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!