Health Update-December 2011

Hi all, it's me, back again!

December already and the holiday season is upon us, where does the time go?

So, end of November, we made our quarterly trip back to the clinic at McMaster. As mentioned in my last entry it's been a year since my diagnosis and first trip to the clinic. Now, after what seems like a short year, we are "veterans" knowing all the team's names, what the process is, what's good and what's bad.

As per usual we met with the members of the team: doctor, respirologist, OT/Speech team, ALS society liaison and social worker.
We've settled into another routine as well, where Susan and I go to Kelsey's after for lunch, chat about the visit and one or two other "critical" matters of the house!

Well, I think we can safely say that we felt good after our visit! The pointed question we asked, which is somewhat unanswerable, but we asked anyways, "After a year where are we and how do we compare to others?" This isn't a question they like to answer but the doctor was very forthcoming.
Progress, at this point, seems to be slower than average(I guess you can say it's all relative, but we will take what we can get!) so that was nice to hear. My hands were a little worse than August(no surprise) and my voice maybe so as well. My respiratory numbers, that being flow and output, were, let's say, the same as August, so that was good news.
The one area that I continue to work on is my shoulders. They were already poor from my years of professional sports, wear and tear! In combination with that and the disease my mobility in my shoulders is limited and I need to continue to work them to avoid what the doctor called "frozen shoulder". I'm dangerously close to having to tape my deodorant on the counter and rub back and forth! Ben and Sarah are now fully trained to assist me in putting on and taking off my coat!

We probably ran into our first snag with our healthcare system. The clinic lost its speech pathologist so we have been trying to get ahead of the curve and a referral, through the clinic, to the Toronto Rehabilitation Institute. They would ultimately become my contact for future voice technology, hardware etc. So the wheels have been slow turning, referral lost, then found, no contact, no return calls etc. so we are ploughing forward with the clinic's assistance to hopefully get a date for a visit set up.

For those that I don't speak with often, I'm certainly still able to speak! Very nasally is my regular voice now and sometimes I would suggest that I even sound a little drunk! A short time ago, I had a lady call regarding purchasing meat. She inquired if I was the grocery shopper in the family, and as I am, she continued to ask about my purchase activity. After a few minutes of speaking with me she asked when my wife would be home and that she would call back to talk with her. I was somewhat puzzled but then upon hanging up I realized that she figured she was talking to a drunk husband and would call back to speak with the lady of the house! The nerve! Boy did I get a chuckle out of that one!

So all in all, a good visit with some positive news!

Along the same storyline, I have been trying some Traditional Chinese Medicine. My friend, Alex, gave me a call and she had a contact, through her circle of friends. A doctor, who has treated patients with a number of illnesses; cancer, MS, Parkinson's and ALS with some success. So she was good enough to get me a appointment and go with me to meet the doctor. Now I won't say I was skeptical as I don't think that's the right word. I prefer to say I'm not one that stray's far off the path, most times, and I generally stay with what I know.
I will say that his first question he asked could of sent me running but I held tight! He asked "was I a nice person?" I looked at Alex, then responded that for the most part I thought I was. Looking again at Alex, I hoped for confirmation and she, thankfully, said yes! What he did proceed to say, which was the running part, and I may be paraphrasing somewhat, was that ALS was somewhat of a psychological disease brought upon by ones self!

Say what, get me out of here!

I then took a deep breath, sat still, listened and asked some more questions!

Today, I am about 7 treatments in, acupuncture and chinese herbs. Pins all(yes officially called pinhead or Hellboy now) over when I visit and a quiet chinese man, who my first impressions of were somewhat clouded, now provides constant support and encouragement.
Results? Be it mental or physical, I feel my voice is stronger, not necessarily clearer, but I am able to project more. It seems to also be stronger at the end of the day when fatigue usually takes over. I feel that my energy level is higher as well. Is it the treatment, or all in my head, who knows?! But what do I have to lose? I still have my down days where I need a nap or am just wiped out but that usually seems to follow a busy couple of non stop days.
If I can slow the progression through alternatives then great, let's keep it going!

Some other updates...

