One year ago

I promised myself I would write this at some point. I figure the year (almost 9-22-10) anniversary of diagnosis was appropriate. My family's journey with ALS started about Jan of 2010. ALS has already started but that was when the first symptoms appeared. Small things at first like you all know. Trouble with this, trouble with that. A lot was going on so Mom wanted to wait about going to a doctor. In 2010 the great state of Tennessee decided to send my parents a letter. In this letter they said they were taking my parents house of 32 years and they had until Oct to get out. Now why would they do that? To build a damn interstate. So with that in mind a lot of early symptoms were attributed to stress. After frantically calling contractors, getting loans, picking out a plan, etc the new house was being built. But things kept happening to Mom. Buttons were hard, zippers were hard. She could no longer snap green beans, shell peas (my family has always had a garden.) Things just didn't make sense. Why was this happening? First group of doctors didn't know, referred to a young neuro. He said ALS. We didn't believe that was possible. She went to more doctors. More MRIs, EMGs, blood work out the ass. Everything came back normal. So we sought out a second opinion at Vanderbilt. I will never forget that day. That was the first neuro visit that Mom had that I went to. September 22nd 2010. My heart sank lower then it ever had that day. ALS. I didn't eat for about 2 days after that. What the hell can we do? What is going to happen? I had already joined this forum at that time and had a pretty damn good idea about the future. But why? Why my Mom? Why is there no treatment? Why can't they do anything for this horrible disease? I still wish I knew the answers to those questions. After a few weeks a woman that I work with contacted my best friend and let me know her Mom had had ALS. Donna is now my shining light. When I have trouble she helps guide me, she puts things in prospective when I can't. She pushes me when I need it and pulls me even harder when I can't. Former and current CALS are a great help when hope is lost. You all here are a second family to me as well now. I can't be away from this site for a day. I'm living this disease with all of you. On days when I can't cope something here helps. My heart breaks each time a post is made in the 'In Memory Of' section. I dream of a day when this forum, ALS Association, and MDA are history. Until then we have each other. So a year later. My parents are in their new house. The old house was bought and moved for a new family. Mom can still walk and talk. Her left hand does not work at all, right hand is going, and she is beginning to have some swallowing issues. The good news is she is in the Dex trial. Some good things have happened since starting, but some bad things as well. At least we are trying something. 'Take everything a day at a time and enjoy what you have.' Donna said that to me the first time we meet. I won't forget it, but it is hard to do. Living day to do now has become easier but my thoughts still stray to the future more than they should. Tomorrow marks a year from diagnosis. I don't count the first jack ass neuro. He told Mom she would be dead in 2 years. He can kiss my ass over that. A year ago tomorrow our lives changed. We have been so much closer, everyone has stepped up and done what needed to be done. I knew we would and I didn't need ALS to prove that. Year 1 is almost over. I hope there are lots more for mom and everyone here. All my friends in life and on this site give me strength to make this journey. For all of you I am grateful. Todd