Tuesday, 3 September 2013

Health Update

It's been a while since I've shared any concrete information on my condition these days. I have hinted at some things and shared others in a disparate fashion. Now I think it's time to provide a simple, direct update. There has been a lot going on with my body, and my emotions, over the last couple of months, the time that I have either been on the boat having a heart attack or on the road having an adventure.

Starting with ground zero, my legs, they are pretty much useless. I have no muscular strength left in them at all, with the oddest little exception, my right foot. While it is certainly not strong by any possible measure, I can still wiggle and curl the toes on my right foot and I can still lift my right heel. My left foot, on the other hand, so to speak, is completely unable to do any of this.

You might wonder how this impacts my driving. With the hand controls there is very little impact on my freedom to drive. The loss of legs does mean I have to be careful about where I put my feet when I get in the truck. The inability to stand also means a change in the way I get in and out of the truck. Even with the lift seat as an aide, standing is a dangerous affair, so I avoid it if at all possible.

Moving upwards, as this disease seems to be doing, I am losing strength in my diaphragm along with my stomach and chest wall muscles. This causes two issues for me, one cosmetic and the other serious. The cosmetic issue is that my stomach muscles are not strong enough to hold in my belly; it protrudes more than ever, giving me a distinct "ALS Belly" or as I prefer to call it, my Buddha Belly. This is not helped by the fact that my weight loss is taking place pretty much everywhere on my body but my waist. I am losing muscle mass, not belly fat. I hate this new reality, this big bellied look.

The more serious issue with loss of diaphragm and chest wall strength is the impact it is having on my breathing ability and speech. I seem to have a constant phlegm problem; I am constantly clearing my throat or coughing. I feel like I have a low grade pneumonia, suffering from a nagging, persistent yet unproductive cough. The most awkward part is when I laugh; I go into a coughing fit and still produce nothing worthy of note. The moisture just collects in my lungs and I do my best to keep it moving. I use a Lung Volume Recruitment system to maintain as much range of motion in these muscles as possible, but it is, as are all things with this disease, a losing battle. My lung capacity has fallen to below 80%; it is now below the normal range and into the unhealthy range.

The speech part is just evidencing itself these days. I get tired at the end of each and every sentence. My voice tends to become hoarser and more "breathy", and not in a good way. I don't sound sexier: I just sound tired. It's hard to tell in a lot of cases as I hide it well. I am now careful not to talk in long sentences. In some ways that may be a good thing; it makes me a better listener.

There are other things too, like the challenges swallowing and the need to really focus when eating. Those are not new, just annoying. Rather than dwell on them, let's just say that things are moving along as expected, neither quickly nor slowly, just along.


  1. I appreciate the update Rick but am so sad for you in your diminishing faculties.
    You have my love

  2. Dear dear Richard,

    I so hope that you read this and that is helps you. My son, Chip, has ALS. We think of him as God's warrior against the disease. He has stepped outside the box, studied so hard, worked so hard and HE IS DOING SO GOOD! We have posted what he does on a website, www.Chips-ALS-Conquest.com ... what he eats and doesn't, exercise (though we understand the limitations, especially in the beginning), and the protein drink he uses. Chip is still working full time and has actually gained weight this year. Through a friend, he met Joe, who also has ALS. Joe joined in, doing the same things, and he has improved so much. Richard, I hope with all my heart that my sending this touches your life in the most positive way possible. Please see the website and contact us if you wish. Hugs and warmest regards,
    Pat a.k.a. Chip's mom