Scott's ALS Journey: 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!