My personal journey began on March 14, 2019. I had just returned home from a lovely trip to New Orleans for Mardi Gras. I had an appointment booked with my neurologist the next day. I was still in holiday mode and on top of the world. As we did my tests I was excited to shares stories about my vacation and a new granddaughter. Life was good.

Then I received the news... you have ALS. At first, I was numb then I realized this was my new reality. As I shared my news with family and friends I felt a strong feeling of love and support. "This is now going to knock me down without a fight," I thought. I am going to live life to the fullest every day.

At first, I was having slurred speech and losing the use of my right hand. In 2021, 2 1/2 years later, I have lost my speech and have weakened arms and legs. My determination keeps me going. I was fortunate to be selected 1 year ago to participate in a promising clinical study that reduces progression by up to 33%. I believe I can beat the odds of the 2 to 5-year life expectancy.

I am so blessed to have a wonderful family. My husband of 34 years is by my side, his love and support are unbelievable, the kind of love every girl dreams of. My two grown sons and daughter-in-laws are in constant contact with me or see me every day and always followed by "I love you". They always make me laugh so hard I cry. Then there are my 2 granddaughters. My favorite words are "I want to go to Gamma's house", they are my everything.

My friends are always there for me, texting to check up on me or just to send me their love. Sooo... that is why my life is good even as I battle this horrible disease. As most of you know there is no cure or ALS at this time as we continue to raise awareness and help fundraise research for this very underfunded disease, I hope one day we find the cure we so desperately need.

2022 UPDATE:

I have been blessed to add 1 year to my personal journey. So much has changed…I have lost speech but have gained a communication device. I can no longer walk but have gained a wheelchair and a van to go wherever I want. I have lost the use of my hands but have gained the helping hands of my loving husband, family and friends. It’s not what we lose in life but what we can do to make our lives better!

My Motto is and always will be to stay strong, stay positive and never ever take anything for granted. We are all blessed.