Best of the holiday season!

 

Be kind to one another and enjoy the time with family and friends!

 

From the Murray family to you, Merry Christmas and a Happy New Year!

 

See you in 2014!

Olivia, Sarah, Ben and Owen

Gingerbread houses at Grandma's

"All Little Stuff"...

Happy Anniversary, per say. Hit 3 years November 17th since my diagnosis in 2010. Cliché as it sounds, it seems like yesterday sometimes and a lifetime away at other times.

With that said , and as my independence wanes, I've decided that the little things are driving me crazy more than the big obvious ones! So without providing TMI(for the older crowd , that's "too much information!) here's my personal list, "ALS...All Little Stuff", of those things that are causing me to laugh and cry!

1. An itch, can't reach it or scratch it hard enough. Try it, leave that itch, I dare ya!
2. Yes I have bitten my nails forever, but no more, can't reach. Now they just get caught on things and scratch me?!
3. Some nights I can't move my bedsheets, feel like a swaddled baby trying to get free!
4. Susan's favourite-try and get someone else to adjust your pillow just how you want it, almost impossible!
5. After years of metrosexual grooming and vanity, a crazy nose hair, eyebrow or ear hair can drive you plain mad, especially when it's no one else's urgency!
6. The remote, it's getting tougher! I'll get 2 out of 3 numbers and my finger will slip...grrrr, end up on Coronation Street!
7. My computer mouse hand, when I scroll, I can't lift my finger off sometimes, so I just rock on the page back and forth...
8. I love my Diet Pepsi. Sometimes when they put it on the table for me it's "accidentally" just out of reach.
9. Climate control in the Silver Streak (van). Others run it now and though respectful of their passengers, it's just not the same.
10. I love chocolate and cookies. Now I will get to the last bite between my fingers and I can't get that final tasty treat in my mouth. It's like some force is blocking all the angles I need to pop it in!

In other news...

Had a fall, landed on my head, no worse for wear, nothing broken, just bumps and bruises.

shameless hospital selfie

Visited the voice clinic and made a decision for my voice computer for the future. It is amazing technology that will allow me to speak, email, surf the internet, all through eye gaze. Tobii and I will become BFF's and should arrive in Feb/Mar!

BFF Tobii

Last but not least, Susan and I had our initial consultation with a gastroenterologist to discuss and learn about a feeding tube. I am still eating and my swallowing is okay. But since we started this journey we have tried to be prepared and ready for the next step before we need it.
The procedure only takes about 15 minutes and you are in and out. I can still eat as normal, while I can, and the tube can subsidize additional calories. At the point in time that I can no longer eat then its blender heaven time...hell maybe I'll even try fish!
Going to the ALS clinic in December and likely to set a date in Feb/Mar to have procedure completed.

That's it, busy time and many changes to come so we keep plugging away!

Thanks for checking in!

Health Update...and stuff

Hi everyone,

October has arrived, fall is in the air and we have been experiencing some nice fall weather. Since my time on Vancouver Island in the mid 90's, September and October have become my favourite months. Originally, I think it had to do with the weather and the abundance of golf on quiet beautiful Island golf courses. But even as I moved east again, September/October have continued as my favourite months; the weather, the colours, the new and old routines and just so I'm not sounding to soft, new hockey and football seasons!

Our brood have begun to settle back into our new and old routines and activities.

Susan has been busy and enjoying her new job. It's a new kind of busy for her, so we are learning on the fly as they say. In my role as COO of Home Operations, I'm ensuring the home schedule is kept up to date, that Susan is eating properly, and  that she doesn't bring her iPhone to bed! She continues to juggle all the balls thrown at her with grace, humour(not always funny!) and humility.
The kids are great and love(so far) being back in school and getting started on their new activities.
That just leaves me, so here we go!

After the summer off we were back to the ALS clinic on Friday September 27th. As I've mentioned before(I think?) visits to the clinic are always interesting. We are not going to the clinic to be cured so hence the emotional journey has become quite different for us over time. The team there provides support, education, experience and many many resources in which to manage the different stages of this disease and let me say we are very thankful for that.

