Many Firsts...and Update

Hi all,
well where do I begin? It's been a jammed pack couple of months since my last entry...McMaster visit, Toronto Rehab Clinic visit, reno decisions and a family trip to Florida! So being the type A sort why don't we go chronologically or "in order" as they say! You might want to get a coffee or set the alarm to wake you as this could be a long one! Apparently, I'm going to need to blog more frequently!

First things first, celebrated my 47th birthday with family and friends in February! Enough said.

Next, also in February, we celebrated the "princess" birthday(no not Susan!) with Sarah turning 4!
2 parties were in order as we celebrated early on the Murray side before G&G headed south. Then, a party, on the day of, with the Anderson clan. Pink and purple were the colours of the day.
Give Dad credit for his fashion sense as Sarah selected Daddy's dress over the one Mommy bought her!





March 2nd-McMaster ALS clinic

Off on our quarterly visit we went. Last visit was November and at that time, overall, things were holding. Got poked and prodded a little more than usual on this visit. A neurology resident was in with our regular doctor so we spent the first half hour with him going through the ringer. When Dr. Turnbull joined us we went through our updates.
No surprises really.
As I spoke about in February, hands are worse and legs are holding, but wobbly. Left hand is worse than the right which sucks when you are predominately left handed! So I'm learning to eat with my right as well as some "funky" bent utensils that I'm trying out.
Best example I can give you of my waning left, is when you pick food up with your fork and head for your mouth, stop about 3-4 inches away, right when you are going to make the turn to fire it in! That's where my hand stops and I can't make the turn and who knows where the food lands! It's a weird feeling when your mind wants to execute but your body refuses.  Great weight loss program as you eat 50% less!

I digress, back to the visit! We also did a little driving test checking my rotation of hands and shoulders and reaction time with my feet. That coupled with Dr. Turnbull asking Susan whether she and the kids would still drive with me(she said yes,whew!) and I'm clear for another quarter. Reality is that Susan handles the long drives but I still have my freedom to zip around locally.

Other news, respiratory numbers remain solid with little change so that was good.

Our first new first was meeting with our ALS society rep and understanding the equipment pool program, what is available and how you apply for it. The pool is quite something, from grab bars to wheelchairs, walkers, recliners, hospital beds and much more, you "borrow" what you need, thereby lessening the financial and mental decisions. As the disease is progressive, each individual varies in their needs, and may only need a piece of equipment for a short time before needing something else. The pool provides that support.

After that, a check in with the team social worker to make sure I'm still a relatively happy soul and off to lunch! Changed it up this visit, went to the Lonestar for lunch, chippies and salsa, fajitas, mmmmmm!!

March 6th- Toronto Rehabilitation Clinic

As I had mentioned in a previous entry, MacMaster lost their speech pathologist and thereby referred me to Toronto Rehab to handle my future voice and communication needs. We weren't sure what to expect from this visit, another of the many firsts this month. Add to that the anxiety and apprehension that I was feeling realizing you are going to discuss your future without your voice.

The team quickly put Susan and I at ease upon arrival and after the cursory review of my case we got to work. We spent the next 2.5 hours looking at the different equipment available for the different stages I may enter in this journey. We started with our current computers; mouse adjustments, keyboard changes, tricks that I can use when things get more difficult typing.
Hey,  did you know that your computer has the option to set up with an onscreen keyboard so if you lose the ability to type but can still manage a mouse, then you are good to go! Who knew, now I do! Also you have this "thing" called "Sticky Keys" which can be activated to eliminate the two key hold commands! Okay enough advice, I'm not your IT guy!

Next we moved onto my voice. We started with my current state. One of my current problems is projection and volume. Get me in a room with a lot of people and I strain to be heard, some actually would say that's okay enjoy that! Believe or not, it does require a fair bit of effort to speak and anything that assists with the energy conservation is okay with me.
So we started with a mic and amplifier. So picture me with my best Britney or Usher headset on, amplifier strapped on my hip and there you have it! Those of you that know my sister and I well will be scared that I'm going to constantly bust out a song, but hey, my disease, my equipment, my choice! At least if it's missing I know that Pam has it!
I did use it for about an hour and it did make a difference. I could talk at a volume comfortable, without strain, and adjust the amplifier as needed. I have one on the way.

We then looked at those devices that can assist once I lose my voice. This was a little harder but once over the emotional side of it you become intrigued and amazed by the technology and options.
I won't go on and on about all the options but it starts with an ipad size "box" that, in it's simplest terms, has a keyboard, word prediction, type in what you have to say, press speak and voila. I tested a few and it seemed pretty easy.

