Tuesday, 18 December 2012
2 Years...Health
"ALS is not contagious, but it is fatal. For the most part, the battle is short, with 80 per cent losing their lives within two to five years of diagnosis."
Well, happy 2 years. November 17, 2010 was when we were given the news of my diagnosis.
The above quote is one of the joyous lines you read when you visit the ALS website and click on "What is ALS?"... one of the first things I did in the days following.
Shitty disease...shitty answer.
Now, let's not be all doom and gloom! Renos almost completed, and I now have an elevator and a man cave washroom, something I hadn't dreamed of having!
This is my health update which will be; some good, some bad, maybe some rants and whining(remember my blog, my choice!), some tears and some laughs. No pictures, just the facts!
But, I'm going to give you all of it in this update(well most), head(inside and out) to toe. So, if you can't handle the truth...then look away!
End of September, Susan and I headed to McMaster for our quarterly check in. As I mentioned previously, we do the circuit with the clinic team and see what needs to be done moving forward. As with most of us, I usually know where I stand, in terms to my capabilities, before we go...example, swallowing, arm and leg movement, voice...you get the idea.
So here is where we are today...
Good news is I have hit the weight I always wanted to be! Bad news, still no 6 pack and even less muscle! I'm down 25 lbs over the last 18 months mostly due to muscle loss and eating less. My swallowing is generally fine. Eating just takes longer due to smaller bites, bad hands and fatigue, hence the eating less. I've been encouraged not to lose much more weight, so keeping snacks available and the "Boost" to keep the calories up.
My hands aren't great, left worse than the right. I don't grab much with my left, kinda have to "wedge" things into my hand to hold. Still some grip but limited. Right hand is currently in control of most things; eating, shaving, drinking, day to day stuff. The only fun game is picking up small things! Smarties, pills, vitamins...hours of entertainment trying to get a grip and then get to my mouth!
Short story...Those that know me know that I have always loved going to the movies. With movies goes popcorn, right?! Well, I've still been going but have recently abandoned popcorn. I know what your thinking, choking hazard...wrong! Pure frustration! I can only grab, like, one kernel at a time! That's not how you eat popcorn, you need a handful to shove in! I challenge you to try and eat one kernel at a time, you will go crazy!
Legs. Still moving. For those older folks, I do a little of the Tim Conway old man shuffle from the Carol Burnett show.
Had a fall at Thanksgiving, fortunately, landed on my head! Minor concussion. However, that combined with a new drug I was just starting for leg cramps, and my balance was whacked! Couple weeks of recovery and drug elimination and I felt better.
Today, still walking, somewhat, but very very short distances. My balance isn't great...a gust of wind or a sneeze could land me on my ass in a hurry!Any stairs require assistance, and those around me, would prefer my walker is nearby, or in use, at all times. Outings definitely require the walker, scooter or wheelchair.
Otherwise, physically, there isn't a lot of pain. I battle fatigue, so planning becomes critical, and we call it a day.
The mental side...
Without any holiday sugar coating, the last few months have been extremely frustrating, stressful and exhausting.
Renovations, losing my license, falling, adapting to my physical limitations, parenting and partnering have all offered their own challenges. Each one chips away at me, and also those around me.
The 3 P's...physical, parenting and partnering are far and away my biggest struggles yet.
On the physical side it is really about needing support day to day and though dignity was my original word, I think as someone said to me the other day, losing my vanity is really what is happening, not my dignity.
Now this is a stretch, but if I likened it to the aging Hollywood actor...dwindling parts, not as hot anymore, maybe some work done, falling behind on fashion...do you see the parallels, that's what is happening!lol
The reality is I need help on many of the day to day "vanity" tasks; dressing, eating, shaving, primping and for those that know me well I do take a level of pride in my appearance! I haven't abandoned such but now have to "coach" others to get me close! One adaptable measure will be, as I struggle to wash my hair, you will see it become increasingly shorter, maybe even an 80's mohawk!
So my vanity will be challenged! Anyone know a mobile spa or esthetician!
Parenting was already hard. A fact that most of us know.
I have 2 beautiful children and god willing they will grow up to be wonderful teen's and adults.
I hope if nothing else that this disease teaches them compassion, patience, resiliency, understanding and a sense of family and community.
But right now it's been challenging. Our kids are 7 and 4. As my physical capabilities, and voice, fade, I am now no longer able to care for the kids alone. Ben is 7 and understanding his emotions, most times, and can be spoken to. Sarah, at 4, is learning how to express her emotions, and clearly has figured out that Daddy can't pick her up, can't follow her, can't make her do things she doesn't want to.
This burden then all falls on Susan.
It's frustrating, upsetting...you name it. Dad's are supposed to be the "physical" parent...the rolling around, big cuddles, swinging, hanging and I'm missing that, especially with Sarah.
I swear Susan bears more of the brunt of this disease than I do. She's carrying the load 24/7, only complaining when she has to do one of my old "blue" jobs!
We'll figure it out. Susan's been great at using our resources for support and ideas and we are adapting and reinforcing our "one team" approach with the kids. We continue to look for whatever ways I can "join in", parent and continue to impact the lives of our kids.
The last "P" is my partner. Marriage...also hard. Marriage, throw in a disease...hmmmm, what would the word be?
At this point we will use overwhelmed.
I'm overwhelmed by it all and making sure I'm a good partner to Susan, well if I graded myself right now, I'm maybe a D-(I'm not going to fail myself!)
Susan continues to be my rock. Working, parenting, caregiver, you name it. Yes we partner, but she does the heavy lifting, pink and blue jobs! We continue to laugh(though she's not always that funny) and cry and that always makes the day better. I couldn't imagine doing one day of this without her, and even when she drives me crazy, I love her, to the moon and back...
Look, life is hard and there are others out in the world a lot worse off...just turn on the news.
It's about dealing with change and making it work. We are blessed to have family and friends around us who have been there every step of the way to make it all easier.
My New Year's resolution, and from a page out of the old Yum! manual, I publicly declare, to my thousands of readers, to better embrace the changes ahead and improve my partner grading to an A!!!
So as we approach the holiday season, I say hug a little harder, smile more and tell those nearest that you love them!(even if that's not your thing)
A safe and Happy Holidays to all!
See you in 2013!
Cheers!
Tuesday, 30 October 2012
Seasons change...and so do many things!
Wow, where did September and October go?
Like most probably felt, September and October were a whirlwind! The leaves and temperature both are changing and so are many things in our lives.
