I’ve had symptoms of spinal muscular atrophy since I was a baby. When most children were beginning to walk, my parents noticed that my head would flop to the floor as I crawled. Doctors said I had amyotonia congenita and predicted I wouldn’t live past my 8th birthday. When I turned 14, the diagnosis was changed to benign congenital hypotonia.
It wasn’t until I was leaving for college at age 18 that the label was changed again, to spinal muscular atrophy. These changes didn’t reflect anything new in my condition, but a change in the understanding of the disease called SMA.
While attending Southern Illinois University, in Carbondale, Ill., I earned both my bachelor’s and master’s degrees in psychology and counseling, respectively. After graduation I worked for the Department of Mental Health in New York for 14 years and for the past 20 years have been in private practice as a licensed mental health counselor in Altamonte Springs, Fla. My wife, Sheryl, and I have two grown, adult kids and a young grandson. I also enjoy such hobbies as computer technology and music composition (including the publication of two songs in Nashville).
These pages are designed to help you better understand the causes, symptoms and progression of the different forms of SMA. It’s hoped that this knowledge will help you plan for the future and take heart in the present, knowing that a diagnosis of SMA doesn’t preclude leading a full and rewarding life.
And I’m in no way an exception to the rule. People with SMA are involved in all areas of society: the arts, science, law, management, teaching — you name it. Children with SMA tend to be highly intelligent, creative and adaptable individuals who contribute much to the world despite their challenges.
As you’ll learn from these pages, great progress is being made in treating SMA and moving toward a cure. Medical, computer and assistive technologies enable even very young children to compensate for weak muscles. While some forms of SMA still shorten life span, new approaches to ventilation and feeding have expanded what’s possible. And the search for cures is making steady, encouraging progress.
The Muscular Dystrophy Association is the leading sponsor of SMA research. The Association also provides a full program of services for individuals and families coping with SMA, and up-to-date information about research progress. For more on MDA's services for individuals and families affected by SMA, see Help Through Services.
When I was a baby more than half a century ago, the world was much more discouraging for people with disabilities. Today, medical science, technology, health care services and laws such as the Americans With Disabilities Act help us to stretch to reach our full potential.
If I were to share any words of advice, it would be to let your own experience, rather than a medical label, determine what your life’s limitations and potentials are going to be. Build on your personal strengths, determination and faith — or encourage your child to do so. And remember that the extended family of MDA is there to help when needed. You’re not in this alone.
Throughout my life I’ve been called a dreamer, and I’ve found much joy in fulfilling those dreams. May this also be true for you and your family.