Caregiver Confidential: Say What?

During your loved one’s journey with ALS, did friends, coworkers, or medical professionals make well-meaning but insensitive comments? Even the most well-intentioned person can utter inappropriate “words of encouragement” and behave in a hurtful manner. Being around terminal illness can make people uncomfortable, and as a result, they unintentionally say the exact wrong thing. As a caregiver, it’s not uncommon to hear, “It’s God’s will,” “Things happen for a reason,” “I don’t know how you do it,” “I know how you feel,” and “Aren’t you relieved that it is all over?”, among others. Isn’t it preferable to be a good listener, do a helpful chore for the family, or give a hug, which are true expressions of kindness and compassion?

Like many of you, I heard some questionable comments during my husband Brian’s 5-year battle with ALS. Let me relate two instances:

  1. After a hospice visit one afternoon, our visiting nurse told me that it would be better if Brian passed away. I was taken back and did not know how to respond to this unsolicited remark. Was she offering her personal opinion, or was there a medical basis for her comment? (I believe it was the former.)
  2. We had some friends over at a time when Brian was losing his ability to talk and be understood. One person commented (in Brian’s presence) that he must have lost some of his mental faculties. Nothing could have been further from the truth, at least in Brian’s case. Sadly, this friend conflated slurred speech from ALS with dementia or diminished mental capacity.

Fortunately, for every awkward, misguided comment, there are wonderful supportive friends, colleagues, and family who stand with you and your loved one and want to help. Actions speak louder than words, and you quickly learn who is and isn’t there for you and your family.

While doing research on what not to say to a caregiver, I came across a 2009 blog post by Fern Cohen, a writer and ALS patient, who addressed this topic from the perspective of an ALS patient. In her post entitled, “What Do I Do? What Do I Say?” (http://alsny.blogspot.com/2009/05/what-do-i-do-what-do-i-say.html), Fern discussed how people’s own attitudes toward serious illness may shape their interactions with an ALS patient, and she shared her coping mechanisms in these situations. Fern’s post helped put some of my experiences with awkward verbal exchanges into perspective in ways that I had not contemplated previously. For example, maybe I misread a well-intentioned but misplaced comment because of the stress I was experiencing that particular day. I now think that the interpretation of these comments may be partly influenced by the stress level in the household and on the caregiver.

Have you or your loved one been surprised by comments from friends or family? How did you respond? 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.

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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.

 

 

Visit www.alsa-stl.org for more information and resources for caregivers of people with ALS.

May is ALS Awareness Month

May is ALS Awareness Month, an opportunity to focus the public spotlight on ALS and gather support for people currently fighting the disease, as well as the search for treatments and a cure. Many people don’t fully understand the impact an ALS diagnosis has on a family, so May is the perfect time to get people talking about what ALS is and what’s necessary to end it once and for all.  Here are a few ways you can raise awareness in your community:

1.  Write a letter to the editor of your local newspaper and help educate readers about ALS and the critical need for support.

2.  Advocate for people with ALS. Contact your legislator and ask for their support on issues which impact people with ALS: caregiving, tax credits, research funds, long-term care, and so on. Sign up to become an ALS advocate and make your voice heard!

3.  Post some facts about ALS on your social media accounts. Ask your friends to share it! Update your Facebook profile with the ALS Awareness frame and recruit your friends to like our Facebook page and follow this blog!

4.  Tell a friend. Tell a neighbor. Tell a co-worker. Start a conversation about ALS and help people understand the impact of an ALS diagnosis.  Share your story.

5.  Support research and access to high-quality care by donating to the fight – either with a one-time donation or recurring gift, or by including The ALS Association St. Louis Regional Chapter in your planned giving decisions.

To help you spread the word and raise awareness about ALS, visit our website where you’ll find lots of information on this disease, as well as different ways in which you can support care, fund cutting-edge research and advocate for ALS-related issues.

Thank you for lending your voice to the fight against ALS this month to help bring awareness and understanding of this devastating disease!

The ALS Association’s Research Program

The ALS Association’s global research program, TREAT ALS (Translational Research Advancing Therapies for ALS), has remained at the forefront of ALS research since its inception in 1985.  We are the largest private funder of ALS research worldwide, and our efforts have led to some of the most promising and significant advances in ALS research.  Our approach is global – the world is our lab – enabling us to fund the top ALS researchers worldwide and ensure that the most promising research continues to be supported.  We fund projects across the research pipeline, from basic research through clinical trials, and our support has led to several potential treatments currently in clinical trials.  Since the ALS Ice Bucket Challenge in 2014, we have tripled the amount we spend in research every year- from $6 million to over $18 million – and we are committed to maintaining – and even increasing – this level.

2017 Research

The ALS Association supports a wide breadth of specific fields of study that are critical to advancing ALS research.  We are always on the lookout for the next cutting-edge field to invest in.  Below is a breakdown of some of the fields of study we are focused on:

Biomarkers The ALS Association is committed to biomarker discover, as their potential is immense.  Identifying biomarkers is vital to improving diagnosis, following disease progression, tracking response to therapy, and make clinical trials more efficient.  Our support of the TDP-43 Biomarkers Grand Challenge Program is just one example.  Dr. Timothy Miller and his team at Washington University in St. Louis won this challenge and are working to develop a biomarker to track TDP-43, a protein found in almost all cases of ALS.  Learn more about the project here.

Assistive Technology The ALS Association is working to develop accessible, portable devices for people living with ALS, in order to help them maintain a high quality of life.  The ALS Assistive Technology Challenge winners we announced in December 2016 are dedicated to achieving this! Learn more about the challenge.  Read about the winners here.

