When my sons were diagnosed with Spinal Muscular Atrophy back in 1981 I had to pull the name of the disease out of the doctor over the phone. Chris was born in 1978 and was very sick when he was 7 weeks old which left him very weak. He regained his strength to a point and at about 8 months old he stopped again. In the meantime I got pregnant for his brother, we dealt with Chris like he was paralyzed, the drs couldn’t explain what was wrong. He started getting physical therapy. Danny was born, developed normally, no illnesses and at 8 months old stopped developing strength in his legs. Time for tests. They ran tests on both boys and we saw a neuromuscular specialist. That is the dr that I got on the phone to try and get the test results. We had been playing phone tag for a week and I was frustrated. He wanted to talk to both me and their dad at the same time, and I said no, just tell me what they have. Longer story short… he told me. (I later found out that when he explained the condition to another mother in his office one day that she physically attacked him. I understand that, but I was on the phone and wasn’t about to drive across the city to go punch him.)
I got off the phone with him an hour before a nearby library was closing so I headed out quickly and went through the card catalog (remember those?) The librarian wanted to help, she stayed open a little late while I did basic research. She found reference in a book and she gasped before she showed it to me. It said most children with the disease died before reaching age 1. I reassured her that one of my children was already 3. She sighed and found some more stuff, we copied it and she said I should search medical journals. I had access to a local University and started searching there.
Since I was computer literate, I did also did a library search online. At the time there was no World Wide Web, the internet was a black screen with green letters on it. I had found a medical library online that was very expensive to use during the day, but was much less expensive in the off hours. I printed out pages of results and called the main library that could then find the articles that were referenced and copy the pages of the physical journals. The online information was just abstracts, full text was like $300 an hour. The service I was using was KnowledgeBase and it was $20 an hour if I remember correctly.
By the next doctor’s appointment (this was a noted specialist in neuromuscular disease) I had copies of research that even he hadn’t seen. Flabergasted, he asked where I got this information and then asked if he could copy my research, and I handed him over 100 pages of medical journal articles and printouts of more abstracts. I still have a yellowed manila envelope of all those copies.
I never treated my sons like they were going to die, or pampered them. We took what we learned, we worked with an angel of a physical therapist, and we gave them the best life we could, because we didn’t just take the diagnosis and listen to the doctors and therapists and other parents – the ones that just blindly follow the “this is all we can do” philosophy. My sons never walked unaided, were never able to bear weight, but they were healthier than their peers because we did things out of the norm.
Danny didn’t die from his disease, he died in a car accident. Chris outlived most of his peers and had (a phrase I actually intensely dislike, but it’s all we have to describe it) – he had a great quality of life.