Slowly getting the process going for the renovations. We have decided on a home elevator and are about to begin work with an architect on a plan.

GWL & Movember

Susan and I want to thank my friends at the UPGC at Yum! They gave us a gift card to Great Wolf Lodge for a family getaway and we made it down there in early November. We went overnight, with some friends as well, and had a great time! Our kids love the water and were tall enough to go on any of the rides they wanted to so it was lots of fun. I was both frustrated and elated at times. Frustrated at not being able to participate as much as I wanted to(one wrong turn in the wave pool and they would have been fishing out a short fat tuna!)Elated at what the kids could accomplish and watching their faces light up when they did something new! All in all it was a great couple of days and we also couldn't have done it without Tim and Silvana helping out, thanks guys!
So thanks again to Brenda, Rob, Ilda, Corey and the UPGC gang for helping us create some great memories!

I wish you all the best over the holiday season and Merry Christmas to you and yours! We will be home for the holidays, and looking forward to spending time with family and friends!

Chat soon!

Happy? Anniversary!

Hi all!

Well the title says it all, and with tongue firmly implanted in cheek, today we are "acknowledging" our 1 year anniversary since receiving the news of my diagnosis. I don't have a lot to say today but felt the need to jot a few words down. It seems, as many things in life, when you want one thing to happen you end up with the opposite. In our case, you want time to stand still and slow down, yet the last year feels like it has flown by. 

It was a bit of a strange day, some folks remembered right away and knew exactly where they were and others were shocked to believe it had been a year already.

For me, a bit of a reflection day. Not only did we receive the diagnosis but I had just wrapped up my job with Yum! a couple of weeks earlier and was just starting to wrap my head around being unemployed and pondering the next steps. Then all of sudden I'm "retiring" and taking on a whole new battle. It was a surreal time, all of it, and most of it unpleasant, and I remember it vividly.

So as I sat in my lift recliner this afternoon(getting more and more comfortable by the way!) thinking about the past year, and the year ahead, I really found myself running down a list of questions in my head. Some I felt I could answer, other questions...I just said who knows?

Why?
Was there a reason, could I have prevented it?
Am I living in the "now" enough?

Have I...
accomplished enough in the last year?
been a good husband and father in the last year?
been a good brother and son?
been a good friend?
been a good person?
done enough to fight the fight and battle the disease?

As the years roll on what "legacy" do I want to leave my kids with? How can I continue to shape and grow with them in different ways?

Is Susan o.k.? Am I providing enough support to her?

Not that I'm going anywhere, but those that know me, I like to think I'm relatively organized. However I still ask myself everyday have I got my "house" in order?

I could probably go on but don't need to.

All I can do is look forward now, what's done is done and what's in the past is in the past, can't change it, right?

It's like a New Year's resolution and I will make sure(not "try" as that in the Yum world is just an excuse for not achieving something!) the next year is even better. It's a funny balance, trying to live everyday to it's fullest and then struggling with thoughts of "have you done enough for the future?"

So go out there and make tomorrow a great day and I leave you with this...

"Nobody can go back and start a new beginning, but anyone can start today and make a new ending."

I'm off to McMaster end of November so will be back with a health update then!

October Already!

Where did September go?

Our first October weekend arrived in Ontario with a blast of cold wet fall weather and single digit temperatures. The family wasn't very happy with me as I made them all bundle up, refusing to turn the heat on just yet! And presto, then we hit a full week of beautiful weather and even needed the air conditioner on a couple of days again!

After a great summer, Susan and I are now back to reality! Like most, as summer leaves, September and October means settling into new fall routines with school and numerous activities. Being my first fall as a retired gentlemen, it has meant some reflection about what to do with my time, balanced with the demands of ALS.

The kids are great. Ben is 6 and has entered Grade 1 and full time school. It has been interesting watching as he has left the "caged" area of Kindergarten, and has entered, as my sister says, the "gen pop!" Sarah is 3, ruling the house, and will talk forever. Ben is in hockey again this year and Sarah started skating, both are also swimming so I'm in full control of the household schedule!

