July 1, 2017. Happy Canada 150+ day.
This is the long way to talk about how to deal with a diagnosis of Parkinson’s disease or any other chronic and/or debilitating illness. Please bear with me. Once upon a time I was a teacher of a college program called “Developmental Services”. Once a year we invited a group of parents to come and talk about their children but especially their child who was diagnosed with a severe developmental or learning disability. Student feedback told us this was the most profound day of the school year when cliches and stereotypes tumbled down and were replaced with more real and helpful attitudes. Many a tear was shed and not only by the students. I and the other teachers had so much respect and admiration for those parents, mostly moms, whose lives had been shattered, we thought, by the arrival of a child with so many disabilities, it would change the families forever.
The parents spoke very candidly about their experiences and struggles, especially to obtain an accurate diagnosis and appropriate professional and personal support. One of the parents brought an article called “welcome to Holland”; it was written circa 1987 by Emily Perl Kingsley, also a mother of a child with disabilities. It can be found on the internet but I have not learned to incorporate those kind of links yet. Being a Dutchman by birth, I was intrigued by the title. Of course this was just a metaphor to describe the process of accepting a child with numerous limitations.
The gist of the story is that expecting parents are looking forward to a child who will develop normally, behave well, fit in with other children. Of course we want our children to be happy and responsible. We dream of them being successful and surrounded by loving people both as children and as adults.
Here is the metaphor: we want to go to Italy to experience the sunshine, the culture, the food and wine, the buildings build in antiquity, the beautiful artwork, frescoes and history. What is not to like? The day comes and we are pumped and ready. Passport- check, Euros-check, plane tickets- check, reservations-check. You get the idea. We’re on the plane, sleep a bit, have some mediocre food and we land. The captain says “welcome to Holland”. ‘What?’ We are supposed to be in Italy, there must be some mistake. No ma’am, no sir, you’re in Holland and you’re here to stay. Eventually you realize that you’re not in a terrible, filthy, dangerous place. You even come to appreciate Holland. It has tulips and windmills, beautiful flowers, ancient buildings, lots of museums, Rembrandt, wonderful food, great beaches. It’s not Italy but it’s not so bad. We may still occasionally yearn for Italy but are thankful for Holland. We have unique and positive experiences we would have missed if we had gone to Italy. End of metaphor.
It’s just a metaphor, so it only reflects part of the experience. Perhaps we only experience this acceptance when we come up for air from the intense feelings we have about being diagnosed with Parkinson’s or another illness. Perhaps Parkinson’s is different because it is a progressive (what a funny way to describe PD) illness that at best we can slow down but which will relentlessly take away our lives.
To go back to the metaphor, perhaps it goes something like this: We go to Italy but only get to stay a while, then we move to Switzerland and learn to appreciate the mountains, the cheese and yodelling. This time our family and friends come along. We may even make new friends. Again we and our “entourage move, this time to France. Tour de France, Paintings and statues, wine, beaches, trains, Paris. We can get used to that. Next is Belgium with it’s beautiful old cities, Vibrant Brussels, Northsea coast and hill country. Perhaps our last stop is Holland (properly called the Netherlands). We’ve already looked at that. All together quite a trip, lots of challenges, great scenery, good company. End of metaphor (again) .
as one of my colleagues often said, life is a series of choices, we can accept the challenge, engage with it, learn about it, adapt to it, enjoy the enjoyable parts, even dance with it. Or we can run from the challenge, hide from it, let it have it’s way with us. I know which choice I made, bring it on.
June 23, 2017
Yesterday I learned that collectively the people who visit my blog are called “the audience”, or sometimes “my audience”. I find that a bit presumptuous but perhaps that will make communication easier.
Anyhow, I hope that my audience will include family and friends, fellow parkies, care givers, para-professionals and others interested in the experiences of people who live with this ugly disease we call Parkinson’s. I hope there will also be people interested in other disabilities because there is a humongous overlap in the way we experience the changes in abilities, attitudes, our place in the world, etc regardless of the particular disability we live with.
Everyone has a story to tell, or a contribution to make, so please feel free to comment. If you have any feedback, positive or negative, please email me at firstname.lastname@example.org
My intent is to write something each week. The next blog will be about how to handle learning you have Parkinson’s disease. After that I’ll write about protein and levadopa, then several focussing on some things (literally) that help us have good quality of life. That will keep me going for a month or so. After that, there will be lots more.
Christmas 2016 marked the 10th anniversary of my “dance with Parkinson’s”. I thought I would write a few things down to remind ourselves what we have experienced so far. Early in 2006, my right foot started to drag. I was extremely busy at work then and often used 2 computers at the same time, physically changing positions often. I thought it was an issue of ergonomics and not looking after myself. St. Clair College arranged for a specialist in ergonomics to evaluate my work station and associated behaviours. He could not find much so I left it for the time being; it did not seem like such a big deal.
That summer my wife Jan and I were out west and were enjoying a few days on the Rocky Mountaineer train. I overheard a child ask his mother “why does that man walk so funny”; only he asked in Dutch, not knowing I could understand exactly what he said. His Mom replied in Dutch something like “he has a disability”. That was when I began to realize this may be a permanent limitation but I had no idea what it was.
