Veterans Face Higher Risk of ALS

Existing evidence supports the conclusion that people who have served in the military are at a greater risk of developing ALS and dying from the disease than those with no history of military service. Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military. In fact, a Harvard University research study tracked ex-service members back to 1910 and found that U.S. veterans carry a nearly 60 percent greater risk of contracting ALS than civilians.

Joe Zappa
Joe Zappa, of Collinsville, Illinois, holds a photo of his father.  Joe, also a military veteran, was diagnosed with ALS in 2015.

With your help, our Association has been able to assist military veterans who are fighting ALS.  Some of the efforts your support has made possible:

RESEARCH:
The Association has worked with Congress to establish the ALS Research Program (ALSRP) at the Department of Defense in 2007. The ALSRP is the only ALS research program at the DOD and is focused on translational research, with the specific goal of finding new treatments for the disease. Congress appropriated $7.5 million for the program in 2016, bringing total funding for the program to more than $60 million. This funding has supported 44 ALS research studies which have resulted in 25 peer reviewed publications and, most importantly, the discovery of four potential treatments for ALS.

ADVOCACY:
Thanks to the efforts of The ALS Advocates, key members of Congress, advocates and the Department of Veterans Affairs, ALS has been listed as a disease entitled to presumptive service connection. This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits. These benefits are described briefly below. An overview of benefits available to veterans, survivors and dependents is available from the VA here.

CASE MANAGEMENT:
In-home consultations by an ALS case manager to help assess, plan and facilitate care, and evaluate and advocate for options and services to meet the individual with ALS’s health needs through available resources.

ALS-SPECIFIC HEALTHCARE:
The VA St. Louis John Cochran Division, in partnership with The ALS Association St. Louis Regional Chapter opened the doors to a multidisciplinary ALS clinic this past May.  It offers local veterans multidisciplinary clinical services under the expertise of a team of staff who are dedicated to the care, understanding and treatment of ALS.  Under the direction of Dr. Brian Sommerville, the clinic is held on a bi-monthly basis on the 1st and 3rd Fridays of each month. The Veterans Administration has the ability to provide comprehensive interdisciplinary ALS care that includes not only essential disciplines but also VA-specific programs such as Home Based Primary Care and integrated hospice and palliative care services.

COLLABORATION:
The ALS Association works directly with the Paralyzed Veterans Association to advocate for Veterans living with ALS. The Paralyzed Veterans of America is a congressionally chartered veterans service organization founded in 1946 that has developed a unique expertise on a wide variety of issues for veterans with spinal cord injuries, including ALS.   Benefits Advocates are available to help ensure that you receive all service connected benefits.

Thank you for your support of our nation’s military heroes as they fight yet another battle – ALS. For more information on the link between ALS and the military, and the programs and services available to veterans with ALS, please visit our website.

Telling Children About ALS

A diagnosis of ALS can be frightening and challenging for most adults. You may be feeling angry, confused, sad, or afraid. You may not even fully understand what ALS is or the impact this disease will have on you and your family. You may also not know how to tell others about your diagnosis, what words to use, or how in-depth your explanation should be. Telling other adult family members and friends may be difficult enough, but finding the words to tell your children is often even harder.

As parents and grandparents, a natural tendency is to protect or shield children from the worries and fears of a serious illness in the family. However, do not be fooled into thinking that your children do not know something is wrong, even if you have not told them. Even the youngest child has the uncanny knack of sensing or figuring out that something is seriously wrong. If you have not opened the dialogue about ALS with your child, he/she may not feel comfortable asking or talking with you about what is going on. Without this conversation, your child can live with fears and worries of the unknown. A child’s creative imagination can often conger up scenarios that are grossly inaccurate or terribly frightening. Children can even feel they are somehow to blame for what is wrong and live with unfounded guilt. Therefore, honesty is definitely the best policy when sharing your medical situation with children.

