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.

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.

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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.

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?

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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.

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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.

Practicing Relaxation with the Body Scan

Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois.  She has been practicing massage and a variety of different therapies since 1989.  We are excited to have her contribute to ALS Connect as a guest blogger. 

The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece  from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.

Being diagnosed with a terminal illness, especially one as progressively debilitating as ALS is, can cause deep fear and anxiety and enormous amounts of stress. But there are ways to combat those emotions and diminish that stress — research shows that individuals can make a quantitative change in their mind by actively committing to a mindfulness practice. As an educator of wellness and meditation for the last 25 years, I know first-hand that lowering your stress level and getting control of your mind and thoughts can make a huge difference in your life. In fact, some mindfulness practices can help with anxiety, insomnia, and have the ability to slow your heart rate down which in turn can make you feel more relaxed.

Our autonomic nervous system – which controls your heart rate and breathing among other things – is divided into two parts: one part, the sympathetic side, is wired for fight/flight and the other, the parasympathetic, for rest and relaxation. When we are stressed our bodies don’t know the difference between fleeing from a saber-toothed tiger or the worry that we are feeling on a daily basis. It triggers the same stress response. When we  deal with stressful situations — sometimes many times a day —  physical symptoms such as insomnia, anxiety, etc. result.  The Body Scan helps to raise our parasympathetic side and lower the sympathetic side of the autonomic nervous system.

As you begin your mindfulness exercise and practice the Body Scan,  it is important to think about a short mental statement or a deep desire and repeat it before and after your practice. It could be a desire to do something different or change something in your life. It should express your commitment to keep a powerful and positive force alive. It is not something that will happen in the future; it is something you believe is happening in present moment. It is profound and heartfelt. Yogis call this “Sankalpa”.

The Body Scan (Learn your body scan by having someone read the body scan to you until you can do it yourself. Go through each step very slowly, pausing to really feel each of your body parts)

Getting Started:

Lay down in a comfortable position where you will not be interrupted for at least 20 minutes. You can do this exercise sitting up, too. Once in a comfortable position, ask yourself if you can make yourself 10 percent more comfortable and shift your body until you are the most comfortable you can be. Try to separate your limbs by keeping your legs spread apart and your arms and hands out to the side with palms up. Try not to move for at least 20 minutes. Take some nice deep breaths until you feel your body beginning to relax and settle down.

Setting your deep desire

Set your Sankalpa or deep resolve. For example, “I am safe and I am whole, I am at peace, I am already whole and already healed, I will achieve total health.”  Repeat this over and over. Your resolve or deep desire isn’t coming so much from an intellectual place as much as a deep place in your heart. One of the intentions of your Sankalpa is to change your direction of thinking on a daily basis and change your perceptions to make your life more balanced and healthy.

Feet

Once you are settled bring your awareness down to your feet. Feel your feet. Notice the way your feet make contact with the floor. Are your shoes and socks covering your feet? What do they feel like touching your skin?  Bring your awareness to the top of your feet, the bottom of your feet, the sides of your feet. Bring your awareness to your big toes, your baby toes. Notice heat, pressure. Any sensations you may feel in your body.

Ankles

Notice your ankles. The front and back of your ankles. The inside and outside of your ankles.

Calves

Up through your calves. Get a sense of your calves three-dimensionally. Sense your whole calf. Not just the front of your calf or just the back of your calf.

Knees

Bring your awareness to your knees.

Thighs

Bring your awareness to your thighs. The front of your thighs. The back of your thighs, the inside and outside of your thighs. Bring your awareness up your thighs and notice the connection of your legs into your pelvis.

Pelvis

Notice the weight of your pelvis as it makes contact with the floor, bed or mat.

Torso

A lot of things are happening in your torso: digestion, elimination, and breathing.  Your heart lives in your torso, a little left of your sternum in your chest. What do you notice? Can you feel your torso spreading out as you breathe in and then shrinking back as you breathe out? Can you notice anything about your heart? If not, that’s ok. There are no expectations. If you find yourself getting confused by any of this just lay there and breathe in and out and let everything else go.

Shoulders

Bring your attention to your shoulders, your upper arms, your forearms, your wrist and your hands.