Environmental Factors Multiple factors in one’s lifestyle and surroundings, such as smoking and military service, are the only known ALS risk factors.  The ALS Association champions multiple efforts to better understand these risk factors to better understand these risk factors and drive discovery of other factors that may contribute to ALS.  Learn more about environmental factors.

Natural History Studies These studies are important to understanding the natural disease course of familial (inherited) ALS.  The ALS Association is supporting several natural history studies of SOD1 and C9orf72 ALS, which are critical to helping inform patient care and clinical testing of new treatment approaches.  Learn more about current natural history studies here.

Clinical Studies The ALS Association supports clinical management grants to improve the lives of people living with ALS and their caregivers, along with clinical trials to accelerate treatments through the drug development pipeline.  Find more information on clinical studies and current studies in clinical trials here.

Cognitive Studies There is a great deal of evidence that cognitive impairment is connected to ALS, such as overlap with frontotemporal dementia (FTD).  The ALS Association is committed to improving understanding of why and how this connection takes place.  For more information on FTD, see our past blog post.

Drug Development The ALS Association is supporting development of several different treatment approaches, including small molecules, stem cells, and gene therapy.  Our early support of antisense drugs in 2004 has paid off!  Antisense therapies have already proven effective in spiral muscular atrophy (SMA), are in trial for SOD1 and are starting in the near future targeting C9orf72.  Learn more about drug development here.

View all of the ALS Association’s scientific focus areas and even more information about current research at http://alsa.org/research.

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.

Coping with the “New Normal” after an ALS Diagnosis

Everyone responds differently when life throws him or her a curve ball, and an ALS diagnosis might be the fastest curve ball life has to offer.  Some respond by “hitting that ball back” and go on with life fairly quickly, while others may need more time to adjust to the news and come up with a plan.  There is no right or wrong way to feel when faced with this diagnosis.

Most of us have heard about the stages of acceptance, grief and loss.  These stages describe different reactions one might have, including denial, anger, bargaining, depression, and ending with acceptance.  Acceptance does not mean giving up on hopes or dreams.  It should be the first step in making the most of life with ALS.  There is much to be done to help someone live a fuller and enjoyable life.

The following tips, adapted from Neurology Reviews: October 2010, may help someone cope with ALS:

  • Take Time to Adjust. Being diagnosed with ALS is nothing less than shocking.  Take time to absorb the information and understand what to expect.  Allow yourself time to work through emotional reactions, such as denial, anger, sadness and grief.
  • Be Hopeful. Attitude is everything.  Try to remain hopeful. Be positive. Don’t let ALS take away your spirit. Don’t let your illness define who you are.  Try to think of ALS as only one part of your life, not your entire identity.
  • Think Beyond Physical Changes. You can look at ALS as a slow death or as an opportunity to enrich your life and make the most of the time you have: time to foster deeper connections with family and friends and broaden your spiritual awareness.
  • Seek Early Treatment.  Many symptoms can be reduced with simple treatment.  Often these treatments can ease the effects of disease progression.  Ignoring manageable problems can make a difficult situation worse.
  • Take Charge of Your Care. Physicians, other professionals on your healthcare team, and family can help with healthcare decisions, but remember that you are in charge throughout your illness.  Don’t let others dictate your care. If you healthcare provider hasn’t already done so, request that he or she refer you to the nearest ALS clinic.  Your providers will also be able to help you in other ways in the future, such as signing your application for disability and social security benefits.
  • Engage Family and Friends.  Life with ALS can trigger overwhelming emotional reactions.  Keep lines of communication open, so that you are comfortable expressing your feelings. Encourage your family and friends to express their feelings as well.
  • Join a Resource/Support Group. You don’t have to face this alone. You can get a lot of support and useful information from others who have faced this disease. Your family and friends may also benefit from a support group devoted to caregivers.
  • Plan Ahead. Planning for the future allows you to be in control of decisions about your life and your care. Work with your healthcare team and family to formulate plans for life-extending treatments and end-of-life care. Make a living will and discuss it with your family.  See Aging with Dignity for more details on living wills and Five Wishes.  You may also want to consider formalizing advance directives and assigning power of attorney.

The information from this blog post was excerpted from the Living with ALS Resource Guide: After the Diagnosis: Coping with the “New Normal”.

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.
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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.

The National ALS Registry

The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S.  The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research.  The purpose of the registry is to learn more about who gets ALS and what causes ALS.  This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.

Get the Facts- ALS registry

The National ALS Registry also includes a Biorepository that stores samples for future research.

Biorepository

Recently, the Registry was used for the first time to recruit patients and caregivers into a landmark patient-focused drug development survey that captured important information on the burden of ALS across multiple dimensions, including: symptom experience, quality of life, health care resource utilization, and emotional well-being.  Other important advances made possible by the ALS Registry include attaining a 96 percent enrollment rate for registrants to be notified about ALS research opportunities (more than 100,000 such notifications being sent for over 30 clinical trials) and research funding for 13 institutions to examine what factors may contribute to ALS.  ATSDR recently released the third report on the results of the data gathered by the National ALS Registry.  You can read the report here.

If you are interested in joining the National ALS Registry or learning more about the latest news from the Registry, please visit https://www.cdc.gov/als/.

It is vital that the National ALS Registry continues to be fully funded.  Congress has started work on the Fiscal Year (FY) 2019 appropriations process and Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a bipartisan Dear Colleague letter in the House of Representatives (see it here), urging their colleagues to support $10 million in funding for the Registry.  The deadline for this letter has passed, but there is still more you can do to help make sure your Representatives are aware of the importance of issues affecting people with ALS.

Visit the ALS Association’s Advocacy Action Center to learn about the latest updates and news about legislative and regulatory issues being addressed by The ALS Association and to sign up to receive alerts when your action is needed to support people living with ALS.