In Their Own Words . . .
Stories from PALS, Families and Friends

Helene Bowler
Beverly Cotrone
Tom Fraehmke
Laura Grzeskowiak
Christina Raia
Idaliz Romero
Stan Silver
Eileen Witkowski
Karen Chappell
Jean Haley
Diane Lanahan

Helene Bowler
mother of PALS, Sean Bowler (1975 - 2005)

Pictured: Sean Bowler with his girlfriend, Adena

*excerpt from Helene Bowler's speech given at National ALS Advocacy Day in Washington, DC in May 2006

I am honored to be here today to speak to you on behalf of the ALS Association and to share my own personal experience with this aggressive and debilitating disease, more commonly known as "Lou Gehrig's disease." I would like to begin by humbly apologizing for my lack of credentials - I am not an accomplished public speaker, not a member of the medical profession, not a brilliant scientific researcher. But, I am the mother of a heroic young man named Sean Bowler who lost his battle with ALS about a year and a half ago at the age of 29. Speaking straight from my heart, I can tell you what it was like to watch someone you love become trapped inside a body that totally betrayed him. I can also honestly tell you that the ALS Association was our beacon of hope throughout Sean's journey.

Our introduction to ALS began the day Sean was diagnosed. It was August 24, 2001, just a few weeks before his 26th birthday. I remember hearing the neurologist tell Sean that he had a fatal disease known as ALS. As I struggled to wrap my head around the devastating news that my son was dying, I vaguely remember catching key phrases like . . . "progressive neurological disease, paralysis, respiratory failure, two to five years to live . . . no cure, no real treatment . . . , here are the names of some clinics." I sat there numbly. I was afraid to even turn my head to look at Sean's face. As a parent, I was used to offering my own life experiences to help my sons solve their problems, but I had nothing to share this time because I didn't know how it felt to be told that you had a terminal illness. Sean was on a journey that I had never taken.

As always, I turned to God and trusted him to help us. My prayers were answered by an outpouring of love and support from family members, friends, and the compassionate and competent staff of the ALSA. Everyone we knew began praying for a miracle and we got one, although not the one we expected. The miracle was Sean's courageous response to his diagnosis. In his own laconic way he summed up his strategy, "If this is what life give you, you deal with it." There was no self pity, not blaming, and no quitting. Life would go forward as usual. It shouldn"t have surprised me. Sean was always quiet and unassuming, but I knew he had that deep spiritual, emotional and physical strength that one needed to take on something as insidious as ALS. He made it easier for us because he handled everything so well.

At the time of his diagnosis, Sean was a teacher, coach and dorm parent at the Salisbury School in Connecticut. It was a perfect job for him. He had an amazing girlfriend named Adena, who was the love of his life. Her response to Sean illness was our second miracle. She made it clear that she was staying at Sean's side, not just as a supportive girlfriend, but as his primary caregiver. And she did. She never became overwhelmed by his steady debilitation, never looked upon him as a burden. She was always upbeat and positive, maintaining an incredibly normal life for both of them. She acted as if wheel chairs, feeding tubes, bi-paps and suction machines were a typical part of every relationship. Even when Sean could no longer speak, she knew exactly what he wanted just by looking in his eyes. My son Michael said it was like when Lassie barked three times and they knew that Timmy was in the well. Their unconditional love for one another was like nothing I had ever seen.

Within one year's time Sean went from being a strong, muscular, athletic young man, to being totally dependent on all of us for his most basic human needs. He needed care 24 hours a day. He could no longer walk, talk, swallow, or eat. His hands and arms hung uselessly at his side and he had trouble holding his head up. He needed a wheel chair for mobility, a g-tube for eating, and a bi-pap machine at night to help him breathe. He had a cough assist to clear out his throat and a suction machine to control excess saliva. He had to wear braces on his arms, his legs, and his neck. At night we attached a doorbell to his arm brace. When he needed help, he had to exert a little pressure against his hip to make it ring. Sometimes he couldn't make it work. I couldn't imagine what it felt like to lie in bed with all that gear on, unable to move, unable to call out for help when you felt like you were choking. It had to be frightening, but Sean never complained. By the time Sean left us all he could still do was wink and smile.

