← Older   Newer → Browsing ALS Bites

The Bachwalkers

Velcro shoesI have been honored and touched by the generous donations of friends and family to the ALSA on behalf of my team, the Bachwalkers, in the upcoming Minneapolis “Walk to Defeat ALS”.[1] Our team has exceeded its $2000 goal already (the walk is more than three weeks away) placing us in the top 10 of the more than 100 teams registered for the event.

Almost half of the money raised so far has come from elementary and high school friends, some of whom I have not seen for more than 30 years! Old ties certainly run deep, and I have more affection than ever for these good friends.

See news about Cool tee-shirts!

It has been some time now since I have provided an update here on my dalliance with ALS. Yes, dalliance is probably an odd word to describe one’s experience with a disease, but I really dislike the usual “battle” metaphor. A battle with ALS is not really winnable, in the same way that a battle with life is not really winnable. The outcome is assured. A dalliance sounds like more fun than a battle.

At any rate, here’s my update …

I’m still walking, talking, breathing and eating. There hasn’t been much change in those four important areas. This is the good news, and it’s very good news indeed. It has now been at least three years since my first symptoms appeared, and to be able to report such news places me with the most fortunate five or ten percent of PALS (people with ALS). I am very sad to say that I know how true this is. I participate in the ALS forum at PatientsLikeMe.com and come in contact with many PALS who are persevering with challenges far greater than mine.

What has and is changing for me is that I am losing strength and fine motor skills in my right hand and arm. Soon, it seems, my hands will be mostly decorative. That is an exaggeration. The weakness in my left hand seems to have plateaued about a year ago, and I can still use it at least to some extent. But not for much.

Dragon NaturallySpeakingMy right hand seems to be a year or more behind my left. When it catches up, things will be interesting for sure. More and more now I am making use of adaptive equipment. I can’t type much. I bang clumsily on the keyboard with my middle finger, but my arm tires quickly. I now dictate most of what I type using a program called Dragon NaturallySpeaking. This program can be used to control the mouse as well, and to take the place of my hands in virtually any interaction with the computer.[2] It can be frustrating to use, but it is pretty slick and I’m getting better at it.

A few days ago I bought the new shoes pictured above (velcro!). Now I can put on my own shoes again just like a big boy. I will be getting a “sock puller” from the VA soon which will help as well. I also have a variety of little tools designed to help me handle silverware, but I don’t always use them. Joann occasionally cuts up food for me, and I am a little sloppy. Just like a little boy.

A pair of lightweight mesh athletic shorts and a tee-shirt is my uniform of choice. I count this as a benefit of ALS. Every day is casual Friday for me! I probably won’t be quite is casual over the Minnesota winter.

I could go on with petty examples of changes but I think you must get the idea. I would rather focus on what I can still do, which is a lot. I won’t go on and on, but I will say that I’m still playing Scrabble tournaments, birding, traveling[3], and devoting myself to some of the more leisurely duties of retirement: reading, listening to music, doing crossword puzzles, fanatically following the Timberwolves and Lynx, maintaining three websites, watching movies and taking long naps. I really can’t complain.

Many of you ask about Joann and others in my family. I am very aware of how tough this is on them. In many ways it is tougher on them than it is on me. I know they are saddened and struggle with every change they see, but they are strong and are doing very well. As much as it pains me to see them to go through this, I can’t imagine my coping without them.

ALSA logoIf you are in the Twin Cities area and at a loss for something to do on Saturday morning, September 22, come on out and join us (the Bachwalkers) for a nice three-mile walk to raise money for the ALSA. Click here or on the spiffy ALSA logo for more information about joining the team or to donate to the cause.

Recent ALS Bites:
12/17/2019 Steve’s Emergency Communication To-Go
02/28/2019 Unhappy Anniversary
05/12/2017 The Eyes Have It
08/04/2016 YFALS National Corntoss Challenge
07/18/2016 Scopolamine Blues

   or see the  Complete ALS Bites


  1. It’s in Eagan, but the ALSA is calling it the “Minneapolis walk.” [^]
  2. The VA gave me a copy of the Professional Edition of Dragon. This allows me to create macros to perform a variety of tasks. Unfortunately it doesn’t run natively under Linux so I am now forced to use Microslop Windblow$ on my workstation. I do run Linux Mint as a virtual machine under Windblow$. Not a perfect solution, but the the best I can do for now. [^]
  3. I am really looking forward to traveling, along with eleven members of my family, to Punta Cana in the Dominican Republic next January.[^]

← Older   Newer → browsing ALS Bites