April 2016

April 

We went to the Bahamas on a vacation in mid March. I didnt think it'd be possible for me, but there I was, being whisked through the airport, and found myself a few hours later in the pool! (water therapy is great for ALS. I wish the Clinic offered it). Going away was both pleasurable and a big step for me  because it was the first time I had to rely using on electric mobility to get around the resort. (I leased a scooter for the week) I also had to rely on wheelchairs at the airports. This was a first for me. It took a little psychological adjusting to deal with it. The first day was a little rough. My pride took a wounding. But after a short while I saw that there was no other way and the practicality of using a scooter won me over. I was also amazed to learn that so many people were willing to help.

More challenging was witnessing other father's with their sons doing all the things I used to do with my son. I find that this does not get easier. This morning was the opening day of little league. I was grateful to be present, but the contrast between this year, with me now partially disabled compared to last year is when I was "normal" is painful. But still I had a great time, and I find that I adjust to my new reality pretty readily.

Since February I have noticed that I am continuing to decline. Hate to admit it, but facts is facts. I notice it most notably in my hands. I was an accomplished guitarist. I was still able to play a little guitar in February. Today, that is not the case. I can barely hold a pick. Gripping objects in my hands is very challenging. My handwriting is terrible. On the nutritional front, I experience a fluctuating appetite.  I have lost 10-15 pounds since then as well, mostly in muscle mass. Swallowing has become harder.  I am scheduled to receive a feeding tube soon. I was firmly against this earlier, but it's funny how when staring the possibility of a quicker demise you suddenly become very open to other options. 

On the plus side, I continue with the Deanna protocol. I think it works in some ways, in some ways I think it's just fattening the wallet of the  pharmaceutical company. Who knows. I continue to do light yoga courtesy of my yoga teacher who comes to our house once a week, I do stretching and have an excellent masseuse. I purchased a rollator and have gotten over my manly ego to use it. In fact I used it to go to the little league game this morning and it made a huge difference. It's black and I'm going to put skull and crossbones decals on it.

In late February and March, my voice suddenly, inexplicably improved somewhat. I was able to have short conversations and be understood! Unfortunately this improvement has ended and it's worse as it ever was. Totally garbled. Oh well.

I am experiencing some breathing issues, mostly with intense coughing and wheezing. I am now using a Trilogy which is making a big difference in my overall energy level. Amazing device, although the sound of it is driving my wife crazy.

Speaking of my wife and driving her crazy, I am so incredibly lucky. Emma is amazingly helpful, I don't know how she finds the energy to take care of my increasing needs, and hold down a demanding job, a demanding kid, and a demanding husband. Thank you Emma.  My 11-yar-old son is also amazing. He’s very helpful in general, but what I find truly remarkable is that he’s not fazed by any other the mobility assistance devices or medical equipment hanging around. In fact, hes fully supportive of my using it. Did I say I’m lucky? Oh yeah, I did.

As I am getting more comfortable to share the news of my condition, I continue to reconnect with friends, some I have lost contact with over the years, all of which are willing to help. Its truly humbling.

I have many frustrations too, but I’m not going to go into that now.