Along with getting everybody back on routines, September has brought us to looking at the changes needed in our house.  As I've said before, with ALS, you don't really know what the hand is your going to be dealt, so it's been a bit of a daunting process getting started and what do we do. We have taken the approach that we are in this for the long haul(is it possible to look at it any other way?) but even when you say that out loud to yourself, at times, the pragmatic side always has a way of creeping back into your head, not to mention the financial investment. But we balance what we can and move forward!

My first big investment of the month was a new recliner lift chair! For those old enough to remember it's not as ugly as Frasier's dads chair! We figured it was a good purchase as there was a couple of nights where I got "sucked in" on the couch and almost had to holler out for help to get up! As the last to bed most nights, those in the house don't take kindly to any kind of unscheduled wake ups! I'm getting the chair broken in, as long as the kids aren't using it, they think it's a great toy!


Our big project is renovations to our home. Accessibility is the word, and two big areas that we have been looking at are elevator options and a bathroom renovation. I don't like to use the same word twice, but "daunting" is as good an adjective as I can come up with. So much to think about and lots of questions to ask! The elevator especially, and yes we are talking about a real elevator, "next stop, bed, bathroom and clothing!" We visited a family in Georgetown who have an elevator in their home and you wouldn't even know it. Some may be wondering why an elevator as opposed to a stair lift?(cue Acorn commercials, imagine me riding that up!) Well, the stair lift requires you being able to get on or off or to have someone transfer you, and then a wheelchair on each level, you get the picture, so an elevator currently seems like the most viable option. This month has been about educating ourselves about what needs to be done, and we have had 3 elevator companies in for quotes. Bathroom thoughts and design are underway as well! We are blessed that we have had help from friends and family with contacts/connections making the steps a little easier. Stay tuned, may need design opinions in the future!

Healthwise, I'm pretty good, hands a little worse and speech a little worse. We are back to McMaster in November so will be addressing what we need to. Not looking forward to the colder weather, too many clothes and shoes! I've been tangled up in a coat and sweatshirt a few times now, kinda like Twister with clothes, and even funnier when no one around to pull me out!

So as I close off, and being that it is October and Thanksgiving, I just want to say my thanks...the list might be long...but you know...my blog, my story!

to my Mom and Dad who continue to support us each day and keep our house running!
to my sister, who always provides an ear, an opinion when needed, and scolds me when I'm not reaching out enough
to my SIL/BIL, who are always here to help and rescue my children when we are at the end of our rope!
to my MIL/Bill, for helping us whenever we ask, don't ask and always check in
to my home boys, for always checking in and heaping on the abuse, and keeping it honest!
to my kids, who everyday hug me and now help me get through the menial tasks, that are so frustratingly simple, but require assistance

And last but not least, I am thankful for my wife, Susan...she works, she parents, she rarely complains about the shitty hand she's been dealt and just keeps ploughing forward. As any married couple knows, it's up and down and a lot of work. And now trying to do home renos (and not necessarily ones that you want to do, no new kitchen!), find a new nanny, manage our finances, discuss the undiscussable, and deal with me, well most would probably turn and run...fast. Not my wife, she may yell at me(rarely, of course), but she somehow soldiers on, makes us hug and keeps moving. There was a reason I didn't get married till I was almost 40 and the reason was I hadn't met her yet...

So take the time to say thanks this month and let us all be thankful for what we do have!

Thanks for sharing, chat in November!

Health Update

Well it's been just over 9 months since my diagnosis in November last year, so coupled with our visit to the ALS Clinic on August, I figured it was a good time to provide a health update and what's happening at the Murray house. Today's entry is going to be a long one, but hey, once again, my blog, my space, my say!

Every 2-3 months we visit the ALS Clinic at McMaster Hospital in Hamilton to check in and see how things are progressing.
When we visit the clinic the general drill is to meet with the members of the team and check on progression, state of mind(no they can't fix my past problems!), resources needed, education that sort of thing. It's always with mixed emotions, when we have the appointment, as you know that you are not going for any wonder drug or to be cured. It's about monitoring and assisting the patient through the journey. With that said, the team is a dedicated group of individuals who's key focus in on the patient and family and whose mandate is to do whatever they can to assist in this journey and also work tirelessly to find a cure for ALS.

