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Living with ALS by Bob Taylor

Bob Taylor documents his journey with Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig’s disease

Living with ALS: Finding a purpose to life with a debilitating disease

CHARLOTTE, NC,: Some people describe their diagnosis with ALS as being given an “invisible expiration date.”  Or being placed in the “ALS waiting room.” If we are honest, the healthiest people have the same condition.The only difference is they don’t deal with a debilitating disease every day. Nevertheless, the “invisibility” factor is still in that ...

Amyotrophic lateral sclerosis, als, night music, starry night, bob taylor

Living with ALS while battling the “Music of the Night”

CHARLOTTE, NC: Every day with Amyotrophic lateral sclerosis or ALS is an adventure. Most of the time it’s not pleasant, but there are exceptions now and then. Sometimes, there are actually benefits, though I can’t think any at the moment. As I have mentioned on several occasions, sleeping can be one of the most challenging ...

Living With ALS, Sleeping, Bob Taylor

Living with ALS and the challenge of sleeping

CHARLOTTE, NC:  One lesson ALS quickly teaches is that each day is a new experience. If “variety is the spice of life” then ALS has to rank among the “spiciest” diseases in existence. Comedian Redd Foxx would tell this one joke.  Foxx would say his uncle had two regrets in his whole life. One that ...

Balderdash, Family Game, Bob Taylor

Living with ALS: Playing Balderdash, family, and “rotating the board”

CHARLOTTE, NC, December 23, 2018 — One of our many family traditions during the holidays is playing a board game after Christmas dinner. Each year we try to find a game that is new, challenging and just plain old family fun. For me personally, my favorite is still a game called “Balderdash.” Over the years ...

ALS Hugs

Living with ALS: Improvising a new “ALS Hug” keeps us close

CHARLOTTE, NC:  Sometimes with ALS it is difficult to maintain a positive attitude. It’s easy to have a “pity party” for yourself during those rare times when you are alone. Rachel Doboga, an ALS patient with advanced conditions, writes in I’m Stepping Out of the Past to Fully Appreciate the Present: “It’s hard to live in the ...

Rome, Travel, Tour, Memories, ALS, Bob Taylor

Living with ALS: Retaining the memories of friendships discovered in Italy

CHARLOTTE, NC:  A recent e-mail from a longtime friend had a particular impact on me this week. During the early days of my travel writing career, I was invited on a trip to Rome and the Amalfi Coast by a hotel rep who specializes in family-operated properties. Having never been to Italy, I immediately accepted ...

als, Amyotrophic lateral sclerosis, Lou Gherig's Disease, Bob Taylor

Living with ALS: Reaching a milestone and giving thanks for the joys of life

CHARLOTTE, NC:  Today is a milestone for me because it marks my 100th column about ALS since being diagnosed with the condition. Though ALS is not something anyone desires to deal with, like almost anything else, there are mixed blessings hidden within the daily rituals of overcoming the on-going adjustments the ailment presents. Most people ...

Living with ALS, accentuating the positive and seeking a better quality of life

CHARLOTTE, NC:  One of the keys to dealing with ALS is the ability to remain motivated while making sure to accentuate the positive. It is all about attitude. It’s a challenge that is frequently easier said than done, but it’s a must for the quality of life. Many experts believe that one of the keys to ...

ALS, Straw

Living with ALS and fighting to the “last straw”

CHARLOTTE, NC: Almost every American trend begins in California and works its way east. It’s been that way for decades. They were the first to ban smoking.  And San Francisco gave us Sour Dough bread.  So it should surprise no one that the latest fad to reach the public conscience is a ban on straws. ...

The limited mobility of ALS: The exercise goal is to keep moving and living

CHARLOTTE, NC: One of the key aspects of dealing with the limited mobility of ALS is to have a firm exercise goal. ALS patients are usually keenly aware of their surroundings and gradually take precautions not to turn too quickly. They pay attention to potential hazards such as rugs and other household items that can cause ...

ALS and Dysphagia

ALS and Dysphagia can be a tough act to swallow

CHARLOTTE, NC: From the moment we are born three things come naturally; breathing, sucking and swallowing. Swallowing is such a common thing that most people do it about 600 times a day and don’t even think about it. That is until that someone contracts Amyotrophic Lateral Sclerosis or ALS and dysphagia. Nearly 80 percent of ALS patients think ...

Living with ALS means weighing health-care vs quality of life everyday

It may sound ungrateful, but when a person is bombarded with daily suggestions about this idea or that, many of which have already been taken into consideration, it can become overly tiring while you struggle with well-meaning intentions as you weigh your health care vs quality of life

Living with ALS, Victim, Disease, Victimized

Living with ALS, but not as a victim of the disease

Having lived with ALS for little over a year, things have happened to me I cannot control. Does that make me a victim? It might, but I continue to live, travel, write and love. So while my body may be a victim of the disease, I am not letting it take any more of my life than it can.