In the News
ALS Advocacy: Enormous Win Ending SSDI
The ALS community earned a hard-fought victory in December with passage of the ALS Disability Insurance Access Act, ending the five-month waiting period for people with ALS to start receiving their Social Security Disability Insurance (SSDI) benefits. The ALS Association has been tirelessly engaged in building support for this policy in Congress from day one, developing the bill with congressional champions and working with ALS advocates over the years to introduce the bill and lay the groundwork for this win.
Since the legislation was first introduced in 2016, ALS advocates have reached out to members of Congress more than 54,000 times through phone calls, letters, in-person meetings, and via social media. This campaign to educate lawmakers and the public about the rapid progression of ALS and the long delays in diagnosis contributed to a steady increase in support for the legislation. People living with ALS do not have five months to wait for SSDI benefits they have worked for over the course of their careers.
When legislation to waive the five-month waiting period was first introduced, it had just a single sponsor in the House of Representatives. Thanks to the hard work and determination of advocates everywhere, the bill gained 20 Senate cosponsors and 55 House cosponsors by the end of 2016. When a new Congress convened the following year, the bill was reintroduced with 33 original cosponsors in the House and Senate. ALS advocates continued to work, educating lawmakers and building momentum to the point where 67 Senators and 305 members of the House supported the bill just two years later in 2020.
“A bill can look like it was easy to get done when it passes 96-1, but that doesn’t mean that the pathway was easy. This has been years, and years of effort,” said Sen. Sheldon Whitehouse (D-R.I.) after the Senate voted to pass the bill he cosponsored. In the four years since this bill was first introduced, less than 3% of all bills have passed into law.
The ALS Association is incredibly grateful for all of the ALS advocates, partners, and ALS organizations around the country who joined us in the fight to make this landmark legislation a reality. The passage of this bill shows the ALS community that their voices are truly being heard.
Quality of Life Grant Program
The ALS Association Mid-America Chapter’s Quality of Life Grant program assists with the care and needs of those living with ALS in Kansas, Missouri and Nebraska. The $400 grant reimburses ALS families for their needs in respite, communication, home modification, access to medical care and for special circumstances.
The Quality of Life Grant will provide a maximum benefit of $400 annually to a person living with ALS in Kansas, Nebraska or Missouri
Below are some of the ways the grants are being used:
1) Respite: professional home care, Patient Care Sitter (cannot be a resident of the home), house cleaning services, lawn and yard care/snow removal.
2) Communication: communication device, computer software or apps for communication, alert devices, and adaptive switches for tablets or computers.
3) Home Modification: building of ramps (material & labor), bathroom accessibility (material & labor), doorway accessibility (material & labor), and grab bar accessibility (material & labor).
4) Access to ALS Clinic and/or hospitalization: mileage to and from ALS clinic and/or hospital, rental of vehicle and/or car services to get to and from ALS clinic and/or hospital, lodging for ALS clinic and/or hospital (1 room, 2-night limit), and incidentals for ALS clinic and/ or hospital (i.e. tolls, parking fees, meals).
If you are interested in this program, please contact your local ALS Navigator and they will send you the link to the online application form to complete. Or if you prefer, your local ALS Navigator can mail you a physical copy of the application.
High Calorie and Easy to Chew Recipes
Once ALS takes away a person’s ability to swallow safely, maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers.
For people living with ALS, it is important to ensure that a meal is not only nutritional and tasty, but also easy to swallow. To help maintain a healthy and nutritious diet, there are many tactics to consider as you plan your meals. For example, choose foods that are normally soft that require little chewing, such as bread, rice, pudding, hummus, soft boiled eggs, and apple sauce. “Lubricating” foods can make it easier to swallow dry foods using sauces, gravies, dips, and dressings, all of which are often plentiful with holiday recipes.
Modifying the consistency of food using a blender or food processer can help make foods easier to chew and swallow, turning them into a pleasantly thick liquid by blending with water, milk, almond milk, or soup.
While adjusting to a “new normal” of eating with ALS can take a little creativity at times, there are many delicious and healthy recipes to consider. Below are a few high calorie and easy to chew recipes.
•1 flour tortilla
•1 can beans
•1 dollop of sour cream
•1 tablespoon salsa
•1/4 cup shredded Monterey Jack or cheddar cheese
•1 splash whole milk
1. Spread the center of the tortilla with 1 Tbsp drained and rinsed canned beans mashed to a paste with a little sour cream.
