ALS Connect

Don and Claire Bratcher: Imagining a World without ALS

ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.

So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family. These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.

Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years. Claire recently agreed to share their story and we’re delighted to post it here in her own words.

And so my story begins. In 1990, at age 80, my dad, Larry Boberschmidt, Sr., was diagnosed with spinal muscular atrophy and died at age 82. In 1994, at age 55, my sister, Marie Serena was diagnosed with ALS and died at age 57. In 2002, at age 55 my sister, Eleanor Ecuyer, also heard the words, “You have amyotrophic lateral sclerosis (ALS)” – aka Lou Gehrig’s disease – and died at age 57. I then realized my dad probably was misdiagnosed and also had ALS.

The most common form of ALS in the United States is “sporadic” ALS, which means that the disease can affect anyone, anywhere. Our family falls in to the other ten percent of cases – the inherited form of the disease, called “familial” ALS. Families members who fall into this category have a fifty percent chance that they will inherit the gene mutation and may develop the disease.

Familoy members — Family members we celebrate.

Lou Gehrig’s wife name was Eleanor. On July 4, 1939 at the young age of 36, Lou Gehrig announced to the crowd in attendance at Yankee Stadium who came to watch him play, that instead he was retiring from the game he loved because he had been diagnosed with ALS. My sister Eleanor died on July 4th. Coincidence? I don’t think so. Eleanor was probably the most independent person I have ever known, but when you live with ALS, this horrific disease robs you of all of your independence which was, for Eleanor, the most difficult thing about having ALS. She didn’t want to have to depend on everyone for everything. I believe by her death occurring on July 4th, it was a way she showed that she was regaining her independence. Despite all of that, she considered this disease a gift, as it brought people together in prayer who ordinarily would not even speak to each other.

Memory Wall — Our grandson, Shane Hill, looking at our family’s photos on the memory wall at the Walk to Defeat ALS.

In 2003, I decided that I needed to do something more. I knew that I couldn’t waste any more time with negative feelings about what ALS had done to our family, but decided instead to channel those feelings into positive actions. I reached out to the St. Louis Regional Chapter and asked what I could do to help. That is when the Eleanor’s Hope team was formed and we became a part of the Walk to Defeat ALS. I still felt I needed to do more, so I became a part of the St. Louis Regional Chapter’s Walk committee. I didn’t know it at the time, but not only was I becoming a member of this committee, I was joining a fabulous group of people that I now consider my ALS family.

Eleanor's hope 1 — The Eleanor’s Hope Team

The Eleanor’s Hope team continues to walk for those who can’t and will continue to be part of the Walk to Defeat ALS as long as it takes. As the song goes, “I Can Only Imagine.” I would add to that and say that my prayer is “I can only imagine a world without ALS.” I believe we are very close to realizing that dream.

Claire and Don Bratcher
Eleanor’s Hope Team Captain

If you would like to become a volunteer and join a team of warriors dedicated to fighting ALS, please visit our website to learn more about available opportunities.

And, join us at the Springfield Walk to Defeat ALS June 16th at Southwind Park, and at the St. Louis Walk to Defeat ALS on June 23rd at Forest Park.

Caregiver Confidential: Memories

We didn’t realize we were making memories, we just knew we were having fun.
—Unknown

A few weeks ago, I was sorting through boxes of family photos in the hope of organizing and creating some photo albums. During my search, I came across photos from our trips to Mexico and Hawaii in 2006 through 2008. Although my husband Brian had been diagnosed with ALS when the photos were taken, I had fond memories of our vacations. I recalled how much Brian, our daughter Leah, and I enjoyed ourselves despite his illness. We had never been to Playa del Carmen, Puerto Vallarta, and the Hawaiian Islands, so each trip was magical and a new adventure. Although somewhat challenging to travel with Brian as his disease progressed, in retrospect I am so thankful that we created happy memories during what otherwise was a very sad period.

I can attest to the importance of spending meaningful family time that does not dwell on your loved one’s illness. When we took our 2006 trip to Mexico, our daughter Leah was unaware that Brian had ALS. Brian’s symptoms were barely noticeable to anyone but me. On our next excursion in November 2007, Brian had just retired from his law practice and had told colleagues, friends, and family about his diagnosis. Brian enjoyed our trip to Puerto Vallarta, whether the cuisine, music, or walks on the beach. Fortunately, he had only minor physical limitations.

By the time of our vacation to Hawaii in January 2008, however, we needed to be creative in our approach to vacation activities. We could not do hikes or big excursions because Brian’s balance and mobility were limited. Instead we stuck to walks on paved sidewalks along the beach, driving tours with stops, and lots of wonderful eating. We enjoyed a Luau and took an amazing whale watching tour. Simply put: We had a great time.

