Ring the Bells

By Idelle Winer

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

—Leonard Cohen, “Anthem”

Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.

Brian remained in relatively good health in retirement until October 2008, when he developed breathing problems. He had a setback in late October when he collapsed from shortness of breath. Unfortunately, our daughter Leah had just walked in the front door when this event occurred. We rushed Brian to the hospital, where he remained in the ICU for almost 2 weeks. He was placed on a Bi-PAP machine to support his breathing.

Until June 2009, Brian did well at home. Although confined to a wheelchair and immobile for the most part, Brian could still speak, project his voice, and swallow food (he loved to eat!). He could go for short periods without use of the Bi-PAP, which made it easier for him to communicate and eat. However, due to a decline in his breathing, we had to decide whether Brian should undergo feeding tube placement. Brian did not want any invasive life-sustaining measures, but because he could still speak, he went ahead with the procedure.

Over the next 6 to 9 months, Brian lost his ability to speak clearly. Verbal exchanges that previously took seconds could consume half an hour, and speech required unprecedented effort, given his respiratory difficulties. I looked into a variety of assistive devices and microphones to help project his voice, but this proved unsuccessful because Brian could no longer enunciate, his voice was soft, and the Bi-PAP mask, which he now wore full-time, was incompatible with most microphones.

I recall a conversation in 2010 with Beth Barrett from the ALS Association, in which we discussed various topics, ranging from types of assistive devices to the decision of whether to undergo invasive, life-prolonging procedures. Beth explained that every ALS patient draws a “line in the sand” and defines what constitutes quality of life. In retrospect, the ability to talk and be understood was Brian’s line in the sand.

Photo for Blog #3
Brian and Idelle, July 2007

That brings me back to Leonard Cohen. Brian found joy, solace, and hope in the lyrics of many Cohen songs. As Rabbi Lynn Goldstein stated so eloquently in Brian’s eulogy:

Brian had a verse that he loved, from Leonard Cohen’s Ring the bells [“Anthem”]. He loved the chorus particularly, and quoted it often, especially when things were difficult. This song reminds us that even in the most difficult times, there is a crack and light will inevitably come in. In his last years, there was no way anyone could cure his illness. There was no way for him to return to the healthy individual he had been. But, Brian believed deeply that there was still light, that nothing was perfect, but he would do his very best with the hand dealt him, that he would look for the light, let it in, and enjoy living in that light with those he loved to the very best of his ability, with all his heart, with all his soul, and with all his might.

Brian passed away at home on the morning of August 24, 2010. He was 60 years old.

What challenges have your family faced with ALS? How have you coped? Please share your experiences in the comments section. Let’s continue the conversation.

For more information on ALS and resources for caregivers, please visit www.alsa-stl.org.
You can read more about Idelle and Brian’s journey here.

ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference

An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life.  ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS.  More than $950 million in federal funding has been generated for ALS-specific research since 1998.

Advocacy is especially important now because of the many legislative changes being proposed to healthcare, social assistance, and other areas that impact the lives of people who are living with ALS. Many legislators don’t know about the experiences of someone who is living with ALS or how the disease can impact a family.  That’s why your involvement is crucial – as an advocate, you can help educate the decision-makers who are making determinations about the lives of people with ALS.

Not sure where to start? There’s no special training needed; most of what a good advocate does is intuitive and grows out of a few basic principles.  Here are a few tips to help you change the laws and policies for people affected by ALS:

Do your research.
Visit the House of Representatives websitethe U.S. Senate website,  the Centers for Medicare and Medicaid Services, check out The ALS Association’s Advocacy Action Center, or use digital tools and apps like Countable for policy updates and to track legislation. Learn more about the issues affecting you and your family.

Write, email or call your legislator.
Express your feelings about the issue; use your own words and include your personal experience. Speak or write from the heart, and ask for a response. One personal story can change a person’s mind and heart.

Utilize the media.
Write a letter to the editor of your community newspaper or contact your local anchor. Post something to your social media accounts and spread the word that help is needed on behalf of people battling ALS.

Sign up to become an advocate on our Chapter website, www.alsa-stl.org. Join a community of advocates who have realized significant accomplishments in our nation’s capital through active participation in the process.

Contact our office at 314-432-7257 or by email at advocacy@alsastl.org. We will be happy to help guide you and answer any questions you might have about ALS advocacy.

By continuing to share the ALS story with legislators and putting a face on this disease, advocates can advance legislative and regulatory changes that affect families living day to day with an ALS diagnosis. Decision-making centers around you, the voters. At some point in the legislative process, there will be one letter or one call that breaks the camel’s back and affects change. Make your voice heard and make a difference for people with ALS.

Living with ALS in Rural America

In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist).   Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging.    According to The National Rural Health Association here are just a few reasons why:

  • 53% of rural living Americans lack access to 25 Mbps/3 Mbps pf bandwidth; the benchmark for internet speed according to the Federal Communications Commission.
  •  Lack of high speed internet can be a hindrance for ALS patients in accessing information and communicating with other patients, thus heightening a sense of isolation that most generally is associated with an ALS diagnosis.   Limited technology support can also limit choices to use adaptive devices to help communicate or automate one’s home to overcome obstacles created by ALS.
  • Rural America residents have greater transportation difficulties reaching health care providers and are often required to travel great distances to reach a doctor.
  • ALS specialty clinics provide the best care possible for patients, but often, with ALS travel becomes difficult and patients must rely on their primary physician to coordinate in home services and other community referrals.
  • Rural communities often do not have local neurologists who have ever seen an ALS patient.  Patients often have to be referred to higher populated cities to see a neurologist which can bring on additional stressors for the family. Finding the time to take off work to complete the trip, having an accessible vehicle to transport the patient, or even affording the ever rising price of gas to get to the city can be stressful!
  • Often times, when a family receives an ALS diagnosis, they are referred back to their hometowns for therapies and in home care. Due to lack of agencies who are familiar with ALS, it is hard to find someone knowledgeable about the disease and it gets very frustrating to the patient and their family members.

When you chose to live in rural America, it is a lifestyle, not just a location.  Obstacles exist, but become just a part of everyday living. In my experience of working and living in rural Missouri and Illinois, you find that people tend to rely more heavily on each other and their communities.  Time and time again, I have witnessed neighbors (not just those to the immediate left or right) but entire towns or counties who begin ‘showing up and doing’.  They very quickly fill the care team of an ALS patient and provide a huge support that the family so greatly needs.

This world we live in might not be perfect, but when the human spirit prevails and see communities band together, it can make it feel a few steps closer to perfection.

The ALS Association St. Louis Regional Chapter can connect people with ALS and their families with the local resources they need, including equipment loans, grants to help with ALS-related expenses, transportation services, and access to ALS clinics and clinical trials. Visit www.alsa-stl.org to learn more.

Lori Dobbs is a care services coordinator with The ALS Association St. Louis Regional Chapter.  She has nearly twenty years of experience working with ALS families in the Missouri boot heel, southeast Missouri and the southern Illinois region, where she coordinates in-house services and community referrals. Lori joined The Chapter staff in 2010, bringing with her 12 years of service with ALS families.