2016!

Hello...
it's me...
I was wondering if after all these months if you would like to hear from me...

Adele is back and so am I...sense of humour-check, still intact!


Happy New Year to all!

I hope everyone had a happy holiday season.
We all survived around here and enjoyed the break from daily routines to spend time with family and friends.
Ben and Sarah had a great Christmas, spoiled all round, but both excited and appreciative. Sarah was all in this year with Santa, which made it extra fun!

Well once again I have been negligent about keeping things "fresh and real". Good thing I don't require income from my blog, broke or fired I would be!
We did do a full kitchen reno during the months I was missing, so my focus was clearly on managing my wife, and explaining over and over, that we did have a budget! Good news, all done and looks great... not sure about the budget though.

How would I describe the last number of months...hmmm... difficult, frustrating, numbing, enlightening, just to roll a few adjectives.
Lots of changes happened, more proposed, and it seemed more overwhelming. I think a large part was losing any independence I may have had left and was holding on to.

We had a lot of people in over the last few months... nurse practitioners, OT, case worker, dietitian, respiration specialist and a couple visits to the ALS Clinic. Much of it came with learning new equipment, education and some tough discussions regarding the road ahead.
For the first time in my journey the conversation included the word "palliative". Now please don't jump to any conclusions, I'm hoping to be hanging around for a while longer! It was just time for those tough discussions to happen and the details sorted out, and I thank my family for their support during them. I know it wasn't easy!

My PSA for the month...

"regardless of your age, health, marital status whatever ... please take the time to have the tough discussions now to ensure your loved ones know what your end of life wishes are. Not just a will but the "other stuff" as well. It will provide them with the comfort and direction during a difficult time.
I know , morbid stuff, but necessary, lecture over!"



Health wise, I've been pretty good. Without the whole ALS thing, I'd probably be living like a rock star!
My ALS world, a little different. I am now, pretty much, fully dependent on others for my care. Over the last several months I have added to my "arsenal": a lift, suction machine, bi-pap, nurse visits and just around the corner... hospital bed time and feeding through my tube.


Grandpa did the "Alpha" test

The Hoyer lift, as it is known, transition went relatively smooth. That is, after I made my 70 year old able bodied dad try it first! Once he landed where he should I was willing to try. So far, no falls, and much less stress for all of us.



Ben, Sarah and Jackson

The bipap machine is a different story!
A bipap and cpap are largely known for there use by those with sleep apnea. You put a mask on at night and basically it ensures you get air. The bipap offers inhale and exhale pressure, versus the cpap, which is a single pressure.

In my case, the idea is, wear the bipap at night and it allows my lungs to take a break from working so hard.
Truth be told, I've been slow to do more than "test" it to this point.
Between my somewhat heightened anxiety levels and the whole "Hannibal"
face thing I got issues! Couple that with the fact that I can't adjust the mask without assistance... you get me right?
Needless to say, I'll get there.

That's all I got for now. Slow going on the keyboard these days but you all keep me coming back so thank you!

Till we bounce again...