Besides caring for Sean, Adena was a law student at Yale. During her time away at class, Sean was cared for by a home health aide named Luis Quintana, who was sent from God. He spoke no English and had never been an aide, but he was a natural. He was so devoted to Sean. He lifted, transferred, and stretched him better than anyone. He was obsessed with keeping Sean well groomed. At shower time, he scrubbed him like he was a pick-up truck, while singing songs for him in Spanish. They watched Colombo reruns, the Spanish stations and an occasional girly movie. They shared an amazing amount of information, considering Sean couldn't speak and even if he could, Luis couldn't understand him. One night Luis' wife called Sean's house to thank Sean for the advice he had given Luis about home equity loans. Adena and I exchanged puzzled looks. Sean just grinned and winked an affirmative when we asked if this was true. They had a language all their own.

Besides Sean's incredible courage and patient endurance, it was his gift of humility that allowed others to be part of his debilitating journey with ALS. He loved being with people and so he was willing to make himself vulnerable and risk the awkward and embarrassing moments. He used his sense of humor and ready smile to put people at ease. The life lessons that he taught his students went far beyond classroom walls. He drew kindness and compassion from people like a magnet. Even his big burly lacrosse players showed their sensitivity to his needs. Once in early March when Sean had traveled with his team to Jersey for an away game, they ran into some nasty weather. The cold was compounded by rain and wind, the kind of day where the chill gets into your bones and in Sean's case, his muscles too. Half way through the game, Sean realized that he was literally frozen stiff. The cold had affected his muscles to the point where he couldn't move his arms, walk or talk in anything more than a whisper. When his players ran over to the bench for their half time break, they realized he was in trouble and immediately formed a tight circle around him that cut off the wind and the rain and they stayed there until he had thawed out enough to hobble to the bus for shelter.

Sean's three brothers and his buddies from high school, college and the Salisbury School made sure he wasn't stuck with a lot of down time. They rather enjoyed trying out all the special features on his wheel chair and they would take turns riding around the apartment doing spins and challenging each other with taunts of "top that." They especially loved the elevator feature that allowed Sean to reach the height of the bar when they took him out to the pubs! They took him to lacrosse games, Notre Dame football games, parties, and a lot of places I'm sure I never heard about. They emailed and called and sent CD's and DVD's. They came to play video games and board games and watch movies and share stories. They were such a gift to Sean.

During Sean's last year, my husband and I retired and became more involved in his care so Adena could begin working as an attorney. That year we learned a lot from Sean about how to live and how to die. We also learned that our care giving skills left a lot to be desired. I was a nightmare driving Sean in the wheelchair - 360's, whiplash stops and starts, frequent off ramp attempts trying to get into the van - speaking of the van, I wasn't so great at driving that either! Sometimes I could see from the look in Sean's eyes that he was thinking, "If the ALS doesn't get me, she will." But he was always patient, always smiling, never complaining. When Adena was around I was relegated to the jobs where I could excel-emptying the urinal, feeding the dog and picking up prescriptions from CVS. My husband and I finally figured out that our real job was just to be present to Sean, to sit with him, watch his favorite TV shows with him - Mike and the Mad Dog, Around the Horn and Pardon the Interruption - I knew everything in the world of sports that year. We spoiled him any way we could and always tried to keep that smile on his face.

When Sean's teaching career was drawing to a close, the headmaster asked him to speak at their graduation ceremony. I remember watching him courageously climb the steps to the podium relying on his cane for balance. His volume was on the low side because he didn't have the breath and his speech was slurring like someone who had a stroke, but he spoke directly to those boys who loved him and they understood every word. Their mischievous laughter at his inside jokes revealed the relationship they shared. His speech revolved around a line from a Grateful Dead song called "Scarlet Begonias", "Once in a while you get shown the light in the strangest of places if you look at it right." Sean used some great examples from his life that the boys could relate to and then urged them to keep their minds and hearts open to the light as they journeyed forward through this next stage of life. His message really struck home with me. Since Sean's diagnosis, I have seen the light in the most unexpected people, places and events. For me, "the light" is the presence of God. It seems to be able to slip right through the tangles of deepest fears and sadness and shine that ray of hope into our darkness.