When we visit, we generally focus on 5 areas. Lower body(legs), upper body(arms,hands), voice, swallowing and breathing. We, Susan and I, generally meet with Dr. John Turnbull first, review our last visit, do a head to toe check in and some general health updates. Then on to other members of the team; Respirologist for breathing/swallowing, OT/Speech for body and voice, Social Worker(make sure I'm keeping it "real"!) and ALS Society rep. We are usually there for a 2-3 hours and are both generally exhausted when we leave!

So that brings us to our visit last Friday and where we are today. Where to start, oh me oh my! Well the overall visit was positive, which we will take, considering as I said, you aren't going there to be cured! My progression since my April visit hasn't been too bad. In those areas that have progressed we weren't surprised and it more or less confirmed what we knew and had been living.
So I figured I would briefly describe those 5 areas and where I'm at.  That's probably easiest based on my thinking!

Lower body-my legs remain relatively strong. Not like running or ride your bike strong, but strong enough I'm still walking, can still bend down and get up. They are wobbly at times, I look for railings around stairs, walk "deliberate" to ensure I'm picking up my feet, watch for carpets and rugs and have put the flip flops away as I'm one flip or flop from a tumble! It's funny and weird at the same time as your brain will want to do one thing but the legs won't necessarily come along for the ride.

Upper body-my arms and hands are probably the worst. My arm strength is minimal and my fine motor skills with my hands are challenging. However, it's amazing how you adapt and change how you approach things and move on from there. My hands and arm challenges, just to name a few: opening lids, water bottle caps(Nestle may be saving the world with less plastic but I'll die of thirst trying to get that cap off!), buttons on pants(no I haven't moved to drawstrings and stretchy pants...yet!), can't pick Sarah up, cutting food, opening my beloved Diet Pepsi cans, getting out of bed, door knobs...you get the idea. Again, you do adapt, but imagine having to think everytime when you grab the milk jug from the fridge, move the frying pan off the stove or grab something from the cupboard. Every time I reach for something now I think about whether I will be able to support the item and make it to it's destination. Good thing I'm retired cause I'm doing a lot of thinking!

Swallowing and Breathing-both are still pretty good, some adjustments here and there but not bad. Swallowing, I'm cognizant of it, takes me a little longer to eat but no real problems. Drinking, I've had to adjust. You know the old saying "it went down the wrong way", well that happens daily if I'm not careful so shooters and beer shots have been eliminated! And just a word of warning if you are with me and choose to make a joke while I'm drinking you better bring a change of clothes!

Breathing has been fine, out of breath quicker at times, but all in all not bad. On each visit to McMaster, the one test I get a little anxiety about is the "blow test". It measures your flow of air and your push of air. Since we are among friends here I can say that I've watched those numbers closely, a respirator hook up is not something that I want any part of. I say that with complete ignorance knowing very little about it. I may change my mind, when and if the time comes, but today I don't want to deal with it.

And last but not least, is my voice. It is weakening and my clarity, at times, becomes, as I can best describe it, "nasally" and garbled. Those that I see everyday are adapting, and most times, can still understand me. Those who I don't see as often may notice changes. It has become tougher, on some days, to go to places where I need to speak, or be on the phone, as, believe or not, I find my anxiety heightened and it is tough to get the words out. So I plough forward best I can and cherish the days when it is smooth.

Fatigue is a constant factor that I battle and I try and find that balance of not doing too much but still getting things done. Needless to say I don't do well with idling!

The only other thing I can think of is that this damn disease wreaks havoc on one's emotions! One of the side effects, per say, that is heightened, is your emotions and dealing with different situations. So my problem is, mostly, laughing! Susan loves it, cause put me in any situation these days and I'll probably laugh. If I'm mad, angry or frustrated about something, Susan will try and make me laugh(not cause she is funny!). Kids are melting down or mad and I laugh, get me laughing I may not stop! On the other side of the coin, and if I was soft before, any "nice" story on TV or in a magazine will set me off the other way, and I''ll cry. Win a challenge on the Food Network I'm crying for ya!
Honestly, it has been frustrating, at times. The doctor said he has drugs to help with that, but we need laughter and crying in our lives right now, so I'm drug free!

