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Connecting with Other PALS

Siobhan Rock, Ottawa Canada

Brian Schnurstein

Tim Bargar

Jeff Arison


Jim Eutizzi


Richard Westley Wong

Kyle Ruppe

Jodi O’Donnell-Ames

Chrystie Lose, aka Sam
Deb Quinn

My ALS Story

By Debra McQueen-Quinn
Familial ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig’s Disease)
My message today is about change and never closing the door on hope for this disease.

I was only 13 years old when ALS became a part of my life. It was 1977 and I was staying with my
grandparents. I overheard them talking about Grandma’s sister Ginny having the “creepy crawly
disease.” Back then, ALS was often called that or “consumption of the nerves.” Grandpa asked if this
was the same disease Ginny’s great-grandmother died from years ago. Grandma said Ginny was losing
her ability to swallow, and her skin was crawling as if bugs were underneath it. The “bugs” were
what is now known as fasciculations, or muscle twitches, that are characteristic of ALS. I remember
thinking, “Wow, Great-Aunt Ginny has bugs in her body and I hope I never get that!” But we were not
supposed to listen to adult conversations, so I never asked about the bugs. Ginny passed way three
months later and the door was closed on ALS. (Virginia Black Hosmer-age 47)

Little did we know the door would re-open in 1979. This time my Aunt Bonnie, Grandma’s daughter,
was sick. She was a beautiful, 38-year-old, divorced, single mother. At the time her four children
ranged in age from 11 to 17. We didn’t know how to properly care for her, but my mom and grandma
did the best they could. Bonnie’s primary caregiver became her 13-year-old son. My dad nailed a
wooden chair to a car creeper with rollers on it, and this contraption was her “wheelchair.” The scars
Bonnie’s children endured from caring for their dying mother at such a young age have never healed.
Bonnie passed away within five months of diagnosis. The door was closing on ALS again, but not
before I asked a few questions. Grandma said there was this “muscle disease” that seemed to be in
her family and causes muscles to crawl, and that there was nothing the doctors could do. She showed
me the two pages of information the doctor had given her, and that was all she knew about this thing
called ALS. Back then, there wasn’t any help like ALSA or a chapter to turn to for ALS patients and
their families. ALSA wasn’t formed until 1985. Change was coming.
(Bonnie McQueen Haberly-age 38)

In December 1989, my Dad, Grandma’s son, took a terrible fall down the icy front steps of his house.
He believed this to be the onset of his ALS symptoms. He lost the ability to hunt and fish, which for
him was a way of life. And in 1991, I lost my Dad to ALS. He lived just 11 months from diagnosis.
My mom developed creative methods to make it easier to care for my Dad, as this was her third time
facing ALS as a caregiver. But we still didn’t know how to get help for ALS families. (William “Bill”
McQueen-age 51)

Then in 1996, Grandma died of bulbar ALS, where she lost her speaking and swallowing abilities
before limb function, and also suffered from dementia sometimes associated with the disease(FTD).

In her last few months, she came to my home and I cared for her with the help of my husband and
mom. I learned so much from Grandma throughout my life and she was a very special lady. She
always felt this disease was her fault. Upon researching our genealogy, I traced the disease through
13 generations of Grandma’s family to the early 1600s, discovering more than 20 additional family
members who suffered from what we now call ALS. Once again with Grandma’s illness, we held
questions but no answers. And living in a very rural area, the doctors never offered ALSA for help. We
cared for Grandma on our own, for my mom the fourth time, and then closed the door again. Never
in our wildest dreams did we think ALS would keep reappearing in our lives. I remember thinking that
not much had changed from 1977 to 1996, and wondering how much one family should suffer.
(Dora Black McQueen-age 79)