Neck

The skin around your neck.

Face

Your face…can you sense the air moving in and out of your nostrils. Can you notice the air that is coming into your nose is cooler than the air coming back out? Notice your eyes and your eye lids that are closed. Your mouth and taste inside your mouth.

Scalp

Notice your scalp and your hair.

Ending

Notice as much as you can your whole body and the sense of what it feels like to be in your whole body. Laying there not segmented out but a whole body. Lay there enjoying the stillness. If you can notice how the stillness supports you and surrounds you. When you are ready slowly begin moving your fingers and toes and when you are ready slowly open your eyes. Good job!!!

It takes courage to live in our bodies and to listen to our hearts in a still and quiet way. Take your practice slow and this month just practice your body scan anytime you are feeling stressed or before you go to bed. Let me know what you notice and what is changing in your life as you begin to integrate relaxation exercises into your life.

Peace, Holly.

Eight Questions with Andrew Godbey, M.D.

Dr. Andrew Godbey is a Board Certified Neurologist and the Medical Director of the ALS clinic at Saint Francis Medical Center in Cape Girardeau, MO.

Can you tell us a little about yourself?

I grew up in Baltimore, MD and basically moved to the Midwest while attending Washington University for my undergraduate education.  I left for a year and a half to get a Master’s of Science in Public Health at Tulane University.  I followed this degree with Medical School at St. Louis University, neurology residency at Washington University, and neuromuscular fellowship at Washington University.  I moved to Cape Girardeau in 2010.

Why did you decide to become a neurologist?

Neurology is a discipline where you try to determine where the problem is located, or localization.  I enjoy this thought process and the neurological examination.  Neurologists still perform a thorough examination and that is basic to treating patients.

How long have you been treating people with ALS?

I have been working with ALS patients since my neuromuscular fellowship training at Washington University in 2009.

How is ALS diagnosed?

It is diagnosed based on the neurological examination in conjunction with neurophysiology testing (electromyography and nerve conduction studies).  The evaluation also entails ruling out other diseases that can mimic ALS such as autoimmune disorders and structural disease (problems with the brain or spine) which requires imaging of the central nervous system.

How is the ALS clinic at Saint Francis Medical Center different from a typical clinic?

The clinic is designed to involve multiple disciplinary evaluation-respiratory therapy, physical therapy, speech therapy, ALS coordinator, and case coordinator as well as an evaluation by a neuromuscular specialist.  Patients are evaluated all in one area so they do not have to travel to multiple visits/sites to get the comprehensive evaluation.

What are some of the exciting developments in research in ALS?

Obviously the most important developments include new treatments.  The FDA just recently approved of Edaravone (RadicavaTM) for ALS.  Also, there have been exciting developments in regards to the understanding the pathology of ALS.  The discovery of the NEK-1 gene and its role in the development of ALS.  We need to understand how one develops ALS in order to develop effective therapies for treatment.

What are the most common misconceptions about ALS?

The misconception that ALS is caused by infections. There has been no evidence that if one gets an infection such as Lyme disease, someone is going to develop ALS.  Also, ALS only affects muscle strength and motor activity.  ALS has also been associated with mild cognitive impairment in about 20-30% of patients.

What is the most rewarding thing about working with people who have ALS?

The most rewarding experience is being able to help people maintain a high quality of life as long as possible.  In the clinic, patients receive help with not only medications but more importantly they are seen by multiple therapies, which can help improve their quality of life (i.e. more comfortable wheelchair, supplementing diet, etc.).  Also, it is rewarding to not only help the patient but help their caregivers with coping strategies and with discussing concerns and questions.

The ALS Association St. Louis Regional Chapter supports four patient centered, multidisciplinary, ALS-specific clinics which provide compassionate care in a supportive, family-oriented atmosphere.  Visits typically last more than two hours, with patients and family members remaining in one room, while specialists orbit around them, consulting about ways to manage all aspects of health to ensure better quality of life. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

Do you have a question for Dr. Godbey?  Or a topic that you would like to see us cover in an upcoming blog post?  Email us at alsastl@alsastl.org — we’d love to hear from you!  And, for more information on ALS and multidisciplinary care, visit alsa-stl.org.