This and that...

Hi all!

A little bit of "this and that" today, just hitting the highlights!

Today, November 17th, marks 4 years, since our ill-fated visit to the doctor to receive the news of my diagnosis. Susan and I had just returned from our trip to Jamaica, no job, clean slate to start fresh... who knew what lied ahead? Boy oh boy was I in for a surprise!

I don't know what cliché applies more, "feels like yesterday", or "feels like a life time ago", maybe a bit of both? I remember that day and period of time vividly but the activities of my "other" life, when I think back, sometimes seem like a distant memory.

Today, we are where we are. I'll probably have my pity cry for 5 minutes at some point today and then it will be time to move on! There are others far worse off.

Health wise, I'm okay. In general, I've been healthy. ALS wise, over the last few months, I would suggest, my physical "faculties" have declined. I know I've been saying it for a while but my voice is pretty much a "caveman" now, second looks from everyone!
Still eating, though I've had a couple of swallowing incidents.  A lot now off the menu and we have started to use the feeding tube to build up my tolerance for the "formula".
I'm  hanging on with my computer fingers. Two hands to move the mouse and only one click finger left! The new year will bring much more "Mr. T" communication time.
Legs still hold me up, somewhat, when transferring, but when fatigue is a factor, I'm pretty much dead weight or a big old floppy fish! This, unfortunately, has led to talks of a hospital bed for a variety of reasons...woo freaking hoo.
That's the body, it ain't pretty but it's all mine!

On the mental side I would ask that you say a prayer for me and send me your glad tidings in December. No, not for those reasons!
Somehow along the way we agreed to give Myra(my manny) December off so she could go home and visit her family. What was I thinking!?
They keep telling me we will be fine but I have Myra promise everyday that she will be back in January! Stay tuned!


In other news...

Kids are great. Ben's 9 and in grade 4, Sarah 6 and in grade 1. Both busy with sports and activities and generally a pleasure to be with!

My final shout out to my Mom and Dad who celebrated their 50th wedding anniversary in October. We had an amazing weekend away with them, our family, on thanksgiving. Congratulations M/D!

Beth and Wendell

That's all for now, be back soon!

Our Excellent PEI Adventure!

Hello!
I'm not sure where the time has gone, whether I've been busy or on hiatus like a favourite tv show. Nevertheless, here I am back with some highlights from the summer.

Health wise, I've had a pretty quiet summer, which I could say is good. Some deterioration here and there but nothing "dramatic". My voice continues to wane and my words spoken are mostly unrecognizable. Arms and legs are getting weaker and I just "flop" sometimes. Back at McMaster in September so I will update further in my next entry.

The kids have been troopers this summer as they were paraded between camps and daycare. Unfortunately, as I require more attention, there is little opportunity for them to be home as Myra's time is stretched between me and keeping the house running. When they have been home, thank you to our "village" for keeping their eyes on them, entertained and safe!

Around April/May discussions turned to summer vacation and what we might do. As I am pretty much in my wheelchair fulltime we were somewhat limited in our selection for a family getaway.

Rewind to a year ago and our trip to PEI. We had stayed at my uncle/aunt's cottage, only a stones throw from mom and dad. We had a great trip and in the back of my mind, maybe my last journey to the island.
Now, nestled in between our 2 family cottages is a "cottage" that was built in 2008. We had heard and knew that it was available to rent. So upon our return last year I did a little search online for the "cottage" and found it. I arranged with the property manager for my mom and dad to have a look.

The next part is a little hard to believe...

One of the owners had been injured in an accident and the cottage had been built to be wheelchair accessible; elevator, roll in shower, ramps, and spacious rooms for wheelchair maneuvering.
Who da thunk that in our little piece of heaven in Fernwood PEI, on farmland that was in my mom's family for decades, a couple from Georgia would not only find Fernwood, but would suffer a tragedy in their family and still build a cottage in PEI. They did and I will be eternally grateful for the opportunity it provided us with to visit my "Home Away From Home" once again.

Back to our conversations around holidays, now late May and  Susan asked "what should we do this summer then?" I replied "PEI", Susan shuddered and said "really?", I nodded and the talks began!

Now let's be honest I've always been in charge of logistics around here. Organizing, booking, checklists...it's me, that's how we've rolled and Susan will tell you it was great! Get herself and the kids ready, where do we need to be and when do we leave!
Well, obviously, things have changed. I can still get us through "Part A" of logistics but when we now get to execution I'm useless and Susan has to takeover! It's not one of the roles, of the many she's had to takeover, that she loves!

