Health professionals both in and out of neurology have told me I will die of ALS. The common theme is "three to five years after diagnosis."
|Cheryl Carter New
I have had the disease for more than seven years now and am losing the battle to walk. I lost my speech a few years ago.
What I want to know is why ALS isn't treated like any other disability. Why are we told we will die of it? ALS affects voluntary muscles, not the critical ones one needs to live. Eventually it affects one's diaphragm, which is necessary for breathing, but there's technology to restore that function.
Disease or disability?
Quadriplegics with spinal cord damage aren't necessarily told they'll die of their injuries. Yet their functions are similar to those of us who have ALS.
Quadriplegics have rehabilitation centers. We have hospices.
Comparable diseases such as Parkinson's, multiple sclerosis and various muscular dystrophies are seen by many doctors as disabling conditions — not inevitably fatal diseases. If you have one of these diseases, it's assumed that health care professionals will help you to "overcome" the symptoms and get on with your life.
The first time I visited a prominent center for ALS, the coordinator told me it was "too expensive" to prolong my life. She told me to take that trip I'd always wanted to take before "it was too late."
When I asked about research, she said, "Well, last year we thought XYZ would be a cure but it did not work out so we don't get excited about anything now." I left there with no hope and no future.
I'm a researcher by profession. So when I got over the shock of visiting this center I did some in-depth research.
I learned what nerves and muscles are affected in ALS. I learned what devices are currently on the market to overcome the most severe of the problems affecting ALS patients.
I looked at Christopher Reeve, who is making a difference in the world in spite of being on a tracheostomy tube for breathing. I looked at Stephen Hawking, perhaps the world's premier theoretical physicist. He teaches classes, writes books, has fathered children and has a full and active life. When he received his ALS diagnosis in 1963, he was undoubtedly told he would die.
Quality of life
Too often, health care professionals tell people with ALS: It's too expensive to prolong your life, it's too much of a burden on caregivers, and "you don't want to live that way, do you?"
Let me take these one by one and give you my perspective.
1. It's too expensive to prolong your life.
Who are these people who put a price on a life? Do they know what I will contribute to the world if I live? Do they know the value of my life to those who care for me?
I've talked to many people who choose to live and have willing caregivers in the home. They aren't all rich. In fact, some would be considered low-income by the standards of many health professionals, but they manage just fine.
2. It's too much of a burden on caregivers.
This is a personal matter and not one for judgment by outsiders. There are people to whom a loved one with ALS is so important that they gladly provide care.
I know a woman with the disease whose husband provides such good care, the local hospice program said the family didn't need assistance. Her daughters-in-law have offered to spell her husband so he can get out and pursue his own interests.
My husband is a wonderful caregiver and we have become even closer through the challenges we face.
3. You don't want to live that way, do you?
Let's see — I don't lose my sight, hearing, sense of feeling or the ability to taste. I can still see the beauty of nature, hear the music of the wind in the trees, feel the rain on my cheeks, and experience the love of my husband and family. I can watch the boats go by on my little lake and see Big Bird (our great blue heron) as he walks in his dignified way along the shore.
With technology, I can continue to write and correspond with my family and friends. I can even talk. And there's new technology every day. With a power chair, even if I have to go on a trach I can be mobile and can travel. I may not be able to move, but I can experience the world.
How many people, in their rush to do the next thing, don't experience their world to a tenth of the degree that I may?
Focus on living
It took many visits with various doctors of neurology and lots of miles on the car, but I finally found a clinic where every person is focused on helping you live with the disease — the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C. I am fortunate; I have talked with dozens of people who are not so blessed.
Living with ALS or dying of it is a personal choice. It's a choice, not for the health care professional to make, but for each person with the disease.
New, of Inman, S.C., is president of Polaris Corp., a grants consulting firm. She has co-authored four books in the field of grants acquisition published by John Wiley and Sons; a book on negotiation; and numerous articles on various business topics.