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Wednesday, November 20, 2013

Changing With the Seasons

The trees in our yard put on a gorgeous display this year, but now all of the leaves have fallen. Last week end, young men and women, and their leaders from our LDS Ward, came over and raked and bagged every leaf.  Our good neighbor, Howard Schmidt, came over and cleaned and unplugged the rain gutters on my house. They were so stuffed that during a heavy rain storm I had a water fall landing on the soil next to the foundation on my house.  Over time, we developed a sink hole that opened up under the steps on our front porch.  Our good friend, John Jones, joined Howard and assessed the situation and came up with a solution.  The following Monday, John had some people come over and pour concrete mixed with clean dirt under the porch.  We have great neighbors and friends.  I'm not sure what we would do without them.

With the change in seasons we have made a few in-door changes around here.

We have finally moved down stairs to the main floor.  It is working out really well.  Our former office, now bedroom, turned out really nice and using the shower in our remodeled euro-style bathroom is great. The entire bathroom is tiled to the ceiling. (photos below)  It turns out that I only go upstairs once or twice a week (if that often).  I can still pull myself up the stairs if I want to, but I'm glad I don't have to. When I go down the stairs I scoot down on my butt like a toddler.

As I mentioned in my last post, I have a little scooter that I can buzz around on. Riding around on the scooter saves the energy that I would waste shuffling around. Last week a guy came to the house to start the order for a power wheelchair. I don't really need it yet because I have the scooter. I am trying to follow the advice that we receive at the clinic. I will eventually need the power chair so we are just staying ahead of the game by beginning the ordering process now instead of waiting until it is a necessity.

Several months ago our friend, Anne at the Muscular Dystrophy Association (MDA), told us that she had a wheel chair lift in their storage area.  She said that it was just taking up space and asked us if we wanted it.  It is what they call a porch lift.  It just lifts a chair (or scooter) up so you don't have to worry about the porch steps.  We have a three car garage so we had planned to enter the house via the 3 steps up from the garage. If we had to build a ramp, it would have been very long.  The ADA recommends that for every inch of vertical, you should have 1 foot of horizontal slope.  That means we would have had to build a ramp 18 feet long.  So we gratefully accepted the offer from Anne. We had a really hard time finding someone to install it for us.  It seems that the people that install these want to sell you a new one so we had a hard time finding someone to install a used one.  Kory, our respiratory supply guy, referred us to a guy who was willing to install it for us.  So we now have a nifty little elevator.  I am using it with the scooter already.  Thank you Anne!

Kevin and his voice (iPad)
I still feel like I'm in pretty good shape.  My speech has been gone for quite a while.  In March I posted a video that I thought demonstrated how my speech had deteriorated. Now, I listen to that video and I realize that I was a silver tongued devil.  Now I'm a devil without a tongue, silver or otherwise.  I'd be in real trouble if I didn't have my iPad.  I have recorded some video to show you why the iPad app is so important to me.  Check this out:

I still feel good. I am fortunate that I don't have any significant pain symptoms other than the occasional muscle cramp.  I seem to be losing strength on my left side faster than on my right.  My fingers still work, as evidenced by my typing, but I have a hard time with anything that requires fine motor skills that involve my left hand.  Buttoning a shirt is a good example.  Tying a tie is difficult and forget about tying shoe laces.  On my left hand, it is really the thumb that causes the problem.  I have come to appreciate opposable thumbs. 

When I walk I am most stable when I use my stick in one hand and hold hands with Gerri' with the other hand.  Every once in a while my left knee buckles under me, but fortunately this is not a regular occurrence. I have "foot drop" in both feet, but it is much more pronounced in my left.  My legs are skinnier.  Using the feeding tube, I have been able to maintain my weight.  Because I am losing muscle this means that I am replacing the lost muscle with fat.  As a result, my pants don't have as much slack around the waist. The folks at the ALS clinic tell me that this is a good thing. Patients who maintain their weight supposedly last longer than those that don't.

We had our clinic day last Wednesday, and it appears that I am doing OK.  My lung capacity diminished some, but my oxygen levels are good.  No surprises with everything else.  Each morning I am taking an extra very small pill (amitriptyline) that helps dry out my mouth. That appears to be working, which is great.

So, all things considered, I am doing really well. We are still counting our blessings: great friends and neighbors, our super cool family, and most important of all, Gerri' and I have each other.


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