As I approach my 3rd anniversary since my diagnosis in November 2010, I sit here today, reflecting, and struggle with how to describe this visit, be optimistic, pessimistic or just the facts? So in true Canadian fashion I will probably provide a blend of each, with some diplomacy and a little whining.

The facts...I thought this visit was shit.

From head to toe, everything was worse. The message was progression seems slower than the average, however, one begins to wonder the strength of that statement?
We had a good summer as a family, but clearly over that time I lost much of the independence I had been clinging on to, thus my shit visit.

So let's just start at the top and I will update you, if it's too much info skip to the furry panda pictures...

• My(insert "My" at the beginning of additional bullets) neck has become much weaker, not bobblehead worthy yet, but weak enough, at times, where I will struggle to straighten up. As a once famous quoted line from a classic movie said , "its like an orange on a toothpick!"
• Speech has declined over the summer. Only those who see me regularly can make sense of what I am saying and even that's been difficult. Only I can ask for a Kleenex then the next thing I know I'm getting in the car! My "new voice" has been ordered and should arrive shortly, just in time.
• Hands and arms are both weaker. I'm still able to pick some food up with my one hand but utensils are pretty much out. All of the other hand activities generally require assistance. The one thing I can still do, barely, thank god, is grip and operate the remote!
• Legs are still allowing me to shuffle (a la Tim Conway, for those in the older crowd) around the house with the assistance of my walker. Outside of the house I utilize my power chair as I am no longer confident on uneven surfaces to walk. Hell let's be honest, I would trip over  a caterpillar at this point!
• Respiratory is mixed. I still have an acceptable "volume" of air(yes its probably hot, go ahead get the jokes out) though the "force" getting that air out has declined. The force would have to do with coughing or as some like to say "hawking/hock a loogie"! Those that have been in hiding let me define, somewhat, for you, the refined phrase; 

"To hock a loogie means to expectorate or spit out a generous supply of mucus thoughtfully stored in your throat and lungs."

As much as I jest about it, it does become critical to keep this muscles going to avoid respiratory infections and pneumonia.

• Lastly, swallowing, eating and chewing. I'm still eating most things, slowly. Foods that crumble-chips, are sticky-anything with skin, small-rice, are avoided as much as I can due to choking. It's very Benjamin Button like, where I've had to revert to baby food similar rules; smooth textures, small bites and still the occasional treat! My weight was down only 3lbs putting me at 152lbs. For those following I was 190lbs when the journey began. So looking forward, as my ability to eat wanes, we will be visiting a gastroenterologist for a consultation on inserting a feeding tube.

And that my readers is pretty much the "long" of it. See what I mean, not a great visit! I would safely say that my loss, of most of my independence, has been the most frustrating and toughest challenge to date. My head, most days, is still intact and we pick ourselves up and dust ourselves off after a bad day and plough forward.
It sucks, especially being a type A, and having to rely on others for everything.
As it is that time of year though I am thankful for the people in my life and all their patience through the good and bad. I am also especially thankful for the 3 that make me want to get up each day and keep battling.

Couple of pictures below,as the kids and I played hooky with Aunt Pam to go and see the giant pandas! Thanks Aunt Pam, your the best!

Happy Thanksgiving to all!



bamboo forest entry



Ben and Sarah with bamboo



Er Shun chillin"



Da Mao, leave me alone!

Cousins picking apples

Summer Loving...and gone!

Well, many of us are probably saying, "where did the summer go?" or what summer?
But, poof, it's gone, time flies, at the snap of a finger, whatever the saying is, its almost over.
Though most were questioning the weather and our summer here in Ontario, I enjoyed the lack of humidity and scorching heat. I now put myself in the elderly or small child/infant category when it comes to the heat, so the lack of it, kept me quite comfortable !
At the same time I pause about summer passing , I say get my kids back to school! Love them, but it's time!