On Super Bowl Sunday, February 6, 2005 our family all gathered at Sean and Adena's house to watch the game. My son Brendan, Sean's older brother, had just flown in from Colorado to visit Sean. Before the game the betting began and I started to tease Sean. My nephew had just sent me a $5,000 check to use for anything Sean might need. I hadn't cashed it yet so I waved it around and challenged Sean, Who do you have today? Let's put $5,000 big ones on this game. The thought of his mother gambling amused him and he gave me a big smile. We used the wink system to determine that he would take the Philly Eagles because Adena was from Philly. I went with the Patriots. We all positioned ourselves around his wheelchair as the game began. Amidst the cheering and bantering, I has holding up his head, one of his brother's was stretching his legs, and another his hands and fingers. Suddenly just before half time he just stopped breathing, quietly, peacefully. We called 911 and the EMTs revived him briefly but we knew this was it. We all said our goodbyes, but his eyes were closed and we couldn't tell if he knew we were there. Each second seemed like an eternity and I could see the wait was devastating for Adena and my other sons. Impulsively, I bent over next to Sean's ear and said, "What's the big idea of leaving me before we found out who one the bet?" To our amazement, his lips began to curl and a big smile appeared on his face. Then he was gone. That smile was his last gift to us.

Speaking from my own experience, I can tell you that with the ALSA everything is patient centered and personal. Being with ALSA members is like being with family. When you call an ALS office, you speak to a real human being. If they can't help you on the spot you know you will hear back from them that day, not a week later. They know the clock is ticking for an ALS patient. The first time my husband called, he spoke to a nurse on staff. She spent over an hour on the phone with him, answering all our questions about ALS and advising us on just how to get started to help Sean, where to find resources and what to expect. I could see the relief on my husband's face when he hung up the phone. It was like someone had thrown us a lifeline. Her approach was characteristic of every staff member we've met: compassionate, competent, supportive and encouraging. We have had an ALSA nurse come right to our home to do blood work for Sean so I wouldn't have to drag him out to a hospital. A member of the ALSA even came to Sean's wake and funeral Mass. They reach out in ways that go beyond the job description in their salary agreements. These people devote their time and talent and energy to a cause that appears hopeless to the outside world, but it's exactly their positive attitude that gives hope to patients and their families. The bracelets worn by the ALS community say, "Never give up." It's not just a platitude; they live it.

It was hard for me to speak to you today about Sean because it forced me to relive memories that I would like to tuck away in a safe corner of my heart. But when I think about the grateful smiles and the hopeful looks in the eyes of the ALS patients that I still know, I know that their hopes and dreams are the same hopes and dreams that Sean had. I know they are depending on people like me to be their voice, their hands, their feet. I know that it was through the goodness of others that Sean was given everything that he needed and once you've experienced such overwhelming generosity you feel compelled to do likewise. Sean was blessed with a wonderful support system, but there are many ALS patients who are very much alone.

When Sean passed away, a good friend sent me a beautiful card reminding me that Sean would always be in my heart. She quoted a line from an e.e.cummings' poem and each time I am privileged to be in the company of ALS patients that line comes to me:
"I will carry your heart with me,
I will carry it in my heart."

I know I will carry their hearts in my heart until a cure is found and I believe that time is near. I invite you to consider giving the gift of hope to an ALS patient by making ALSA your gift of choice this year. Be part of something big, a cure that's going to affect the lives of 30,000 Americans and the people who love them.

Thank you for your time and for listening to Sean's story. I hope that the next time we meet it will be at a big ALSA celebration where we will be lifting our glasses in the air to toast "the cure"!

