Resources for Caregivers

During National Family Caregivers Month, we recognize and thank the everyday heroes who devote their time and energy to taking care of a loved one.  Millions of people around the country take on the role of caregiver for friends and family members; providing care day and night, on the weekends and even on demand.  Many people, especially those that need long-term care, rely on family and friends as their only source of help.  While many take this on out of love and receive satisfaction from caregiving, it can take a toll over time and even cause detrimental effects to the caregiver’s health and well-being.  It is important for caregivers to make sure they are taking care of themselves, even as they are taking care of others.  Below we have compiled a list of resources to help those in our community navigate the world of caregiving:

Websites

ALS Association St. Louis Regional Chapter

ALS/MND Support Group Forums

ALS Association Support Community- Inspire

Voyce

National Alliance for Caregiving

Family Caregiver Alliance

Caregiver Action Network

AARP

Books

Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod

Put Your Mask On First: The Caregiver’s Guide to Self-Care by Dr. Gary Bradt and Scott Silknitter

Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock

Transcending Loss by Ashley Davis Bush

 

Wisdom from Morrie

Morrie Schwartz, a professor emeritus of sociology at Brandeis University, was diagnosed with ALS in the summer of 1994 and passed away in November 1995. He devoted the last year of his life to using his illness to teach others about living and dying. He was an inspiration to friends, students and colleagues—young and old—on dying with dignity. He wrote 75 aphorisms that he called “Reflections on Maintaining One’s Composure While Living With a Fatal Illness”. These aphorisms are the basis of his book,  Letting Go (later republished as Morrie: In His Own Words).

518D2FYBRWL._SX334_BO1,204,203,200_

  • Be clear about what you need and want
  • Ask for it
  • Persist in trying to get it
  • If you don’t get it, know when to give up trying and accept the loss
  • Know you can experience more freedom to be who you really are and want to be because you now have nothing to lose
  • Learn how to combine detachment with involvement, caring with disease, despair with hope, and life with death
  • Let others’ affection, love, concern, interest, admiration, and respect be enough to keep you composed
  • Be patient with and accept your and others’ shortcomings and limitations— again and again and again
  • When you are utterly frustrated and angry, don’t be afraid to express anger or to curse silently, under your breath or out loud if the situation permits. You don’t have to be nice all the time and get people to like you and want to be with you—just most of the time
  • If you need to rail against your fate, do so while you also try to use your situation to enhance and transcend yourself and achieve a higher level of functioning, whatever that may be
  • If you can’t have large victories or achievements, be grateful and celebrate the small ones. Many small ones may add up to a large one
  • Watch for and enhance that which motivates you to be composed and involved
  • Reduce your fear of death
  • Keep your heart open for as long as you can, as wide as you can, for others and especially for yourself. Be generous, decent, and welcoming
  • Be kind and loving to yourself. Befriend yourself. Be compassionate to yourself. Be gentle towards yourself. Do not put others down or criticize yourself continuously
  • Friends and family may see you as less incapacitated than you are because they want you to be “better”. They have this need because they care about you. Accept this, while trying to convey your reality without imposing it on them
  • Whenever a lessening of a physical power occurs, it will always feel to soon. Expect this reaction, and perhaps by preparing for it mentally, you can soften its impact
  • Resist the temptation to think of yourself as useless. It will only lead to depression. Find your own ways of being and feeling useful
  • At some point, be prepared to deal with profound contradictory feeling—for example, wanting to live and wanting to die, loving others and hating them
  • Watch out for emotional, spiritual, or behavioral regression when you are tired, sleepless, or anxious. Try to find ways to avoid that state or get yourself out of it
  • Be aware that you are living in the shadow of increasing dysfunction, discomfort, dependency, and death. Come to terms with this shadow in whatever way you can
  • Allow yourself to be admired— to be an inspiration to others for your behavior, attitudes, and spirit
  • Find a time of the day to face fully your dread, horror, anxiety, fear, rage, and anguish in regard to past, current, and future losses and dysfunctions. Weep and grieve deeply at this time. Once you have honored these feelings, be done with them and go back to your involving life. You may find that you are strengthened by your tears
  • Maintain necessary illusions, but not completely unrealistic ones. For example, to hope that my ALS will reach a plateau or move slowly is realistic, but to expect to be cured is not. Be hopeful, but not too foolishly hopeful

Want some “more-rie”? The New Jewish Theater is starting its 2017-2018 season with a production of “Tuesdays with Morrie”, which has been adapted from Mitch Albom’s best-selling book about his relationship with his professor and mentor, Morrie Schwartz, at the end of his life.  If you’re interested, you can buy tickets here or by calling 314-442-3283.