I've taken a month and a half off since my last entry so I might go on for a bit! But, as always, my blog, my rules. Feel free to "click" me off at any time!

Us in PEI

We've survived the summer. Much like all of you, we were always on the move and busy.
Susan started a new job in July, and was due for a new challenge. She is quite busy but happy with the move.
 Ben got his first taste of rep soccer this summer and its demands. Even at 8 yrs old, we were at it 3 times a week. Along with a few camps, friends and swimming he was non stop all summer.
Sarah kept pace between daycare, camps and swimming lessons. She loves the water and is quickly becoming a good little swimmer, almost too brave.

Our summer was highlighted with our annual pilgrimage to PEI. I hummed and hawwed at the idea of going due to my waning mobility and needs, but in the end decided I needed to go. As most of you know PEI has been a part of my life since day 1. Heck, maybe I was even conceived there but that's way too much information and another different blog entry!

How we would get there was probably the big decision. I wasn't quite ready to do the excellent adventure in the van yet so flying was our other option. So after getting all the "assistance" questions answered by the airlines we booked and off we went.
The airport experience went relatively smoothly. The exciting part was boarding. I was in a manual wheelchair and had to be transferred to another wheelchair designed for boarding the aircraft and managing the aisle.
So envision a skinny little chair that they move you to and then strap all your appendages in, a la Hannibal Lector, minus the headpiece. Then off you go and they wheel you down the aisle. We should of taken a picture, but at that certain moment, I think Susan and I were thinking "what the hell?" They got me into my seat like pros, and away we went!

Rolling down the aisle

We were down for 9 days and stayed in my Aunt Jackie/Uncle Dave's cottage, that they graciously offered us, a couple of stones throw from Mom/Dad's cottage. As usual, my Mom and Dad had everything ready when we arrived. We were able to borrow any equipment that we needed from the ALS Society in PEI so that made things very manageable(have I mentioned what we do without the ALS equipment pool?).
My sister Pam and her gang, were there as well, so lots of hands to help out.
I was able to get around the cottage on a walker and outings we used a wheelchair or my scooter.

Now what would a trip be without a couple of challenges. Under the TMI category, but kinda of a funny story, was showering.

Warning..Scroll down if you've heard enough already!

We've grown fond of my new shower at home, wide open, lots of room. As with most cottage bathrooms, space is at a premium, so there was lots of heckling beforehand about just hosing me down on the lawn when needed. Your at a cottage right, so hygiene, some say, is low on the priority list!

We had gotten a shower transfer bench to help with showering(pictured below). Never had used one, but it was suggested and seemed like the best option for the week.
So the concept is...two of the bench legs in the tub and two outside of the tub on the floor. Then sit on cushion 1 outside of the tub, proceed to swing your legs over and into the tub, and as they say "scooch" yourself on to cushion 2/3 and into a comfortable sitting position on bench

The dreaded bench

 in tub, follow me so far?!
Well, with not a lot of room in the bathroom it would of been challenging for one person to do it, never mind one that requires help from another!
But I was feeling good and up for the challenge. Susan got me set and we were able to hit cushion 1, check! That's when things started to go bad...
We got my legs over and in the tub but then the "scooch" wasn't working. My arms are no longer strong enough to support myself and there wasn't enough room for Susan to help maneuver me. Have you ever tried "scooching" with your bare ass on a vinyl seat...almost impossible! So there I was, a butt naked human plank, stuck. Susan's now frustrated and crying, and as I do, I was laughing. After we had our "moment" we shifted and "scooched" and managed to get me seated and showered, good times!

Other highlights...
No beach this year, it was just too difficult to get to them. Searching for an idea for next year to get my toes in the water.
The kids had a great time and they had their cousins there to entertain them. Lots of beach time, waterpark and lobster fishing.
Great to see all my uncle's, aunt's and cousins from near and far!

