Wednesday, 22 May 2013


I have known for a while that ALS was taking other muscles from me. When I was first at the ALS clinic the neurologist who saw me at that time, one of the five who have seen me so far, one of the five who have all concluded I have ALS, said that he thought there was some initial weakness in my hands. The medical assessment I provided for my divorce stated that the likely path of this disease for me was loss of my upper body and breathing muscles.

Over the last six months I have noticed issues with shortness of breath, especially with physical activity. I find myself coughing and feel consistent phlegm in my throat. These are early signs of loss of strength in my diaphragm and upper GI muscles. This loss of strength in my diaphragm will cause my breathing to weaken; this means fluid will eventually build up in my lungs causing the pneumonia that will likely end my life.

For now I get acid reflux, also known as Gastroesophageal Reflux Disease (GERD), particularly after a couple of glasses of scotch. It is such a shame because I really like a nice glass of scotch. People with ALS have a greater tendency towards GERD due to a weakening of the lower esophageal sphincter. This loss allows stomach acid to reflux into the esophagus and into the back of the throat. It also means there is a possibility that I could inhale stomach acid into my lungs. Mostly it's just plain uncomfortable

I am already seeing something called laryngospasm, a brief blockage of the airway. My soft palate seems to "block" my throat at times and I have trouble swallowing. I already have heartburn and some moderate pain in the pit of my stomach especially after eating. I find myself awakening at night coughing although I do not yet experience shortness of breath while resting. That just happens with activity like standing or putting on socks.

It looks like I am moving from the inconvenient, annoying phase of this disease to the challenging, uncomfortable stage. It is progressing down the expected path, if there really is an expected path for this random thief. I am two full years into ALS with two years expected ahead of me. This new phase will be a time of reduced activity, reduced diet, reduced options.

The losses continue. The ropes grow tighter. The choices diminish. The train gets closer.


  1. I know you say , it is what it is, But My heart aches for you in this distress and I ache for me too as I contemplate your losses. Your life is being stolen in such a terrible way. All that remains for me is the love I have for you.

  2. I get the same problem with stomach and throat muscles. Carol

  3. Hi Carol

    It seems to be fairly common. Rough, eh.



  4. Richard, I have GERD also. But, I don't worry about it too much. There are a lot of other people suffering out there in the world much more than me. You, for one.

    I'm glad I found your blog. Looking forward to your future posts.