Tuesdays with Morrie FB Post

Living with ALS: Staying active and staying safe

 

By Elissa Held Bradford, PT, PhD, NCS & Julia Henderson-Kalb, MS OTR/L

Staying active and staying safe are important goals to individuals and families living with an ALS diagnosis. As a person living with ALS you may wish to maintain your independence and participate in activities meaningful to you. This may be taking a trip, going to the park with your grand-kids or being able to go to the bathroom on your own. As a family member, you want to support your loved one’s independence but also his/her safety. As physical and occupational therapists, this goal is our priority too. A common challenge to achieving this goal is falls and concern about falling. This is often complicated by the fact that we may have different perspectives on what constitutes fall risk and independence. However, we can find a happy medium by communicating, planning, and making decisions together. In this short blog post we will discuss falls, fall risk, strategies to prevent falls, fall recovery, risk tolerance and even sense of self to help you stay active and stay safe.

Falls and fall risk

Falls are defined as an unexpected contact with any lower surface. Falls are common in ALS and may result in both minor and serious injury to both the physical and mental self. Physically, fall related deaths associated with head trauma in ALS have been reported at 1.7%.[1] Mentally, falls can decrease your self-confidence and cause you do curtail your daily activities because of concern of falling. Risk of falling in those with ALS has been reported for those who take longer (>14 seconds) to stand up from a chair and walk 3 meters (about 10 ft.) demonstrating weakness in the legs and impaired balance [2]. If you or your loved one has have fallen in the past 6 months, here are some strategies to consider implementing to stay active and stay safe.

Strategies to prevent falls

The Center for Disease Control and Prevention (CDC) recommends 4 key strategies to preventing falls and fall related injuries (https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html, Accessed 5.18.2017).

  1. Talk to your doctor

Talking to your doctor about your falls is important. They can help determine if there are other risk factors besides ALS that may be contributing to your falls, such as medications you may be taking. They can also refer you to see a physical or occupational therapist who can help develop an individualized plan to help you prevent falls. This is important because often your needs are different than others at risk for falls because of the progressive nature of ALS.

  1. Do strength and balance exercises

While strength and balance exercises may not be right for everyone with ALS depending on your fatigue and ability level, evidence in ALS shows moderate-intensity exercise is beneficial [3]. In the healthy older adult, strong evidence supports the role of exercise in fall prevention [4]. In ALS, proper exercise has a role to help you maintain your strength and be more effective in using the strength you do have.

  1. Have your eyes checked

Poor vision can impair your ability to detect and avoid obstacles. While vision loss is not a symptom of ALS, you may have impaired vision for other reasons. Make sure your eyeglass prescription is current.

  1. Make your home safer

This is important in ALS. Make sure your home is free of clutter, including the removal of throw rugs and pieces of furniture that might cause you to trip. Lighting should be bright enough to see your surroundings but not so bright that it impairs your vision. Items used frequently should be within reach. Rails on your steps or a ramp can make it easier to safely enter your home. Outside of the house, consider the environment: are there cracks in the sidewalk or roots/holes in the yard that could create a tripping hazard? Addressing these areas might be necessary.

These CDC strategies are important but for a person living with ALS there are few other key considerations.

  1. Be aware of your environment and yourself

Being aware and mindful of your movements and surroundings is key to making the right choice in the moment to stay active and stay safe. If you are feeling weak, take a rest, and avoid the rocky path.

  1. Trial use of equipment that helps you move

While using equipment can feel like giving in to ALS, it can also be liberating. Find the right fit of enough support when you need it to help balance and save energy, while at the same time building more activity into your day. We often say, ‘We care less if you walk there or roll there, we care more that you get there.’ Don’t let pride or uncertainty stop you from doing the things that bring your life meaning and joy. Equipment such as a walker or wheelchair can keep your world large.

  1. Know what to do in case you fall – fall recovery

Practice getting off the floor with the use of a chair or person to help you, putting your strong leg up first (http://www.webmd.com/healthy-aging/tc/how-to-get-up-safely-after-a-fall-topic-overview#2 ) Remember to check for injuries and ensure it is safe to get up after a fall. If you and your loved one struggle with rising from the floor, call for help from your local fire department or get a lift (Hoyer lift) that can help raise you from the floor.