Susan and I also celebrated our 10th wedding anniversary on July 31st while in PEI. We had a catered dinner at the cottage with family and it was a great evening. We were married on the island and the weather 10 years later was identical to the day we married, 24, sunny with a nice breeze.
Susan, I'd do it all over again! Can't wait for next year!

Happy 10 years!

That's our summer! Body and mind are holding up but changes coming in the fall. Off to McMaster end of September so will be back with a full health update.
PEI pictures below...happy September!



Sarah's special big cousin,Livy

Another sunset at the cottage

Ben and the big lobster!

Lobster fishing cousins

Susan and Lester the Lobster

Sarah at Cows ice cream



The boys, Owen and Ben

Ben on the ocean

Family

A Cruel Joke...!

Sometimes life plays a cruel joke on you.

You're never sure why these things happen, they just do. "It is what it is", some would say, "you are over reacting" we hear from others...

But, Susan and I had made a pact early on in our relationship, it wouldn't be us, it wouldn't happen to us, no way...other things could happen, we could handle it, but not this...

On a muggy night in mid June, it happened. We knew it was coming but that didn't make it any better. Then, around the corner it came, and pulled right into our driveway.

There it was...big, silver, sliding doors. Yes it was now reality...we were the new owners of a 2010 Dodge Caravan minivan!

All the years of fighting it and being fortunate enough to make other vehicle decisions, this ALS thing grabs me once again and says "here you go, take that". Some things just aren't fair!

It sat for a couple of weeks while we both came to grips with our new reality...we have a minivan.

Good news, the van is already converted and accessible and I even have choices where I can sit! We are a little ahead of the curve on need, but my scooter has left for PEI, so I am utilizing the power chair for any outings.

my "cruel" joke!

 We had our inaugural voyage on the July long weekend to the local box stores and we all survived. Made it up and down the ramp and didn't crash ! Susan looked comfortable in the driver's seat, though I did notice she was dressed up, looking good, with her fancy sunglasses on, maybe overcompensating for the van!lol
Susan loves the ease of it all but I'm not quite there yet...not ready to give up some of my final independence.

We've now had a couple of trips out and on the weekend Susan had her defining moment when we "roared" and passed another car. She waved and shouted out  "just passed by a handicap van with a soccer mom at the wheel!" Another cruel joke...


Off to PEI end of July so will catch up in August! Oh yes, flying to PEI. Not quite ready for that much van time!

Happy Summer !


Thank you Leslie for all your help getting the van. Our heads still hurt but we couldn't of done it without you!

steady!!

buckle up!

ALS Walk June 1, 2013

Scott, Susan, Ben and Sarah

Well, we did it!

On Saturday June 1st, Susan, Ben, Sarah and I were joined by over 150 Murray Machine family and friends in support of the Walk for ALS here in Georgetown.

As with our 2 previous walks, it threatened t-storms, but over 700 people showed up and that energy kept the rain away and the day was a smashing success! This was the 5th year of the walk in Georgetown, and including this year, we have raised over $900,000 for ALS...not bad for a community of 30,000! I exceeded my fundraising goal, thanks to all of you, and The Murray Machine will have raised over $50,000 when all the pennies are finished being counted! Wow!

A shout out to Dr. Jeff Sutherland and his wife, Darlene , who were instrumental in starting the walk in Georgetown. Jeff was diagnosed with ALS almost 6 years ago and our stories are eerily similar.
Many of our family and friends knew Jeff through his practice in Georgetown. Words can't convey how supportive they have been assisting us while fighting their own battle. As my Dad would say "just good east coasters"! Thank you Jeff and Darlene!


Again, our family has been touched and overwhelmed by the support and love provided by all. It was truly inspiring on walk day, at every turn, to see a family member, old friends, new friends, high school friends, work friends, neighbours and others we maybe didn't know, who stopped to offer a kind word.
My Aunt Joyce, Uncle Eric, cousins Aaron and Tony and Tony's wife and kids, Jen, Heather and Alexis, surprised us with their arrival from Calgary for the walk! It was great to have them all here.