The last one I tested was a system that is eye controlled. We had seen it as Jeff Sutherland(Doctor from Georgetown with ALS) has one. It is truly amazing. A small camera calibrates your eyes on the screen, then from there you utilize your eyes on the screen keyboard to select letters and/or the word prediction tool. Once again when completed, hit speak and the words come out(you can also select your future sexy voice!). You can do email, surf the internet and, most importantly, turn on the T.V.! I played with it for 10-15 minutes and it seemed to be quite simple, incredible technology!

We then finished up with the team there(who were great by the way), understanding next steps and access. Lots of material to look at, and not surprisingly, we left there exhausted!

My emotions were mixed when we left, relieved and blessed that there is such technology available, but certainly not in any hurry to use it.


Floridaaaahhhh!

Off we went in the middle of March Break to Madiera Beach(Gulf side/St Pete's) for some warm weather and freeloading off Grandma and Grandpa Murray!

Many firsts on this trip.

I, usually was the planner, and get ready guy for our family trips. Not that Susan couldn't do it, but as travel was a part of my working life, it would just carry over to our personal lives. Now Susan has the task of getting us ready, out the door and to our destination. I'm still pretty capable on the admin side and make sure the itinerary and package is prepared!

If we were going to make it where we were going, and do some of the things that we wanted to while we were away, then for the first time I had to "give up" my independence when it came to my legs. As you can well imagine, I wasn't necessarily ready to give in and accept such. Susan began "planting the seed", mentioning here and there, some of her thoughts, as our trip grew closer.

So with that in mind, "First 1", we will call it, came at the Buffalo airport.(side note: first time flying out of Buffalo and it was great/definitely recommend!)
"First 1"...Wheelchair.
I will say I could of walked.
The reality is the fatigue I would have endured,  the pace, and stress I would of put on Susan and the kids wasn't worth my stubborn pride.
So, somewhat reluctantly, at the Buffalo airport I settled into my first wheelchair. We made it to the gate on time, and with some perks along the way; shorter security line, somewhere to sit in the waiting area and pre-boarding! When we arrived in Tampa my "chair-iot" was waiting, at the plane's door, talk about service!
I needed the chair in Tampa airport, lots of walking, train shuttle to baggage, and on to the rental car counter. G&G met us at the airport which also helped us get to where we needed to.

Things I quickly learned about being in a wheelchair:
1. Both kids wanted to hitch a ride
2. Don't drag your feet and risk being sucked underneath the chair
3. Bring a plastic bag(see link below!) for wife's purse which was in my lap 80% of the time!

https://www.youtube.com/watch?v=DuScm9FZPmQ

Condo view

We had a great time in Florida, perfect weather for 9 days, temperatures 25-28. G&G had a great condo on the beach overlooking the Gulf and looked after us all week. The kids loved it as their daily routine was beach, pool, eat and play.

We headed off to Busch Gardens one day and that is where I experienced "First 2".
"First 2"...The Scooter.
I was pre-warned as Susan had done her homework. If we were going to go I would need to rent a scooter, walking wasn't an option, nor was Susan pushing me around in a wheelchair all day. I nodded and sheepishly agreed to what I was being told!

Now I don't want to stereotype, but my vision of scooters in theme parks are very large Americans on them with the throttle in one hand and an ice cream cone in the other hand! I know, unfair, but that was my own messed up perception!

My Sweet ride

Early on I almost took a couple of people out. The throttle is hand controlled which was fine, but occasionally, I would press my foot down on the imaginary brake thinking that would stop us! Yikes!

Highlight of the day was a old fella on a custom scooter giving Ben and I the staredown. We were heading up a ramp and the old fella was showing off. So Ben and I flipped our rental scooter into high gear and "whizzed" past him...victory! We quietly, as Canadians, cheered together!

All in all, we had a great day, and the scooter was a saviour. Both Ben and Sarah were able to ride with me at different times for a rest.

The trip was a success, though exhausting, at times. I'm not sure that it was all holiday for the only working person in our family. She now has to corral three of us and make sure all of our needs are met and always before hers. It's one of the most frustrating things at this point, being unable to parent as I want to and trying to make sure I'm providing enough support for Susan. She continues to be our rock, a great mom, and a even better partner.

I guess that's why I chose to refer to it as my, or our,  journey. When I originally was thinking about a title I had googled a few words and journey seemed to be the one that not only reflected my thoughts but also the course of ALS... "passage or progress from one stage to another".
You take the good with the bad, new discoveries along the way, experience some self awareness and certainly reflect on the past and present.

The journey continues...

Well, that's it, carry on as they say and thanks for stopping by!

2012 Walk for ALS-June 2, 2012

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