Personal Stories

Focus On: Ruth Wallberg & Alli de Boer

Twin sisters, Ruth Wallberg and Alli de Boer, had heard of ALS before, but when their mother started having difficulty grabbing things, they were not expecting ALS to be the diagnosis.

Since their mother's diagnosis, the Wallberg family's bond has only grown stronger. Ruth and Alli say, "It has been dificult but, we stay positive and we keep living the way we always have, although with some adjustments, mostly physical. Our mother has been a role model and mentor to both of us since the day we were born and that has not changed in the least."

With a desire to fully support their mother, Ruth and Alli began to attend monthly ALS Support Group meetings, in order to become more educated about living with ALS. Since then, Ruth has become involved with the Chapter's Young Professionals Group and they have started a New York City Walk team, The Mighty M's.

Ruth and Alli say of their desire to get involved, "We think it's very important to know you are not alone. Although we have each other and are best friends, each person experiences things differently and with respect to his or her own life. There is an exchange of information (personal and medical) that can help someone individually and perhaps benefit his/her loved one with ALS."

The Wallberg family has found great success in fundraising for their Walk team, having raised over $20,000. They credit their success to their caring friends and neighbors, saying "We have not been afraid to ask for help. Although this is a very personal tragedy, we know our friends and colleagues want to be involved. This is a way they can help and support us . . . and that helps them cope too."

Ruth and Alli hope to become more involved with the Chapter after the Walk is over, but until then, they will continue to enjoy living each day with their mother to the fullest. As for advice for other people who have a loved one diagnosed with ALS, they say, "It's ok to seek out support groups, cry to your friends and family or just cry by yourself. Everyone has good days and bad days. Although it can be trying at times, it is important to know that it's ok to laugh and make sure that you never lose your sense of humor."


A Caregiver's Story
Mary Ann Gillis wrote this piece as the first part of an article by Benjamin Kligler, MD, MPH, a researcher at the Beth Israel Continuum Center for Health and Healing. It was about her mother, Madeline Gillis, who died of ALS in December 2006.

"Father Chris, the hospice priest said to my mom 'I have never known anyone who knew they were dying to be so happy.' She responded 'I don't look at what I have lost, but only what I have in life; my children, my friends, movies, and books.' She lived throughout her illness with a sense of joy and happiness I have seen in few people. It was through her joy and sorrows I came to realize my impact on her well-being as a caregiver. It was as if I became the looking glass in which she viewed her life through a reel of images I portrayed."

"Upon recognizing the effect I had on my mom, I decided to change the way I cared for her by bringing my holistic philosophy into her life. I introduced her to a concept of no future or past. I had read about a culture that had no words in its lexicon for the concept of future or past. Together, we began living totally in the present, focusing on what was good, yet allowing for the upsets which came along with her illness and being in a wheelchair. It freed me to be creative in her care. One way we practiced focusing on present was during her meal times. My attention and intention was all about her. While I fed her, I looked directly into her eyes, watching and admiring how she thoroughly enjoyed her food. The happiness and smile on her face brought much happiness to me. Can you imagine the joy of looking into someone's face for 365 days in a row and experiencing the pleasure she felt in living simply because food exploded and triggered all the taste buds in her mouth. In such a basic and necessary action, my mom and I experienced the enormous grace of love."

"One of my favorite times with my mom was her bedtime. I used to place her in the Hoyer-Lift, a machine used to raise her from her wheelchair, which would on occasion swing her in front of the window, exposing her buttocks to anyone passing by. She would laugh and shout at me, yelling, 'You fresh kid, you! This is elder abuse, elder abuse!!' We would double over and be immobilized in hysterics, laughing so hard we couldn't breathe. Her bedtime ritual was a big part of our day together. From start to finish, it was an hour and a half of my undivided attention to prepare her for her 'evening repose' as we called it. After lowering her into her bed, I would massage and stretch her calves and feet with St. John's Wort oil, in the vain hope of keeping her nerves stimulated. In the end, she lost movement of her legs but she maintained a slight side-to-side movement and a little flexibility in her feet."

