Hi Family and Friends Welcome to our CaringBridge website. I know many of you are aware of what's happening but it was suggested to me that I may want to start a caring bridge site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As most of you know I have been diagnosed with ALS but for those of you who don't know here is my story. My diagnosis came on 3/14/17. But I believe my journey actually started 27 years ago. I was having a conversation with my mother and she told me she was having a problem with her leg. It seemed to just give out for no reason. At that time although ALS was a known disease it was not diagnosed in ways it is today. She saw many different doctors with many different ideas as to her issue. Finally she was put in touch with a Dr who gave us the news. It was ALS and she passed within a year of her diagnosis at the age of 55. At that time we were told that ALS skips a generation so we all became very concerned for our children. Well, this is not the case. Fast forward 16 years and it strikes again. My sister began to have issues in her shoulder and arm and yes she too had ALS . She passed within a year of diagnosis at the age of 42. My journey continues. It was the fall of 2015 when my son began to have issues with his leg and yes , you're right, the beginning of many visits to many doctors until he was diagnosed in 7/16 and passed in less than a year at the age of 38. It was during my son's struggle that I began to show signs. I went to my Dr. with issues with my speech. Her first thought since my son was ill was that I might be under excess stress and this was how it was presenting itself. I was happy to go with that since my limbs didn't seem to be affected. Then my right arm started to weaken and my speech got worse and I began to have trouble swallowing. I returned to my Dr. and she knew right away and referred me to a specialist. He did a couple of very routine tests and before I left his office I had the diagnosis. My disease went by way of bulbar onset. This onset was not familiar to me. I am learning quickly. At this time I am unable to swallow at all so I am not consuming food or drink. My speech is gone completely and my left arm is beginning to weaken. I received results from a blood test that confirmed that of the two strains of this disease we have the familia strain and obviously it is very strong. We all know how this journey ends but I am very blessed to have family and friends that have been very supportive and caring. For as long as I am able I will continue to post occasional updates.