 Risk tolerance

As we stated in the beginning, we may have different views on fall risk and independence. This is part of our risk tolerance. Risk tolerance is associated with perceived control. Initially if you live with ALS your risk tolerance may be higher because you have greater control on the day to day decisions impacting risk and you experience a greater impact by modifying how or if you do an activity. This can change as mobility becomes more limited and you may rely more on others to help you move. Family members and healthcare providers often have lower risk tolerance because they have less direct control, less direct impact, and may have seen more fall related injuries.  Remember to consider the other perspective and talk out the pros and cons of each decision to maximize both staying active and staying safe.

 Self-identification/Sense of self

Finally, who are you really and what matters most? What is often expressed to us by individuals living with ALS is how hard the loss is – not just physically but psychologically. One of those ways is how the loss of physical abilities in ALS may rob you of the very roles and activities that you use to define yourself as a person – your role as a caretaker or provider for instance, the one who cleaned the gutters, the one who took care of everyone else – your purpose in life. Part of what is hard about making decisions to stay active and stay safe is often a re-examination of your sense of self [5] and purpose. This goes deeper than most conversations about fall prevention but it can be an important one. We encourage you to have these reflections and conversations with yourself and your loved ones. Don’t shy from reaching out to a counselor or your spiritual leader if you are struggling. Your mental self is just as important as your physical self.

Staying active and staying safe is possible in ALS. By knowing your risk for falls, what you can do to reduce your risk, how others may perceive your risk and decisions and finally what is important to you, you and your family can make an informed choice each day that is right for you. Live your life with intent in the ways that matter most to you.

If you want more resources for physical or psychological help, please talk to your healthcare team or visit http://www.alsa-stl.org.

Elissa Held Bradford, and Julia Henderson-Kalb are part of the multidisciplinary care team at the ALS Certified Center of Excellence at Saint Louis University Hospital.


References

[1] Gil J, Funalot B, Verschueren A, Danel-Brunaud V, Camu W, Vandenberghe N, Desnuelle C, Guy N, Camdessanche JP, Cintas P and others. Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study. Eur J Neurol 2008;15:1245-51.

[2] Montes J, Cheng B, Diamond B, Doorish C, Mitsumoto H, Gordon PH. The Timed Up and Go test: predicting falls in ALS. Amyotroph Lateral Scler 2007;8:292-5.

[3] Lui AJ, Byl NN. A systematic review of the effect of moderate intensity exercise on function and disease progression in amyotrophic lateral sclerosis. Journal of neurologic physical therapy : JNPT 2009;33:68-87.

[4] Gillespie L, Handoll H. Prevention of falls and fall-related injuries in older people. Inj Prev 2009;15:354-5.

[5] Charmaz K. The self as habit: The reconstruction of self in chronic illness. The Occupational Therapy Journal of Research 2002;22:315-415.

Bridge the Silence

Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.

As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.

Augmentative and Alternative Communication (AAC) is a solution to replace and/or assist in everyday communication situations. My patient and I discussed AAC, (also known as speech generating devices), but after many trials of different systems, we were back to square one; the picture communication board. We found that the AAC systems available did not meet her needs. They were too complicated for her to use and very expensive. In addition, she did not like the cartoon characters and stick figures that were used to depict a want, need or category.

https://saltillo.com/images/wordpower-60-basic-manual-communication-board-with-blanks.jpg
One type of picture communication board

 

Frustrated that there wasn’t anything currently available that was appropriate for her situation, I set out to create something myself. I designed and created APP2Speak™ (APP2Speak.com) an inexpensive, easy-to-use AAC software application for the iPad. Users can customize pages and personalize lifestyle information by using their own pictures, adding words, phrases and select text-to-speech or record their own voice.

App2Speak
App2Speak

Most people with ALS experience difficulty with speech and movement during the course of their illness. Some individuals will completely lose their ability to speak and to use their hands. The inability to speak is frustrating, emotionally devastating and one of the most challenging obstacles to manage successfully. Technology can be used to help a person with ALS to communicate so they can be an active participant in their family and community life, become more independent, and make medical decisions. These people must completely rely on another method to make all of their ideas, wants, or needs known.