What's the future hold, I'm doing some physio therapy these days to keep the muscles moving. Nothing is guaranteed but need to keep the body and mind moving as long as possible. There is some potential trials and so on in the future so we are keeping ourselves apprised of that.

And that is the health update!

We've had a great summer! We took the opportunity to get away and Susan's work was great with her using holiday time this summer. Susan and I had an extended long weekend together in Banff in June, Susan's first trip west.

Then our annual pilgrimage to PEI and long weekend cottage visits to both Wasaga Beach and Minden. We are now, like all, getting settled in for the new fall routines. Ben's in school full time so Sarah will be miss having her big brother around. Lots of activities underway with skating and swimming for Sarah and hockey and swimming for Ben, so good thing I'm retired as I get to put my organizational skills to work keeping everyone straight!

Thanks to all for stopping in and your support and love along the way!

PEI July 2011

I know, I know, I said I wouldn't bore you with minor events like what I did last night, what we had for dinner etc but for those that know me PEI is a little different. This one may end up more like a chapter than a simple blog entry but hey once again it's my blog so I'm calling the shots!

See, PEI is not just a vacation destination for me.  It's really part of the fabric that makes me who I am, (like it or not!) and more importantly a part of our family history.

I have been travelling to PEI since day one, sometime in 1965! Both my parents(god bless them and we aren't a religious family), were born and raised in PEI and if we were going to see grandparents, aunt's, uncles, cousins and friends PEI is where we were going. So every summer, and some Christmases, we loaded up, whatever fancy wheels we had, and made "the drive"(yes Susan "the drive") to PEI, and usually straight through!

I've tried to figure out how many years I haven't been to PEI. Of my 46 years, I figure I maybe missed between 10-12 years. Somewhere in the middle, in my 20's, was where I missed most, but as I hit my late 20's, I found myself gravitating back to the land I will call my second home. 

My early memories were on the farm, as both my grandparents had them, and there was always lots to do for Pam and I. Whether it was in the barns, in the fields, in the yards, there was always somewhere to explore. If we got bored with that, then we headed for the shore (that's Maritime talk people, think beach).
There was always lots of family around, always somewhere to go and folks to see.

In the 70's, our family built a cottage on the shores on the Northumberland Strait in Salutation Cove in Fernwood. It was originally land my Grandfather owned, and it is our little piece of heaven. Every year was an adventure, many friends were introduced to PEI along the way, and my parents were always welcoming to anyone who wanted to come to PEI.

Speaking of my parents, Beth and Wendell, they are the reason why my sister and I, are who we are today(my sister is the really nice one, I got the sarcasm!). They have always supported us, instilled with us a sense of family, and they are why we love, and will always long for PEI. I think we all take for granted some things in life, but every time I arrive in PEI I take a deep breath, and thank my Mom and Dad, for this little piece of our history and the many memories.

I met Susan in PEI in 2001. She was on holidays with my cousin, from Georgetown as well, but we had never met. Susan will tell you that was because she is much younger than I. I vividly remember her being all over me when we met(my blog, my story!) and though it took some time for me to come around, we began dating a few months later. We married on the banks of the cottage in 2003, and now the next generation of Murray's have been introduced to PEI!

A rare starfish find by Ben

This year was fun. Both Ben and Sarah(more Ben then Sarah, but she was excited because her brother was!) had a basic understanding of where we were going and that PEI was an island with red sand. The trip did not disappoint, but I'm not sure how it could, as going to the shore everyday, swimming and exploring, seeing foxes, farms, and getting to know older cousins, aunts and uncles that doted after both of them!

Our own, Sarah of Green Gables

For me, this year was somewhat bittersweet. Though I fully intend to return to PEI again, everything was a little different this year. I took a deeper breathe of the salt air, looked off the deck a little longer, took notice on our drives of everything around and hugged my aunts and uncles, who I love, just a little harder. I've always thought over the years of how could I move to the east coast, maybe or maybe not PEI, but how could I be close enough so I could live that life, raise a family and be a stone's throw from the cottage at any time. It never happened, but fortunately now I have a partner, who also loves PEI, and we will continue to build our memories and dream some dreams...