"We often had a lot of fun, but my mom experiences some very bad days too. One day, the muscles in her arm stopped working, making it impossible for her to feed herself. As she began to cry, I held her in my arms and cried along with her. Suddenly and unexpectedly, she told a joke and we started laughing. As our laughter diminished, she told me she just wanted to focus on good things, listing everything for which she was grateful for because there was too much sadness surrounding us. From that moment, we never let another muscle go without acknowledging its loss. We mourned and grieved each and every muscle loss, but always ended with laughter and gratitude. Laughter and rituals helped her through bad times, but it wasn't the only way I helped her. I also treated her homeopathically with Reiki for deep, feral-type fears, depression and anxiety."

"My experience caring for my mom was both an extraordinary blessing and a challenge. I was blessed and challenged throughout her years of illness, yet I would not have changed a single thing. I introduced my mother to my world of spirituality and holism, and our lives together shifted. I was able to care for her with my skills as a healer, the person she never understood. At the end of her life, she honored me each and every day, thanking me for the wonderful care I gave her. The night she died in our home, my brothers and sisters and I sat by her side, holding her hands, caressing her head, and touching her. As she released her hold on this life, she left her greatest gift, her love, to all six of us."

"Fighting" to Spread ALS Awareness
Fern Cohen

Long Island Walk to D'Feet ALS team, Fern's Fighters, captures the qualities of its namesake to a T. Since being diagnosed with ALS in 2004, Fern Cohen has focused her time and energy on fighting to educate people about ALS.

Fern has learned that spreading ALS awareness happens on a daily basis. Patience and a willingness to be open about her disease are most important. Says Fern, "Most people have never met someone with ALS, and only know it from Lou Gehrig. As an example: recently, I went to the bank and I knew I had to speak with an officer. I handed her a typed statement that says I have ALS and I cannot speak, but will use my aug-comm. This immediately tells her to speak directly to me and not to the aide."

Fern continued her mission to educate in Albany for ALS Awareness Day. There she joined a delegation of approximately 20 advocates to meet with members of the New York State legislature. In May, she will go to Washington, DC as part of National ALS Advocacy Day. Says Fern, "I want to put a 'face' on this disease, and also put myself personally in front of lawmakers who can legislate actions that might result in a cure and/or services to PALS and CALS."

Fern also spreads awareness within the ALS community. Every patient, caregiver and family member has something to offer about living with ALS. Fern says, "I attend support group meetings every month because it brings me closer to other PALS and caregivers, and I can get feedback from them about what they are doing to make their lives easier." She encourages PALS who are not involved in patient programs to "go to a support group, either in person or online. Knowing that you are not alone is comforting. And learn all you can from other PALS and CALS."

By writing a blog (www.ferncohen.com), Fern welcomes people to take a peek at living with ALS. Here she discusses clinic visits, dealing with aides and how she copes with feelings of solitude.

February Monthly Update "Focus On"
Miggie Quiles-Kampuries

I had often heard about the famous Yankee baseball player, Lou Gehrig, who died of "A Strange Disease."

I didn't know what it was really, until my father was diagnosed with it in October 2005. That is when my schooling began. I learned much about this devastating neuromuscular disease firsthand as I, along with my husband, Jimmy, became my father's caregiver.

The ALS Association was for me an extremely helpful and supportive organization. I don't think we would have been able to manage this all on our own without the expert and knowledgeable team of doctors, nurses, facilitators, and administrators who were always available to us when my family needed answers and help quickly.

It is a pleasure for me to volunteer my time at the ALS Association of Greater New York, especially when sending out the monthly updates. The information contained therein was very helpful to me at a time when I depended on the information for answers to questions I had about ALS. That's where I learned of the support group meetings I would eventually attend in Long Island. There I met many wonderful people who either had ALS and/or their caregivers.