So with that, the planning began...

First, book the 4000 sq ft "cottage"(way out of the budget but authorized through the bucket fund!)
Next, transportation. We investigated flying but between worrying about what the airlines might do to my chair and then our need for a vehicle on the island, scratch that idea.
Well then, let's drive, road trip!

Susan was excited! A handicap husband, a 6 and 9 year old and 17 hours on the open road, a once in a lifetime family adventure... needless to say, talks broke down, next idea please.

Next idea, a hybrid. Fly the kids with Myra(my "manny") and we would drive. Still a lot of work, something missing. And then the lightbulb, the big one, convince someone else to join us on The Excellent PEI Adventure!
We identified our target, Susan's sister Jacqui, her husband Justin and the nephews, Jordan and Jackson.
We  invited them for dinner, fed Justin food and beer so we could get him on board. Jacqui is the sober one with me, so I had to use my brother in law charm and weepy wheelchair eyes and within a couple of hours had them hooked!
We figured out the final details... Myra would fly with the 3 young ones and we would road trip, the adults and Jordan, in two vehicles, woo hoo! Susan's mom also decided to join us, but she was smart and also flew!

With everything booked we now had to focus on the details of the road trip. I had yet to spend more than hour in the Silver Streak so some long distance training was needed and how was I to be entertained for 17-18 hours? I put the call out to the "village" for help with the entertainment. The Silver Streak is not pimped out with options so we were starting with nothing. My chair is locked down, more or less, in the middle of the van so that was our starting point.
Villager D ventured into his one stop shop garage and pulled out an ipad holder that secured to the headrest and he also had the power source. The alpha test in the driveway was a success! Next, load some entertainment on the ipad. Villager Adrian helped with that and it was time for the beta test. Off we went on a little road trip, I was all wired up, and success again!

Now the road details... we were going to do the trip over 2 days, leave early Friday and arrive late afternoon Saturday.
Overnight destination, Riviere du Loup.
The only other critical planning was stops along the way, washrooms being most important! Without sharing any potty stories here are my provincial grades for handicap washrooms: Ontario, A, the new Onroute highway locations are great! Quebec gets a C and NB a D.
At one stop, the men's washroom was the only option. When is was clear Susan and I wheeled in. I did my business and we got out of there before any embarrassing moments. We thought it was weird that no one had come in as it was really busy. When we walked out, Jacqui was standing there with a grin, and in front of the door was a "Cleaning in Progress" sign. We laughed, moved the sign, and carried on. Aunt Jacqui is the best!

We made it to RDL, spent the night without incident, and got back on the
road early Saturday morning. My "driving team" rotated between the two vehicles with nephew Jordan keeping us entertained along the way!
We arrived in PEI around 3pm Saturday, no worse for wear, greeted by the kids, Myra, Linda and my Mom and Dad. My Mom commented on how refreshed I looked while the others were, say, a little haggard looking!

The cottage was beautiful... spacious, 5 bedroom, open concept, huge kitchen with amenities galore( 8 HD TV's and wired for sound in every room my faves!) I was able to move around freely throughout the cottage, get downstairs where the kids bedrooms and entertainment area were and on to the deck. My favourite part of the whole cottage, the asphalt path that led to the banks edge where I could look over the Northumberland Strait, and more importantly, be able to watch the kids on the beach!

our rental "cottage"




The Family

We had a fantastic week! Lots of family, fun and frolic. We hosted over 30 of the extended MacFarlane family(Mom's side) one afternoon and it was great to see everyone and we had a beautiful island day.





The kids were on the beach everyday swimming, exploring and searching for crabs. Being able to watch and hear was the next best thing to being down there with them.

The rest of the week was more of the same... beach, relaxing, eating, visiting. The week was capped off when they all decided to go deep sea fishing. Susan, Ben, Sarah, Jacqui, Justin, Jordan, Jackson and cousin Heather. This is my 3rd party, abridged version of their outing.