Both kids in school full time and new activities, renos in full swing(hence my blog output, too much demo around me!), license letter received, another visit to MacMaster, new "manny" arrived and dealing with continuing changes in day to day living! Whew!
September began with school. Ben in grade 2, Sarah began JK, full time. It was quite an adjustment sending Sarah off...not for her but for me! Believe or not, I'm coming up on two years of being at home, and not having my "lunch buddy" around all of a sudden was maybe a shock I wasn't ready for and just more damn change!
Both kids enjoying school and new activities. Ben back at hockey and doing some hip hop dancing, Sarah in jazz so we see some new moves from both every week. Sarah currently hooked on 2 CD's in her room, Black Eyed Peas and Christmas carols, eclectic music tastes already, just like her mother!
Driving Miss Daisy...
I had mentioned in my last entry that I hadn't received my letter yet from the Ministry in regards to my license. Well, I received the letter shortly thereafter and ironically as I sit here typing, on October 12th, I am 8.5 hrs away from my license being suspended.
We returned our vehicle this morning and we are now a one car family.
Though it's clearly time, I would have to say, with a manly tongue in cheek and small lip quiver, that it is a big blow to the independence. I continue to try and hold on to each one of these "moments", things that most of us take for granted, and squeeze out just a little more time. But, as with all good things, it must come to an end, and after 31 years, it has.
Thankfully, I am blessed, to have a "legion" of drivers around me and still have my scooters for the "short hauls"!
Miss Daisy only had Hoke(movie trivia) as her driver so I have a leg up on her, as they say!
The "preferred" parking sticker doesn't hurt either, folks line up when I have that tucked in my pocket!
I look forward to enjoying the ride from others...Home James!
Renos...
As I type today we are in the home stretch! Elevator is up and running and has been a godsend. Had a little fall before Thanksgiving so when the elevator was up and going a couple of days later, most who have seen me on stairs, breathed a sigh of relief!
New bathroom is almost complete, looks good, if I do say so myself, my own man spa!
Hardwood has now replaced all the carpet upstairs, lessens the stumble factor, and more conducive for the walker and wheelchair.
All in all, it has been a good experience. Our contractor has gone above and beyond to help us keep some "normality" in our day to day living. With that said, and those who have lived through renos, I won't feel bad when they(contractor and subs) are all gone! Here's some photos of the fun!
We survived Superstorm Sandy last night! I won't lie, after the first power flicker, I was avoiding the elevator, though that would have made for a great blog entry!
Health update to come shortly, Happy Halloween!
Like most probably felt, September and October were a whirlwind! The leaves and temperature both are changing and so are many things in our lives.
Both kids in school full time and new activities, renos in full swing(hence my blog output, too much demo around me!), license letter received, another visit to MacMaster, new "manny" arrived and dealing with continuing changes in day to day living! Whew!
Both kids enjoying school and new activities. Ben back at hockey and doing some hip hop dancing, Sarah in jazz so we see some new moves from both every week. Sarah currently hooked on 2 CD's in her room, Black Eyed Peas and Christmas carols, eclectic music tastes already, just like her mother!
Driving Miss Daisy...
I had mentioned in my last entry that I hadn't received my letter yet from the Ministry in regards to my license. Well, I received the letter shortly thereafter and ironically as I sit here typing, on October 12th, I am 8.5 hrs away from my license being suspended.
We returned our vehicle this morning and we are now a one car family.
Though it's clearly time, I would have to say, with a manly tongue in cheek and small lip quiver, that it is a big blow to the independence. I continue to try and hold on to each one of these "moments", things that most of us take for granted, and squeeze out just a little more time. But, as with all good things, it must come to an end, and after 31 years, it has.
Thankfully, I am blessed, to have a "legion" of drivers around me and still have my scooters for the "short hauls"!
Miss Daisy only had Hoke(movie trivia) as her driver so I have a leg up on her, as they say!
The "preferred" parking sticker doesn't hurt either, folks line up when I have that tucked in my pocket!
I look forward to enjoying the ride from others...Home James!
Renos...
As I type today we are in the home stretch! Elevator is up and running and has been a godsend. Had a little fall before Thanksgiving so when the elevator was up and going a couple of days later, most who have seen me on stairs, breathed a sigh of relief!
New bathroom is almost complete, looks good, if I do say so myself, my own man spa!
Hardwood has now replaced all the carpet upstairs, lessens the stumble factor, and more conducive for the walker and wheelchair.
All in all, it has been a good experience. Our contractor has gone above and beyond to help us keep some "normality" in our day to day living. With that said, and those who have lived through renos, I won't feel bad when they(contractor and subs) are all gone! Here's some photos of the fun!
We survived Superstorm Sandy last night! I won't lie, after the first power flicker, I was avoiding the elevator, though that would have made for a great blog entry!
Health update to come shortly, Happy Halloween!
Wednesday, 15 August 2012
July...The heat is on!
  |
Hi everyone! It's been a short few weeks since we last chatted but thought I would drop by with a short note, as promised!
As they say these are the "dog days" of summer! We have experienced record setting temperatures in Ontario during July. Many days hovered in the mid 30's with humidity taking it into the 40's...ughhh!
I have quickly found that while warmer temperatures keep my body moving better, minor levels of humidity are my enemy causing, similar to most, fatigue and tougher breathing. So needless to say, like a cold January day, I have been somewhat sequestered to the indoors.
I spent the early part of July in a couple of meetings with the CCAC(Community Care Access Centre). It is a group that I can honestly say I knew little about till my diagnosis, and then, my sister, the social worker, also filled me in. I stole the blurb below which somewhat defines what they do and the link to their website as well. It is not a group that I wish upon you for the future but we have definitely benefitted by engagement with them. They are a government group, yes, but to date have provided us with an Occupational and Physical Therapist, both in a timely fashion, and both, great people and professionals. They have been invaluable resources, from a learning perspective and future options available. That's your little education update for the day! We will leave the politics out of it and get back to more about me!lol
CCAC
"...Community Care Access Centres (CCACs) are committed to supporting and strengthening functional integration alongside our health system partners and, in doing so, will work closely with the Local Health Integration Networks (LHINs) in order to deliver truly patient-centred care. As Community Care Access Centres, we are committed to playing a leadership role in working in a more integrated fashion with primary care, advancing our role in cross-system patient navigation for the populations who need it the most and in improving patient outcomes and experience by driving quality based reform."
Health
This month I will say I'm fine.
