|Cheryl Carter New
Cheryl Carter New, an author in Inman, S.C., has had ALS for nine years and sees herself as someone with a disability, not a fatal disease. She interviewed several people who’ve lived with ALS for seven to 15 years. In December, she reported on “The Survivors: What Keeps Them Going.” In this article, she conveys what these long-term ALS survivors like their health care professionals to know about living with the disease.
We asked the survivors what they would say to the health care professionals they’ve encountered, including doctors, nurses and technicians. Their comments are presented here as a series of tips or suggestions.
The common theme: Give us compassion, respect and hope.
Hope is not a bad four-letter word!
- First and foremost omit the words false hope from your language. Always encourage patients to leave the doors of possibilities open.
- Have compassion for a patient faced with receiving such a disabling diagnosis and/or prognosis as ALS. Don’t lay such an overwhelming load on a person’s heart unless they’re accompanied by at least one loved one.
- We all have a choice within to consider ourselves as living or dying. I am living!
- I know “normal” healthy people who are dying because their spirits are broken. Not all dead people were “dying,” and not all people alive are living.
- There’s more to life than our individual lives. Life is also about raindrops splashing down to feed beautiful scenery within the soil of the earth, and the sun beaming down to make the scenery visible…. A crisp wind blowing to supply us with a scent of this beautiful scenery…. The moon and twinkling stars to brighten the night….
- These events also feed my spirit and create beautiful scenery within. The spirit within will never die.
Fatal or manageable?
ALS was once just a fatal disease made famous by Lou Gehrig. Many long-term ALS survivors now see themselves as having a disability, not a fatal disease. But they remain interested in research to find better treatments and cures.
Gehrig didn’t have choices, but we do — such as feeding tubes (not gross at all) and improved respirators.
Christopher Reeve (who has a spinal cord injury) has a device like a pacemaker controlling his diaphragm to permit breathing without a respirator. Many research organizations are studying the technique for other diseases involving paralysis.
- ALS has long been labeled a terminal disease and it’s time to reconsider that label. Although no cure or particularly effective treatment has been found, technology is making it increasingly possible for people with ALS to outlive the grim statistics for many, many years.
- Change the label from terminal to manageable.
- Decisions about feeding tubes and noninvasive or invasive ventilation cannot be made far in advance.
- You don’t know just how your disease will progress, how you and your family will adapt, what your tolerance for dependency will be, what your comfort level will be. You don’t know what other medical problems might complicate things, what pastimes you’ll find to keep you entertained and even productive, what financial assistance, technology, help from friends, etc., will be available.
- Improved respiratory support can keep us alive, and computer technology can make it possible to continue to communicate, a key factor in maintaining an acceptable quality of life. There are still many limitations to technology, and the price is high, both financially and in terms of family commitment. But it’s time for health care professionals to treat ALS as a severe and progressive disability, not a death sentence.
- I would like more money and time to be spent in research. As much as my electric chair means to me, I would give it up if that money could be used to find a cure.
The will to live
Most long-term survivors said the factors that motivated them to continue living with ALS had to do with family, faith and quality of life. Health professionals seemed to play little or no part in this aspect of their lives.
- With my wife, with our family, with my company, with our church, the question of not living never came up. The question of how we would manage life came up often, but there was always an answer at hand.
- The trick to finding answers is simple: Ask. People who accept the view that there are no answers will find no answers.
- Overcoming obstacles has simply been a practical matter because of my slow progression. I’ve got no choice but to deal with the hassles of increasing disability because I keep waking up every morning!
- I’m not fighting to live, just finding ways to be physically and emotionally comfortable. Using BiPAP wasn’t death-defying. I knew that with my slow progression, death was still many, many months away. I just wanted a good night’s sleep!
- Strong family support, especially from my wife, makes all the difference. Having other resources provides necessities, such as wheelchair, vans and communication devices, so I’m not a tremendous financial burden on my family. Finding spiritual strength to accept the disease and learn what I can from the experience is important.
Words to eliminate
Strike the word terminal from their vocabulary!
- Health care professionals shouldn’t cause ALS patients to commit suicide.
- Don’t be so negative. You have no business in our decisions except to give us options.
Last but not least
We can’t yet cure ALS or prevent it or stop it, but modern management techniques and assistive technology now give us the possibility of surviving it with an active and satisfying life. That possibility is already in our grasp. We know how to do that.
Health care professionals: If you think life with ALS is unbearable and that your clients with ALS are going to die, send them to someone else before your “health care” kills their will to live.