Amy Janisse, diagnosed in October of 2013 at age 29.
Died January 12, 2018.
I woke up one day in November 2012 and I was tongue tied. I was slurring my words, and couldn’t figure out why. Before I knew it, it was July and I was dropping drinks while working as a bartender. The strength in my right hand was off. I started having fasciculations in my legs and made an appointment with the neurologist. On October 10, 2013 they asked me if I had ever heard of ALS. As I sat there with my head spinning, as they were telling me the grim statistics, I could only think of my family. I grew up without a mother and I couldn’t let that happen to my 6-year-old son.
Early on after my diagnosis, I decided I was going to hold on to hope. I wake up hoping every day that my body will stop the disease progression or that the medical world will come up with some miracle cure. There is a silver lining to every curveball life throws at us. I am happier now than I’ve ever been. I have my husband Sean and son Tyler who take care of me daily, my extended family and in-laws who help in any way possible, and a whole community who has rallied behind me. I truly am blessed.
You now have an internet family as well. My daughter, Beth, is just turning 27 and was diagnosed at age 25. She was living on her own in DC but is now home with us in NJ. We will all win this fight together. I hope you have been introduced to the folks at ALS-TDI. If not you need to get with them. I am happy to make an intro if you need.
Thank you so much for the kind words and I’m so sorry about your daughter’s diagnosis. I am familiar with ALS TDI and just returned from participating in the PMP there a few weeks ago. Since my diagnosis, I have met so many wonderful people from all over the country who are affected by this beast of a disease. Please feel free to friend me on Facebook if you’re on there, and thank you again.
Great to hear more of your story. Sorry we didn’t have much time last time you were in the lab but it was great to chat with you and your family! Stay strong!