Unfortunately, over the last month or so, I have noticed my legs are failing me more. A few more wobbles, a fall, tougher getting out of chairs etc It seems if my legs are at 90 degrees, or less, when sitting, I might not make it up.
I continue doing physio and my exercises to keep things moving. The frustrating part is what I call the "diminishing returns". We have all experienced the results accomplished say when we eat better, or exercise, we see the positive results and the differences. Now don't get me wrong, what I'm currently doing, it does help and I won't stop, but the frustration grows when you know the results won't be turning this damn thing around. But we will keep at it with the hope we slow it up!
I have also felt that I'm losing more independence recently...dressing, eating, moving around. It has been suggested to me that I have been a little grumpy of late! Well, I will turn that around! I'm learning that as I accept my new "limitation" and reality then I can move on to the next. August has just felt like there have been more changes than less, and with that, I've been a little slow on the acceptance part! I promise to be better going forward!
Updates
This month I will say I'm fine.
Unfortunately, over the last month or so, I have noticed my legs are failing me more. A few more wobbles, a fall, tougher getting out of chairs etc It seems if my legs are at 90 degrees, or less, when sitting, I might not make it up.
I continue doing physio and my exercises to keep things moving. The frustrating part is what I call the "diminishing returns". We have all experienced the results accomplished say when we eat better, or exercise, we see the positive results and the differences. Now don't get me wrong, what I'm currently doing, it does help and I won't stop, but the frustration grows when you know the results won't be turning this damn thing around. But we will keep at it with the hope we slow it up!
I have also felt that I'm losing more independence recently...dressing, eating, moving around. It has been suggested to me that I have been a little grumpy of late! Well, I will turn that around! I'm learning that as I accept my new "limitation" and reality then I can move on to the next. August has just felt like there have been more changes than less, and with that, I've been a little slow on the acceptance part! I promise to be better going forward!
Updates
As I mentioned earlier in July, the doctor had made the decision that it was probably time that he notified the ministry in regards to my license. To date we haven't received any notification, we check that mailbox everyday! It's going to be a tough pill to swallow for sure, a big blow to my independence that I have tried dearly to hold on to. Walker, wheelchair and scooter part of the "tools" now keeping me engaged in daily routines. On the plus side, we can go down to one vehicle for a while and I can be chaffeured around by family and friends!
I was risking it recently though, as we went around the corner to a neighbour's pool party and I took the scooter. Well, long story, short, I had a beer and climbed on that scooter, horn blowing and drove home! Crazy times!
Grandpa picked us up in Moncton and when we arrived, G&G had all comforts of home in place to deal with me! A ramp to the "bunky", power lounge chair, walker and scooter. Imagine if you will the hospitality and down home feel of PEI as my Mom and Dad were able to find all this for our short 8 day visit.
At the cottage in PEI, little cottage toilets almost had me stranded a couple of times, but I managed to "rock" and get back on my feet! Phew, I know too much info!
We had a great week and great weather. I won't lie, there was moments of stress and some angst getting around, but I made it to the beach a couple of times, where the kids are in their glory, so it was all worth it.
Ben loves the outdoors and the beach. He went deep sea fishing for the first time with Susan and brought home enough cod and mackeral for his Grandparents, Aunt's and Uncle's.
Sarah, plunk her in shallow water, with a pail, shovel, shells and hermit crabs around and she is content for hours!
Got to see lots of family, and I cherish those moments seeing those that I don't see enough.(Missed Auntie Joyce though)
G&G, as always, made the week easier and made the "moment matter". Thanks Mom and Dad!
As I've said many times before, PEI holds a special place in my heart, and hopefully, a part of my legacy, that Ben and Sarah will enjoy for many years to come.I was risking it recently though, as we went around the corner to a neighbour's pool party and I took the scooter. Well, long story, short, I had a beer and climbed on that scooter, horn blowing and drove home! Crazy times!
Renos were slow to get going so we made a last minute decision to escape the heat and make our annual pilgrimage to PEI. Grandma and Grandpa's cottage was our destination and we flew into Moncton. Susan got us all there in one piece juggling all of our special needs! She's the bomb!
 |
| Ben's first fish deep sea |
 |
| Sarah |
At the cottage in PEI, little cottage toilets almost had me stranded a couple of times, but I managed to "rock" and get back on my feet! Phew, I know too much info!
We had a great week and great weather. I won't lie, there was moments of stress and some angst getting around, but I made it to the beach a couple of times, where the kids are in their glory, so it was all worth it. Ben loves the outdoors and the beach. He went deep sea fishing for the first time with Susan and brought home enough cod and mackeral for his Grandparents, Aunt's and Uncle's.
Sarah, plunk her in shallow water, with a pail, shovel, shells and hermit crabs around and she is content for hours!
Got to see lots of family, and I cherish those moments seeing those that I don't see enough.(Missed Auntie Joyce though)
G&G, as always, made the week easier and made the "moment matter". Thanks Mom and Dad!
The good news, renos are underway! Been shopping for hardwood, tile, fixtures and at least making that part of the fun. It will be chaos inside soon but we will manage or just get the hell out of here!
I've gone on and on again, begone with ya! Enjoy the last couple weeks of summer!
From the Foo...
"It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again"
I've gone on and on again, begone with ya! Enjoy the last couple weeks of summer!
From the Foo...
"It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again"
Tuesday, 10 July 2012
June...repeated!
 |
| 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
.jpeg)
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.
 |
| 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...
Friday, 18 May 2012
April, When it rains...
Oh where to begin?
I have found this blog thing quite cathartic. I'm not sure that is the right word, or one that is used too frequently as it seems somewhat "Hollywoodesque",
Being able to "ramble" on at times, poke fun and share our experiences has proven to be a welcomed outlet for me. It was an idea I originally scoffed at, when a friend suggested it, and here I am a year later "blogging" it out!
April has been a draining month...hence the title...when it rains...
Aside from the initial shock of the diagnosis, I would venture to say that April 2012, has been one of our toughest months, emotionally. It seems that every decision that came up, or had to be made this month, was linked, in someway shape or form, to ALS.
Now, I'm not going to start whining(alright maybe a bit). We all have a lot on our plate and very busy lives, and for the most part, we are taking things in stride and moving forward. But, hey, if you've been following along, you know what comes next... my blog, my space, so time to vent a little!
April has "showered" us with reno decisions, car lease decisions, nanny departure, kids, house care, street name change, just to start the list off!
April started with our new street name. We now live on Silver Pond Drive(formerly Ballantine Drive). No we didn't move but a new development is beginning across from us and the plan changed, and long story short, our street name had to change. Now, no one finds us!