Hawaii vacation — Idelle, Leah, and Brian enjoying dinner in Hawaii, January 2008.

We also created some wonderful memories by hosting a family reunion for all the Winer cousins in May 2008. Initially when Brian’s sister Joyce proposed St. Louis as the reunion site, I was unsure whether it was a good idea. It turned out to be a great idea and a much-needed distraction from wheelchair shopping and home modification. Brian and I enjoyed making the hotel and restaurant reservations, hosting a welcome cocktail party at our home, and engaging in good conversation with supportive family. It was the best medicine that could have been prescribed.

My message here is simple: Create a legacy of happy memories for your entire family while you can. It does not matter where you go and what you do; it is the people you are with that matters. With ALS, there is such a small window of opportunity to make memories and share meaningful time together, aspects of life that healthy people all too often take for granted. For an ALS patient, today—not tomorrow—is the best day of one’s life, and it is important to make every moment count.

How has your family created lasting memories? What activities have you enjoyed together? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, in the comments section. Let’s continue the conversation.

Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

More Resources for People with ALS

The toll that ALS takes on a family is devastating – and can strain a family emotionally, physically and financially. The ALS Association helps ease the physical, emotional and financial burdens that often accompany an ALS diagnosis by providing free programs and services to help people with ALS and their loved ones manage this journey. We also have an extensive referral network and can help identify additional support within the community.

The following organizations may be able to provide additional resources to families in need of assistance and guidance:

App2Speak
Easy to use speech and communication application for the iPad. Offers a 30 day trial.

Friends of Pam Scholarship Fund
The Friends of Pam Scholarship Fund provides up to $5,000 in awards/scholarships for children of people with ALS.

Family Hire
Family Hire provides a safe and efficient way for families to interview, choose and employ caregivers directly for their loved one. This innovative approach to in-home care empowers families to make the choices that best fit their needs, preferences and budget.

Association for Fronto Temporal Degeneration
Offering support programs for patients and caregivers of those living with FTD as well as research opportunities.

International Ventilator Users Network
Dedicated to enhancing the lives and independence of users of home mechanical ventilation.

The Dream Foundation
Grants wishes to terminally ill adults with a life expectancy of one year or less and whose limited resources leave them unable to realize such dreams for themselves on their own.

Hope Loves Company Kid’s Camp
Hope Loves Company sponsors free three-day overnight retreats for children and young adults affected by ALS.

National Education for Service Assistance Dogs
Provides detailed information on how dogs are being trained to assist individuals with all activities of daily living.

Team Gleason
Helps individuals with neuromuscular diseases or injuries receive leading edge technology and equipment.

The Message Bank
A joint project between Boston Children’s Hospital and Tobii Dynavox with a goal of providing a free and open message bank resource for people at risk of losing their voice.

Ramp Up
The UCP Ramp Up Foundation provides grants to low income individuals with disabilities living in a single family home in the state of Illinois. Income limits apply. Funds are used to build ramps, lifts accessible bathrooms and kitchens, door widening, elevators, stair

United Special Sportsman Alliance
An all-volunteer 501(c)(3) non-profit wish granting charity that specializes in sending critically ill and disabled youth and disabled veterans on a free outdoor adventure of their dreams.

United Way 211
A nationwide information and referral line, offering access to over 40,000 resources.

Voice Banking
A free online tool to help people through every step of the message banking process to record their voice, which can then be transferred to speech generating devices or to a text to speech app that plays audio files.

Visit www.alsa-stl.org for more information and resources on ALS.

Thank You for Sharing Your Journey with Me

By Heather Burns, MSW, LMSW, ALS Association Care Services Coordinator

Today, I received two phone calls. I had that familiar gut wrenching feeling when the names of the patient’s loved one’s flashed across the giant iPhone screen. I hesitated when answering, as if maybe that could change what the caller was about to say…

“My loved one has passed away.” I knew it was coming before today. I knew it was coming before they picked up the phone to call me. I knew it the moment I walked in to meet the family for the initial home visit, but with ALS, I never truly know when I may actually get that call. Everyone’s progression, while always devastating, is always different.

During both of these calls, the loved one on the other end thanked me for the support I provided them and their family member. After almost four years, I still find myself a bit tongue tied when someone thanks me for what I did for their family. Yes, it is my “job”, but it is a job that I have chosen. I take pride in my work and in helping others. But honestly, I think I struggle with what to say back because how do I appropriately and genuinely express my gratitude towards THEM? My appreciation for having just had the privilege of MEETING them and their beloved? The gratefulness of being welcomed into their home during one of the most vulnerable times of their lives? Learning some of the struggles they faced as a family before this disease even became a factor within an hour of meeting? How do I tell the patients and families that I meet how thankful I am that they have given me perspective on what it means to live? Or what it means to die? Is it even appropriate for me to do so? Would they be taken aback when I say it?