Several months ago I had the privilege of meeting a gentleman who had a great sense of humor. His wife helped him set up the custom pages on APP2Speak™. They took a picture of his mustache and recorded speech output saying, “Can you help me shave?” Another custom picture was a personal mug filled with beer and recorded speech output saying, “beer me”.  Customization is a means to personalize your expression, to show your personality and to connect with family and friends. The gift of speech is worth millions of conversations.

A few weeks ago I had the pleasure of having lunch with a friend I met at the ALS walk last year. I wanted to experience her voiceless world with her! We communicated using my voice (at times) and 2 AAC systems: APP2Speak™ and Talk to Me Technologies device.

Talk to Me Technologies is a computer with Windows platform with speech output software. This AAC system allows my friend to accomplish many things, for example, email, Facebook, internet searches and communication. She also has an iPad with APP2Speak™ software application. She uses APP2Speak™ for communicating in situations when she doesn’t need to have a computer. It’s easy to use and she particularly likes the text-to- speech page. (She was the inspiration for me to add this feature).

Communication is a means to express what we know. It is integral in all facets of life, especially the enjoyment of our relationships with loved ones, our friends and in our participation in everyday activities within our home and community.

For more information on Assistive Technology and Augmentative/Alternative Communications Devices, please click here.  You can learn more about APP2Speak™ by visiting http://www.app2speak.com/index.html.

Looking Back at August

As we officially enter into September, we can’t help but look back at this month and compare it to August 2014.  This August was a busy month filled with events, not unlike past Augusts.  While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation.  We continue to hear stories of what this means to people even three years later.  Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since. 

Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge.  I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant!  But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket!  At that time, I had no real idea what ALS was or why it mattered.  “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others!  To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.

Hamlin IBC
Screenshots from Sabrina Jones and Lester Hamlin’s Ice Bucket Challenge videos in 2014

This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year.  This was a terrifying time for my family.  We were all now forced to learn and know what ALS is.

Hamlin Family

After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS.  Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman.  My mother went above and beyond and collected about 3,000 signed letters!!  She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District.  My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs.  After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL.  Our amazing team, Pattie’s Posse, was able to raise and donate $39,735.  I’m sure I’ve left something out because it’s been a whirlwind!

Patties Posse
Pattie’s Posse at the 2017 Walk to Defeat ALS in Springfield, IL

Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients.  This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!

The diagnosis of ALS isn’t something we’d ever imagined.  However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!

The ALS Ice Bucket Challenge: How It Helped and Why It Matters

Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter.  Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?”  The rest of August became a blur of ice and water – it was incredible.

8-4-17fb-post-e1501782927949.png
A screenshot of our August 4, 2014 Facebook post

How it started

The ALS Ice Bucket Challenge – the largest viral social media craze the world has ever seen – was an organic movement started and carried by the community. It was not a planned fundraising or awareness campaign that The ALS Association created – it was instead initiated by people who were impacted by this fatal disease.

HowitAllBegan graphic
The ALS Ice Bucket Challenge spread

Chris Kennedy, a golfer in Sarasota, Florida, was nominated and took the “ice water” challenge, which was, at the time, not connected with any specific charity. Kennedy then nominated a family member whose husband suffered from ALS, Anthony Senerchia, which was the first time the challenge became associated with ALS and The ALS Association.

The “ALS Ice Bucket Challenge” spread quickly on social media, linking to another person battling ALS, Pat Quinn, whose network of friends overlapped with Pete Frates, a young Boston College Baseball player and team captain, who had been diagnosed with ALS in his 20’s. Frates involvement led to participation by Boston’s athletic community, where it really went viral as professional athletes helped it to cross over into the celebrity realm.

From there – well you’re familiar with the rest – it spread across the nation and eventually went global.  By the peak of the challenge, which was somewhere near the third week of August, nearly 1.2 million videos – including those by Bill Gates, Oprah, George Bush, Jimmy Fallon, Shaquille O’Neal and others – had been posted to social media.  The whole world was talking about ALS.

How it Helped

In addition to the incredible awareness generated by the challenge, the dollars raised made a huge difference to people with ALS – through programs that eased the physical, emotional and financial burdens brought on by the disease.  It also re-energized ALS-specific research and accelerated the search for treatments and a cure.

Monies raised tripled annual research spending, leading to a greater understanding of the disease pathway and potential strategies for new therapies. Funding provided by Ice Bucket Challenge donations supported new treatment approaches in clinical trials, along with the discovery of new genes like NEK-1.

