An article called "ALS: A Disability or a Fatal Disease?" by Cheryl Carter New in the January issue generated several responses from readers. Here's a selection of comments.
I can't tell you how much I agree with everything you said in your article. I've had ALS for 25 years and I have always considered myself disabled, not dying. It infuriates me that people with other neurological diseases are encouraged to adapt to their limitations while people with ALS are told to go home and wait to die.
The expense issue equally infuriates me. I'm old enough (56) to remember polio patients. Those who fought to survive by going on iron lungs were applauded, not told they were selfish. I've had a very enjoyable life and plan to do so for many more years.
What a beautifully written article! Why does the health care community treat this disease as a "death sentence?" My mom [Connie Rodgers] cried when the doctor told her [she had ALS], and the doctors spoke to the family about "terminal issues."
So now that I have been brainwashed into thinking "terminal," how does one change their point of view, and attempt to present this to someone with ALS? My mom is not positive, and I feel like she is giving up. She says she is just "tired" and doesn't have the will to go on.
Denise Kay Jones
Mount Airy, Md.
I respectfully disagree with most of your opinions. You state, "ALS affects voluntary muscles — not the critical ones we need to live."
My wife lost her battle with ALS in 2002. ALS, unfortunately, attacks all muscles — voluntary and involuntary. [Editor's note: ALS affects skeletal muscle, some of which, such as the respiratory muscles, are partly involuntary.]
My wife battled ALS with tremendous courage — positive and realistic thinking.
ALS is a disease that continually destroys the body — hence the term "fatal disease." I'm not trying to express gloom. I'm just being realistic. ALS has a track record of being a fatal disease. However, there are many, many, many exceptions to the rule.
In the near future, with God's help and medical research, this disease will cease to be.
McKees Rocks, Pa.
Cheryl New presents the concerns very elegantly. Physicians and other health care professionals involved in the care of people with ALS need to read her article. People with ALS still, today, often receive a message of hopelessness when they are told of their diagnosis. They are told that they have a fatal disease and frequently they are not offered the options that enable survival and quality of life.
Each person with ALS must make their own choices based on their goals and preferences; however, this must be based on good information and a positive approach from their physicians.
Edward Anthony Oppenheimer, M.D.
University of California, Los Angeles
I wanted to both congratulate and thank the newsletter staff for this [January] issue. I am an ALS patient in Memphis. All of the articles were excellent, most positive and encouraging to me and my family.
The article by Cheryl Carter New gave me a lot to think about. She is so right that you have to learn to live with ALS and make the most of the situation.
Like Ms. New, there are a lot of things I can no longer do, but there are many more things that I can do that are rewarding and enjoyable. Why not continue to do them? After all, I really don't miss cutting the lawn anyway. There is no need to dwell on things we can no longer do.
The Caribbean cruise we recently took and the symphony we attended on Sunday were great fun. Things like expense and burden mean nothing to my family who are now doing lots for me after me doing so much for them for so many years. I have concluded that they need me and don't care that I can no longer walk. I have been through all the mental hurdles that all patients must go through and have come out of it with such a positive outlook. Talking to others with ALS, other caregivers, staff at the local MDA clinic and reading positive articles like that by Ms. New have all helped get me to where I am now.
No one can tell a person with ALS when they are going to die. You can't diagnose that. Mayo Clinic said my dad [with ALS] would be gone in a year back in '99. They also said he'd need a tube within a month or two of his diagnosis, too. He still eats without a tube.
I think it is up to that person who is dealing with such illnesses like my mother and others with ALS. They have a lot of courage and stamina, and I believe that God is also helping them and us caregivers to have all the strength in us to continue in such a path of being survivalists. As humans we are that, and we will continue to find a cure for this challenging thing that is upon our loved ones.