That fall I was sent for an MRI and was referred to a neurologist. Just before Christmas 2006 we received the diagnosis of slow moving, atypical (because it did not involve tremor) Parkinson’s disease. I deliberately said “we” because from the very beginning it involved both Jan and I as well as our entire families. I was 55 years old and certainly did not plan on this. Some people asked me if I was going to fight it; I suppose not fighting it would mean just crawling under a rock and only exist. I wasn’t about to do that but I didn’t know if “fighting it” was the best strategy. Somehow I came to accept that I would never win this war in the long run but that I better learn to live with it. Parkinson’s is by definition a progressive disorder that will relentlessly take it’s toll. No cure, just medications and staying active. As expected my condition slowly deteriorated, but the emphasis was on slowly. I started pramipexole but that had too many behavioural consequences. Eventually I was put on levodopa and I responded reasonably well. Of course this affected my eating because of the protein connection; adaptations were (and still are in 2017) required from Jan and myself and those we eat with.
The college was very helpful in arranging my teaching schedule to fit my “needs” (a.k.a. on/off times), but after a few years I asked to reduce my workload. I was losing control of my feet and kept accidentally kicking the students and the furniture in my classes. Not a great student retention strategy. My colleagues were great in backing me up but after several years of increasing accommodations I went on full-time disability in 2011.
At one of the conferences I met Nelson Sleno who wrote the wonderful book “Shaking Hands”. Nelson used the metaphor of “fighting the darkness”, which I totally got. Yet for myself, I began to see my experiences more as “learning to dance”. I’m not really fond of fighting terminology anyway, being a semi-pacifist. Keep in mind that I am a pretty poor dancer; I never learned the intricacies of a real dance, nor was I motivated to learn any form of dance beyond the “shake it and move it” informal motions, more or less to the music. So the dancing metaphor relates to being uncomfortable much of the time, but yet getting on with it. Trying to enjoy it even a little, having some control over my life, feeling supported by those around me and carrying on a normal life. At times Parkinson’s steps on all my toes at the same time. Dyskinesia takes over my arms during the day; it especially makes eating, writing and driving more uncomfortable. It’s difficult to explain to others that this is a side effect of levadopa medication. It’s like choosing to use your legs or your arms but not both. I know that’s a bit simplistic but I suppose it’s at least a choice.
Occasionally, I step on my “partner’s” toes, for example if I wake up during the night and “it” seems to be gone or if I have a better than normal sleep during the night. Thankfully the dyskinesia lets up during the evening and night when I’m in an off period and I use much less Levodopa. Of course I can’t walk well either but who wants to walk in the evening anyway, and I have a cane to help me stay upright. I seem to have made peace with my interrupted sleep pattern. One thing I don’t like is to spend so much time keeping track of my medications, protein etc. So much time and effort focussed on myself. That’s not me, It takes away from family activities and relationships.
It makes me feel quite selfish.
Even so, family life, along with social activities, has switched to a new- normal set of routines. I have been able to continue to be involved with some church activities such as visitation, scheduling, speaking but on a much lower level. I’m thankful to have great support from my wife, Canadian family, Dutch family, church family and friends from school. The dance goes on. On some level I’m curious about what comes next. If I said I couldn’t wait for what comes next, I’d be lying; in fact I try not to think about that very often. DBS (Deep Brain Stimulation) is probably on it’s way. Scary: definitely. Exciting: that too. Maybe some day I’ll step on Parkinson’s toes if ever better treatments become available. For now I have come to appreciate the song/hymn “Lord of the Dance” by Sidney Carter. The refrain of which goes something like:
Dance, then, wherever you may be,
I am the Lord of the Dance, said he,
And I’ll lead you all, wherever you may be,
And I’ll lead you all in the Dance said he.
Parkinson’s disease did not ask me if I wanted to dance, but I’m glad I’m not dancing alone. There are still many “things” to enjoy, many “things” to be thankful for, many “things” to look forward to.
6 questions I wished people would ask:
1. What is the most amount of dishes you broke in 1 dyskinesia strike: 4 (I wasn’t even trying)
2. What is the most embarrassing thing about dyskinesia: hitting a child with my menacing arm (actually this has happened and the child very graciously accepted my apology)
3. What is your scariest experience with Parkinson’s: waking up feeling like I am paralyzed and feeling I couldn’t get up if I wanted/needed to. (For me, this improves enough to get up after 15 minutes or so)
4. What is the nicest thing that sometimes happens during the night: hearing very regular soft breathing coming from my wife’s side of the room; at least I didn’t wake her up this time
5. Does the Parkinson’s ever let up: very occasionally, I get up during the night, I jump out of bed and walk normally. Legs working fine, no dyskinesia. Why? I don’t know. I don’t want to know. I just enjoy it.
6. What is your funniest experience with Parkinson’s disease?. There are many but the one I like best is when I arrive at a restaurant and I can barely shuffle in with my cane, I reach my seat just before the other guests think I’ll fall. Yet after the meal I’ll get up, either forget my cane or carry it like an umbrella. How can this be, they think. He’s a fake, they say. Wished it was but chalk one up for the power of Levocarb. L.O.L’. Actually this also occurs in a backward fashion but that is less funny.
Onward and upward.
December 2016 was my 10th anniversary with Parkinson’s. I ended up writing a short summary about what I came to call “dancing with Parkinson’s Disease”. I imagine sooner or later I will share it here. Anyhow, in 2017 I had some medical issues, not related to Parkinson’s ( as far as I know) and I am not able to do as much, indoors or outdoors as I was used to.So I got this fancy idea to become a blogger. This would also give some focus to my life. The websites all said it was easy, so I tried to set it all up. Here is is, not so easy but that’s probably because I’m not exactly a fast learner in the realm of IT and technology. Probably it wii get better as I learn more. My intent is to write one blog a week, using a thematic approach, focussing on adaptation, at least for a while. I must admit I’m a bit ambivalent about this project. I’m not usually a very public person. Thanks for reading this, please come back again. Casey