ALS Archives

Living with ALS and understanding “heterogeneity”

Living with Amyotrophic Lateral Sclerosis, writing 172 columns about the disease and my life with it, now I learn about the "heterogeneity of ALS."

Baseball, Sparky Anderson, John Wooden, Find Your Broom, ALSALS Awareness, Fundraising

John Wooden on Sparky Anderson and finding your broom

Sparky Anderson would manicure the ball field. Extra water along the third-base line to slow the ball. A rounded baseline to keep the ball in the infield.

The day Lou Gehrig’s streak finally ended: Living with ALS

May 2, 1939, New York Yankees first baseman Lou Gehrig benched himself for the "good of the team." After 2,130 consecutive games, the streak was over.

ALS, John Lennon, Woody Allen, Life, Living, ShavingALS, Isolation, Loss of Freedom

Living with ALS: Life, living, according to John Lennon and Woody Allen

John Lennon would be happy to know that despite ALS there's still plenty of life to live. As for Woody Allen, I fully intend to participate.

Living with ALS: Do they have full-bellied fried clams in heaven?

Before ALS, I had food likes and dislikes. Soon, I won't be able to enjoy eating as my food will come via a tube. But until then, I want full-bellied clams.

Living with ALS: A lesson in what to say and when to say it

Living with ALS means living with the well-intentioned, callous remarks of others. While our bodies are failing, our ears still work. Think, then speak.

The blessings of living with ALS while avoiding the coronavirus threat

Being diagnosed with ALS one of the first things we learn is to be prepared. For anything. The CoronaVirus threat is just one more thing to be ready for.

ALS, Personal Amplification Device, PAD, Living with ALS

Living with ALS and learning to use a PAD (Personal Amplification Device)

With ALS one of the things that you lose that removes you from life is your voice - the ability to communicate. A personal amplification - PAD device helps.

Living with ALS: Raising awareness on Rare Disease Day February 29, 2020

Rare Disease Day, February 29, raises awareness of ALS - Amyotrophic lateral sclerosis - and the fight to find a cure for this, and other, rare diseases

Living with ALS while learning about microphones and half-filled glasses

Are you the owner of half-filled glasses, or do you see them as being empty? Either way can be a reason for optimism in your life.

Amyotrophic Lateral Sclerosis , ALS, Living with ALS

Constantly adjusting your world to living with Amyotrophic Lateral Sclerosis

Living with Amyotrophic Lateral Sclerosis - ALS takes constant adjustment to keep living with a disease we cannot beat, but we can't let it beat us.

Steve Gleason, Congressional Medal of Honor, ALS

Living with ALS: Congress honors Steve Gleason’s work to defeat ALS

Steve Gleason receives the Congressional Medal of Honor for his work to create awareness, life-altering devices and the defeat of ALS

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Living with ALS: Show up to life – the benefits of participation

CHARLOTTE, NC: Woody Allen, the prolific screenwriter, movie director and comedian, once said that “Showing up is 80 percent of life.” For those of us with ALS, that percentage is probably higher. The more familiar name for ALS, at least in the United States, is Lou Gehrig’s disease. The man who was known as the ...

Living with ALS: Reflections of 2019 as the New Year quickly approaches

Two days before Christmas, my four-year-old granddaughter said of Santa Claus, "I think he'll bring you a little wheelchair!"

Living with ALS: Learning “Patient Patience” and dealing with “Ignorance”

With ALS, the more routine the better. By establishing a set beginning, middle and end for each daily activity, both sides know what to expect and when.

Time for reflection and life at a slower pace: What living with ALS can offer

One of the few gifts of ALS, if you can call them gifts, is that the affliction slows the pace of living and allows time to focus and reflect upon the past.

ALS, Lou Gehrig's Disease, Amyotrophic lateral sclerosis, Bob Taylor

Living with ALS: Guidelines for moving forward efficiently

CHARLOTTE, NC, October 6, 2019 – Sometimes I imagine myself in camouflage fatigues fighting an invisible creature called ALS. More commonly known as, Lou Gehrig’s Disease. The truth is, that although ALS is a daily struggle that resembles a war, that’s where the similarities stop, because, in the end, the affliction is going to win. ...

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