So I leave you with this and some of our pictures..."out of the mouths of babes" as they say, a funny and heartbreaking chat we had with Sarah after the walk.



Sarah!

At some point during the day Sarah had asked why on the tshirt was Daddy purple as it was her favourite colour and she wanted to be purple. Susan explained to her that purple was the colour that ALS used to help people, and since Daddy had ALS, that's why he was purple and she was okay with that.
That evening, after all had quieted down, I asked Sarah about the walk and the day, Susan was on her way down the stairs and stopped to listen...
Sarah said all those people were there to walk for ALS and help Daddy. All those people helping would make Daddy's ALS get better and Daddy would be able to go the park, go bike riding and bend down to hug and pick her up.
Susan and I smiled, took a deep breath, and hugged her.

That's the future we are fighting for. Our love to all!





old and young!

old friends!



The Murray 's



Sister Pam and Owen

Aunt Joyce and Uncle Eric

the neighbors!

Tony, Andrew, Marzena and Alex

Jacqui, Taylor and Justin



Cousins and 1 to come!

Susan and her Mom

Tony and Natalie Martino

Uncles and Aunts

Goalie and Paulie

Tyler, Greg, Allie and Sarah Sinclair

Transition...Health

tran·si·tion  

The process or a period of changing from one state or condition to another. We all go through transition, be it good or bad. Most often I heard the phrase at work. Catchy phrase that I'm sure some organizational behaviourist introduced in the 90's(that almost sounds bitter, oh well!) to fancy up "change"! "We are going through a transition "... "Our future requires us to transition at this time"...and so on... In fact, many of us have probably heard it from a boss as they were walking us out the door! Truth is, we are probably always in some flux of transition. Whether at work, home or play there is something that is in transition...job, kids, marriage, health, body, mind... So today, that's where I'm at, working through "transition". Frankly , just between us, I'm not that excited about it. Day to day activities have "transitioned" somewhat over the past couple of months to the point where I'm slowly requiring assistance with most things. I'm with the walker fulltime, hands are weak, so unless I'm eating with my hands, I need assistance, voice is declining, can't get out of bed...the smallest of tasks either frustrate me to no end or take forever, with my stubbornness, to ask for help. And with that, we added a few others just to keep us sharp and looking ahead! We were at the ALS clinic earlier in April for a check in. Good news is while everything progresses/declines, the word remains the same that it doesn't seem to be a quick progression. We talked about my weight and ability to eat, which led to "Transition 1" discussion; feeding tube, hmmm, we'll leave it at that. "Transition 2", my new power wheelchair arrived for test drives and fitting. It's slick but I'm not in any hurry to get in it. Wheelchair then leads to "Transition 3", discussion, converted van shopping...Susan and I always wanted a mini-van, can't wait! So lots on the go, I had to whine a bit, but hey, is transition ever easy? Good news...the transition to spring, finally, seems to be happening, warmer weather and sunshine ahead! Happy May! "MAKE MOMENTS MATTER" ALS Walk Georgetown, Saturday June 1st http://www.walkforals.ca/ontario

Ode to Dad

As I've spoken of before about this disease, family and friends lives are also forever changed. As I read recently "the impact we all feel, and the dreams we all share, for reaching milestones and enjoying our futures, are forever shattered".

My Dad

George Wendell Murray was born on March 6th. For those who know and love him he is simply Wendell... to me he is Dad.

Dad turned 70 this month, one of those milestone birthday's, and in true Wendell fashion, he didn't want a lot of hoopla surrounding it. So a family lunch with Mom and the kids was just fine, in fact, great.

That's my Dad in a nutshell, (and probably too simply put)little hoopla needed, just jump in and get what needs to be done, done.

