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