know what would happen.
I was right to be concerned about the tremours, the pain and the fatigue. They did cause some problems throughout the five-day meeting. Because I am now in touch with the rhythms of my body in ways I had never been before, I tried to prepare ahead of time. Foolishly, I did not consider the obvious: convention carries on all day and into the evenings with forums, rallies, and other events, as well as dinners out with friends. And Quebec City has such great restaurants with remarkable cuisine. In short, convention is a 12 – 13 hour endeavor each and every day for those who want to absorb everything. Non-PwP are thrilled by this prospect and often work and/or party late into the night, extending the hours even further. Ah, I remember my own staff days “fondly” where it was not unusual to work 18 hours each day during convention.
But this time, I made a personal commitment to engage in at least 30 minutes of cardiovascular exercise each day, and I found myself in unfamiliar territory as a PwP. The hotel had a gym and the first two days I hit the treadmill early so as to be at convention on time. However, I failed to consider that it takes about 1½ hours after waking for my L-dopa to kick in. This meant that those early gym dates were particularly tiring. This was compounded by a departure from my strict adherence to nutrition that maximizes PwP performance of daily activities (a long way of saying that those restaurants are really fantastic with multi-course meals, wine and desserts.) I guess I shouldn’t have been surprised that fatigue caught up to me quickly and I couldn’t sustain the pace. To make a long story short, I opted to forgo evening sessions and late dinners for the last three days and I no longer went to the gym but I did walk on one other day. (Please note: I returned to a strict regimen of exercise and proper diet upon returning home.)
When fatigue catches up to me I walk slowly and with great effort. I am usually in pain and I have strange muscle and nerve sensations in my legs and feet, and have noticeable tremour in my left leg. Even in casual situations such as a dinner with friends, my left leg shakes and I have muscle cramping and pain. I used to think it was some form of stress that caused this but now I am convinced it is “stimulus” that is the trigger. Whenever my mental senses are heightened, the symptoms are exacerbated. It is important to note that this does not apply during physical exercise which seems to override the mental stimulus. Sorry, I seem to have lapsed into some musing on a subject about which I am not qualified to analyze.
It was at that point that the word “disabled” became real to me for the very first time. It has crossed my mind a few times since diagnosis, but not seriously as retirement tends to cast a different hue on the matter. At convention it hit me fully that it would be impossible for me to carry out the responsibilities of my previous position without considerable accommodation. In Canada, PD is considered a disability. I have never really considered myself to be disabled but that reality is now upon me. It is not a word (or a condition) for me to hide behind nor should I. I want to pursue life in all its forms and will continue to do so. But I am also cognizant that as a PwP, I can no longer participate in society in a manner equal to my former self. There is a longer discussion to be had on this point but it will have wait for another time. Those of you who have laboured through this text to this point are undoubtedly relieved.
So, what surprised me?
CUPE traditionally opens and closes convention with Solidarity Forever and Bread and Roses, performed in both English and French. Of course, this was not new to me having attended countless other conferences and conventions. But to my surprise, I was quite noticeably (to me anyway) emotional during the singing of Du Pain et des Roses – a feminist and labour anthem, and slogan that has its roots in the Lawrence, Massachusetts textile strike of 1912 and reprised in a revised form in the 1995 March of Women against Poverty.
Once you hear the uncomplicated clarity of the lyrics of Du Pain et des Roses, it’s refrain and demands are etched in your mind forever. Have a listen here to the group Break Syndical who performed it at convention.
Over the course of the week many staff and members made their way to our seats in the convention hall to say hello and pass on their good wishes. And each walk through the convention centre and hotel was a walk through a gauntlet of handshakes and hugs. I really loved seeing everyone and exchanging a few words, if even only for a few moments. However, I was not prepared for my reaction after you left. I would lean over to Anne to say a few words about you and I would be unable to enunciate these words as the emotions welled up inside.
I am not certain exactly what was happening. Perhaps, it was the realization that I would never again have the opportunity to be in the presence of those who are so dedicated to making a positive difference in society. During convention, Tomson Highway, renowned Canadian playwright, novelist and musician, told delegates he has always seen trade unions as “the guardians of human dignity.” Perhaps, it was the realization that I no longer had a central role in policies and campaigns to continue that custodianship.
Or perhaps, some of it was Parkinson’s. About 15% of PwP do exhibit symptoms of a neurological phenomenon called involuntary emotional expression disorder (IEED.) It is a “non-motor” symptom of PD that is not well understood. In any case, those who experience it find themselves, for example, being tearful in a manner disproportionate to a particular event. Over the past several years I had noticed a change in my “sensibilities” such that I would be close to tears during commercials on TV – and these were commercials about new cars and household products, not intended to be tearjerkers! Of course, this change could be attributable to personal weakness rather than to PD, and you realize that as a man, I am not prepared to admit such a thing openly. Should I be embarrassed? I am not really. I am just trying to figure out what is happening and trying to do so in a reasoned fashion. So, I am going to blame it on Parkinson’s.
Anne remarked several times during the week that she felt as if she were accompanying a rock star, as everyone wanted to reach out and touch me. Her words, not mine. It was a bit like that. But truth be known, I wanted to touch you as much or more. It was my opportunity to have tactile contact with some of the most dedicated individuals I have ever had the good fortune to encounter. And it would very likely be the last time – just a fact of life. I will leave multiple farewell tours to Kiss, Cher, The Rolling Stones and the Beach Boys.
There were many handshakes and hugs. Oh, there were a few (but very few) fake hugs as not everyone was a friend of mine within the union, and polite protocol prevailed. This is not surprising. What was surprising to me was the genuine, warm, heartfelt reception I felt had from everyone I encountered. Rest assured, it was reciprocated.
I must offer a sincere apology to many of you though as I am afraid what you received was a very sweaty hug from a PwP. In fact, sweating uncontrollably (hyperhidrosis) for no apparent reason is another symptom of PD and is often an early warning sign although it is not the same for everyone. PD affects the autonomic nervous system such that it loses its ability to regulate the body. Excessive perspiration may also be a consequence of PD drugs such as Levadopa that is critical to manage symptoms such as tremor.
My first memorable encounter with this problem was when I was working on an election campaign for a candidate at a local polling station. I was literally dripping as I examined the voters’ list. I am certain workers at the poll were less than thrilled but I hope my candidate realized how much sweat I put into her campaign! At convention I am surprised that you didn’t back off and say: “Get away from me you great sweaty beast!” You are to be commended for your politeness, or perhaps you were a woman who was suffering through a hot flash and the feeling was mutual.
At the end of the week, I was happy as the kilometers clicked back up the tracks towards Ottawa. I had a great time overall. I was proud of the work that my former colleagues produced in order to make convention a huge success setting the path for another two years. But most of all, I was happy to be headed back to our garden – time to put it to bed for another year. Snow would be soon upon us and I had already begun the intellectual enterprise of plotting human intervention (for better of for worse) into Nature’s master plan to recreate another garden to stimulate and excite our senses, and challenge our abilities. Hmmm, sounds like the subject matter for another blog.
In the case of gardens, they definitely do not listen to my admonitions not to go away, and when I turn around they are gone.
Still beautiful but almost gone (for the winter.) Photo: S. Marshall