Renos haven't started yet. We received our quote and that brings reality to not only the project getting underway, but also the final number on the quote. The old "Buyer Remorse" starts to set in and you begin asking all those questions again...Should we? What if? Does that make sense? Well we've tried to push through that, again, and are now working on the "tough" decisions; paint colours, hardwood, fixtures, toilets, you know the critical stuff! Who knew there was so many different toilets to choose from!
Car is due to go back, lease is up. Easy decision right, get another! Yet wait...do we need another, how much longer will I be driving? Van is probably in the future, need to learn about vans and retro-fits? Probably just get a Vespa for me to toot around town for now!
We are Nanny-less for the first time in three years. I know, I know, your heart bleeds for me! Now before you start getting all self righteous on me and telling me to suck it up, hear me out! The Nanny over the past few months has really become the "Manny". As much as it pains me to admit, I need some support...whether its help to open things, meal prep, putting on a jacket, reaching items, our Manny has become my "helper, sous chef, support person" during the day. I, unfortunately, cannot look after my own daughter, fulltime, so for the time being we've had to arrange daycare as well. So days are much too quiet now without Sarah around. Now that I'm alone during the day, Susan wants me to "wear" my phone, aka belt clip,(an accessory for those that know me I have always shunned) and Dad has mentioned the "I've fallen" button, come on!
New Manny is on the way but in the short term we are sucking it up...doing laundry, cleaning, maybe not as well, but oh whoa is me, we will survive!
Then as we move into Spring, it's lawn and house care. First I will admit I'm lawn proud. It's not perfect but Susan and I have worked hard to get the garden and grass to where they are at today! Being on a corner lot I can say with my itty bitty chest stuck out that we get a number of compliments on our yard!
Now I have to relinquish that control to someone else! I'm getting better at not sweating the small stuff but the lawn has been a tough one to accept! The other is my garage. My neighbour still tells the story of this new guy moving in and how he was scrubbing, painting and making his garage all pretty before they moved in! Again, similiar to the lawn, I've had to accept others don't quite get that passion nor understand it!(except my Dad who as the "Project Manager" keeps me from tipping over the edge!)
And lastly...the kids.
I was sitting in the office recently, we had just put the kids to bed, and Susan was lying down with Ben in his room.
At one point, as Ben and Susan were chatting, I heard Ben say "well Daddy's different, he can't do what other Daddy's do, he can't play as much, he can't ride with me, he can't go the park..."
In an instant, I lost my breath, couldn't breathe and felt sick to my stomach.
Susan, as always bless her heart, talked about the things that I still can do and talked to him about how he was feeling.
The damage was done. Nothing is more true than the spoken word of a child.
I don't care what the disease does to me, I've had forty plus years to live it out. But what breaks me is what this disease does and robs from Ben and Sarah.
Ben is very aware of ALS and Daddy's illness. We let him know when things change, what is going on and that he can always talk about things should he choose. Sarah, at this point, "knows" but we will be chatting with her before the walk on June 2nd to help her understand a little more. The tough part with Sarah is she will know no different than an ALS Daddy.
The silver lining...
We got a motorized scooter from the Sutherland's recently and Ben was really excited. When I asked Why? He said "Daddy you could ride around the block with me and go to the park!" I said, "Yes I can".
That was a moment I will treasure forever...
Till next time!
Never, never, never give up
Winston Churchill
ALS Walk, Saturday June 2nd
I have found this blog thing quite cathartic. I'm not sure that is the right word, or one that is used too frequently as it seems somewhat "Hollywoodesque",
Being able to "ramble" on at times, poke fun and share our experiences has proven to be a welcomed outlet for me. It was an idea I originally scoffed at, when a friend suggested it, and here I am a year later "blogging" it out!
April has been a draining month...hence the title...when it rains...
Aside from the initial shock of the diagnosis, I would venture to say that April 2012, has been one of our toughest months, emotionally. It seems that every decision that came up, or had to be made this month, was linked, in someway shape or form, to ALS.
Now, I'm not going to start whining(alright maybe a bit). We all have a lot on our plate and very busy lives, and for the most part, we are taking things in stride and moving forward. But, hey, if you've been following along, you know what comes next... my blog, my space, so time to vent a little!
April has "showered" us with reno decisions, car lease decisions, nanny departure, kids, house care, street name change, just to start the list off!
April started with our new street name. We now live on Silver Pond Drive(formerly Ballantine Drive). No we didn't move but a new development is beginning across from us and the plan changed, and long story short, our street name had to change. Now, no one finds us!
Renos haven't started yet. We received our quote and that brings reality to not only the project getting underway, but also the final number on the quote. The old "Buyer Remorse" starts to set in and you begin asking all those questions again...Should we? What if? Does that make sense? Well we've tried to push through that, again, and are now working on the "tough" decisions; paint colours, hardwood, fixtures, toilets, you know the critical stuff! Who knew there was so many different toilets to choose from!
Car is due to go back, lease is up. Easy decision right, get another! Yet wait...do we need another, how much longer will I be driving? Van is probably in the future, need to learn about vans and retro-fits? Probably just get a Vespa for me to toot around town for now!
We are Nanny-less for the first time in three years. I know, I know, your heart bleeds for me! Now before you start getting all self righteous on me and telling me to suck it up, hear me out! The Nanny over the past few months has really become the "Manny". As much as it pains me to admit, I need some support...whether its help to open things, meal prep, putting on a jacket, reaching items, our Manny has become my "helper, sous chef, support person" during the day. I, unfortunately, cannot look after my own daughter, fulltime, so for the time being we've had to arrange daycare as well. So days are much too quiet now without Sarah around. Now that I'm alone during the day, Susan wants me to "wear" my phone, aka belt clip,(an accessory for those that know me I have always shunned) and Dad has mentioned the "I've fallen" button, come on!
New Manny is on the way but in the short term we are sucking it up...doing laundry, cleaning, maybe not as well, but oh whoa is me, we will survive!
Then as we move into Spring, it's lawn and house care. First I will admit I'm lawn proud. It's not perfect but Susan and I have worked hard to get the garden and grass to where they are at today! Being on a corner lot I can say with my itty bitty chest stuck out that we get a number of compliments on our yard!
Now I have to relinquish that control to someone else! I'm getting better at not sweating the small stuff but the lawn has been a tough one to accept! The other is my garage. My neighbour still tells the story of this new guy moving in and how he was scrubbing, painting and making his garage all pretty before they moved in! Again, similiar to the lawn, I've had to accept others don't quite get that passion nor understand it!(except my Dad who as the "Project Manager" keeps me from tipping over the edge!)