In addition to alleviating children’s fears, honesty about ALS also promotes the notion that ALS is not something about which the child should be embarrassed or ashamed. As new changes develop in your health and abilities, allowing the child to understand and discuss these changes gives him/her a greater sense of trust in you. The only thing scarier for a child than having a parent who is seriously ill is not having a sense of trust and comfort with you, their primary source of security.

Speaking to your child in an age appropriate manner is equally as important as being honest about your disease. Not only do children learn and absorb information differently than adults, but they process information differently based upon several developmental stages in their childhood. Intellectually and emotionally, a preschool age child cannot comprehend what an elementary school child can. The same is true for older age groups; their ability to understand and process information and concepts hinges on their developmental maturity. Therefore, the language you use to explain your disease and the amount of information you provide should be determined by the age of your child. If you have children of varying developmental ages, you should be discussing your diagnosis differently with each child. The key is to provide each of them with information that is age appropriate, while introducing a dialogue for future discussion and building an atmosphere of trust and openness.

In talking with your child, use words that your child can comprehend. Clarify your child’s understanding as you discuss ALS and its impact on you and your family. It is not uncommon for children to misinterpret what you are saying, simply because they did not understand an explanation or comment you have made. Children may also feel guilty, thinking that in some way they have caused your disease. It is important to reassure them that while doctors do not know exactly what causes ALS, we do know it was not caused by anything you or your child has done or said.

Encourage your children to ask questions and respond as honestly as you can.  However, consider the meaning of their inquiries when responding to them. For example, if you should fall and your young child asks, “Are you okay?,” s/he is probably wanting to know if you are hurt by your mishap. An older child, however, is more likely to be associating your fall with your diagnosis and may be asking if ALS will continue to affect you in this way. Gauge the complexity of your answer to the age of your child and the context of the question. Remember that children often learn in smaller “bites” of information, so tailor your responses accordingly. For example, when asked by your child if you will “get better,” you may need to differentiate between a reply about symptom management versus a disease cure. For a younger child, you may want to explain that through managing and accommodating your symptoms, you can move, breathe, or speak “better.” However, for an older child or a child who has more knowledge about your illness, you may need to directly address the fact that there is no cure to stop the disease or reverse the effects it has had on you.

Besides establishing an environment of security and trust, sharing information about your ALS diagnosis should also convey several other messages to your children. Through your honesty and openness, your children/grandchildren will have the basic tools for helping live well together as a family touched by ALS.

  • Be willing to admit that ALS is a confusing and upsetting disease. Explain that it is hard to understand why ALS happens and what effects it will have on you and your family. Acknowledge your frustration as well as theirs.
  • Emphasize that no one is at fault for your getting ALS. Explain that doctors and scientists do not know exactly what causes ALS. Especially point out that nothing you and anyone else did caused your ALS. ALS is not a punishment.
  • Stress acceptance and respect for yourself (or the family member with ALS). Encourage your children to ask questions about this disease and its impact on your life. Also, support their efforts to offer help at what ever level they are able.
  • Offer optimism and hope. Researchers are working every day to find a treatment and/or a cure. They may find positive results at any time.
    • Also, be willing to “live in the moment.” Allow yourself and your family to enjoy the joys of each day as they occur. This perspective offers continual hope for “good” days together as you live with ALS.

Children’s Reactions

You should also be aware that your children’s reaction may be different than you expect. For instance, your child may seem disinterested, or ask questions that seem irrelevant. He/she may abruptly begin playing with toys during a conversation or act out in his/her play. Children may demonstrate a range of emotions, initially being angry or sad, but moving quickly into silliness or happiness. All of these reactions are normal for children. It is important to understand that they are processing as is appropriate for children of their developmental age. Allow your children time to process the information and work through these reactions. Expression of their emotions and feelings is healthy. Your children need to be allowed to accommodate these changes into their lives, developing the coping skills that will help them, while allowing for on-going openness and dialogue about the changes that are occurring.