How do I adequately and appropriately express to the men and women that I am meeting in my work, that they are the ones providing me with a service? That they are giving me a gift? It’s not wrapped neatly in Tiffany Blue. I cannot hold it or exchange it for a different size. It is a rare gift with no price tag that money could never buy. It is perspective, it is life lessons, it is sorrow, and it is beautiful.

So, from this point forward, I am making a commitment to those I serve to do better at expressing my thankfulness. To the family’s I have worked with in the past, present, and future I want you to know this: While you are facing one of the most difficult times of your life, a time when you may feel like you have lost a sense of who you are, lost the connection to who you were, or a time when you may have no idea who you will be…thank you. Thank you for giving me the privilege of meeting you and for walking alongside you during this journey.

Lighting the memorial candle at the Springfield Walk to Defeat ALS — Heather Burns lighting the memorial candle at the Walk to Defeat ALS.

Heather Burns began working with the St. Louis Regional Chapter as a care services coordinator in 2013. She assists families by educating them on ALS and symptom management, helping to reduce their financial burden by presenting community resources, and offering emotional support for both patients and caregivers. She received her Masters of Social Work in 2017 from the University of Missouri, St. Louis.

Caregiver Confidential: “Laughter Is the Best Medicine”

A few weeks ago, I asked my friend Jessica if she had any ideas for future posts. Jessica replied, “What about the role of laughter in illness?” Initially, I rejected that suggestion. After all, what part of ALS was funny? I reflected back to my husband Brian’s courageous struggle with the disease, and I didn’t recall us sharing any light or humorous moments. However, the more I ruminated on the topic, the more fascinated I became. I was familiar with the old adage, “laughter is the best medicine,” but could this expression apply to patients with terminal illness?

My investigation started with a phone call to my daughter Leah. “Did you and your Dad share any funny moments when he was sick,” I asked? Leah recalled that Brian and his sister Joyce had a good laugh creating silly and outrageous epitaphs for Brian’s headstone during a 2008 visit. My friend Jessica also concurred that Brian made some humorous remarks to her. With my new-found knowledge, or memory jogged, that Brian occasionally expressed humor about his illness and mortality, my interest was piqued. But what did the experts have to say?

In fact, what does “Laughter is the best medicine” mean? According to various sources, this saying refers to the potential health benefits of laughter, including a reduction in pain, anxiety, and fear. Another important health benefit may be the sense of well-being and improvement in mood. According to Cancer.Net, “Laughter can provide a sense of perspective when you are faced with challenging circumstances.”

While researching the role of humor specifically in ALS, I came across an inspiring article from the Washington Times, “Couple Uses Laughter, Love in Fight With ALS.” The following captures the importance of humor and positive outlook for ALS patients and their families: “The amazing thing about Kip? He can’t move a thing on his body. He can’t speak. He can’t breathe on his own. But he’s still so funny—so funny and charming. ALS isn’t an immediate death sentence. Your quality of life can still be fulfilling with this disease.”

In another example, ALS Worldwide published a post, “Humor Is a Great Medicine”, Ken, an ALS patient, stated, “As I continue to fight this ugly disease, joking helps me get through the most challenging times. It is critically important to keep a sense of humor when you have ALS. There are funny and absurd moments to be found every day if you are aware. Humor is what helps me stay positive and it makes this disease more bearable.”

In retrospect, I realize that Brian was being himself despite his disease—a person with a good sense of humor who could laugh at himself or the absurdity of a situation (unfortunately, ALS provides plenty of material). I, on the other hand, never found anything remotely funny about caregiving or ALS. In reference to my earlier anecdote about the epitaphs, I remember feeling appalled and disapproving that Brian and Joyce were engaging in what I perceived as morbid behavior. In reality, I think everyone finds their own way to cope with challenging, life-altering situations; some use humor like Brian, whereas others use escapism and denial, like me. Reflecting back, I wish I had seen the bigger picture, so we could have shared some laughs together, as we did when Brian was healthy. Only now do I acknowledge that humor can be a positive attribute and coping mechanism when facing terminal illness and mortality. It makes us human and allows us to live life to the fullest.

Have you and your loved one shared any funny moments? How do you feel about humor in the context of terminal illness? Please share your experiences and thoughts in the comments section. Let’s continue the conversation.