Dad's been my BFF(best friend /father forever!) since the beginning of this disease and really long before that. He's always been Wendell, always there, quietly, setting the example, as Dad and a man.
Now he's become my chauffeur, handyman, shopping partner, lunch date(#6 combo at Wendy's!) and confidant. He's my voice, when I can't get the words out, usually knowing what I was trying to say.
He drops in and deals with me, good day or bad, and moves me along.

He's also now there for Ben. When I had to give up driving, Grandpa took over and runs him to hockey /soccer practices and games. Just when he thought he wouldn't have to go to our 91 year old arena again, unless he chose to, he was tying up skates again and freezing his ass off! I only hope Ben realizes how special Grandpa and these moments are.

This wasn't how it was supposed to be. My Dad and Mom weren't to be taking care of me, again. They did plenty of that already!
I envisioned me helping Dad along as the years passed, summers in PEI and a couple of golf trips in there as well.

Nevertheless, and as Susan says "it is what it is", this disease, and we deal with it and move forward...just like Dad does. We will build new and different memories in whatever time we have.

Happy 70th Dad, thanks for everything and being the role model I try and follow everyday...all my love

Routines...Old and New

Happy New Year!

Again, one says where has the time gone as March is but days away.

But here I sit with yet a new "routine" utilizing the on-screen keyboard, with word predictor, to make my entry. I can still somewhat use my fingers on the keyboard but our office needs some adjustments to accommodate for the future.

So based on my current typing, I'm once again going to try and ramp up my frequency and use less words, quick bursts or thoughts, with maybe even a Rick Mercer rant or two!

We survived the holidays and had lots of family and friends around to share the time with. The kids were spoiled and were able to get lots of playtime in with friends and cousins.

Other highlights included our elevator launch party and Susan's surprise birthday party(more on that later).
Is it wrong to say come January 7th I was happy to see them all out the door so I could get back to my unemployed retired routine?!

With our renos complete, and all working out well, we were able to get back into new/old routines in January with activities, our new nanny, Myra, and just life in general.


Party!

End of December was Susan's birthday, one short of a milestone. Not knowing what shape I would be in a year from now, and using the element of surprise, I enlisted my sister Pam, and sister in law Jacqui, to help me pull off a surprise party.

The Evite went out and we had 40 plus family and friends at a restaurant waiting! Until we pulled in, Susan had no idea, surprise!
It  wasn't without it's follies...emails sent  incorrectly, lies all aligned, people avoiding for fear of a slip up...at one point picture me getting a text, and we are both home, inadvertent email it says, must delete! So I must "leap" out of my chair, grab my walker, go up the elevator to the office to delete said email! Phew, I made it.

Good fun, food and drink. I couldn't have pulled it off without my sisters, thanks and love ya!

I think, all in all, it was a great night improving my husband "rating" to at least an A-...for now!           

Health

Off to the clinic we went in early January. Overall the visit was positive. My arms and legs are both weaker but deterioration seems slow? Weight was fine but cautioned to keep it where I'm at now. Swallowing and breathing o.k. as well. I fear my hands will give out before my swallowing. I often require assistance now when a utensil is needed. I can "stab"my food but scooping and balancing are close to impossible.
I would suggest my voice is fading in volume and clarity with only those exposed to me regularly able to understand and even that's stretching it.
My legs are hanging in, though my old/bad knee has been acting up and causing a fair bit of discomfort. The walker has become my fulltime friend , good news is that is wicked on corners and 3 point turns!



Other News

New routine for this month is my first PSW(Personal Support Worker). 4 hours on Mondays to "look after" me. The boys were, of course, voting for the young hot professional but Susan handled the booking and I have an older mature professional! Probably better off!

We are getting to know each other, feeling our way about as they say. She's seems like a great lady and gives me my space. My new life, being managed by others fulltime, feels like work again!

And lastly, celebrated 48 in Feb and my little princess turned 5 yesterday. 

Sarah, Daddy loves you to the moon and back...

Talk soon


"MAKE MOMENTS MATTER"
ALS Walk Georgetown, Saturday June 1st
http://www.walkforals.ca/ontario