My father passed away from this dreaded disease on February 17, 2006 just six months after being diagnosed. The motivation to join the Walk to D'Feet ALS was very easy for me. I did it in memory of my dad who always gave so much of himself not only for his family, but to humankind. My dad genuinely loved and cared about people. He was a loving, considerate, and kind person. While I walked in his memory, I walked in support of all PALS. I walked in the hope that through both awareness and financial support that we can finally find a cure for this awful disease.

One of the simplest things I do is always wearing my red support band. I can't say how many times people ask me about the band. I use the opportunity to tell them about this disease and how they too can show support by donating to the ALS Association where their dollars will help support local patient service programs and bring financial support to help find a cure for this horrible disease.

To all PALS struggling with this disease, and on behalf of the memory of my Dad, Tomás Quiles,

God bless you now and always as we continue to press forward towards a cure!

The Holiday Season
Stan and Phyllis Silver

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 attending the taping of the TV show, Jeopardy, thanks to ALSA providing the tickets. That was a very exciting experience. 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 and ALSA-National.

The benefits of ALSA are endless. The staff goes beyond the duty of being helpful. They are kind, thoughtful and compassionate. However, we as PALS and CALS have to turn the opportunities offered into positive, beneficial and social experiences. Having not known much about this disease except Stan's diagnosis, we wanted to participate in the RIDE FOR LIFE as soon as we heard about it from other members in our ALS support group. That trip from the Intrepid in Manhattan to Montauk on Long Island by way of wheelchair for the PALS and walking or riding for the CALS proved to be a turning point in our lives. We were no longer isolated. Our attitudes became focused on taking action and educating the Public instead of spending hours wondering what path our lives would take. Thinking is good but channeling our frustration into becoming advocates is the best thing that happened to us.

We plan to stay at home for the upcoming holidays. The main reason is that my condition confines me to a wheelchair making traveling difficult. We are having some guests here for Thanksgiving. We have been invited to friends' homes but cannot go because of the stairs involved. We have been fortunate with fantastic support from relatives and friends. Having had a lot of out of town company for some of the holidays, we look forward to extended family coming toward the end of the year.

December 22nd makes it one year since I was diagnosed with ALS so especially now I think of other people going through a similar experience. That is why it is so important, during this holiday season, to reach out to others. I just hope that in the coming year that the medical research efforts will get significantly closer in finding the cure to this terrible disease. The one happy thing about this December is that Phyllis and I will be celebrating our 37th wedding anniversary.


Caregiver's Month
Ruth Murphy

My husband of 31 years was diagnosed with ALS a year and a half ago. As his primary caregiver, I am actively involved with his medical treatment as well as securing quality home heath care while I work full-time. I depend mostly on my 23 year old son who happens to live with us to run the house, although my newly married daughter is accessible. Friends and family members of both of us have offered their assistance throughout this time. My husband's co-workers organized committees of men to assist us. One family donated the wood and several workers constructed Joe's wheelchair ramp. My girlfriend's donation was to have her business associate who owns a laundry service pick up, clean and return my laundry the same day. Joe's friend delivered the newspaper and breakfast to Joe everyday and provided Joe with a transfer bench. Another friend donated a lift-chair and table that Joe used exclusively for many months until he became unable to transfer from that chair to his wheelchair. Another friend provides us with his landscaping crew every week. A neighbor and her family have been there for us including dropping off one-day-a-week, delectable homemade meals including the salad, soup and dessert. The list goes on.

Joe's condition has progressed to the necessity of being in bed all but two hours a day and needing complete assistance with transferring to his wheelchair as well as all other functions. This requires me to be home with him the time I arrive home from work, until I return, never leaving him alone. I rely on my son to perform all the errands including food shopping, gassing up my car, etc. I've resourced my knowledge as a supervisor to completely understand how to effectively communicate with his aide and achieve success with her willingness to perform her optimum. The sense of life's priority dramatically changes when accomplishing these goals. But most of all much of my energy I possess toward this challenge is derived from my empowerment of knowledge and education regarding this complex disease. Attending the ALS sponsored support group meetings and symposiums provided me with a wealth of information to enable me to successfully meet this disease head on with confidence. What I learned most of all through this experience of my loved one being diagnosed and observing the disease's progression is that what seems to be a negative impact on our lives, has generated so much positive responses in return. The most wonderful feeling I have is that I'm never alone and that quality care and assistance when I need it is all but a phone call away.