Poor Boys Golf Classic(PBGC) June 10/11/12

Over the last, let's say 12 years, I have been a part of a group of eight guys that get together every June to play in the incomparable PBGC. It's 3 rounds of golf, starts with a seeding round on Friday that then determines partners for the weekend. Saturday is a two man scramble followed by the high pressure individual stroke play on Sunday, so our own kind of Ryder cup or final Sunday round heat is created!
 It is somewhat of a typical guy's weekend; bad food, alcohol fuelled for the hardcore, male camaraderie and the usual stories that get told year after year!

When we started this all, it was designed to be a cheap weekend; best deals we could get on golf, cheap hotels, cheap food, and within Ontario. Only a couple of the guys were married, couple kids in the mix, few obstacles for our weekend away.

There has been a couple of fill ins over the years but the core remains strong; Bubba, Goalie, Gus, Tuna, Bully, Hursty, Mikey and Wendell. We have been through the good and bad, wives and ex-wives, I think 15 kids among us ranging in ages from a newborn to 17!
I love these guys, 5 I have known for 35 years or more, the other two, over 20 years.

For those that know me, I have loved golf for all of my adult life. "No, no", as I used to say to Susan  "I really really love golf!"  Susan knew this when she married me, and to this day, she is my number one fan and supporter of me playing golf. For this alone, I love her!

I look forward to this weekend every year, despite what may be going on(doesn't hurt that I'm the leader in wins, I believe!lol) It's always fun, yes we get on each other's nerves, some guys crack up, but all in all it is something that I have always cherished, time away with these 7 characters!

This year, 2011, I had to withdraw. Even as the boys encouraged me to give it a shot I knew that my hands and arms wouldn't make one round never mind three. So while still able, I attended as ambassador, rules official, snack and drink boy, lackey all those things just to be a part of the weekend.
My spot was filled, unanimously I might add, by one Antonio "Tony" Martino. Big shoes he had to fill, golf wise I'm talking, otherwise I'm Kindergarten Cops with Tony, I'm Devito to his Schwarzenegger!

Ceremonial First Drive

The Boys

The weekend was perfect. We actually upgraded our hotel all the way to a Radisson and it felt like a 5 star based on some of our past accommodations! Stanley Cup playoffs are generally on which provides the lightweights a reason to stay in while our hardcore "players" head out to the local establishments. The boys quietly looked after me, but in true fashion, and I wouldn't expect or want anything different, the abuse and banter still flew among us and it felt like any other year! For that, I thank the boys and look forward and will press hard to keep the legs moving to fulfill my role again in 2012!

June 4th-ALS Walk

In March/April, my sister, Pam, who has been supporting the ALS walk for the last number of years in Newmarket in support of her friend Gail, volunteered for the Georgetown walk. Susan and I were also able to meet the team responsible for the organization of the Georgetown/Acton ALS Walk. Since I had begun my "retired" life I was able to offer my time to assist with the walk. They really didn't need any help from the likes of me but they welcomed Susan and I into the fold with open arms! The entire team was and has been extremely supportive as each and everyone of them has been touched by ALS in one way or another.

Quick history lesson... in 2008 the Georgetown ALS walk was born and had a hugely successful day. Unfortunately, a respected and loved physician in Georgetown, Jeff Sutherland, was diagnosed with ALS, and that was reason for the beginning of the walk in Georgetown. (Our stories are quite similar, both in our 40's, young family, active and relatively healthy before being diagnosed)
What culminated that day was attendance of over 1000 people, record setting money raised, community outpouring and support for the Sutherland family and the ALS cause.

Fast forward back to May and my sister's gang came up with our team name "The Murray Machine". My niece Olivia designed our team's logo and we began to fundraise for the ALS Walk on June 4/2011.

June 4th was the day of the walk and probably one of the most miserable days of the summer! Thunder, lightning and monsoon rains. The walk was cancelled and hundreds of people poured into the Gellert centre atrium. Our Murray Machine team was well represented with over 75 family and friends in attendance supporting our family and the cause.
The Murray Machine fundraising tally was over $40000! It was overwhelming, unbelievable, awesome and I believe the highest team total in Canada!(hope I'm right!).

