• Making a difference

    Posted by Amanda on September 13, 2019 at 8:39 pm

    Each of us are brought to the forum for different reasons. Some are pALS. caregivers, medical professionals and others have a loved one or friend diagnosed with ALS. Regardless of why, it is evident that ALS has  impacted our lives in some way.

    I was brought to the forum  initially because I was offered an opportunity to help bring attention to the ALS cause, and to support pALS and caregivers. I felt that I might be able to make a difference in some way as a forum moderator. Since starting last Spring, every day I look for ways to make a difference, and I hope some days I succeed.

    When I first started volunteering for the SOD1 research in Miami, I found each visit terrifying. I knew that after those two long days of testing I could go home with an ALS diagnoses. Every time I tripped, stumbled or bumped into a wall (and that is often because I am clumsy) the thought that this is the beginning of ALS was a tremendous weight on my shoulders. I don’t want to be a burden to my sister. We have already taken care of my father and step-mother when they were terminally illl and I don’t  want her to have to take care of me. My friends who didn’t know the significant impact that ALS has had on my family and on my life just couldn’t understand my fears or concerns. They often think I am over reacting or being dramatic. Honestly, there are times I feel that way too.

    About three years ago while I was at the University of Miami for my annual testing I had a conversation with the doctor. He told me that although I had symptoms, there was no indication that they were related to ALS. “Whew” I thought. As the conversation went on, he also told me that with my significant family history  and having the genetic mutation, it wasn’t a matter of “if” but more of “when.”  Of course, any number of things could happen to me or in my life before that happens.

    Oddly enough his comment put things into perspective and motivated me to learn more and do more. I know that there is a significant chance I will some day have ALS. That’s not being negative or sabbatoging myself, that is just looking at the facts and being realistic. It’s not all bad if you consider that I feel like I was given a unique opportunity to help find a cure so hopefully my younger cousins and thier families (and perhaps  your family too) may never have to worry about having ALS. I hate having the genetic mutation, but I am willing to volunteer for any study that may make advances in ALS  treatment or find a cure and ultimately help many of our forum members!  The researchers could not conduct their studies if people didn’t volunteer. donate, particpate in the ALS fundraisers and so on.

    The study I participate in is now in clinical trials for people that have ALS related to the SOD1 and C9 mutations.  There is also talk of doing clinical trials for people like me with the SOD1 (and C9) mutation prior to the onset of ALS in hopes of preventing the onset. I don’t know if a cure is just around the corner. or if it is further off in  the distance. What I do know is that every time I read a profile of a new member, especially a pALS member, I want to do more.  Every time I read a post or message  from one of our forum members, I want to do more.  Our ALS forum members inspire me every day. The ALS News Today team inspires me every day!

    There is so much more to each of our stories.

    What inspires you? Who inspires you? What is your story?

    Amanda replied 4 years, 8 months ago 1 Member · 0 Replies
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