It was a pleasant enough day when they left and arrived at the wharf. They all put their "slickers" on to avoid getting wet and covered in fish guts. Off they went on the "3 hour tour". All was well and they were all catching some fish, mostly mackerel. The wind was starting to blow, and as they once said in a TV theme song "the weather started getting rough..." The kids were getting a little bored and once you lose focus on a rocky boat, well  that's when the hurling started! As the story was told they were dealing with 6-8 ft swells. At least half the boat were sharing buckets or leaning over the side, must of been quite a sight! The adults held strong but the kids, 2 were chucking and 2 were down and out!
They got back to shore safely and were all happy to get their feet back on solid ground.
Grandma fried up the mackerel and those interested dug in! I still hold steadfast to my personal motto... if it's from the sea, it's not for me!

Ben, Sarah and Jackson down

Sarah and Jordan down

Windswept but smiling!

The week ended too soon and we packed up for the trip home. We made it home safely, thanks to my driving team, and I managed to watch 6 movies round trip!

Now the "wedding" speech...

Susan, thank you again for having the strength and passion to get us all there. I couldn't do any of this without you and thank you for not leaving me on the side of the Trans Canada somewhere! Love you!
Mom and Dad, you continue to support us beyond comprehension and we couldn't have made the trip without you!
Jacqui, Justin and Linda, thank you for making this trip possible and joining us. We, also, couldn't have made the trip without your help, patience and injection of humour when we needed it!
And Myra. She spends the most time caring for me, good days and bad. She's tireless, compassionate and patient and gets me through each day with my dignity intact. I'm not sure where we would be without her! Thank you Myra for all that you do for our family.


I took a lot of deep breathes throughout the week capturing the moments and, at times, to keep my composure. I don't know whether we'll get back again, only time will tell. This I know, I love PEI. Susan loves PEI. One of things I wanted to see in my lifetime was for our kids to grow and love PEI. Though they are still young, I saw the glimmer in their eyes, when we there this year, and know PEI will be in their hearts forever.

The Gang

Ben

My Girls

June- ALS Awareness Month

Awareness-concern about and well-informed interest in a particular situation or development.

"ALS has no known cure or effective treatment yet. For every person diagnosed with ALS, a person living with ALS dies. Approximately 2,500 - 3,000 Canadians currently live with this fatal disease."


Hi everyone, this could be a long one so get comfortable!

June has been a busy time as The Murray Machine, made, our now annual drive, for ALS awareness and support.

Allow me to step on my soapbox for a minute!

I'm not really in the position to talk like some expert(but you know the rules, my blog, my space!). In fact, had I not been diagnosed with ALS, I'm sure I would of continued to support various charities and causes along the way in my life. I like to think, that in some small way, I was contributing to the greater good.

But, here I sit with ALS, and strangely feel, the need to go on a bit and maybe make a little difference within this awful disease.

ALS is a "small" disease relative to the number of people who are diagnosed with it. It's not like say, cancer, where we all know someone who has been touched and affected by it. In fact, many have mentioned to me, they knew little or nothing about ALS before my diagnosis. I also knew only a little of the disease; my sister had a friend who had it, and being a sports guy, I had seen stories on Lou Gehrig and Bruce Edwards(Tom Watson's longtime caddie on the PGA), both who had ALS.

My knowledge base now, obviously, has grown and as long as I have a voice I will share my experience with others and put my ugly mug out there as one of the faces of this disease. I hope that in doing this that it continues to help raise awareness for ALS.

So, June is our month to shout from the rafters and fight to find a cure and continue support for this awful disease. No disease deserves to be left out, but these neurological diseases:Parkinsons, Alzheimer's, ALS...take such a toll, not only on the individuals, but also on their families and friends. It's mentally, financially and spiritually exhausting.

Look, I'm a realist and I recognize the cure probably won't happen in my lifetime. We raise awareness to inform and educate others and provide and drive whatever monetary donations we can for research and support programs.
The support programs are key. We have seen first hand how the ALS Society provides its clients with the services necessary. From equipment, clinics, medical services, education...the list goes on... and they have been there for us to help maneuver through the myriad of "stuff".

It's an expensive disease. ALS is progressive so you are always needing something else.That is where the Society helps make things possible for their clients. It is from their fundraisers and your donations that drives the support that is needed.
Our family is blessed to have so many around us. Insurance doesn't hurt either. The financial impact for us alone, in just over 3 years, is nearing $200,000. Imagine someone who has no insurance or support to ease that burden.
The ALS Society is working for and making a difference in their clients lives and that makes this cause worth fighting for!

That's why we stand up in June, and throughout the year, and shout "ALS, come and support us!"