The hardest part is always to tell the story of my little sister Rhonda. She was 38 and married with
children ages 8 and 11 when ALS took her life. Mom was a pro by now and she became Rhonda’s 24/
7 caregiver for seven months. Rhonda had a vibrant personality and was always the life of the party.
After two misdiagnoses, Rhonda thought she’d be alright; after all she had gone to a certified ALS
clinic. She thought they had to be right that her symptoms weren’t ALS. But upon a third opinion, she
was told it was ALS and given about six months to live. She lost her fight five short months later in
January 2007. She suffered deeply and without the proper equipment. During her last four months,
she was never able to leave her house as they didn’t have a wheelchair van or a way to get over the
steps outside. Rhonda did not leave us without making a change. She wanted DNA testing done to see
if our family carried the SOD1 gene. This gave us the marker (SOD1 A4V) for researchers to test other
family members and to open the door for hope.
(Rhonda McQueen Burrous-age 38)

I began this fight in Oct. 2009. It took me three months to tell my mom she would lose another
child to ALS. I have two wonderful co-workers who helped me fling the door wide open and search
for more information. Little did we know three women would embark upon a journey that would
find friendship, love and lots of encouragement within an ALS community. We became involved
and wanted to make a change. I’ve brought awareness into our community, raising $$ through our
Quinner’s Quickfeet ALS team. I will not settle to keep the door closed and be quiet about this disease.
It is hard, but I am the voice for my children, nieces, nephews and cousins, all whom have a 50
percent chance of inheriting ALS. For them, for everyone, we need to seek change as each door we
walk through may lead us to a cure.
(Debra McQueen Quinn-Living with Familial ALS)

The door is open wider than it ever has been to talk about this beast called ALS. We have clinical
trials, health care providers, respite care, and the National ALS Advocacy Day and Public Policy
Conference in Washington, D.C. I encourage you to join us upon the wings of a swallow, may we fly
into the changes that are needed to stop ALS.

Thank you for reading my ALS story.

Hearts for ALS NY was created to increase awareness and understanding of ALS through volunteer
programs and act as a resource for patients and caregivers to improve the quality of life. EVERY dollar
raised will remain here in the Southern Tier of NY to help patients LIVE with ALS, including myself.
Hearts for ALS NY is a non-profit 501 c (3) foundation. Donations can be made to “Hearts for ALS NY”,
PO Box 272, Avon, NY 14414 or online at

Kendall Saltzman

Chrystie, aka Sam

Louis DiGiacomo



Carla Ayres Musa and Karl, Belize

Megan Spector
Hi, Wanted to thank you again for sending Steve Gleason’s signed jersey. It brought it TONS of money. Our auction raised $10,406.00 for the ALS Association and our big Benefit Concert is coming up on Monday!! I thought you would like to see one of the MANY articles written about Megan (my daughter) and this Benefit. (see below) Perhaps you could show this to Steve. I think he would like to see it. Here’s to finding a cure very soon. Sheri

From the San Diego Union Tribune:

Michael Lytton (@mglytton, #ALSbites) (#ALSbites)

Richard and Jean Blume

Randy Pipkin


Steve Marino

Bill Murphy

Tracy Bigelow

Cat Todd and sawyer Quinn

Randy Floyd

Larry Engle

Todd Quinn

Kristen D

Frank Smith

Coach Jeff Fogel






Leave a Comment
  1. Kathy Fritchie. R N / Feb 3 2013 8:58 pm

    I am a caregiver to ALS patient Mark Manchester. I have grown and learned so much by my association with the wonderful pals friends and Team Gleason. Thank you God for such an opportunity

  2. Jeanne Norris / Feb 26 2013 4:28 am

    my Nephew Jeremy age 36 was just diagnosed with ALS Just after the new Year 2013. He is married with 2 kids. He was given 3 years at this time. What can I do to best help him out?? I don’t have a lot of money, but I would like to help make him feel as good as he can. I feel so bad for him, but he does not want people fussing over him.. any ideas from anyone who knows what to do? Thanks for any help! Jeanne Norris, Aunt

    • Allyson Kelley / Apr 23 2013 5:06 pm

      Hello Jeanne- my name is Allyson Kelley and my husband Chris was diagnosed at age 30 when my children were 4 and 18 months. Unfortunately, he lost his battle 6 years later. I can tell you, from experience, that it is your time, support, and love, much more than money, that this family will need. I was so blessed to have a strong network of family and friends around my family. If you are able to help with the children so that Jeremy and his wife can have much-needed time together, or help with grocery shopping, cooking meals, or housework, I’m sure they would appreciate it! Chris also loved visiting with his friends and family, which would allow me at times to spend time with the children at their activities, sports, etc…I will keep Jeremy and your family in my prayers. Hang in there and stay positive!