A Day in the Life at the ALS Clinic – The Berkley Family

Last week, our national organization featured our friend, Carmen Berkley, on their blog. Carmen shared her morning attending the ALS Certified Center of Excellence at Saint Louis University — the only one in our region. We’d like to share it here with you.

The Official Blog of The ALS Association

Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.

Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.

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Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon

Powerful blog post from our friend Pat Quinn, courtesy of WebMD.

By Pat Quinn

When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.

The disease that was supposed to take my strength started turning me into a pit bull. I became obsessed with bringing attention to ALS – local events, community outreach, speaking, networking – I did everything I could think of to make people aware. I can’t lie – I had selfish motives. I wanted to live. I was entering what should have been the prime of my life – I should have been focusing on the joys of finding love and starting a family, not fighting a terminal disease! My fight to add years to my life grew into a passion to fight not just for myself, but for everyone with ALS. That passion got stronger every time I met a new ALS patient. One of those patients was Pete Frates in Boston, whose website I happened to come across in my online searches. Pete was young, a stellar athlete, and diagnosed with ALS a year before me. I emailed, he answered, and soon we formed a special bond that would eventually play a major role in the biggest movement in the history of philanthropy: the ALS Ice Bucket Challenge.

You may not know it, but the Ice Bucket Challenge wasn’t originally created specifically for ALS. It was going around for a number of different causes until one golfer in Florida took the challenge for his cousin’s husband who had ALS. It caught on in that patient’s town, and the power of social media brought it to my attention. (Thank you Facebook!) I will never forget the day I saw a friend from grade school take the challenge and said he was doing it in my honor. I was blown away, but more importantly, it clicked: If this can connect so easily from one individual to another, we might have something here. Excited about the possibilities, I got my closest friends to dump buckets of ice water over their heads and it spread throughout my network – the one I had so worked so hard to build after diagnosis. Pete took the challenge, too, and shared it to his huge network. No one could have imagined what would unfold next. Soon we were right in the middle of a social media phenomenon! Hundreds of likes on every Facebook post. New videos were being uploaded every couple seconds – literally, seconds! It’s one thing to see your family and friends take the challenge. But somehow, every day it got bigger and bigger! The support for ALS I was hoping to create was taking place right before my eyes. As it happened, my head was spinning. It was surreal. Within a week, while you were probably filming your Ice Bucket Challenge in the backyard, so were the biggest athletes, famous celebrities, and even world leaders.

pat-quinn — Taking the ALS Ice Bucket Challenge in 2015

A worldwide movement like the Ice Bucket Challenge doesn’t just happen. It’s not like any of us were sitting in a dark room drawing up blueprints to orchestrate a massive social media movement. I believe that certain things in your life happen for a reason. Not everything, of course (I’m not crazy), but I truly believe parts of your time here on earth happen for a reason. Life presents us with opportunities, and then it’s up to us to make something happen.

Do I believe I was diagnosed with ALS for a reason? YES. Without getting too spiritual, I know God chose me to take on ALS. I have to believe this. It keeps me going. I was young. I was strong. The people I’ve met throughout my life would do anything for me. That kind of network would have the ability to create necessary awareness.

Do I think the Ice Bucket Challenge started in a town 10 to 15 minutes away from where I lived for a reason? YES.

Do I think I reached out to Pete Frates after diagnosis, became friends, eventually leading us to catapult the Ice Bucket Challenge for a reason? YES. There is no doubt in my mind that we met each other to change the course of ALS. It was our job to recognize its potential and make something happen…that’s exactly what we did!

These days, there’s no awkward pause after I tell someone I have ALS. I no longer have to follow up with “you know, Lou Gehrig’s disease,” because people are aware – and that was the reason for it all. The Ice Bucket Challenge allowed me to accomplish what I set out to do: create unparalleled awareness leading to research that will one day make ALS treatable and, God-willing, cured.

I would do anything to go back to being my normal, pre-ALS self. Anything. But I can’t dwell on that. I am facing an undefeated opponent, and I’m going to do everything I can to beat it. I know that ALS may one day take my physical life, but my fight will last forever.

Pat Quinn was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 2013, a month after his 30th birthday. Since then, Pat has become a strong advocate, explaining to others that having no effective treatments or a cure is not acceptable Pat was at the forefront of the ALS Ice Bucket Challenge, which raised over $ 220,000,000 globally. He has spoken before Congress, at companies like Google and Facebook, and at universities across the country. Pat has received many accolades for his advocacy including a nomination for TIME Magazine Person of the Year. To learn more, please visit www.q4tw.com.