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| The Murray Machine |
Well here we are a year later and a little deja vu with June's entry. Topics are pretty much the same as a year ago; ALS Walk, Boys Golf Weekend and a visit to McMaster, but I promise I won't cut and paste last year's content! All new, no reruns.
My typing hands are somewhat failing me so no busting me for spelling or missed spaces! I've always been a two handed typer thanks to my Mom! My Mother made me take typing in high school, originally much to my protest. As I sulked on my way down the hall to that first class, it was not made any better by the fact that my buddy's were busting me along the way. When we parted and I entered the class of shame, imagine my surprise when I finally lifted my head, and realized there was only two other guys in the class and 15-20 girls! Now typing was looking really good! It was so good that I signed up the next year too, and the rest, they say, is typing history. Mother knows best!
But alas, (dramatic word insert!) as my hand strength wanes, so does my ability on the keyboard, and I am left with a "hybrid" of some form of typing not taught anywhere and fatigue drives that ability. I may resort to "text or twitter"language...ur, c, omg, k, ttyl, in the future but will provide a glossary beforehand!lol
Okay, enough nattering and reminiscing...on to June which was jam packed!
June 2nd- Georgetown ALS Walk
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We awoke to a cool and blustery day, with again, the threat of some rain. Surely we wouldn't experience the "monsoon" conditions of a year ago again! The walk was moved to a new venue this year to accommodate the hundreds who attend, and to be able to have an event, rain or shine. Fortunately, the rain held off, it was a cool day and the walk was a resounding success with over $150,000 raised for ALS, one third of that by The Murray Machine!
Our family was once again overwhelmed by the love and support shown by those in attendance and the words of encouragement from many others spread across North America.
As you can see in the picture at the top, The Murray Machine, had over a hundred strong and even managed to be organized enough for the photo!
My always amazing sister, Pam, along with friends Sue and Shelley, and Cousin Sue Mac managed our registration table and kept everyone informed and going in the right direction. It was a smooth operation, very organized, so I was very proud of them!lol
As I have mentioned some entries ago, my emotions from this disease, specifically, laughing and crying, are somewhat uncontrollable, at times, and sneak up on me.
I woke up that morning and I wasn't sure what the day would bring. Would I hold it together or be a mess with each new person I saw? Though I'm not sure anyone would of cared either way, I'm happy to report I made it through the day with minimal drama!(and the sunglasses helped when needed)
It was an inspiring day.
Family, old friends, new friends, work friends, friends I haven't seen for years. I could go on and on with stories of everyone I saw.
Every time I turned, in the sea of faces, there was someone else to connect with. Even amongst the many others there, that I did not know, there was a sense of kinship, hope and energy that I could only draw from.
I would be remiss to not shout out to the Sutherland Supporters. Jeff, Darlene and family, since we met, have been nothing short of angels, providing us with the strength to face this hideous disease and how to still find the humour in the fight.
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| Me, WC and friends |
My wobbly legs completed the 4 laps of the walk. With the assistance of WC I did 2 laps, and my boy Bubba, pushed WC and I, the other 2 laps. It wasn't a marathon, but it felt like my marathon, relief and accomplishment when it was over!
My Mom and Dad were the official Murray ambassadors, greeting and taking the time to chat with all. If that wasn't enough we then saddled them with our kids for the rest of the day.
Susan and I went from the walk, along with much of our gang, to celebrate the marriage of our boy Bullet and his bride, Laurie.
Thanks Mom and Dad for your energy and support, we love you!
I'm happy to report, after all that, I did wake up on Sunday. I wasn't much of a parent or partner that day! More a pile of goo, sleeping off and on, only rising to feed. By Tuesday I was conscious again thinking of ways to make the walk again next year! Thanks to all for their love, energy and support for the walk!
PBGC June 8, 9, 10
Antonio, Zorky, Speedy, Tuna, Gus, Bullet, Wendell, Bubba and Goalie(photographer)! Who wouldn't want to hang out with this crew!
The annual Poor Boy's Golf Classic(14 or so years running)took place this year in London and I was able to resume my role as ambassador, guest host, commentator, you get the idea, for the 2nd year. I joined up with the boys on Saturday, for the back nine, after Wendell Sr chaffeured me out to London. Thanks Dad!