Step down from the soapbox!


ALS Plane Pull May 25th

This year, along with the walk, one of my "besties" Gus called and said "hey I think we should get the boys and go pull a plane!" Of course, knowing I wasn't pulling, replied, "I'm in".

So Gus rallied 9 other of the "besties" and on May 25th The Murray Machine Middle Age Wonders arrived at Bombardier set to pull a 37,000lb plane a 100 metres for ALS!

What a great day! Over 20 teams were involved in this well organized event.
It was quite a feat!
We cheered on this finely trained bunch as they pulled that plane to the finish line in just over a minute. I suspect we had the most "mature" team placing not far behind the firefighters and personal trainers!
Led by Gus, the other BFF's included; Goalie, Tuna, G, Gilksy, JP, Paulie, Hursty, Mo and Yo Adrian!

They did us proud, thanks to the boys and you can scratch that one from the bucket list!

Have a look at their pull!
(if the link doesn't work...youtube-Murray Machine ALS Plane Pull)

https://www.youtube.com/watch?v=L6n8fb_ly9M

Ben filming the pull



The haulers-Paulie, Mo, Tuna, Gus, me, JP, Goalie, Yo Adrian, G, Hursty and Gilksy!

Our cheering squad






S&S

 

 

Georgetown/Acton ALS Walk, Saturday June 7th

 

On a sun filled day over 1000 people showed up in little ole Georgetown for our 6th annual walk for ALS!

 

Our goal this year, to break the $1,000,000 mark, cumulative, over the 6 years.

Well, "thanks a million!", we did it! Our walk raised over $175,000 pushing us well past a million!

 

Our family would like to thank everyone who participated, sponsored someone, sent a note of encouragement...your continued support and love makes each day of this journey bearable.

 

The Murray Machine had over a 100 walkers and we raised over $50,000 this year! Thank you, thank you, thank you!

 

We'll be back again next year!

 

Wishing you a safe and great summer!

 

 

 

 

The Murray Machine!

 

 

 

Sister Pam and niece Olivia

 

 



My two favourite girls

 

 

 

Proof I was out there with my security detail!

March Roars in...No Lamb Sighting

 

"March, In Like A Lion, Out Like A Lamb..."

 

Isn't that how the old proverb went?

 

Well I'm here to tell you that from a personal standpoint, that damn lion roared most of March right into early April! I would suggest that even our weather bucked the trend and sided with the lion.

 

As I mentioned in previous entries, we have tried, as best we can with this disease, to make our decisions ahead of what needs to be done. It allows me some control over my situation, and probably more important, lessens my heightened anxiety, a good thing for everyone!

So no different with the feeding tube insertion. We were looking to have my feeding tube put in while I was both somewhat healthy and before I was a 100% reliant on it as my nutrition source.
We were given an initial date of March 21st. Checked my busy calendar and didn't like that date as it was Ben's final game for hockey, day of champions, and my sister Pam's birthday. You know being on a operating table on a family members birthday is really stealing the spotlight and heaven forbid if something went awry!lol

Anyways, after going back and forth, it had to be the 21st. The doctor assured me that I'd be up and moving in no time(though as his assistant said "he's never had the procedure", foreshadow that comment).
The procedure is 20-30 minutes, scope through the mouth into the stomach, incision in stomach, insert the tube and voila! All seemed to go well.

We headed home after the standard recovery time and though uncomfortable we were to meet a nurse at home for follow up care.
Then the fun began...no nurse showed, which would of been fine, however, I started to get a fever, chills, nausea and couldn't eat or drink anything.
After several attempts to connect with the nurse, we finally did. He wasn't going to make it so the reco was head for the ER. 911 it was, because Susan wasn't interested in moving me!

Fast forward...ended up in the hospital for 3 nights, no infection, maybe a loose "seal" with the tube. So they filled me with antibiotics and fluids and released me on Monday. It was a terrible couple of weeks as the hospital stay provided me with a number of setbacks worsening my overall condition; couldn't stand with my walker, needed 2 people to transfer me everywhere, help needed for all eating and oh yeah, dealing with this tube sticking out of my belly!