Beverly Cotrone
wife of PALS, Joesph Cotrone (1946 - 2004)

Pictured: Beverly with her husband, Joseph Cotrone

When my spouse was diagnosed with ALS I knew I was facing the biggest challenge of my life. Then I was directed to ALSA. Team members at the clinic advised me on home healthcare, Medicare, medical equipment, nutrition not to mention my questions and anxieties. No need to be concerned about getting back and forth to the clinic - ALSA arranged for transportation through the Transportation Program. But more importantly the ALSA team was there to hold my hand through emotional times whether it be a home visit to advise on medical needs or to lend an ear on individual concerns. The ALSA Team were my FEET - their unconditional support carried me through the challenges with love and compassion that can only be fully understood by a caregiver.

Tom Fraehmke
husband of PALS, Marlene Fraehmke

Pictured: Tom with his wife, PALS Marlene Fraehmke,
and their son Christian

ALSA takes a lead role in advocating for research, health & long-term care, and caregiver support by organizing the National Advocacy Day and Public Policy Conference in Washington DC. Over these three days each May, one can learn the latest in ALS research, how to advocate, and come face to face with one's elected officials. ALSA Advocacy efforts have resulted in passage of the 24-month Medicare waiver, presumptive disability ruling from the Social Security Administration, increased federal funding for research at the NIH and federal funding for research through the Department of Defense. Just after my wife's diagnosis, I was looking for ways to get involved and make a difference in the fight against ALS. ALSA Advocacy has afforded me this opportunity.

Laura Grzeskowiak
PALS

Pictured: Laura with her husband, John
at the Walk to D'Feet ALS

I am a native Staten Islander, 53 year old married, mother and grandmother who was never sick a day in her life. I worked full time for more than 25 years, 10 of which were for St. Vincent's as the Corporate Director of Special Events.

Almost 3 years ago I began noticing slurring in my speech, and after several months I went to see a neurologist who indicated he thought I might have ALS. I was referred to an ALS neurologist who did many, many tests but who could not confirm the diagnosis. As my daughter was to be married in 6 months, and I was not getting worse, I decided to forgo visiting any Doctors until after the wedding. The reason being, when the first Doctor told me I had ALS, he basically said "you have 3 - 5 years to live, there is no cure - go home and get your affairs in order"

After my daughters wedding in April 2005 I went to 2 more ALS Clinic, recommended by the NY ALS chapter and received a definite diagnosis of ALS. I kept working until this January 2006, at which time my speech had gotten worse and my walking was somewhat awkward.

Today, my speech is mostly unintelligible and my walking is slow and labored. However, my life is wonderful, I have a loving family, many supportive friends and the ALS Association NY Chapter.

As this disease progresses it robs more and more of your muscles, which in turns takes away your ability to do anything for yourself, i.e., walk, talk, eat, take care of personal hygiene, sit, turn in bed, turn a page in a book and even breath. The ALS Chapter has been there for me every step of the way to assist is securing the appropriate equipment or finding the resources needed to acquire the items needed. In addition, the ALS Chapters are instrumental in making communities aware of this awful disease.

After all these years there still is no cure, and only 1 medication that slows the progression (and even that only extends the lives of ALS patients for 6 months).

The ALS Chapter has given my family and me all the support and compassion that we need, they are always available to assist with any question or concern we have.

Christina Raia
daughter of PALS, Anthony Raia (1955 - 2005)

Pictured: Christina with her father, Anthony Raia

ALSA helps patients and their families cope with the feeling of helpless-ness brought on by ALS by enabling patients and their families to join the fight in helping to eradicate this insidious disease. Knowing that nothing can be done to prolong your life or that of a loved-one causes a stream of emotions. ALSA helps patients and their families take those emotions and turn them into something positive - courage and determination to battle this disease. ALSA helped me, as a teenager, to cope with my father's sudden illness. ALSA provided me with an outlet to express and share my feelings about how ALS affected my family; and to show how ALS doesn't only affect the patient, but their entire family. Getting involved and being able to share my family's story and put a face to this insidious disease while raising awareness made me feel like I was making a difference; that maybe my efforts will one day no longer allow ALS to cause a child to grow-up without their father or mother.