Other considerations

As your disease progresses, you will want to keep the lines of communication open and help your child understand and prepare for what is happening. Please consider the following issues:

  • Explain changes in your health as they occur in age appropriate terms that your child will understand.
  • Do not assume that your child will react to each of your medical or physical changes. Reassess what your child is thinking and feeling. S/he may not be affected by changes as you think they might; alternatively, s/he may be greatly affected by something that you consider minor.
  • Validate their feelings as normal. Every emotion they have can be “normal.” Help them find positive ways to express these emotions.
  • Recognize that, as your medical condition changes, so will your physical appearance. Acknowledge with your child the social reactions you get and help them to understand that others may react negatively or rudely due to being fearful or uninformed about a disease they do not understand.
  • Talk with your child about issues other than ALS. Ask questions about school, friends, hobbies, television shows, or internet games. Remain an active part of their lives.
  • Explain to your child that your irritability or personality changes may be due to the progression of your ALS. Watch for signs of anxiety or feelings of discouragement from your child; they may be feeling that they are to blame for your negative moods.

References for this article:
BJC Hospice and Supportive Care. A child’s concept of death by Sister Teresa McIntier, R.N., M.S.

BJC Hospice and Supportive Care. Young adults and grief: Information packet by Beth Barrett, MSW.

Fieldman, Laurie B. Presentation handout: How to help children coping with ALS in the family.

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.

Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?

By Idelle Winer

I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.

But first, how did Brian finally tell me that he had ALS? From 2005 to 2007, I observed a slow but steady decline in the use of his right hand. Brian had trouble signing his name, cutting his food, and tying his tie for work and often asked me for assistance. Of course, I suspected that Brian had ALS but did not confront him. (I preferred a state of denial.)

One Sunday in May 2007, we were in the family room, waiting for the arrival of our daughter Leah’s friend Lauren, who planned to store some belongings in our basement over the summer. Just before the doorbell rung, Brian blurted out that his possible diagnosis of ALS had been confirmed. He was concerned that he would be unable to help Lauren move her belongings into the basement and needed to create a credible cover story.

The story we concocted was that Brian fell on our driveway over the winter, resulting in an injury to his right hand. To make the fall appear realistic, he previously purchased a hand brace to cover most of his right hand and fingers and disguise the muscle wasting that was apparent without the brace. (The photo of Brian in my first post shows the brace on his right hand.) Family, friends, and professional colleagues believed this story, allowing us to keep our secret for a few more months, even from our daughter Leah. Brian finally told Leah in July 2007, which was the only time I saw him show emotion about his diagnosis.

leahbrian2
Brian and Leah, May 2009. Last photo of Brian.

After the truth came out, we had our first home visit from Beth Barrett from the ALS Association. Beth’s compassion, knowledge, and support were indispensable to our family’s ability to cope with the many challenges of the disease. We had a true partner and friend in Beth, someone we could rely on.

How specifically did hope manifest for Brian? I think that Brian found peace in knowing his ultimate fate; in other words, having a terminal illness like ALS set him free from the false hope of recovery. His acceptance also provided a model for us, and we took his lead regarding how to respond and think about his diagnosis.

How does hope manifest for your family and loved one? Please share your story in Caregiver Confidential. Let’s continue the conversation.

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

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.

Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.

I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.

When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?

Brian David Winer 7121950-8242010
Brian, July 2007

Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.

For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.

How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and  let’s continue the conversation.

You can send your questions or post suggestions to Idelle at alsastl@alsastl.org. For more information and resources on caring for a person with ALS, please visit alsa-stl.org.

Growing Up With a Parent Who Has ALS: What I Learned

By Kelsey Lester

Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.

So, here is what I learned growing up in an ALS household…

I learned about how fragile life is.

jeffand kelsey
Jeff Lester and Kelsey Lester

Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.

I learned about tenacity.

Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.

Kelsey_and_Jeff

I learned what loving another person means.

Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.

And most of all…

I learned to laugh.

My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.

KelseyLestergradpic
Lisa, Jeff and Kelsey Lester

Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.

For more information on ALS, please visit www.alsa-stl.org.