Currently, as a result of Ice Bucket Challenge funds, two antisense drugs targeting the two most common inherited causes of ALS are in or entering into clinical trials.  We’ve formed two new global partnerships – ALS ONE and NeuroLINCS, and we’re actively funding 180+ global research projects in 11 countries.

And any day now, RadicavaTM will be available for prescription use by individuals diagnosed with ALS – the first new treatment for people with the disease in more than two decades.  Produced by MT Pharma and used as a drug to treat stroke in Korea, the FDA took an unprecedented step when it did not require clinical trials of the drug to be conducted in the US, saving years in the approval process.

At The ALS Association, we’ve increased efforts to educate our legislators about the vital needs of people with ALS and potential changes in laws that affect individuals battling the disease. We allocated Ice Bucket Challenge funds to develop an FDA guidance document, which helped to navigate the regulatory pathway for approval of effective therapies. This document has been credited in helping expedite the process of FDA approval of Radicava by reducing obstacles that would limit access to effective treatments.

Learn more about the progress Ice Bucket Challenge donations have funded.

Locally, donations from the Ice Bucket Challenge had an immediate impact on people with ALS in eastern Missouri and central and southern Illinois. It enabled us to increase the amount of medical equipment, nutritional supplements, home modification and adaptive devices for people with ALS, as well as doubled the amount of respite care provided to much-deserving caregivers.

We’ve doubled financial support to our area’s only ALS Certified Treatment Center, located at Saint Louis University, and strengthened partnerships with our affiliated clinics. And, in order to better serve our nation’s heroes – who are twice as likely to be diagnosed with ALS as the general public – we are proud to be participating in a National Veterans Administration initiative, collaborating with clinicians in the St. Louis VA hospital system to establish an ALS specific clinic in our service area.

Why it Mattered

While some people labeled the challenge a flash in the pan, a gimmick, or “slacktivism,” to the ALS community, it was no joke.  Aside from the incredible awareness and the flood of donations, the unprecedented outpouring of support provided hope for many who were living with an ALS diagnosis. We heard from so many of the people we serve who told us that watching the videos made them feel like “the world was on their side, rooting them on.”

One gentleman in particular, Don Stewart, who had fought ALS for seven years, was so touched by the thousands of people posting their videos to social media that he decided to make his own video to thank everyone who had participated in the challenge.  Don, a longtime banjo player before ALS robbed him of his ability to play, needed oxygen to breathe, but decided to go without it for the time it took to express his gratitude.

 

Don died in 2016 after fighting ALS for nine years.  “He may have lost this one battle,” Don’s wife Saundra said, “but we’re still waging the war.”

What you can do

This August, we’d like people to continue talking about ALS.  We know lightning doesn’t strike twice, but we’ve seen what an outpouring (pardon the pun) of attention can bring. We’re asking for your help getting people talking again — about support for families, about the need for research, about what a difference those buckets of ice water made.

During the month of August, we’re asking you to re-post your Ice Bucket Challenge videos and photos to your social media accounts using the hashtag #TBIBC.

With your post, please consider sharing a fact or two about the incredible impact that the ALS Ice Bucket Challenge has had for people with ALS and their families.

Thank you to all of you who participated in the ALS Ice Bucket Challenge of 2014 (and in subsequent years).  You have truly changed the course of this disease forever.  We look forward to seeing your photos and videos throughout August and appreciate your keeping the conversation about ALS on the forefront.  We’re grateful for your support of people and families fighting ALS!

Learn more about ALS at www.alsa-stl.org.

In It For Life

By Dave Van de Riet

As summertime is upon us, communities all over the country will begin to host the Walk to Defeat ALS.  This annual event brings together thousands of people nationwide to walk in honor of or in memory of someone they love.  But that doesn’t tell the full story as to what this Walk means.

About 15 years ago, I had the pleasure to meet a lady who was attending the Walk by herself.  She explained that her husband had just been diagnosed with ALS and she happened to hear about the Walk on the radio.  Other than her husband, she had no family in town and understandably she was very worried about what was to come.  But as we walked, she talked about being overwhelmed by the sight of the crowd there that day.  She said for the first time since her husband’s diagnosis, she felt that she wasn’t completely alone.

