Diagnosis Parkinson’s: The artist and the Gardener

Time in the garden time is partly about reflecting on the past and all its complexities, and partly about planning for the future and trying to keep that from being too complex and stressful.  Whether I am pulling unwanted plants, planting new ones , moving some which just do not fit where they are any longer, or admiring the beauty of the blooms and foliage, as well as cardinals, goldfinches, hummingbirds, bluejays, and non-flying creatures such as voles, it is the most peaceful time in every day.

There is no single aspect to our garden. There are many micro-environments/climates and locations around our somewhat small property and a few stops where one can admire different perspectives, or a specific surprise hidden amongst the shrubberies.  Each stop provides a sanctuary from the harshness of life, not by permitting you to forget, but by permitting you to come to grips with those matters free of external stress.

A high level view of the main garden (click to enlarge)

A high level view of the main garden (click to enlarge) Photo: S. Marshall

One of my first reflections after diagnosis was how I was genuinely relieved that I had Parkinson’s Disease (or a “Parkinsonism”) as the doctor first framed it. That may seem very surprising given that most people appear to be devastated when they receive the news (or so I have been told,) even if they suspected that they had Parkinson’s for quite some time before receiving the official word from their physician. 

Reflection should not be this stressful Photo: S. Marshall

Reflection shouldn’t be this hard  Photo: S. Marshall

By saying that I was relieved, I am in no way trying to diminish the severity of Parkinson’s. It is, after all, a progressively degenerative disease which has no known cause, is incurable (at present) and manifests itself in quite different and difficult ways in each individual. It is a disease which no one wishes to have. I didn’t and I don’t now. 

In my case, I had been struggling with severe pain and tremor in my left leg and foot for approximately a year. Visits to my physician and a referral to an internist did not yield any relief or potential for an accurate diagnosis. To be fair, I did have swelling in both legs and feet which had been present for quite some time and became exacerbated in my left leg when I suffered from an infection (cellulitis.)  Interestingly, a Nursing Assistant at a Community Clinic where I was having my dressing changed asked whether I knew that my leg shook and whether I had raised it with my doctor. She undoubtedly had some experience with Parkinson’s in her community workplace setting and probably knew more about it than my physician.  Subsequently, I did raise it with my physician but it did not seem to be high on the list of matters to explore.

As luck would have it, my physician had take some time off and another physician took up the practice as a locum. One look and I was referred to one of the foremost physicians in Canada dealing with Parkinson’s and muscle movement disorders.  After a short wait for an appointment and some non-invasive testing, including a nerve conduction test in my legs, Parkinson’s was the word.  It was a relief.  At least now I knew something and had a place to start.  I knew  that Muhammed Ali and Michael J. Fox have Parkinson’s and  that you can live with Parkinson’s. Now I had to figure out how I could live with it.

To continue my journey to diagnosis, the aforementioned cellulitis was treated but the pain persisted, as did swelling in my legs. The pain was, in retrospect, quite excruciating. On any given day, on a scale of 1 to 10, where 1 represents “negligible” pain and 10 represents “I want to cut my foot off” pain, I was regularly between 5 and 8 in degree of severity. I am not sure how I was able to continue working in a job that was very high pressure and demanded, at minimum, 12-hour days. It was probably adrenalin that kept me going but that was not to be sustainable in the long run. I would collapse at the end of each day in an effort to do pain management, and even that was little more than painkillers (non-prescription) and falling asleep from exhaustion. Morning usually found it to be much improved, only to have my condition deteriorate throughout the day.  My decision to retire was made even before medication improved the situation considerably.

At this point, I should say that I am eternally grateful to those who had the prescience to negotiate both an excellent pension plan and excellent extended health benefits for retirees at my workplace. Without these and a public health care system (although it is always under threat of privatization,) it would have made any decision to retire very difficult and perhaps impossible.

After some experimentation a change in blood pressure medications alleviated the swelling in my legs. All too often I suppose, diagnoses and treatment are confounded by many variables, not all related to one specific disease or problem.

The pain in my feet was still persistent and was of two types:  burning, tingling pain often associated with diabetes; and what I call “solid” pain in my toe joints which seem to be “numb on the inside but still sensitive to touch on the outside” along with a feeling of swelling in my foot even though no swelling was present. Medication has largely alleviated the burning, tingling pain but the joint pain, numbness and other general pain, remains. A daily pattern of feeling good or even great in the morning and early afternoon, to feeling shakier with increased pain levels, and nerve “popping” in the late afternoon and evening, persists. I suspect I will be reading much more about “wearing off” and optimum timing for medication.

Of course, now that I have been spending quite a bit of time researching, reading and learning about as many aspects of Parkinson’s as I can, I have begun to put my mind to the degenerative nature of PD. I am determined to delay its progression as much as I possibly can. I keep a positive attitude, try to exercise daily, eat healthy and nutritious foods to see if I can stave off the seeming inevitability of increased disability. And daily, I consider what future burdens I am placing upon my wife Anne and my children.  

While the Twitterverse is a great place to be in touch with other persons with Parkinson’s, and I am learning so much from you, I am also acutely aware that caregivers shoulder a huge burden of responsibility – physical, fiscal and financial, social, emotional and psychological.  I am only beginning to understand their struggles and the ups and downs that they face on a daily basis but it is very clear to me that these men, women and children are very brave, unselfish, loyal and loving souls. They are to be admired greatly and are to thanked profusely for their many sacrifices.