And lastly...the kids.
I was sitting in the office recently, we had just put the kids to bed, and Susan was lying down with Ben in his room.
At one point, as Ben and Susan were chatting, I heard Ben say "well Daddy's different, he can't do what other Daddy's do, he can't play as much, he can't ride with me, he can't go the park..."
In an instant, I lost my breath, couldn't breathe and felt sick to my stomach.
Susan, as always bless her heart, talked about the things that I still can do and talked to him about how he was feeling.
The damage was done. Nothing is more true than the spoken word of a child.
I don't care what the disease does to me, I've had forty plus years to live it out. But what breaks me is what this disease does and robs from Ben and Sarah.
Ben is very aware of ALS and Daddy's illness. We let him know when things change, what is going on and that he can always talk about things should he choose. Sarah, at this point, "knows" but we will be chatting with her before the walk on June 2nd to help her understand a little more. The tough part with Sarah is she will know no different than an ALS Daddy.
The silver lining...
We got a motorized scooter from the Sutherland's recently and Ben was really excited. When I asked Why? He said "Daddy you could ride around the block with me and go to the park!" I said, "Yes I can".
That was a moment I will treasure forever...
Till next time!
Never, never, never give up
Winston Churchill
ALS Walk, Saturday June 2nd
Monday, 2 April 2012
Many Firsts...and Update
Hi all,
well where do I begin? It's been a jammed pack couple of months since my last entry...McMaster visit, Toronto Rehab Clinic visit, reno decisions and a family trip to Florida! So being the type A sort why don't we go chronologically or "in order" as they say! You might want to get a coffee or set the alarm to wake you as this could be a long one! Apparently, I'm going to need to blog more frequently!
First things first, celebrated my 47th birthday with family and friends in February! Enough said.
Next, also in February, we celebrated the "princess" birthday(no not Susan!) with Sarah turning 4!
2 parties were in order as we celebrated early on the Murray side before G&G headed south. Then, a party, on the day of, with the Anderson clan. Pink and purple were the colours of the day.
Give Dad credit for his fashion sense as Sarah selected Daddy's dress over the one Mommy bought her!
March 2nd-McMaster ALS clinic
Off on our quarterly visit we went. Last visit was November and at that time, overall, things were holding. Got poked and prodded a little more than usual on this visit. A neurology resident was in with our regular doctor so we spent the first half hour with him going through the ringer. When Dr. Turnbull joined us we went through our updates.
No surprises really.
As I spoke about in February, hands are worse and legs are holding, but wobbly. Left hand is worse than the right which sucks when you are predominately left handed! So I'm learning to eat with my right as well as some "funky" bent utensils that I'm trying out.
Best example I can give you of my waning left, is when you pick food up with your fork and head for your mouth, stop about 3-4 inches away, right when you are going to make the turn to fire it in! That's where my hand stops and I can't make the turn and who knows where the food lands! It's a weird feeling when your mind wants to execute but your body refuses. Great weight loss program as you eat 50% less!
I digress, back to the visit! We also did a little driving test checking my rotation of hands and shoulders and reaction time with my feet. That coupled with Dr. Turnbull asking Susan whether she and the kids would still drive with me(she said yes,whew!) and I'm clear for another quarter. Reality is that Susan handles the long drives but I still have my freedom to zip around locally.
Other news, respiratory numbers remain solid with little change so that was good.
Our first new first was meeting with our ALS society rep and understanding the equipment pool program, what is available and how you apply for it. The pool is quite something, from grab bars to wheelchairs, walkers, recliners, hospital beds and much more, you "borrow" what you need, thereby lessening the financial and mental decisions. As the disease is progressive, each individual varies in their needs, and may only need a piece of equipment for a short time before needing something else. The pool provides that support.
After that, a check in with the team social worker to make sure I'm still a relatively happy soul and off to lunch! Changed it up this visit, went to the Lonestar for lunch, chippies and salsa, fajitas, mmmmmm!!
March 6th- Toronto Rehabilitation Clinic
As I had mentioned in a previous entry, MacMaster lost their speech pathologist and thereby referred me to Toronto Rehab to handle my future voice and communication needs. We weren't sure what to expect from this visit, another of the many firsts this month. Add to that the anxiety and apprehension that I was feeling realizing you are going to discuss your future without your voice.
The team quickly put Susan and I at ease upon arrival and after the cursory review of my case we got to work. We spent the next 2.5 hours looking at the different equipment available for the different stages I may enter in this journey. We started with our current computers; mouse adjustments, keyboard changes, tricks that I can use when things get more difficult typing.
Hey, did you know that your computer has the option to set up with an onscreen keyboard so if you lose the ability to type but can still manage a mouse, then you are good to go! Who knew, now I do! Also you have this "thing" called "Sticky Keys" which can be activated to eliminate the two key hold commands! Okay enough advice, I'm not your IT guy!
Next we moved onto my voice. We started with my current state. One of my current problems is projection and volume. Get me in a room with a lot of people and I strain to be heard, some actually would say that's okay enjoy that! Believe or not, it does require a fair bit of effort to speak and anything that assists with the energy conservation is okay with me.
So we started with a mic and amplifier. So picture me with my best Britney or Usher headset on, amplifier strapped on my hip and there you have it! Those of you that know my sister and I well will be scared that I'm going to constantly bust out a song, but hey, my disease, my equipment, my choice! At least if it's missing I know that Pam has it!
I did use it for about an hour and it did make a difference. I could talk at a volume comfortable, without strain, and adjust the amplifier as needed. I have one on the way.
We then looked at those devices that can assist once I lose my voice. This was a little harder but once over the emotional side of it you become intrigued and amazed by the technology and options.
I won't go on and on about all the options but it starts with an ipad size "box" that, in it's simplest terms, has a keyboard, word prediction, type in what you have to say, press speak and voila. I tested a few and it seemed pretty easy.
The last one I tested was a system that is eye controlled. We had seen it as Jeff Sutherland(Doctor from Georgetown with ALS) has one. It is truly amazing. A small camera calibrates your eyes on the screen, then from there you utilize your eyes on the screen keyboard to select letters and/or the word prediction tool. Once again when completed, hit speak and the words come out(you can also select your future sexy voice!). You can do email, surf the internet and, most importantly, turn on the T.V.! I played with it for 10-15 minutes and it seemed to be quite simple, incredible technology!
