August 26, 2019
I turned 60 this summer and I have been reflecting back on my diagnosis of Parkinson’s 14 years ago (2005). I am deeply gratefully, that, at least for me, it is a mercifully slow progressing disease. The first 5 years I didn’t need any meds. I attended the 2010 World Congress in Glasgow Scotland as part of a work trip to N. Ireland. I had the honor of speaking 5 times at the 2013 PD World Congress in Montreal. When i decided to retire in May of 2014 it was because my voice quality was becoming unpredictable. (off 3 days a week but never sure which days) When a client re quested me for a keynote in October, I honestly to say no because I didn’t feel like i could deliver.
Bouncing along my merry way with the occasional stiff hours and scrambly voice, as Hannah calls it. Blessed to do just about anything others do: Drive a car, set up a trailer, ride a bike, kayak and even wash dishes – albeit some days slower. Life moves ahead with ever “in the moment” kids and persevering wife. As well as my love circles with family, Bedford United, Berwick, Parrsboro and friends I keep in touch with from bygone adventures.
Dark week. It’s not all roses. Mid August for some reason i was woken at 2am by an unusual leg tremor. (My version of PD presents as stiff, not a shaky) My meds didn’t seem to be working or if the did only for an hour per pill pop. Was I ready to face the new normal? Too much change. My mind started to drift into the future of “what ifs”, a very negative, anxious and arrogant game pretending I know the future. I worked thru it and got in to see my neuro team and I am back to “normal”. These incredible people in our health system. You won’t hear me complain. Opening my heart to those who love me got me thru this patch.
That dark week got me thinking about who’s there for me like Superwalk, Parkinson’s Canada’s main fund raiser for research, support and advocacy work. I means a lot to walk with my family. It’s a grand day more than symbolically journey around the public gardens with our community of hope and caring. I am supposed use this event to raise funds but I am notoriously shy about asking for money. There are so many worthy causes. But when you make a donation or even offer your moral support. It’s kind of like you’re walking beside me. And that would make my day.
June 14, 2018
Its been a while, 4 months almost to the day Feb 16. Almost everyone I meet tells me how good i look, i actually started wondering how bad did I look before? Andrea finds herself with a neck that gets sore as she reaches up to plant one on my taller stance. I personally notice good energy and see, and more importantly respond to, the funny. My voice quality has been a concern as i tweak the dial but overall my voice is good when it needs to be and that’s the magic. Settings (for future reference are R 2.0 and L 0.0) It’s still humbling how advanced elective surgery is universally available to help. Had a brain Brunch recently where my fellow DBS experienced friends compared notes. Left to right: Paul April 2018, Sheri, March 2018 and Moi, Feb 2018
March 8, 2018
When several friends have to ask `How are You Doing`that means i am slacking on my updates. So highlights include of the last 3 weeks seem to revolve around getting back to the new normal.
I was very much looking forward to getting my stitches out Friday march 2. It was a turning point because after that i didn`t feel like an early escapee from the hospital. I was quite self conscious – even though my hair is growing back fast – of the black stitches sticking up.
With my energy up after 2 weeks i started to walk the kids to and from school. It was great to be welcomed back by the `pick up` parents who wait with each other in all weather.
Another marker is back to church. I eased into it attending special event on Friday night mar 2 and attended full on at Sunday worship. The church community at Bedford United has been gold with prayers, well wishes and casseroles (See article: Love in a casserole dish)
One highlight was return of social life. When Maggie and Stu suggested dropping off a pizza, Andrea suggested we have an pizza making party. Their kids are the same age as ours . We had a blast and a arousing game of table hockey before supper and we played Apples to Apples after. Fun and chaos of kids. Back to being a parent.
All this has a backdrop of ongoing negotiating for our new Bedford Orthotics building across the street. Anybody know a trustworthy contractor
Movement wise i still have some passive effect of the electodes being in place. Getting up at night i am much less stiff. And i can walk well if slower even when off pills. When i take pills its later in the day that my right foot starts to wobble.
My head is also numb in several spots. A lot of nerves need to regen after 3 cuts in the noggin.
My stimulator gets turned on march 19. so we`ll see how well i can dance after that.
so that`s how are I`m doing, thanks for asking!
March 8, 2018
Trying times bring out the best in people. Stories of working together after hurricanes, etc. are common. But there is one gesture that gets under reported — the gift of prepared food.
A couple times a week since my brain surgery on Feb 16 we have been blessed with getting a meal dropped off. Its such a relief, the donors may have no idea what a treat this is, not to worry about making food
I thank my sisters for brilliantly organized the modern online version of what we did in the old days know as the casserole drop off. This is a corner stone of a compassionate community of Parrsboro where i grew up. Death in the family, drop off a casserole; illness in family, drop off casserole. It is surprising how this takes a great load off the mind of the caregiver. Andrea who is back to work full time after spending the first week at home with me.
This simple gesture so appreciated that is stuff of goodness. There is something beautiful about making food for somebody in need. Think about it like knitting a scarf when you already know who`s receiving it. Every stitch is like a prayer. Maybe a casserole has a prayer or at least the thought of the recipient in the food makers mind and heart. Love doesn`t come in a finer dish.
February 23, 2018
Excerpt from My Book of Happy
Kaleigh Mulroy is 9 years old and already has her priorities strait. She produced my own version of the Book of Happy featuring a list off what a makes me happy. the list not exhausted yet but goes like this, and in this order: sleep, playing with kids, camping,singing, and of course eating.
What’s in Your book of happy?
February 21, 2018
Home Agan Click Here
Whenever we returned from a camping trip or some such adventure one person (usually me the driver) would announce “Home again, home again” someone else would cap it off with “jiggety jig!” and that’s all i need to say about that!
February 16, 2018
A week before the DBS operation I signed the go ahead with my deep brain stimulation surgery on Feb 16. legal liability thing so I was made aware of all the potential risks of surgery, all the standards like stoke, paralysis and death. I read through like I read through the terms of new software, not.
But then i sat back and reflected on the power of my signature, a mere scratch of ink on a page, an how it gives assent for a huge go ahead the will change life as I currently live it.
Tangent>> I want to note the irony of my first PD symptoms were difficult signing my name (and brushing my teeth. ) PD usually starts of on one side of the body, for me the right side, for Michael J Fox it all began with a twitching baby finger on his left hand. That marked the beginning of the new me.
The signature as a cosmic pivot point. An abupt turn from our current reality into a new venture. has been the marque where by the old self is left behind/cast off and a new self opens. Here are a few thresholds where I signed on the dotted line and astral projected to a new reality, or newer unimagined version of me
Freedom My first memorable signature was my drivers license. I was beyond excited to be an official driver. (i had driven tractors, hay trucks, assorted 1/2 tons on the dirt roads and fields of our family farm since i could reach the pedals. I even put many miles on my first car at age 15, a 1964 mini. In Parrsboro the driver inspector comes from Amherst to test every Friday at the the legion. My 16th birthday was the day before. Heaven. Thus began a long and beautiful relationship with the auto and the joy of the open road. One example of a life time of signatures.
Other signature moments where life as we knew it was transformed and new identity or life began include:
- Student loan agreement for enabling me to attend University
- Credit card application
- Job Contract with school board as teacher or ns gov position as family violence prevention training officer
- One signature to get married the first time and about 7 signatures to get unmarried.
Next time you pick up a pen as you sign your old life away to make ready for the new you to emerge, just remember, you’ve done it once or twice before.