  3. Joyce Hinyup / Apr 19 2013 3:56 pm

    Thanks for posting your story….my husband was diagnosed in January 2012….taking it one day at a time and trying to prepare for the future….so difficult….positive attitude and accepting that this is Gods plan for our lives…..much love to you and your family….

  4. Cat Quinn / May 2 2013 2:58 am

    Todd Quinn, 37, father to sawyer 2 yrs old and husband to Catherine 33.
    I met my husband Todd on a river in Alaska 7 years ago. We both knew that day our adventures would be together from that point on. We married four yrs later, our beautiful son was born soon after that, and I became a nurse. We are outdoor enthusiasts…..have a love for nature and travel. We live in Vermont and our care team is at mass gen. tells Todd’s story. I am finding life a struggle on so many levels but the largest….I would like to connect with a family close to our age. What a help this would be.
    Be well and thanks for reading.
    Cat Quinn

  5. Stephanie Wagner / Jun 20 2014 9:00 pm

    My father, Ben Head 72yrs, was diagnosed with ALS in 2010 and the journey has been filled with lots of laughter, tears, and love. My family feels very fortunate that we’ve had a lifetime of memories, but still yearns for even more. When asked to describe ALS, I always say it’s not just a fight for one it is a fight for us all. People are robbed of their quality of life piece by piece, but we will not give up the fight. My sister, who is a RN, is my dad’s full time caregiver and she does an amazing job. My dad now lives on a vent and requires 24hr care. I love hearing all these PALS roar that awareness and change are coming. May we all come together and find some answers.

  6. Rebecca Carmody / Aug 20 2014 4:27 am

    Hello, I myself do not have ALS, but ive been seeing this ice bucket challenge all over my facebook and i seen a link to the website i posted above and read her story about her husband. As i have just finished leavibg her a comment like this one telling her all i know is about TeamGleason by being a N.O. Saints fan. And gave her the teamgleason website. As now i am doing on TeamGleason. I pray for Steve Gleason and everyone and every family that suffers from the heartache of watching a loved one suffer. God Bless you all. ❤

  7. Jim & Fern Boylen / Mar 15 2018 1:34 am

    My deaughter was diagnosed with ALS 6 months ago, she’s 46 years old with two sons and 4 grandchildren. She went from driving her car to now having lost all movement of her body, she can only speak a few words so we are thankful for the borrowed Tobii from the ALS foundation. We are losing my daughter really fast, our devastation is beyond words. ALS is a horrible disease, having my daughter have this was beyond my imagination. Her days have gotten worse, she cries a lot. Yesterday she was so upset that she could not move her arms that she cried. She’s said “ I quit! “‘, that was extremely hard to hear her say! I really don’t think she will live much longer! Our Melissa has been sick a lot since she was very small. On Dec 20 1992 she was 8 months pregnant with her second son she had what was called an AVM ( a bleed out of the brain ). She had one % chance of living at first, it was a horrible time but she recovered as did her unborn son. Now after many surgeries and battles with seizures we are now losing her to ALS, I ask God why it’s just not fair. Prayers to Steve Gleason his family and the many who suffer with this horrible disease, God Bless you all! Fern Boylen

    • patty / Apr 9 2018 3:00 pm

      I too have ALS. I was diagnosed one year ago. My progression is similar to your daughters as is my mood on some days. If she would like to talk with someone who gets it, give her my email info. God bless.

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