We then finished up with the team there(who were great by the way), understanding next steps and access. Lots of material to look at, and not surprisingly, we left there exhausted!
My emotions were mixed when we left, relieved and blessed that there is such technology available, but certainly not in any hurry to use it.
Floridaaaahhhh!
Off we went in the middle of March Break to Madiera Beach(Gulf side/St Pete's) for some warm weather and freeloading off Grandma and Grandpa Murray!
Many firsts on this trip.
I, usually was the planner, and get ready guy for our family trips. Not that Susan couldn't do it, but as travel was a part of my working life, it would just carry over to our personal lives. Now Susan has the task of getting us ready, out the door and to our destination. I'm still pretty capable on the admin side and make sure the itinerary and package is prepared!
If we were going to make it where we were going, and do some of the things that we wanted to while we were away, then for the first time I had to "give up" my independence when it came to my legs. As you can well imagine, I wasn't necessarily ready to give in and accept such. Susan began "planting the seed", mentioning here and there, some of her thoughts, as our trip grew closer.
So with that in mind, "First 1", we will call it, came at the Buffalo airport.(side note: first time flying out of Buffalo and it was great/definitely recommend!)
"First 1"...Wheelchair.
I will say I could of walked.
The reality is the fatigue I would have endured, the pace, and stress I would of put on Susan and the kids wasn't worth my stubborn pride.
So, somewhat reluctantly, at the Buffalo airport I settled into my first wheelchair. We made it to the gate on time, and with some perks along the way; shorter security line, somewhere to sit in the waiting area and pre-boarding! When we arrived in Tampa my "chair-iot" was waiting, at the plane's door, talk about service!
I needed the chair in Tampa airport, lots of walking, train shuttle to baggage, and on to the rental car counter. G&G met us at the airport which also helped us get to where we needed to.
Things I quickly learned about being in a wheelchair:
1. Both kids wanted to hitch a ride
2. Don't drag your feet and risk being sucked underneath the chair
3. Bring a plastic bag(see link below!) for wife's purse which was in my lap 80% of the time!
https://www.youtube.com/watch?v=DuScm9FZPmQ
We had a great time in Florida, perfect weather for 9 days, temperatures 25-28. G&G had a great condo on the beach overlooking the Gulf and looked after us all week. The kids loved it as their daily routine was beach, pool, eat and play.
We headed off to Busch Gardens one day and that is where I experienced "First 2".
"First 2"...The Scooter.
I was pre-warned as Susan had done her homework. If we were going to go I would need to rent a scooter, walking wasn't an option, nor was Susan pushing me around in a wheelchair all day. I nodded and sheepishly agreed to what I was being told!
Now I don't want to stereotype, but my vision of scooters in theme parks are very large Americans on them with the throttle in one hand and an ice cream cone in the other hand! I know, unfair, but that was my own messed up perception!
Early on I almost took a couple of people out. The throttle is hand controlled which was fine, but occasionally, I would press my foot down on the imaginary brake thinking that would stop us! Yikes!
Highlight of the day was a old fella on a custom scooter giving Ben and I the staredown. We were heading up a ramp and the old fella was showing off. So Ben and I flipped our rental scooter into high gear and "whizzed" past him...victory! We quietly, as Canadians, cheered together!
All in all, we had a great day, and the scooter was a saviour. Both Ben and Sarah were able to ride with me at different times for a rest.
The trip was a success, though exhausting, at times. I'm not sure that it was all holiday for the only working person in our family. She now has to corral three of us and make sure all of our needs are met and always before hers. It's one of the most frustrating things at this point, being unable to parent as I want to and trying to make sure I'm providing enough support for Susan. She continues to be our rock, a great mom, and a even better partner.
I guess that's why I chose to refer to it as my, or our, journey. When I originally was thinking about a title I had googled a few words and journey seemed to be the one that not only reflected my thoughts but also the course of ALS... "passage or progress from one stage to another".
You take the good with the bad, new discoveries along the way, experience some self awareness and certainly reflect on the past and present.
The journey continues...
Well, that's it, carry on as they say and thanks for stopping by!
2012 Walk for ALS-June 2, 2012
"Nobody can go back and start a new beginning, but anyone can start today and make a new ending."
well where do I begin? It's been a jammed pack couple of months since my last entry...McMaster visit, Toronto Rehab Clinic visit, reno decisions and a family trip to Florida! So being the type A sort why don't we go chronologically or "in order" as they say! You might want to get a coffee or set the alarm to wake you as this could be a long one! Apparently, I'm going to need to blog more frequently!
First things first, celebrated my 47th birthday with family and friends in February! Enough said.
Next, also in February, we celebrated the "princess" birthday(no not Susan!) with Sarah turning 4!2 parties were in order as we celebrated early on the Murray side before G&G headed south. Then, a party, on the day of, with the Anderson clan. Pink and purple were the colours of the day.
Give Dad credit for his fashion sense as Sarah selected Daddy's dress over the one Mommy bought her!
March 2nd-McMaster ALS clinic
Off on our quarterly visit we went. Last visit was November and at that time, overall, things were holding. Got poked and prodded a little more than usual on this visit. A neurology resident was in with our regular doctor so we spent the first half hour with him going through the ringer. When Dr. Turnbull joined us we went through our updates.
No surprises really.
As I spoke about in February, hands are worse and legs are holding, but wobbly. Left hand is worse than the right which sucks when you are predominately left handed! So I'm learning to eat with my right as well as some "funky" bent utensils that I'm trying out.
Best example I can give you of my waning left, is when you pick food up with your fork and head for your mouth, stop about 3-4 inches away, right when you are going to make the turn to fire it in! That's where my hand stops and I can't make the turn and who knows where the food lands! It's a weird feeling when your mind wants to execute but your body refuses. Great weight loss program as you eat 50% less!
I digress, back to the visit! We also did a little driving test checking my rotation of hands and shoulders and reaction time with my feet. That coupled with Dr. Turnbull asking Susan whether she and the kids would still drive with me(she said yes,whew!) and I'm clear for another quarter. Reality is that Susan handles the long drives but I still have my freedom to zip around locally.
Other news, respiratory numbers remain solid with little change so that was good.
Our first new first was meeting with our ALS society rep and understanding the equipment pool program, what is available and how you apply for it. The pool is quite something, from grab bars to wheelchairs, walkers, recliners, hospital beds and much more, you "borrow" what you need, thereby lessening the financial and mental decisions. As the disease is progressive, each individual varies in their needs, and may only need a piece of equipment for a short time before needing something else. The pool provides that support.