2. Sprinkle it with a Tbsp of salsa and ¼ cup of shredded Monterey Jack or cheddar cheese.
3. Scramble 2 eggs (using a splash of whole milk) and spoon them across the center of the tortilla.
4. Roll up the burrito, tucking in the ends.
5. Heat it in the microwave for about 20 seconds, just long enough to melt the cheese. Serving size: 1
•1 pound ground beef
•3/4 -1 cup plain fine bread crumbs
•3 tablespoons dried onion flakes
•1 teaspoon salt
•1 heaping teaspoon dried parsley
•1/4 teaspoon black pepper
•1/8 teaspoon poultry seasoning
•1/8 cup ketchup
1. Mix ground beef and bread crumbs in large bowl.
2. Mix seasonings, ketchup, and egg into beef and crumb mixture.
3. Add enough milk to bind it all together and mix until smooth consistency.
4. Spray loaf pan with cooking spray
5. Put meat mixture in loaf pan.
6. Bake at 350 degrees for about 45 minutes or until cooked through.
Chilled Avocado Cucumber Soup
•1/2 medium cucumber
•1 ripe small avocado
•1 garlic clove
•2 tablespoons fresh lemon juice
•1/2 cup plain yogurt
•1/2 cup cold water
•1/2 cup ice cubes
1. Peel cucumber and cut into 4 pieces. Quarter avocado, removing pit, and peel. Cut scallion into large pieces.
2. In a blender puree all ingredients until smooth and season with salt and pepper. Serving size: 2
Strawberry Cheesecake Quesadillas
•4 (8 inch) flour tortilla
•2 tablespoons softened cream cheese
•2 tablespoons strawberry jam
•1 tablespoon confectioners’ sugar
1. Spread one side of 2 tortillas with 1/2 the cream cheese. Spread equal amounts jam over cream cheese. Spread remaining 2 tortillas with remaining cream cheese, and place on top of first 2 tortillas to form quesadillas.
2. Place quesadillas in a skillet sprayed with cooking spray over medium heat and cook 5 minutes on each side, until golden brown.
3. Serve sprinkled with confectioners’ sugar.
We Will Adapt
If there’s one thing we’ve learned about humans during this pandemic, it’s that we have the ability to adapt. If you would have told us a year ago that in 2020 we would be wiping down groceries, students would not be going to school, restaurants would close their dine in service and doctors’ visits were going to be done via telehealth, well, we probably would have laughed. But it happened. And look, we adapted! We wear masks everywhere, we stay a bicycle length away from one another and many of us are working from home.
Holidays can be highly stressful under the best of circumstances, forcing us to juggle family, friends, gatherings, and gifts. Throw in a global pandemic and it can be downright overwhelming! We have learned over the months that it’s the family gatherings and social events that often are responsible for spreading the virus. Unfortunately, that means that we should be making some changes this year, especially to protect vulnerable relatives with ALS. It may seem hard to manage a celebration, but the holidays can still be great time to cultivate a spirit of gratitude and to re-focus on the things that are most meaningful.
Below are a few ideas to help you plan for the holidays:
1. For those who can, ask friends and family to quarantine 14 days before the gathering. No in-person school or work.
2. Consider a meal drop off or a recipe exchange of your family’s traditional dishes.
3. If the weather cooperates, meet outside.
4. Try a Zoom holiday.
It is difficult to change traditions. However moving forward with new traditions is one way for loved ones to build their resilience and potentially emerge even stronger together, even via Zoom!
This year may look different but, The ALS Association Mid-America Chapter wishes you and your family a safe and happy holiday season! However you decide to celebrate, remember, we made it through Easter, Independence Day and Thanksgiving. We are humans. We will adapt.
Thank you Clinic Teams!
As the year wraps up and we look forward to 2021, The ALS Association Mid-America Chapter would like to thank the ALS Treatment Center teams for their incredible work, collaboration and dedication to serving the ALS community.
There are four clinics and treatment centers located in The ALS Association Mid-America Chapter geographic service area. They are located at The University of Kansas Health System, Nebraska Medicine, the University of Missouri Health Care and CoxHealth.
The ALS Association Mid-America Chapter hosted its 3rd ALS Clinic Retreat on Friday, March 6, 2020. Over 60 members of all four of the Chapter’s clinics and treatment centers attended.
The retreat focused on best practices for the clinic experience as a whole, as well as within each individual discipline. Attendees participated in discipline-specific breakout sessions. These groups focused on developing care flow charts – with the presenting symptoms of ALS, interventions of care (best practices), challenges to those best practices, and care plans adapted from those challenges.
Almost immediately following the ALS Clinic Retreat, the effects and challenges associated with the COVID-19 pandemic were felt throughout The Chapter.
