The experience of every person with ALS is different; every person with ALS is the same. Every account of the experience of ALS is worth telling; everyone affected by ALS will find some truth in the story. This is the first in a series of occasional articles chronicling one man’s journey with ALS. Sam Goldstein and his wife, Jo-Ann, have graciously agreed to share their experience of living with the disease.
My first trip
I’m a 58-year-old retired truck parts dealer in St. Louis. I was a three- to four-times-a-week racquetball player, part-time classical musician, and full-time husband, father and grandfather.
After over two years of ignoring symptoms and eight months of seeing an internist, neurosurgeon, chiropractor and two neurologists; dozens of blood tests, MRIs, CAT scans, brain scans, muscle and nerve biopsies, and finally an EMG, I heard the words that would change my world, and everyone’s around me: “You’ve got ALS.”
Those words effectively ended my life as I knew it and started me on a new journey filled with fear, anger, anticipation, frustration, hope, dashed hopes and discovery.
The first step
My symptoms began on the racquetball court with not being able to take “that first step” to the ball. I passed this off as an aftereffect of a recent knee replacement surgery. From there other symptoms arose, and I began falling fairly regularly. In late 2004 I spoke with my internist, a longtime friend, who sent me to my first neurologist.
|Cooking is still possible with the aid of some support.
Various doctors were convinced that I had a vitamin B-12 shortage, nerve impingement in my spine, neuropathy, myopathy or perhaps heavy metal poisoning. It was my impression at the time that they had ruled out all of the “bad things” — Parkinson’s, MD, MS, ALS, etc.
After bringing my blood chemistry back in line and monitoring physical therapies followed by deterioration rather than improvement, my latest neurologist ordered muscle and nerve biopsies and an EMG. On Aug. 18, 2005, at approximately 11 a.m., I heard my fate in three letters — ALS.
My first words were, “What did I do to my children? Will they get it? Will my grandchildren? What have I done to my wife? Will she have to care for an invalid the rest of my life?”
We were told it took two doctors to confirm the diagnosis, and we were referred to the MDA/ALS Center at Washington University. It was while doing research on the upcoming visit and the disease itself that Jo-Ann discovered the Muscular Dystrophy Association and Debbie King (a health care service coordinator for MDA in St. Louis).
We learned about MDA’s support groups and weekly online chats as well as the loan closet. MDA also helped us make some wonderful friends.
When I was deepest in my despair, the Association and King became wellsprings of comfort, information, physical help, assistance with needed equipment and general all-around sources of guidance and support. My diagnosis was confirmed with another EMG, and the roller coaster of my future life took off.
Because of lack of coordination in my left foot, followed by weakness in my left leg and arm, I began using a cane daily. I still wasn’t convinced that there was anything seriously wrong with me. I knew I could work it out, just as I had rehabbed from eight injury-induced knee surgeries. The harder I worked, though, the worse it got.
After five months of using a cane, I had to switch to a walker, with an occasional wheelchair ride for long distances. I still have my car keys, but getting to and from the car is becoming harder and harder.
I still regularly play my French horn with professional and semiprofessional groups, but have given up my responsibilities as section leader and soloist as they require a more definite time commitment than I can now make. My conductors have made it clear that it’ll be my decision to stop playing and not theirs.
Dealing with the uncertainty of the disease progression itself has been one of the most frustrating things in my life. After my wife and I told our children and immediate family, there of course arose question after question. I had but few answers, like everybody else. I’ve run the gamut of fear, anger, depression, worry, anticipation, curiosity — and even thankfulness for all the people that I have met through my adversity.
All my life I have seen myself as the provider for and protector of my family and friends. Now I need the tables turned, and I have had to learn how to say, “Please help me,” instead of “What can I do for you?” This may be the hardest adjustment of this whole ongoing process.
Through services available, I’ve received inestimable help from weekly counseling sessions and MDA’s monthly support group meetings. These meetings, along with the unconditional love and support of my wife and children, are helping me get through this nightmare. I am learning to prioritize the most important things in my life, which have boiled down to the time spent with my family — my wife of 35 years, Jo-Ann; daughter, Alison, 30; son, Ben, 28, and his wife, Taryn; grandsons, David, 2, and Aiden, 9 months. I intend to make every moment I spend with my family the most golden of my memories.