The patience and dedication I have to see him through this is derived from a life time of love and happiness he unselfishly gave to me, his family and friends. I know the importance of accepting everyone as they are, and what they are able to do to help, without judging. Most importantly, we learned to accept people’s help despite our personal pride of being independent and self-resourceful.

As painful as the diagnosis was, the reality of the ultimate outcome and its impact on our family, I must recognize and appreciate the extraordinary love and devotion shown to us. The generosity and love of friends and family and complete strangers continues to amaze me and make it possible for Joe to face ALS with dignity.

My Personal Reflections: "Compassion, Courage, Smile"
Written by Marcus Garand

This past year my first cousin Deborah passed away; she had ALS. She was a wonderful person and lived a beautiful life. I remember the day when my mother told me that Deborah was diagnosed with ALS. This news dwarfed everything going on around me. I got that unpleasant feeling in the pit of my stomach. I thought of Deborah, her husband Jeff, her kids, her brother Rick, her father Richard and her mother Ginny. "How long has she had ALS," I asked. My mother said, "six months." Then she asked, "What is ALS?" My mother knew that I was the clinical dietitian for an ALS clinic in New Jersey. After speaking to my mother, I reflected on what Deborah and her family were going through and what was ahead of them. My heart was heavy.

My experience as the dietitian for the ALS clinic at UMDNJ/RWJMS, the passing of my youngest bother and my great aunt Yvonne helped me see an uplifting side to humanity in the presence of sorrow and suffering. My brother Justin passed away at the tender age of 2 1/2 in the summer 1983. He drowned in our swimming pool. I was 15 years old and getting ready for my freshmen year in high school. It was my first real experience with the passing of a loved one. It was a heart-breaking experience and coping with the loss of Justin seemed unapproachable. I cried often and watching my parents cry was painful. I cried for them too. After the funeral, we had an open reception at our home in Barre, VT. The outpouring of love, compassion and support that we felt was overwhelming and amazing. I could not believe how many people cared about us and our loss. It changed me. I would never forget the impact that a simple act or word of compassion could have on another person.

My great aunt Yvonne was like a grandmother to me. She took care of me as an infant and was my babysitter into my early teen years. Looking back she was an angel from heaven and I do believe in angels. In the weeks, months and years following Justin's death she would often talk about Justin; she would tell loving stories about him. She would always smile when talking about him. We would often laugh and cry at the same time when she told a funny story about Justin. And one day it just hit me. I realized what joy Justin brought to our family. I happened to be driving down the road when this hit me and I looked up into the rearview mirror and saw that I had a smile on my face. I thought about how Yvonne helped me see this and my smile got bigger.

Shortly before my first day as the dietitian for the ALS clinic in NJ, I knew very little about ALS. As a baseball fan in my younger years I knew Lou Gehrig died from it and that was about it. At first, it was difficult providing counseling to people with ALS. I could see the pain and suffering in their eyes, and I could see the grave sorrow in the eyes of their loved ones. Silently, I could relate to what they were going through to some degree. I thought about Justin and Yvonne. I let my compassion show, sometimes it was a touch on the shoulder or a caring phrase; I showed I cared. It wasn't long before I started to see a different look in the eyes of people with ALS and their family members. It was the look of courage, grace and love for life. It touched my soul.

Today, I remember the fun-loving and compassionate interactions I had with my cousin Deborah as well as the following people who passed away this year I had the privilege of knowing as the dietitian at the ALS clinic: Harvey Schukin, Amy Job, Jean Powell, Joseph Pettinato, Lillian Meyer, Mary Jane Hart, Nicholas Borzeka, David Gilson, Michael Novello and Joseph Sasala. I pay tribute to the lasting effect they had on the lives of their loved ones. I remember their courage, grace and love for life. It nourishes my soul to this day. And that is something to smile about.