However, through the diligent, collaborative and caring efforts from the clinic teams, people living with ALS continued to be served. The clinic teams’ heightened communication, as well as telemedicine clinic options has allowed people living with ALS to continue to attend their clinic appointments, whether it is in-person or via Zoom.
Our gratitude and appreciation go out to all of our clinic teams that have adapted quickly to these changing times to continue to provide a high level of service to the ALS community. We are grateful for all of the teams and their continuous collaboration with The Chapter.
2020 Events Recap
Wow! That’s the only way to describe this year in review of events! The year began with A Night of Hope. The gala was held on Friday, March 6th at the Kansas City Convention Center and raised over $213,000 to support the fight against ALS. Attendees bid all night long on wonderful items such as dinner dates, home appliances, and Kansas City Chiefs memorabilia. During the program, Martie Cordaro was honored with the George Brett Award for Commitment for his long time support of The ALS Association Mid-America Chapter. The Tom Watson Award for Courage went to Tony Vick, who has continued to fight ALS with strength and courage. It was a perfect evening to celebrate hope!
The second event of the year was The 37th Annual Joe McGuff ALS Golf Classic Presented by Davis, Bethune and Jones. The golf tournament was held on June 22nd at the Nicklaus Golf Club at LionsGate in Leawood, Kansas. Local celebrities Tom Watson and George Brett, along with other celebrities joined golfers to raise money towards the fight against ALS. The golfers enjoyed a beautiful day and raised over $116,000 in the process!
The Walk to Defeat ALS was celebrated differently this year. Instead of gathering all together for The Walk, we asked all our friends in Nebraska, Kansas and Missouri to host their own mini walk celebration. We called it the 2020 #WalkYourWay to Defeat ALS.
We had companies gather their employees and walk on a warm summer Saturday morning. We had families gather for picnics and told stories of love and commitment. We had parades, caravans, and decorated bicycles. We saw sidewalks covered in messages “Beat ALS”, “Walking for Grandma” and others. It was so exciting to see so many people celebrating, in their own personal way.
Walkers celebrated, as well as raised funds to support the fight against ALS. Throughout the three-state service area, The Chapter’s “Walk Your Way” events raised a total of $807,610!
Although events looked differently in 2020, we are beyond thankful for everyone who participated in some way! All of the funds raised from the events will help The Chapter continue to offer a wide range of services to people with ALS and their families, free of charge.
Living with ALS Resource Guides
The ALS Association’s Living with ALS Resource Guides are educational materials designed to inform and educate people about ALS in a comprehensive format. They address many of the common concerns and issues that face people living with ALS.
Reading all 12 resource guides at one time can be overwhelming to persons with ALS and their families. We highly recommend that you only access the information that pertains to your present circumstances.
All resource guides are available for free download at: www.als.org/navigating-als/ resources/living-als-resource-guides.
Resource Guide 1: What is ALS? An Introductory Resource Guide for Living with ALS
This resource guide provides an overview of ALS, what it is, and how it affects your body. It provides information on what kind of resources are available to help you deal with ALS more effectively.
Resource Guide 2: After the ALS Diagnosis: Coping with the “New Normal”
This resource guide addresses the psychological, emotional, and social issues that you must face when your life is affected by ALS. It provides information on how to cope with the many lifestyle changes and adjustments that occur when you live with ALS.
Resource Guide 3: Changes in Thinking and Behavior in ALS
This resource guide addresses how thinking and behavior may be affected by ALS and how these changes can impact disease course, symptom management, and decision making.
Resource Guide 4: Living with ALS: Planning and Making Decisions
This resource guide reviews areas where careful planning and decision making will be required and will provide you with resources to help you and your family plan for the future.
Resource Guide 5: Understanding Insurance and Benefits when You Have ALS
This resource guide provides strategies and helpful hints to better navigate health insurance and benefits. While understanding insurance and benefits may feel overwhelming, the guidelines outlined here should help simplify the process for you.
Resource Guide 6: Managing Symptoms of ALS
This resource guide discusses a variety of symptoms that may affect you when you have ALS. As the disease progresses, various functions may become affected and it is helpful to understand potential changes so that you know what to expect and how to manage these new changes and symptoms.
Resource Guide 7: Functioning When Mobility is affected by ALS
This resource guide covers the range of mobility issues that occur with ALS. It discusses exercises to maximize your mobility, as well as how to adapt your home and activities of daily living to help you function more effectively.
Resource Guide 8: Adjusting to Swallowing Changes and Nutritional Management in ALS- This resource guide will help you understand how swallowing is affected by ALS and what you can do to maintain nutrition for energy and strength and to keep your airway open.
