Had I not gotten ALS, I wouldn't have had the opportunity to meet so many new and interesting people, nor had the opportunity to get to know the heart of the people already in my life.
People with ALS that impacted me but lost their battle.
Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service.
I got to know people from all over the world thanks to the website www.patientslikeme.com.
It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a downside, without that cure, we lose our precious friends. Lots of them!! I'll name a few that touched me and that I grieve: Bob Anderson, Peggy Freed, Patricia Mistretta Sciarrino...
This past week I lost a PALS, a person here at the hospice facility, a person whom I related to but was unable to communicate with directly due to our mutual communication challenges. Peter Roane from Maine. A man who built his own homes, built and raced cars, and jumped from perfectly good airplanes. I know precious little about this adorable man but I did see intelligence and a wicked sense of humor. He hugged with his legs and spoke volumes with his eyes and smile. I liked him, a lot. When I was more mobile, I drove down the hall to his room to watch NASCAR when I remembered (once) and to watch Game of Thrones (once). I hesitated to overstay my welcome and become a pest. Then, I could no longer pilot my own wheelchair. My hope is that he knew the extent of my esteem for him. I miss him so much!
People with ALS that impacted me but lost their battle.
Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service.
I got to know people from all over the world thanks to the website www.patientslikeme.com.
It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a downside, without that cure, we lose our precious friends. Lots of them!! I'll name a few that touched me and that I grieve: Bob Anderson, Peggy Freed, Patricia Mistretta Sciarrino...
This past week I lost a PALS, a person here at the hospice facility, a person whom I related to but was unable to communicate with directly due to our mutual communication challenges. Peter Roane from Maine. A man who built his own homes, built and raced cars, and jumped from perfectly good airplanes. I know precious little about this adorable man but I did see intelligence and a wicked sense of humor. He hugged with his legs and spoke volumes with his eyes and smile. I liked him, a lot. When I was more mobile, I drove down the hall to his room to watch NASCAR when I remembered (once) and to watch Game of Thrones (once). I hesitated to overstay my welcome and become a pest. Then, I could no longer pilot my own wheelchair. My hope is that he knew the extent of my esteem for him. I miss him so much!
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