There are so many inspiring stories that are part of each and every Walk.  Seeing the hundreds of teams – most proudly wearing colorful shirts adorned with pictures or designs that say why they are there – is always memorable.  You can hear the stories sometimes punctuated by laughter, sometimes by hugs and tears.  But they are always passionate and meaningful and remind you that we are all in this together. For a disease that can be so isolating, how powerful is that?

Last year, I happened to attend our ALS clinic and was visiting with a husband and wife. The husband had been fighting ALS for some time.  But before their appointment began, they wanted to make sure they turned in money that they had raised for the Walk.  In the midst of their battle, they were still trying to make a difference – still trying to help others all through the Walk.  This is part of the spirit that continually makes the Walk more than just a fundraiser.

The Walks have many teams who are walking in memory of their loved ones.  And, sometimes their loved one lost his or her battle long ago.  But to these teams, that’s not the issue.  The issue remains that people are still suffering.  So, these teams gather their families and friends each and every year and strongly say they need to stay in the fight against this disease and stay in it until there is a cure.

Several years back, I was talking with a man who lost his Mom to ALS over 20 years ago.  He was telling me about her and how he drifted away from the cause in the intervening years.  But he had decided that to honor her, he wanted to join the Walk in Springfield, IL because he had seen some news reports about the event and was inspired to reengage.

As he wiped a tear from his eye, he said he wished he had never left the cause.  We told him that all that matters is that he is here now!

The Walk wouldn’t happen without all of the hard work and planning from the ALS Chapter staff and a dedicated group of volunteers.  These two groups of people know firsthand how special this event is; how important this event is.  For many chapters, the Walks are the single biggest fundraiser and potentially the one time during the course of the year where thousands of people are coming together for this cause.  One year at the conclusion of the event, I asked a committee member if he were planning on returning the next year to work on the Walk.  He stopped what he was doing, looked at me and said something that was simple but meaningful at the same time.  His words were “I’m in it for life”.  How eloquent and inspiring his words were and are! They have become the unofficial motto of the Walk staff, committee and the volunteers who are there long before the Walk begins and stay long after it ends.  “In it for life!”

So many people are part of the Walk – each with his or her own story or their own reason for being there.  Those reasons push them to walk for those who can’t.  But there are also many people who can’t be there the day of the Walk but still participate by being a “virtual walker”.  These “virtual walkers” register to participate, raise funds, encourage the participation of others and provide a vital role in the success of these events.  Recently, there was a couple who was unable to be at the Walk but they still wanted to participate.  They were actually in China on Walk day but they had proudly brought their team shirts with them and made sure to wear them while the event was going on at home.  It may have been the first time there has ever been Walk to Defeat ALS virtual walkers at the Great Wall of China – another example of the dedication that so many have!

Recently, the Chapter hosted its annual Walk Kick-Off party.  This event is meant to start the Walk season and energize new walkers and veteran walkers and share ideas to raise awareness and funds and make the Walk the best it can possibly be.  We are always fortunate to have some PALS in attendance.  Their presence is always inspiring as they are dealing with so much.  Yet, they show up because they too are energized and looking for ways to make their teams and the Walk a success.  How can you not step up your own game when you see such passion?

The night of the Kick-Off, I received a message from a wonderful lady who has ALS.  She wanted to let me know why she couldn’t be there as she was having a medical procedure.  But, she assured me, she would be at the Walk because of how important it is.  I’m not sure she understands how much she inspires those around her and is further evidence that ALS will never define her and so many others.

So, as we approach Walk season this year, think of the differences this event can make – the differences YOU can make by joining with those locally and with those across the country.  If you are a veteran participant, we say “thank you”.  If you are new to the Walk this year, we say “Welcome”! Prepare to be inspired by what you witness and what you feel.   The Walk is such a special and wonderful event and together we will strike out ALS.

The Springfield, IL Walk to Defeat ALS is June 10th at Southwind Park, and the St. Louis Walk will be held on June 24th at Forest Park.  Register today at www.WalktoDefeatALS.org


Dave Van de Riet joined the ALS Association St. Louis Regional Chapter’s Board of Directors in 2006 and became St. Louis Walk Chair the same year.  Since 2012, Dave has also served as the Board Chair of the St. Louis Chapter. Dave’s Dad, Ray Van de Riet Sr, was diagnosed with ALS in 1995 and passed away in July 2000.  The entire Van de Riet Family formed their Walk team – The Globemasters – in 2001 and continue to participate each year in the St. Louis Walk to Defeat ALS.