I was able to climb on my own cart and get right in the mix of the 2 man scramble. Seeding round happened on friday so the teams were set.
As I jumped back and forth between the two groups, I felt my first pang of regret, for the season, of not being able to golf. Last summer I was able to "play" but this year I have my doubts...hands, balance...never say never, but it would be an abridged version for sure. With that said, I took it all in; the course, blue sky, each of the holes and how I might play them, and of course, the real reason I'm there, to hear the endless banter amongst the boys!
Saturday's round ended and the usual shenanigan's started. Back to the hotel, lots of salty snacks, beverages and chirping about the round, setting the table for Sunday's individual stroke play.
Off to dinner after that, more chirping, lots of food and drink and with the Stanley Cup final on what more do a bunch of old guys need!
Sunday gets a little quieter on the course. The grips tighten a little with the pressure with most just trying to survive, either from the night before, or the 3rd round in a row...all the injuries come out! It was a hot and humid day as well so being 'ambassador" I bolted for the coolness of the clubhouse after 15 holes, enough already!
The day ended with Zorky and Speedy taking the crown. The usual fix and sandbagger comments were flying, that goes with winning the crown jewel!
I wouldn't have missed it for the world. They may look like a motley crew but there my motley crew!
They looked after me quietly all weekend but I wasn't spared any of the abuse and that's what I love, is that normal?!lol
It just goes to show that ALS may have my body but I draw my strength and spirit from those around me.
I love you guys...
McMaster Clinic June 22
Off we went on our quarterly visit. Dad was my escort on this visit. Susan had taken time off recently to get our new "manny" oriented, that coupled with a new boss, and we didn't want to push our luck! Plus it was an 8am appointment so Dad was the guy.
Overall rating of the visit, 1-5, I'd say a 2-2.5, why you ask, well let me fill you in!
As per usual, met with Dr. Turnbull, Jane and the recent med student. Did the head to toe rundown and check up.
Then on to the key topics:
I've had increasing(now nightly) cramps and spasms in my legs and feet. Make you fly out of bed kinda cramps, except I can't fly out of bed anymore! So it's a combination of agony as the cramp holds on and I try to get up. Not that I can reach, but rubbing doesn't help either, almost untouchable, and my feet will just lock. So before we try drugs, just started Magnesium Citrate, product called "Calm" and I'm seeing some improvements.
Next, been having some positional vertigo, mostly when I lie down and sit up, the world goes for a little twirl. Not great when you already have the balance of a toddler! Completed something called the Epley Manoeuvre and it seems to have helped a great deal.
And lastly, the shoulders. Shoulder range of motion and my overall balance, I would say, have both decreased since my last visit in February. For example, with my shoulders, if you are sitting in a chair with your hands on your knees, straighten your arm and lift. I'm sure most of you can still raise your arm straight up by your ear. I'm barely making it to parallel or straight out, so that presents some challenges!
Our next conversation was my license....so after a chat, the letter will or has been sent, from Dr. Turnbull, to the Ministry informing them the need for me to be assessed to continue driving. Let's be clear, I can still drive but the Dr's concern is my reaction time if a situation occurs, which yes I know is a part of driving! So I await notification from the Ministry on the next steps. Surprised, no, but another key "milestone" that I wasn't looking forward to. I will probably wait till my next blog to go into that one...
On to Jody, in house Respirologist. Overall numbers were okay. Again, we measure strength and output. Versus March, one was slightly down and the other the same . Going to try and stay ahead of the curve so I came home with a new nifty toy and exercises called "breath stacking". See the youtube link, below. Just a version of "suck and blowing" air which most will say I have lots of!
http://www.youtube.com/watch?v=TKh7znrK3AA
That was it, couple of setbacks but certainly no big surprises. It was great having Dad with me to meet the clinic team. Voice is holding on, funny and frustrating, at times. Our interim Nanny looks at me sometimes as if I got three heads or as lost in translation, there might be a banana on top of my steak! Good times!
So it was a busy June and we survived! Already second week in July and its been hot! Be back in a couple weeks with some quick updates!
Stay cool...
