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Mary’s Story

My ALS journey started back in February 2021. I had dental work done and after that I started noticing a slur in my speech. At first I laughed it off, I was drunk without drinking! No big deal, I thought, I felt fine. In June of that year, I went to my family doctor and she questioned why I waited so long to come. She quickly tested for a tumor or stroke and ruled those out. She referred me to an MS specialist, who ruled that out. Then on to a neurologist who found the ALS. In September 2021, I was diagnosed with bulbar onset ALS.
We had a rough few weeks, with my poor husband telling friends and family what was going on. I could see the toll it was taking on him and our kids. For me, that is the hardest part of this journey. I started to ask, “why me?” But realized, “why not me?” I am no better than anyone else.

I am very fortunate to have the most wonderful, loving and caring husband there is. Without a doubt, he, my children and family will get me through this as good as anyone can, considering
I often feel as though I may be in denial. I feel like a normal person, but then I open my mouth and a quick reminder is there. Every day my husband and I have an afternoon cocktail and we cheer for “50”. 50 being the longest time someone has lived with this disease. I am determined to keep going and fight for as long as the Lord has a plan for me. I have had a great life, but there is more I want to do!

I am trying to live every day to the fullest, and as normally as possible. In my whole lifetime – I’m 63 – I have NEVER had so much chocolate, French fries and Wendy’s Frosty which definitely isn’t normal by any means. But the bright side is that I can!
Mary and John
With bulbar onset ALS, aside from eating and drinking problems, there are speech problems. It is VERY frustrating. I feel trapped. There is so much I want to say and contribute, but very few words come out that anyone can make out. I feel like I have lost a lot of contact with people. Thank goodness for this thing called a boogie board. It has been my sanity. Kinda like reading glasses, I have one everywhere!

I am very blessed that my progression is on the slower side. I’m still able to go for walks and have no real limitations except for eating and drinking. It does help to not take anything or anyone for granted.

Lastly, I would like to encourage everyone to try and take part in trials. Not everyone qualifies but I was lucky and did. I took part in AMX0035 through Gainesville, Florida from February through November 2022. This was approved by the FDA and is known as Relivrio, which I now take along with Riluzole and Radicava ORS.