May 2016

Since my diagnosis last November, I have kept private about going public with my disease. I’m not really comfortable talking with strangers about it. And I was able to hide it for awhile. But I think if you tell someone, it breaks your denial a little bit . And I still have some denial. I also think I needed time to process it. And then it took a few months to get up the courage to tell our son. Then we started telling close friends and neighbors. So, it’s been a gradual process.

But I took a big step at the beginningof May and announced it on Facebook. This went against my instinct for privacy and almost felt nauseous for several hours after posting. I have never talked about my health before on Facebook. But I’m glad I did. The response was really great. The warm wishes I received from people, some complete strangers was overwhelming. And what surprised me was people thanked me for sharing it. That was baffling.

I have been dealing with difficulty with eating for some time and as a result have lost almost 20 pounds since February. This is also due to loss of muscle mass which is contributing to the weight loss.

However, the Dr. McC______ started me on a medication to improve my appetite and it seems to be working. I suddenly have a big appetite. And I’m eating big meals again and can taste food, which I haven’t in several months. I’m greatly relieved and grateful

I also had Botox injections in my jaws that are helping reduce some of the spasticity which is one of the issues I was having with chewing. No sign that’s its working yet, but apparently it may take a few weeks.

I seem to waver between two extremes: thinking, schemeing and looking for alternative treatments for my ALS and then conversely, by being completely passive and surrendering to the inevitable. Maybe both viewpoints are necessary. Much as I like and respect my neurologist and his team at the Clinic I find it difficult to accept that they’re there to keep me comfortable until I die. I'm really pissed off about that.

I don’t know how Dr. McC______ does it, going into work every day knowing that he can’t really do anything to change the course of his patients' disease. It must be both frustrating and unrewarding.

But the truth is I’m not improving. I have days that are better than others, but gradually I’m growing weaker, although since I’ve started using the Trilogy my breathing has improved considerably.

Whenever I hear of someone looking into an alternative treatment I think to myself: “they are completely deluded!…why can’t they accept that we’re doomed”? But then I spend a lot of time online looking into alternative therapies myself! But them I’ve always been a hypocrite.

For example, I took the Igenex blood test for Lyme disease. Even though I don’t believe that there is a Lyme-ALS connection…well, I’m curious.It came back negative anyway.

I just seem to can’t give up, although my body is telling me something else. 

My son had a very emotional reaction the other night to my ALS situation. Quiet tears. I think he’s seeing that I’ve slowed down even more in the past few months

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.