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ALS is a thief. Not only is the disease difficult to diagnose, it is insidiously sneaky— like a thief— in that it robs people of their ability to move muscles.

I have a physical therapist who has become quite innovative at helping me to help my muscles move. Some muscles I can control well but I am losing control of many other muscles.

For  …   Read More  »

Life on a ventilator may be a requirement but it isn’t and hasn’t been an enjoyable process. Well, except for the breathing part. That’s what the ventilator does. It breathes for me because ALS has taken away most of my ability to breathe on my own.

How so? And what about the air dying? More on the latter in a moment.

Most  …   Read More  »

ALS can be a slowly debilitating and crippling disease. Muscles waste away because damaged nerves destroy the connections from the brain. What muscles are affected?

Nearly all muscles that we control in normal life eventually weaken and stiffen into cramps. Arms, legs, hands, feet, swallowing, speech, back and posture, and fingers.

Fingers?

The  …   Read More  »

There was a time in my life when I paid attention to the latest and greatest movies. These days, not so much. The Hunger Games is a very popular movie that I have not seen and I am not likely to see.

Each year two young representatives from each district are selected by lottery to participate in The Hunger Games. Part entertainment, part  …   Read More  »

ALS robs people of muscle control. That means muscles we want to control don’t work as well and then stop working entirely.

Except the brain, of course.

My brain MRI showed “less than age expected atrophy.” I consider that a compliment from a trained medical professional.

Loss of muscle control varies among people with ALS.  …   Read More  »

Goals and objectives are important in life and more important when you’re about to die. I’ve been trying to set up specific milestones each month. For example, back in February I set up Spring, the Memorial of Christ’s Death, and April Fool’s Day as upcoming goals.

I’m still here.

The next important milestone  …   Read More  »

How many hours in a day? How many days in a week? How many people do not understand what 24/7 means? Or, 24/7/365?

Merriam-Webster:

for twenty-four hours seven days a week

24 hours a day and seven days a week. Basically, all the time.

I wear my ventilator mask almost 23/7. Nearly 23 hours a day, seven days a week. For most of the day that’s  …   Read More  »

In the not too distant past I did some work with a tech company headquartered in Minnesota. Minnesota? Prior to a visit to Mayo Clinic in the dead of winter I spent a week there one night.

My tech counterpart asked about weather and if I could tell the difference between seasons where I live. Yes. He thought that where I am from is in the  …   Read More  »

How many meals do you have left to eat in your remaining lifetime? How about 1,000 per year or 10,000 or so per decade.

I may be down to my last 100 meals.

That’s a month or two, depending on how often I eat and how much food goes into each meal. If you were only going to have a few dozen meals then what would you eat?

People who suffer  …   Read More  »

Exercise is important. That is true even for people victimized by ALS. Exercises may be modest; little more than stretching out cramped muscles. In my case cramps are growing in number, duration, and frequency, so exercise cannot be as strenuous as it once was.

But I close my rings.

Let me explain.

Apple Watch users have a few tools that measure  …   Read More  »

The two aspects of good health that I miss the most are breathing and mobility. One does beget the other. If you can’t breathe well, then mobility becomes limited.

More than 22 hours of each day are devoted to breathing through a mask that is connected to a ventilator. I need both to breathe. The amount of time on the ventilator each day,  …   Read More  »