Resource Guide 9: Changes in Speech and Communication Solutions
This resource guide covers how speech can be affected by ALS and explores a variety of techniques, technologies, and devices available for improving communication. By maintaining communication with others, you continue to make a significant difference in their lives, while retaining control of your own.
Resource Guide 10: Adapting to Changes in Breathing When You Have ALS
This resource guide explains how breathing is affected by ALS. Specifically, it will teach you the basics of how the lungs function, the changes that will occur, and how to prepare for the decisions that will need to be made when the lungs need maximal assistance.
Resource Guide 11: Approaching End of Life in ALS
This resource guide examines thoughts and feelings about dying and end of life. Approaching end of life is difficult and support is critical to help sort out feelings, expectations, and plans. By talking to friends, family or professionals, and planning and communicating your wishes, you can help prepare for the best possible end-of-life phase.
Medicare and Open Enrollment
The Medicare Annual Election period (AEP) is an open enrollment period running annually from October 15th to December 7th. During this time, you can switch to, drop, or add a Medicare Advantage (Part C) or Prescription Drug (Part D) plan or add Medicare GAP coverage. This is an important time-frame that gives current Medicare beneficiaries time to evaluate their options and ensure that the coverage they select makes the most sense for their health challenges and their wallet in the year ahead.
Don’t assume something that was covered last year will continue to be. Plans change from year to year, so be sure to check that your providers, pharmacies, and prescriptions will be covered.
You can seek help through a State Health Insurance Assistance Program (SHIP) which offers free insurance counseling for Medicare beneficiaries. Find your local SHIP at https://www.shiptacenter.org/.
The ALS Medicare Resource Line
The ALS Medicare Resource Line is a valuable resource designed to provide individualized case management assistance for those diagnosed with ALS. The ALS Medicare Resource line provides assistance with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact access to care.
At no cost to you, The ALS Medicare Resource Line’s case managers are here to help address any roadblocks to access and affordability.
Enroll into Appropriate Programs
• Provide eligibility, enrollment and appeal navigation into Medicare
• Evaluate eligibility and facilitate application to charity care and discount programs
Reduce Financial burden
• Find local, regional and national resources for financial support and for practical needs such as housing, utilities, transportation, and food
• Educational and emotional support resources
• Guide patients through eligible workplace protections such as FMLA and ADA
• Give assistance engaging, applying and appealing workplace benefits including short-term and long-term disability
Request help at https://als.pafcareline.org/ 24 hours a day. Or contact The ALS Medicare Resource Line at (844) 244-1306.
Thank you Veterans!
To all veterans of all branches, The ALS Association Mid-America Chapter would like to thank you for your sacrifice, your bravery and your service. We are so thankful for your service and would like to highlight a few veterans we serve.
Amylyx, a Massachusetts-based pharmaceutical company, published the results of a multi-center placebo-controlled double-blind phase 2 trial of its compound AMX0035 on September 3 in the New England Journal of Medicine. The results of the trial were very promising – people with ALS receiving AMX0035 experienced a significantly slower decline in disease progression, compared to those on a placebo. Additionally, AMX0035 was safe and well-tolerated indicating a good benefit/risk consideration for people with ALS.
What is The ALS Association’s reaction to this news?
We are optimistic that AMX0035 can help people with ALS. We believe the data makes a clear and compelling case that it should be made available to people with ALS as soon as possible. We look forward to working with Amylyx, the FDA, and the ALS community to make that happen.
What were the results of AMX0035 on participants in the clinical trial?
Clinical trial participants who received AMX0035 experienced a clinical meaningful delay in ALS progression as measured by the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS). For many trial participants, that delay meant the difference between being able to feed oneself versus being fed or needing, versus not needing a wheelchair.
How does AMX0035 work?
AMX0035 is a combination of two existing drugs, sodium phenylbutyrate and taurursodiol, which acts to prevent nerve cell death by blocking stress signals in cells. Unlike other treatments in development, AMX0035 does not target the root cause of ALS. Instead, it aims to preserve the motor neurons that are progressively lost in ALS patients, slowing clinical decline.
How is AMX0035 administered?
AMX0035 is an oral therapy (a suspension in water, taken twice daily by swallowing or via PEG tube).
How many people were in enrolled in the trial and across how many sites?
The trial included 137 people with ALS and was conducted across 25 top medical centers through the Northeast ALS (NEALS) consortium.
What were the eligibility requirements for the trial?
All individuals enrolled in the trial were diagnosed with sporadic or familial ALS within the previous eight months, and all had rapidly progressing disease. These are stringent enrollment criteria meant to provide the clearest information possible.
