The ALS Association has served more than 20,000 people with ALS and their families this year, and that number continues to grow. Many of these families want to help spread awareness of the disease and share their stories with the community – share the many faces of people living with ALS, the caregivers, friends, and family members fighting every day. Although there may be some commonalities at times, no two stories are ever the same. They are, however, all inspiring stories of love, support, perseverance, and hope.
We recently spoke with Kathleen Poirier – wife, mother, and a person living with ALS. Kathleen and her family live in Florida and have been very involved with The ALS Association Florida Chapter. Here is what Kathleen had to say about her family’s journey with ALS in her own words.
Tell us a little about yourself and your family.
I am a 54-year-old woman, blessed with a loving husband Brian of 32 years and three amazing sons, Zak - 27, and twins Nick and Jake - 26. Born and raised in Connecticut, I’ve lived in Southwest Florida for the past eight years. Up until my diagnosis, I had a thriving interior decorating business. I’ve always been passionate about arts, creativity, and bringing beauty to the most ordinary things. So, when this disease struck, I wanted to keep that artistic ability alive.
When were you diagnosed with ALS?
I began experiencing symptoms in May of 2018, which started with subtle weakness in my hands. By late summer, fasciculations occurred and I went to see a neurologist. After two EMGs, ALS entered the doctor’s vocabulary, and I was officially confirmed in January of 2019.
How have friends and family supported you through this journey?
I don’t think I realized how loved I truly am. My family and friends have been the wind beneath my wings, showering me with unprecedented love, support, and constant words of encouragement along the way. I cannot express how much they all mean to me, because it clearly feels like I mean the world to them.
What methods have you and your family used to stay positive?
I am an optimistic person by nature, and I’d like to credit my parents for that. I was raised to be a fighter, a tough, strong woman and I don’t take defeat easily. When faced with a problem, I do my best to try and find a solution rather than sulk in pity. So aside from a positive attitude, I’ve done acupuncture, meditation, prayer, supplemental research, detox research, and of course, sharing my passion for beautifying this world through my artwork. My inspirational designs can be found at gritngracestudio.etsy.com.
What are some ways COVID-19 has affected you and your family, and living your life with a person with ALS?
I was part of the NurOwn study out of the University of Massachusetts. I was unable to complete my final two visits (in person) because COVID-19 forced us to perform these appointments virtually. However, in one way it has been a blessing. One of our twin sons, Nick, started working from home in March when his office shut down. As a result, he served to be a tremendous help to us during that time and continues to be today.
What do you wish people would understand about this disease?
I wish people would understand that this doesn’t have to be a death sentence. There are many wonderful organizations out there with people who are willing to help. You just have to do your research and find what’s best for you. I also want people to know that this does not affect one person. This disease takes its toll on family and friends alike. Interestingly, we are living in a time when the world is focused on fighting a virus that, while important, has only been on the scene for less than year. Meanwhile, ALS has been claiming lives for decades. The medical community at large seems to turn a blind eye, and we need to find a cure.
What has been your experience with The ALS Association?
My experience with The ALS Association has been helpful, as they are a valuable support system and resource of information. Through equipment donations, monthly meetings and beyond, their wealth of knowledge has proven to be very useful for me and my family.
What would you tell someone who is thinking about donating to or volunteering with The ALS Association?
ALS tends to rob the lives of those who are very productive in society. Think of Lou Gehrig, Stephen Hawking, and others. What could we have accomplished should these historical icons lived their fullest lives? We need your help to give others a chance to make this world a better place.
What is your personal mantra or guiding principle? Or is there a quote, song lyric, etc. that really speaks to you?
My mantra is living life with grit and grace. I focus my whole battle against this disease around that phrase. No matter what the future holds for me, I want the world to know that I have grit in my will to fight, but grace because I will do so with dignity. If you want to learn more, you can follow my blog at www.gritandgracewithals.wordpress.com.
Special thanks to Kathleen Poirier for sharing her personal and heartfelt story of her journey with ALS. If you would like to share the story of your experience with ALS, please contact us at [email protected].