During National Family Caregiver's Month in November, ALSA delivers prepared Thanksgiving meals to patients and their families. Thanksgiving was the first holiday my family and I had to celebrate with my father being on a ventilator only one year into his ALS diagnosis. It was going to be the first time that my mom needed to juggle preparing for the upcoming holiday season and ensuring that she gave my father the undivided attention and care that he needed. With five young children, the time between Thanksgiving and New Years under normal circumstances is a complete whirlwind; and this holiday season was going to be a learning experience for my family, and just a glimpse of what our future had in store. My mom spent all of her time caring for my father, and when she received the call from the Chapter offering us the meal, on a whim she decided to take advantage of the program. That year it helped lift some of the burden my mother had to bare in preparing for the holidays, and allowed her to spend her time concentrating on caring for my father. It enabled my family to spend more quality time together - to concentrate more on enjoying the holiday rather than preparing for it. It also helped us to better handle how my father's ALS would affect our holiday seasons.

Idaliz Romero
wife of PALS, Ricardo Romero

Pictured: Idaliz and her husband, PALS Ricardo Romero,
and children, Ricardo Jr. and Linda

The support group has been a resource and a comfort to my husband and I. As a caregiver the support group has provided a place for us to share our feelings and know that we are not alone. It has provided not only emotional support, but also has given us resources to use. We have received so much information on where to go for help or who to turn to. The people at the support group have taken us in and have made us feel part of a special family, who share their pain, but also their strengths. Debbie and Maryann are wonderful support, they provide any help that we have needed and if they can't they will direct us in the right path. They are compassionate and caring people. Thank you ALS Association for making the 1st year of my husband's disease a little more bearable and showing us that we are not alone.

Stan Silver
PALS

Pictured: Stan and his wife, Phyllis Silver, and a friend
at the Long Island Walk to D'Feet ALS.

ALSA has been extremely helpful this year to both my wife, Phyllis, my 24/7 caregiver, and me. As a PALS (Person With ALS) I was really appreciative for the assistance both Phyllis and I received from ALSA staff members when attending the ALS Advocacy Day and Public Policy Conference in Washington, DC this year. I also want to thank ALSA for loaning me a power wheelchair until I got my own. It really made life a lot easier, and allowed me the freedom of getting around and attending events. One of those events was our being able to attend the taping of the TV show Jeopardy, thanks to ALSA providing the tickets. That was very exciting. Then, of course, there was the van that ALSA provided to take us to and from the Walk To D'feet ALS at Eisenhower Park on Long Island. That was a very special day for us. Finally, I must also thank ALSA for all the ALS research information they provide via e-mail as well as their extensive website. Both Phyllis and I must express our appreciation and "Thank You" to both ALSA-NY

Eileen Witkowski
friend of PALS, Georgann Yurtin

Let me salute the NJ patient services coordinator, Debbie Schlossberg, LCSW. My friend, Georgann Yurtin gets an enormous benefit from her visits. Single PALS lack that partner to brainstorm ideas or to help coach them through the myriad of changes PALS experience. Debbie's visits have offered an independent source of counsel on a range of topics including the really tough subjects. Her experience with the chronically ill, reliability and follow through have greatly assisted Georgann. Blessings and joy in the New Year, Debbie.

Resources such as the "Loaner Closet" should be touted to everyone. ALS requires so many changes in equipment that the financial aspect and lack of storage space in the home may tie for the biggest concern! Voila . . . the loaner closet. As my friend Georgann moved from canes to walkers to motorized chairs she was able to donate items she no longer needed. Most recently, she received a voice enhancer device that allows her to be heard clearly even if she is only whispering. Antoinette Verdone is in charge of the loaner closet and located this item. Sharing and recycling this equipment allows the PALS to give back and make it easier for those who follow in their steps . . . as we all wait for a cure.

Karen Chappell
daughter of PALS, Anne Mulski

Pictured: Anne Mulski and her daughters

At the age of 83, my mother lost her battle with ALS this past June. She had been diagnosed 3 years earlier.