The relationship I have with Anne is beyond anything that I had ever encountered.  I hesitate to write further personal thoughts as I know that she reads this blog (but has no authority over editorial content) and I don’t want to tread outside of any comfort zone in terms of what is private and what is public in our lives.  Fortunately, my PD is advanced only to the point of being a nuisance largely, although I know it must concern her when I am in pain. While I can still do many of the things that I could before, I know that she is watchful of my activities and attentive to any changes in my movement or demeanour.

Anne decided to retire in August 2013.  She wanted to spend more time on her hobbies (beading, sewing, quilting) and on her art.  Her paintings can be found at http://fineartamerica.com/profiles/1-anne-marshall.html if you wish to view them.  She also wanted to spend more time at home as I am retired. Our relationship is such that we can spend very long periods of time together with no adverse consequences. One might think that she was retiring to be at home to care for her husband who has PD but I don’t think that is entirely the case. I think that she wanted to spend more time at home with her PD husband to enjoy these months/years, however long it might be, before care giving becomes primary. To me, that is most unselfish and is a great gift to me.

I fear I have run on far too long once again.  Let me close by saying that our garden benefits from Anne’s artistic palette of creativity, attention to design, colour and light, and from my attention to details and from my labour. It is a unique partnership, one which brings us both enormous joy – Anne’s from the broader vistas as seen in the overview of our garden above, and mine from the challenge of creating and re-creating the space for harmony in the garden (see under construction below.) In every way, Anne is the artist and I am the gardener.

Under construction (click to enlarge) Phoyo: S. Marshall

Under construction (click to enlarge)   Photo: S. Marshall



In the Garden with Parkinson’s Disease

My name is Stan Marshall and I was diagnosed with Parkinson’s Disease (PD) about a year ago. I don’t remember the exact date but it doesn’t really matter as the symptoms were present for many years before the official diagnosis. Little things, like finding it difficult to turn over in bed, or walking more slowly than usual. I should have clued in when a little old lady (about 70) with a knee brace pulled out and passed me on one of my exercise walks. Also, I began to become a little more uncertain doing anything that required balance. Stepping down from the bleachers at the fall fair became a small challenge. I remember chastising myself for becoming “old.” In reality, I was in my late 50’s – not old at all. It wasn’t until I was 63 that I was “officially” diagnosed and only then because I was experiencing considerable pain in my left leg and had significant tremour which I could no longer control at will.

I am telling you this just to set the context of this blog with no intention to garner sympathy or pity. I have a wonderfully supportive wife and lover, Anne, who is central to my well being. Our blended family children (Natalie, Sophie, Kristen and Allie) are grown, away from home, wonderful people, and very supportive. Matthew and Mike are our two sons-in-law and are perfect in their own ways as is one boyfriend, Marty. They all are doing important things with their own lives.

Since the diagnosis, I retired with a good pension.  I left a job that I loved and work colleagues who I admired terribly and miss enormously. I still meet with many of them for breakfast, lunch, coffee or tea. There is no need to feel sorry for me. I don’t. When I informed my children, I told them that you don’t really die from PD; that on the whole I would rather not have PD, but given a choice I would rather have PD than Lou Gerhig’s Disease Amyotrophic lateral sclerosis (ALS); but if I was given a choice to have PD or be a Toronto Maple Leaf’s fan, it was about 50%. Leafs’ fans will loudly object to this but having a sense of humour and a proper perspective on life is so incredibly important.

Nevertheless, PD is a fact of life for me.  I will, of course, be referring to my experiences (both past and current) in my blog but they are only intended to give an insight into what life with PD is like in my particular situation. I fully recognize that life with PD varies considerably from individual to individual and according to how far the disease has progressed. It is a degenerative disease and will change over the course of a lifetime.

So, what has gardening got to do with anything? In a nutshell, gardening is my therapy. While I have gardened occasionally over my lifetime, it is only within the last 20 years that I have taken it up with a passion. My passion is for perennial plants rather than vegetable or food stuffs gardening. I appreciate the latter but prefer the former.  Gardening is in my family bloodlines with my paternal grandparents and an uncle being significant contributors to horticulture in Manitoba. At family gatherings when I was growing up both gardening and horticulture (writ large) were always topics of conversation around the dinner table. Maybe I learned something through osmosis, I don’t know, but my life now is enhanced considerably by that socialization and ability to enjoy the sheer delight of watching a garden flourish and, on the other end of the spectrum, watch a garden change and challenge us as plants unexpectedly wither and die, or grow to be so invasive as to overrule our best made plans. Our garden is not an orderly planned garden. We permit many plants that others would call “weeds” to grow as long as it contributes something to the overall beauty or architecture of the garden. My father used to day that a weed is only a plant that is growing in the wrong place,

I fear this introductory piece is becoming a bit long and I don’t want to bore you with details that are likely only important to me. I am sure that you instantly realized that I am not an expert blogger. Bear with me. My blog entries will contain many current experiences with both Parkinson’s and gardening but you will undoubtedly have to suffer through some historical detritus if you persist in reading. I do not have a grand plan for this blog. It will unfold as it will or as Mayor Rob Ford of Toronto has said it will “unravel” as it will.