Lots of people in and out over the rest of March and into April ; nurses, OT, PT, Case and Support workers, all very supportive and helpful to help try and get me back on track.
Me, I was miserable, and probably in my "dark" place some. The thing about this disease is you hit plateaus and then you have some level of "normalcy" and get into a routine only to get kicked again and have to  figure out what's next. We were all feeling it. Susan, god bless her, somehow, for the most part, held us together and we have weathered this storm. I'm feeling better and new "routines" seem to be replacing the old.

April then offered up a chest cold and another trip back to the ER. My inability to "hawk a loogie" spooked a pneumonia concern but fortunately my lungs were clear. All I needed was "nose sling" for the next few days to catch all my "boogers"(as Sarah says).

Alas, the journey continues...

 

Oh yes I almost forgot! Susan and I did miss Ben’s last playoff hockey game which was bittersweet. He scored 2 goals and 2 assists and was named league MVP and got the huge trophy...I hadn’t missed a game all year...but when he got to tell me at the hospital I couldn't of been more proud!

 

 

ALS Walk June 7th, Georgetown

Come join us or sponsor me!

 

http://my.e2rm.com/PersonalPage.aspx?registrationID=2258008&langPref=en-CA&Referrer=http%3a%2f%2fwww.walkforals.ca%2fontario 

 

The Swirling Vortex...

A little late but...Happy New Year to all!

Vortex seemed like an appropriate title to start off the new year. As the Polar Vortex continues to keep hold on us in Ontario we continue with our own swirling vortex of changes around our house. Truth be told I've been cranky most of 2014 so I have been avoiding my literary responsibilities!

I would like to say I'm excited about the prospects of 2014 but that would be a half truth. The good half is watching the kids grow, hanging with Susan and spending time with family and friends. The bad half, well that's obvious, so let me give you some updates on our lives.

We survived the holidays and it was great spending time with friends and family. As it is easier to entertain and have people visit us, we were non stop for a few days, with many helping hands. Lots of food and gifts and were blessed to have everyone around us. Susan and the kids were troopers getting us through it all!
We rang in the new year quietly with dinner and friends and actually made it till midnight!
But, after two weeks off, I was happily "helping" them all out the door on January 6th!

Ben

Sarah

Much like many of you, I've never been a big fan of January and February. Aside from celebrating a birthday in February, the two months are nothing but a roadblock to spring! Magnified by the fact that this year we've had a true ole Canadian winter, lots of cold and snow! Both of those, compounded with further loss of my independence, have made me less than a happy camper! I've been unable to get out regularly and now experience feeling cold which is a new situation for me.
The worst, however, might be my longing for my snowblower. I sit passively at my window, during each snowstorm, filled with envy, watching my neighbours every move with their machines. I've dreamed of ways to hook up the snowblower to my chair and get out there only to be jolted back to reality as another technical glitch pops into my mind! Oh well, I've taught Susan how to use it and she does(surprisingly not with the same passion?) and the "village" of great neighbours we have always make sure we're cleared out.
The one shining light over the last two months is that I have been able to catch up on movies which has long been a passion of mine. I figure over a 3 week span in January I averaged a movie a day plus I only have one Oscar nominated movie left to see before Sunday. I couldn't have done it without one of the "villagers", "Maverick"(pseudo!). Thanks Mav!


As to my health...

Sometime in Nov/Dec I "walked" my final steps. I can still stand and weight bear with the aid of the walker but my disco days are officially over! I now move around exclusively using my chair, in and out of the house.
Around the same time, my hands, arms and voice worsened as well. If I could use the analogy, "when it rains it pours" it felt like that and I don't think I was quite ready for the changes. Somehow, almost overnight, I felt I needed help with everything and that sucked. A visit to the clinic just before Christmas confirmed what we had been seeing and they helped with suggestions on some of the challenges we were having.
I'm know I was a pain in the ass over the last couple of months and I'm thankful for Susan and our family who put up with me. The dust has somewhat settled and "adjusted" routines are in place...for now.

In other news...

Feeding tube will be inserted in April. Maybe I'll film the procedure and post it in my next entry!?

Shameless selfie

Tobii has arrived! We picked up Tobii, now referred to as "Mr  T", last Friday. It's an amazing piece of technology, that through eye gaze, will allow me to speak, email, utilize the internet and much more. Kids love it, and I was able to say happy birthday to Sarah this week in my voice, from the recordings I had done a couple of years back. I'm not sure who was more excited, Sarah or I! I'm now in learning mode and practicing as much as possible.

Mr T and I

And that's my story for the start of 2014!