Jeff Sutherland, his wife Darlene, and their family and friends, continue to drive support for ALS, and the walk, and they are a daily inspiration as to how to positively battle this hideous disease. I also had a chance to meet Jeff's parents and spend a few minutes with them and their kind words, strength and support will only help as we battle on.

Personally it was an overwhelming and emotional day for me to see all those people, and without the actual walk and being outside, it was somebody new in front of me at every turn in the Gellert! Thank goodness for sunglasses!

Our thanks to each and everyone who sponsored our team, we hope we can make a difference and help find a cure!

The Beginning

Throughout the spring/summer of 2010, I was experiencing a variety of issues that weren't making sense. I seemed to be losing strength during my workouts, was having pretty consistent twitching throughout my body, during a training roadtrip in July I felt my voice projection was weak and some words jumbled, and then, most concerning, my golf game went to the shits!
Off to our family GP in August, then onto a neurosurgeon and after MRI's, EMG's, blood work, poking and prodding, we arrived at the neurosurgeon's for results.
On November 17th 2010, Susan and I received the news of my ALS diagnosis. (What is ALS? http://www.alsont.ca/ )When they talk about surreal events happening in your life this was truly one of them. We were literally in the doctor's office for 15 minutes, got the news, some instructions and then left. We got into the car, broke down and could not just believe what had happened. We had expected some sort of diagnosis/response but instead received, what we felt, was the worst possible news.
After we somewhat composed ourselves we headed home and then had to take the agonizing step of sharing the news with our family. That burden fell on Susan as every time I attempted the words I ended up gasping for air and couldn't finish a sentence. I'm sure when we said "for better for worse, in sickness and in health" we didn't know we were signing up for this! Susan was my rock getting through the beginning, and still today. Though the things she thinks of it at those life changing moments, hmmm, more on that another time!
All the conversations were difficult, but most difficult was telling my sister, Pam. She had lost her friend, Gail, in 2010 to ALS. She had already experienced the journey with Gail, and more than any of us, knew about what we were in for, long before our grasp of it all. It doesn't seem fair that one of the nicest people in the world, my sister,  should have to go through such a thing once, nonetheless twice.
Fast forward, over the next couple of months, through to Christmas, we were directed to the ALS Clinic at McMaster Hospital in Hamilton. Lots more poking and prodding to confirm the diagnosis and eliminate "mimic"/similar diseases: Parkinsons, MS, West Nile to name a few. We met the clinic team. The clinic is really what I call a "one stop shop". They have an entire team dedicated to ALS patients and their families. We are fortunate to have the clinic so close and it has provided relief and comfort to us as we continue to educate ourselves on ALS.
We then shared the news with our close friends and extended family. The support and love we have received, is not surprising based on our family and friends, but overwhelming. Not a day goes by without someone checking in on how we are doing.
In 2011, to date, we have had a few visits to the clinic, and continue to gather a better understanding of the changes ahead and the benchmarks on my progression of ALS.

Our Journey

Well I can't believe I'm actually going to start a blog! Strange how things happen and the direction that it leads you on.
Since my diagnosis in November, the outpouring of support and love from our family and friends, has quite frankly, been overwhelming. Susan and I cannot put into words what each and everyone of you mean to us and how your support has made the changes in our lives bearable and allowed us to move forward.
Being blessed with a wonderful family and great friends, we wanted to ensure that we kept you all up to date on our journey and share with you the changes and challenges that we are facing and hence the "blog"!
Now I do promise some things with this blog. I won't be on daily letting you know what I had for breakfast, that the garbage got picked up on time, that I'm heading to the McGibbon, or that Sarah finally went on the potty, no none of that!  So if that is what you are looking for go find a celebrity tweet somewhere!
Over time, Susan and I will provide updates on my health, what has been happening with our family and any milestones we reach. As my voice fades over time(long time we hope!), the blog, I hope, will provide me a voice and opportunity to speak to all of you.So thanks for coming along with us on this journey. It won't be pleasant at times, I'm sure, but we thank you each and everyday for your love and support.