Last Run -- Near Life
Story written by Tom Masters about his last time in a kayak, due to Lou Gehrig's disease

Have any of you ever known it was the last run? Not the last run of the day or even the last run of the year. But truly the last run you'll ever make. I have had that privilege.

It was in late September, a little over six months after being diagnosed with ALS (Lou Gehrig's disease). My muscles had started to weaken and there was the constant cramping to deal with. I had mostly been concerned with what might happen if I put someone else in jeopardy. So I had been out of the water for nearly a year. But after a fair amount of coaxing and the promised use of a duckie, I thought what the heck lets give it one more try. After all it was the Mongaup. In basketball terms it was a slam dunk on the home court.

So a small but selective team was put together. Roger, Tom, and Dave were there for me. All were strong paddlers, all strong man, all good guys. I just had one proviso. If by some chance I got in a precarious situation they had to promise to not put themselves in jeopardy. With that agreement made, off we went.

On the way down to the put-in I was already showing some of the impact of my disease. As I clumsily made my way into the duckie I made a casual remark to a stranger about how I used to be pretty good at this. He replied with: "We all are getting a little older." Honestly my first reaction was to think about jabbing him with my paddle. But instead I just realized the humor in the situation.

So off we went. I have to admit to a little trepidation when we hit the first rapid. After sailing through it without any problems I started to relax. Soon I was starting to feel like my old self. Moves would soon come back to me. I even went so far as to entertain the possibility of another run on a more difficult river. Well, that thought was soon to be extinguished.

The day was beautiful. The company was simply the best. Everything was right. Onward we paddled, laughing together, not a care in the world.

As we came upon the last long set of rapids I was really starting to feel my oats. So what the heck. I thought I should try a little surfing. As I slipped onto the wave everything felt perfect. Back and forth I rode. The hoots from my companions spurred me onward. I leaned forward to gain a little speed and then started to lean back to slow down a bit. Next thing I knew I was staring at the sky. I was incapable of righting myself. My abdominal muscles had become too weak. But I was still surfing. I stayed that way for quite some time. My pals probably thought that I was just trying to [lamely] show off. Finally I figured I better try and get off the wave. Much to my surprise I was able to slide off safely; but I still was lying flat on my back. To top it all off I couldn't help laughing hysterically.

Between the sounds of the rapids and my hysterical laughter, my paddling partners did not initially grasp what was going on. When they did they rushed to my side. Tom quickly tried to help me into an upright position. Unfortunately I could not help him in the least. As he struggled in vain it was not long before I rolled out of the duckie.

Now the three of them were truly worried. When I finally popped my head through the surface I still could not keep from hysterical laughter. Roger was quickly there for me to hold onto his boat. Only I was no longer strong enough to hang on. Dave had righted the duckie and was calling for me to climb in. As he reached across the duckie to grab onto me Roger and Tom tried to lift me into the boat. They must now know how the handlers at Sea World feel when they try and move Shamu around.

On down through the rapids we went. Three very determined guys trying to save a friend. While they were probably not quite sure if the friend had gone insane. At least his laughter would have indicated so.

As I said, three strong paddlers, all strong man, all good guys. They would not quit until they got me back into the duckie. They ultimately got me into the boat and even managed to get me into a proper paddling position. Unfortunately only a handful of strokes were left and we were at the take-out.

My encounter with reality was not quite over yet. To get to the parking lot from the take-out requires a short uphill climb. I was on all fours like a baby with someone pushing my butt the whole way. And there was still that infernal laughter.

I referred to this experience as a privilege and it truly was. Upon hearing the story, Dave's brother referred to it as a "near life" experience. I very much like this description. To have experienced just a little bit more of life's goodness with wonderful people, even knowing it was the last time I would ever do so, was truly a privilege.

My sincere thanks to this superb group and to anyone who has ever shared life on the river with me.

Tom Masters