After that, a check in with the team social worker to make sure I'm still a relatively happy soul and off to lunch! Changed it up this visit, went to the Lonestar for lunch, chippies and salsa, fajitas, mmmmmm!!
March 6th- Toronto Rehabilitation Clinic
As I had mentioned in a previous entry, MacMaster lost their speech pathologist and thereby referred me to Toronto Rehab to handle my future voice and communication needs. We weren't sure what to expect from this visit, another of the many firsts this month. Add to that the anxiety and apprehension that I was feeling realizing you are going to discuss your future without your voice.
The team quickly put Susan and I at ease upon arrival and after the cursory review of my case we got to work. We spent the next 2.5 hours looking at the different equipment available for the different stages I may enter in this journey. We started with our current computers; mouse adjustments, keyboard changes, tricks that I can use when things get more difficult typing.
Hey, did you know that your computer has the option to set up with an onscreen keyboard so if you lose the ability to type but can still manage a mouse, then you are good to go! Who knew, now I do! Also you have this "thing" called "Sticky Keys" which can be activated to eliminate the two key hold commands! Okay enough advice, I'm not your IT guy!
Next we moved onto my voice. We started with my current state. One of my current problems is projection and volume. Get me in a room with a lot of people and I strain to be heard, some actually would say that's okay enjoy that! Believe or not, it does require a fair bit of effort to speak and anything that assists with the energy conservation is okay with me.
So we started with a mic and amplifier. So picture me with my best Britney or Usher headset on, amplifier strapped on my hip and there you have it! Those of you that know my sister and I well will be scared that I'm going to constantly bust out a song, but hey, my disease, my equipment, my choice! At least if it's missing I know that Pam has it!
I did use it for about an hour and it did make a difference. I could talk at a volume comfortable, without strain, and adjust the amplifier as needed. I have one on the way.
We then looked at those devices that can assist once I lose my voice. This was a little harder but once over the emotional side of it you become intrigued and amazed by the technology and options.
I won't go on and on about all the options but it starts with an ipad size "box" that, in it's simplest terms, has a keyboard, word prediction, type in what you have to say, press speak and voila. I tested a few and it seemed pretty easy.
The last one I tested was a system that is eye controlled. We had seen it as Jeff Sutherland(Doctor from Georgetown with ALS) has one. It is truly amazing. A small camera calibrates your eyes on the screen, then from there you utilize your eyes on the screen keyboard to select letters and/or the word prediction tool. Once again when completed, hit speak and the words come out(you can also select your future sexy voice!). You can do email, surf the internet and, most importantly, turn on the T.V.! I played with it for 10-15 minutes and it seemed to be quite simple, incredible technology!
We then finished up with the team there(who were great by the way), understanding next steps and access. Lots of material to look at, and not surprisingly, we left there exhausted!
My emotions were mixed when we left, relieved and blessed that there is such technology available, but certainly not in any hurry to use it.
Floridaaaahhhh!
Off we went in the middle of March Break to Madiera Beach(Gulf side/St Pete's) for some warm weather and freeloading off Grandma and Grandpa Murray!
Many firsts on this trip.
I, usually was the planner, and get ready guy for our family trips. Not that Susan couldn't do it, but as travel was a part of my working life, it would just carry over to our personal lives. Now Susan has the task of getting us ready, out the door and to our destination. I'm still pretty capable on the admin side and make sure the itinerary and package is prepared!
If we were going to make it where we were going, and do some of the things that we wanted to while we were away, then for the first time I had to "give up" my independence when it came to my legs. As you can well imagine, I wasn't necessarily ready to give in and accept such. Susan began "planting the seed", mentioning here and there, some of her thoughts, as our trip grew closer.
So with that in mind, "First 1", we will call it, came at the Buffalo airport.(side note: first time flying out of Buffalo and it was great/definitely recommend!)
"First 1"...Wheelchair.
I will say I could of walked.
The reality is the fatigue I would have endured, the pace, and stress I would of put on Susan and the kids wasn't worth my stubborn pride.
So, somewhat reluctantly, at the Buffalo airport I settled into my first wheelchair. We made it to the gate on time, and with some perks along the way; shorter security line, somewhere to sit in the waiting area and pre-boarding! When we arrived in Tampa my "chair-iot" was waiting, at the plane's door, talk about service!
I needed the chair in Tampa airport, lots of walking, train shuttle to baggage, and on to the rental car counter. G&G met us at the airport which also helped us get to where we needed to.
Things I quickly learned about being in a wheelchair:
1. Both kids wanted to hitch a ride
2. Don't drag your feet and risk being sucked underneath the chair
3. Bring a plastic bag(see link below!) for wife's purse which was in my lap 80% of the time!
https://www.youtube.com/watch?v=DuScm9FZPmQ
 |
| Condo view |
We had a great time in Florida, perfect weather for 9 days, temperatures 25-28. G&G had a great condo on the beach overlooking the Gulf and looked after us all week. The kids loved it as their daily routine was beach, pool, eat and play.
We headed off to Busch Gardens one day and that is where I experienced "First 2".
"First 2"...The Scooter.
I was pre-warned as Susan had done her homework. If we were going to go I would need to rent a scooter, walking wasn't an option, nor was Susan pushing me around in a wheelchair all day. I nodded and sheepishly agreed to what I was being told!
Now I don't want to stereotype, but my vision of scooters in theme parks are very large Americans on them with the throttle in one hand and an ice cream cone in the other hand! I know, unfair, but that was my own messed up perception!
 |
| My Sweet ride |
Early on I almost took a couple of people out. The throttle is hand controlled which was fine, but occasionally, I would press my foot down on the imaginary brake thinking that would stop us! Yikes!
Highlight of the day was a old fella on a custom scooter giving Ben and I the staredown. We were heading up a ramp and the old fella was showing off. So Ben and I flipped our rental scooter into high gear and "whizzed" past him...victory! We quietly, as Canadians, cheered together!
All in all, we had a great day, and the scooter was a saviour. Both Ben and Sarah were able to ride with me at different times for a rest.
The trip was a success, though exhausting, at times. I'm not sure that it was all holiday for the only working person in our family. She now has to corral three of us and make sure all of our needs are met and always before hers. It's one of the most frustrating things at this point, being unable to parent as I want to and trying to make sure I'm providing enough support for Susan. She continues to be our rock, a great mom, and a even better partner.
