I remember when I was diagnosed with ALS. I could not have been more devastated. Then, a few years later, when my diagnosis was corrected to Spinal Bulbar Muscular Atrophy, it was initially a relief. It did not take long, however, for reality to settle in. I had Kennedy’s Disease!
My symptoms appeared in the late 20s. I am now 70. When I look back at those first days after finding out I had KD, I have to laugh. Life did not end with the diagnosis. It began.
After the initial shock, I realized I had control of my thoughts and feelings. The diagnosis was also a wake-up call. I climbed mountains in my 40s, sailed the San Juan Islands, explored the reefs in Hawaii, hiked hundreds of miles of trails in the mountains and lowlands, and became a licensed pilot. I could go on, but all this happened after the symptoms appeared.
The redeeming feature of Kennedy’s Disease is it progresses slowly. I still have good days and bad days, just as I did before KD. I still become frustrated and resentful at times. I still lash out at others when it is meant for me. And, what is interesting about this is that these events would also happen if I did not have KD. It is called ‘LIFE’. I experience, adjust and adapt. But, I continue to live the best life possible.
Life is a journey of discovery. And, as with any person’s life, there are hills and valleys, as well as rivers and deserts, that have to be traversed. There will be good times and not so good times, but each will be its own learning experience. That is why this blog is called, “Living with Kennedy’s Disease… until there is a cure.