For me and my family, Mom's ALS diagnosis was entering into a dark space of fear - fear of the unknown, fear of the outcome. We knew little about the disease and what we did know was difficult to believe let alone accept. We didn't know how we would ever deal with it. That is when my family first experienced the wonderful warmth, comfort and support that the ALS team provided us. They helped educate and comfort us and let us know that they would be there for us. This was a journey my family traveled side by side, holding hands, with the ALS team. They were there for us with each progression of the disease, when we didn't quite know what to expect and how we could possibly care for my mother. One staff member in particular continued to go above and beyond - our nurse Theresa. She brought peace, comfort and laughs to us when the world around seemed so dim.

I remember when my Mom had a terrible fall and ended up in the hospital's emergency unit. Knowing that the ER staff was not all familiar with ALS, it was such a relief and comfort when Theresa showed up at the hospital. She was our 'mediator' between the medical staff to ensure the staff understood my mother's condition and that procedures and care were not detrimental to my mother. I also remember when my mother was in the nursing home, we were very happy when Theresa would visit. When we were frustrated that the nursing home staff was not educated in ALS, Theresa took it upon herself to get them educated. She persuaded the nursing home's management to conduct a training session to the nursing staff to help educate them on the ALS disease. This enhanced the level of my mother's care and future ALS patients there.

I know my Mom was so appreciative of the ALS staff and the comfort and hope they provided to her during her last years of life.

Jean Haley
daughter of PALS, Anne Mulski

It is a difficult thing to recount back to all the experiences we encountered during Mom's ALS disease. I had direct contact with many of the staff and feel Mom would want me to acknowledge these people.

My Mom, Anne Mulski, had always been healthy, except for a bad back, for much of her life. She and my father, John, raised seven children at our home in Seaford, New York. When Dr. Mitsomoto gave Mom her ALS diagnosis it was a shock to all, Mom was 80 years old. The next couple of years were filled with a blur of activity as this horrid disease took control of my mother. Mom started with bulbar onset, so the first person to help was Alison Gurwitz, from the New York ALS chapter. She obtained for Mom a light writer communication device. That communication device became the way Mom was able to communicate. I don't know what we would have done without it.

Theresa Imperato was the nurse on the Stony Brook Support Team that was a constant source of information, help, and support for all of us. When Mom needed a feeding tube, but was very reluctant, Theresa visited her at home to show her what it looks like and how it works. Mom had a feeding tube inserted. When Mom's secretion management became an issue, Theresa once again was there. Theresa not only provided nursing care for my Mother, but was always there for us. She was our angel.

Antoinette Verdone was so wonderful in obtaining a lift system for Mom's bedroom so she was able to get out of bed each day. She came and installed it at the home herself. She also secured a shower transfer chair for Mom. These items were tremendous in giving my Mother comfort and allowing her to stay in her home with Dad.

The ALS Symposiums, that are held each year, gave us an opportunity to connect with others and further our knowledge of ways to keep Mom comfortable. We learned of Millennium Respiratory here. They were invaluable in providing information, machines and monitoring as Mom's respiratory functions declined.

My Dad continues to live at the house in Seaford. There is a void there without Mom, but we all feel grateful that we were able to keep Mom at her home. Without all the help from the ALS network this would not have been possible.

Diane Lanahan
daughter of PALS, Anne Mulski

My family made a decision to do everything that we could to help my mother stay at home with her husband of 57 years, even as her condition deteriorated. It was extremely difficult for me and my siblings to figure out what my mom would need as she worsened and how to get the services and equipment that would allow her to maintain the highest quality of life possible every day she had with us. Antoinette from ALSA agreed to do a home visit at a time when we were desperately worrying about how my mother would get out of bed. She was knowledgeable and extremely supportive. Initially a transfer board and pivot disc were helpful, but eventually she required an electric lift. All of these items were made available to us through the equipment loan program.

Our nurse Theresa was an angel in many ways and provided support and advice to all of us. She guided us through dozens of issues from respiratory management to mouth care and no concern was too small for her to address. Because of the assistance these team members provided, my mother was able to enjoy her own home and family until the very end. I don't know how we would have been able to care for her without the support we received. I speak for my mom, my dad, and all my siblings when I say thank you all at ALSA for your support and taking on the task of caring for those that are given the very difficult diagnosis of ALS.