I guess that's why I chose to refer to it as my, or our, journey. When I originally was thinking about a title I had googled a few words and journey seemed to be the one that not only reflected my thoughts but also the course of ALS... "passage or progress from one stage to another".
You take the good with the bad, new discoveries along the way, experience some self awareness and certainly reflect on the past and present.
The journey continues...
Well, that's it, carry on as they say and thanks for stopping by!
2012 Walk for ALS-June 2, 2012
"Nobody can go back and start a new beginning, but anyone can start today and make a new ending."
Thursday, 2 February 2012
January& February...Blahs!
Wow, hard to believe already a month has passed since Christmas! We had a great holiday at home with family and friends. Ben and Sarah were a lot of fun this year and very excited about their presents. Needless to say, with a full slate of grandparents, aunts, uncles and cousins, they were spoiled and we managed to survive the meltdowns and "toy fatigue" in the days following Christmas!We added a Wii to the household, and even with my fine athletic skills waning, I was still able to take the family to the cleaners in a bowling match and put a beat down on my six year old! He needed it as he was all about the competition!
Got to also take Ben to his first Leaf game against Vancouver. Grandpa, Brother in law, Bubba, Jason and nephews also joined. Thanks to "Uncle Larry" for using his powers and graciously providing the tickets!
I managed to survive the holidays but needed a week in January to recoup and re-energize. Fatigue is a battle, and a pain quite frankly, so planning becomes essential to get the most out of my time with the kids and Susan.
I'm thankful for the mild winter we have had (except last week when the four of us had the flu. ALS, in participation with the flu, isn't a lot of fun, I'll spare you the details!) as I've been able to stay mobile and get out as much as possible, avoiding ice and such.
I was able to get the snowblower out one day! Had to get our caregiver, Liza, to pull the rip cord for me but we got it going and I just squeezed the release bar and away I went! Only thing I asked Liza to do was to look out the window every so often to make sure I wasn't in a heap on the lawn or road! I paid for it the next day as my arms were dead tired but it was worth it...a man and his snowblower once more!
Other news...
Healthwise, I'm doing all right. Hands, maybe a little worse, and some "speed" wobbles with the legs. On bad days with the hands, I'm resigned to asking for help which is frustrating. A fork and knife become hard to manipulate so I need some food cut for me, coat zippers almost always require help, and Liza would prefer I didn't continue to try and open things as it ends up like the snakes in the can trick, I get the lid off, but things go flying! My legs still don't enjoy the cold, so at times, like my Dad's old '69 Impala, I need some warming up to get going!
I've continued with acupuncture over the last couple of months and those around me have noticed that my voice has been stronger. I myself have noticed my voice "lasts longer" in the evening as opposed to fading and my energy level seems better. Now don't get me wrong, if you haven't talked to me in a while, you may question what I'm saying and the speech circuit isn't calling me! But I have a voice and the kids still get me so that's my world right now! We are now working on my hands and if we can "halt" the decline somewhat then great! Not really sure how it all works, mind over matter or what, but you got to try and you got to believe.
On the subject of my voice...Hallelujah! I received a confirmation letter from the Toronto Rehabilitation Institute that they have received my referral and now I only have to wait four to six months for my appointment! If they had received and not lost my original referrals I would of had an appointment by now! C'est la vie, don't sweat the small stuff!
Our renovations are becoming closer to reality. I think I previously mentioned that we will be installing an elevator among other things. We moved it several times, but believe we have now made a decision on where it will go and the plan for the rest of the house. Overwhelming, yes, Susan gets a headache whenever I say "contractor!" We have been blessed, through family connections, to have our "renovation angel", Roger, who has been guiding and leading us through the process. His professionalism, compassion and knowledge has helped alleviate our stress and I'm not sure how we will ever re-pay him.
Back at Mac first week in March so will update you then! Happy February and Valentine's day!
 |
| Christmas 2011 |
 |
| First Leaf game, Dec 17/11 |
I managed to survive the holidays but needed a week in January to recoup and re-energize. Fatigue is a battle, and a pain quite frankly, so planning becomes essential to get the most out of my time with the kids and Susan.
I'm thankful for the mild winter we have had (except last week when the four of us had the flu. ALS, in participation with the flu, isn't a lot of fun, I'll spare you the details!) as I've been able to stay mobile and get out as much as possible, avoiding ice and such.
I was able to get the snowblower out one day! Had to get our caregiver, Liza, to pull the rip cord for me but we got it going and I just squeezed the release bar and away I went! Only thing I asked Liza to do was to look out the window every so often to make sure I wasn't in a heap on the lawn or road! I paid for it the next day as my arms were dead tired but it was worth it...a man and his snowblower once more!
Other news...
Healthwise, I'm doing all right. Hands, maybe a little worse, and some "speed" wobbles with the legs. On bad days with the hands, I'm resigned to asking for help which is frustrating. A fork and knife become hard to manipulate so I need some food cut for me, coat zippers almost always require help, and Liza would prefer I didn't continue to try and open things as it ends up like the snakes in the can trick, I get the lid off, but things go flying! My legs still don't enjoy the cold, so at times, like my Dad's old '69 Impala, I need some warming up to get going!
I've continued with acupuncture over the last couple of months and those around me have noticed that my voice has been stronger. I myself have noticed my voice "lasts longer" in the evening as opposed to fading and my energy level seems better. Now don't get me wrong, if you haven't talked to me in a while, you may question what I'm saying and the speech circuit isn't calling me! But I have a voice and the kids still get me so that's my world right now! We are now working on my hands and if we can "halt" the decline somewhat then great! Not really sure how it all works, mind over matter or what, but you got to try and you got to believe.
 |
| "Pinhead, self portrait! |
On the subject of my voice...Hallelujah! I received a confirmation letter from the Toronto Rehabilitation Institute that they have received my referral and now I only have to wait four to six months for my appointment! If they had received and not lost my original referrals I would of had an appointment by now! C'est la vie, don't sweat the small stuff!
Our renovations are becoming closer to reality. I think I previously mentioned that we will be installing an elevator among other things. We moved it several times, but believe we have now made a decision on where it will go and the plan for the rest of the house. Overwhelming, yes, Susan gets a headache whenever I say "contractor!" We have been blessed, through family connections, to have our "renovation angel", Roger, who has been guiding and leading us through the process. His professionalism, compassion and knowledge has helped alleviate our stress and I'm not sure how we will ever re-pay him.
Back at Mac first week in March so will update you then! Happy February and Valentine's day!
Subscribe to:
Comments (Atom)