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!