When can people with ALS access AMX-0035?
In a best case scenario, Amylyx will submit a new drug application (NDA) to the FDA before the end of the year. FDA will take several months to review the NDA and can then use its authority to waive the phase 3 clinical trial to expedite AMX-0035 to market, where additional “real world” study of the drug can continue. This process would likely follow a 12 to 15-month timeline. The other scenario would require the same process plus a three-year phase 4 trial. Given that the drug has always been well tolerated and is shown to be effective in slowing disease progression, we don’t believe the delay and additional information gained from a phase 3 trial is needed. Through our petition initiative with I AM ALS, we are urging FDA and Amylyx to work together to bring the drug to market as soon as possible, without a phase 3 trial. To sign the petition, visit:
What’s next for AMX0035?
Urgent action is necessary. People with ALS cannot wait for the full experimental process for AMX0035 to continue. We are asking the FDA and Amylyx to work together to bring AMX0035 to people with ALS as soon as possible, prior to a phase 3 trial. We ask that the FDA conduct a swift review, require aggressive follow-on studies, and that Amylyx allows expanded access of the AMX0035 until approval.
Was this trial funded by The ALS Association?
The ALS Association supported this trial through ALS Ice Bucket Challenge donations, with $2.2 million in grants toward the company and the clinical trial network. We did this in partnership with ALS Finding a Cure for a total of $2.96 million.
Palliative Care vs. Hospice Care
By: Melissa Newby, RN and Jessica Higgins, RN at Phoenix Home Care and Hospice
What is the difference between hospice and palliative care?
Palliative Care is a program that provides resources for advanced care planning to persons who have a life-threatening illness and are seeking aggressive treatment. Palliative care takes a holistic approach focusing on the whole person with use of resources to assist in navigating and improving communication for the best care of the patient and family. The palliative care team uses their expertise to advocate for medical care and personal choices eliminating gaps in care or service failures. The palliative care team will coordinate with other medical professionals such as physicians, clinics, home health, and hospice to ensure and maximize quality of life and patient choice.
Hospice care is for individuals with a terminal illness who have decided to no longer pursue aggressive treatment and instead choose quality of life. Hospice is hands-on medical care for the patient and provides education, resources and support for caregivers. Hospice has 24/7 on call nursing services, provides medical equipment, supplies, bathing services, volunteers, chaplain, and social work services.
Does insurance cover hospice and palliative care?
Hospice is 100 percent covered under the Medicare benefit and most insurances have a hospice benefit. Palliative care is no charge to the patient and family.
How do I know which is the best option for me?
Palliative care allows continuation of aggressive treatments and can prepare you for hospice services. Hospice services are for those that have decided to stop aggressive treatment and choose quality of life.
What is covered under the hospice Medicare benefit?
Medical equipment, supplies such as briefs/wipes/gloves/needed dressings, medications, nursing services, home health aide services, social work services, Chaplain services, bereavement services, volunteers, and respite care.
For more information about hospice and palliative care, contact your local ALS Navigator.
Walk Your Way Recap
The ALS Association Mid-America Chapter celebrated The Walk to Defeat ALS in a slightly different way this year. We asked all our friends to host their own mini walk celebration. We called it the 2020 #WalkYourWay to Defeat ALS.
We had companies gather their employees to walk. We had families gather for picnics and shared stories of love and commitment. We had parades, caravans, and decorated bicycles. We saw sidewalks covered in messages “Beat ALS”, “Walking for Grandma” and others. It was so exciting to see so many people celebrating, in their own personal way.
We loved all the pictures and videos, but we missed YOU. 2020 has changed lives and taken so many things from so many, and The Walk was just one example. We missed being together. We missed the sounds of laughter, the hugs and even the tears. We missed sharing stories and inside jokes; missed sharing our frustrations for ALS and sharing our hope for treatments.
We hope those of you who have not yet put together a team and walked are still planning to host your event. We have until the end of the year to raise funds and awareness; we need to take every advantage.
Now we look to 2021. It is our wish that we can convene in 2021 to walk together, and that the good news from research continues to give us hope. Walk Day will be even more special having spent this one apart.
Meet your ALS Navigator
The ALS Association Mid-America Chapter Care Services Team is comprised of ALS Navigators who are nurses and master’s- level social workers. Each ALS Navigator is knowledgeable, compassionate and provides information and resources to help those living with ALS navigate every aspect of the ALS journey. These supportive partners guide individuals who have decisions to make, symptoms to manage, treatment options to evaluate, and adjustments to make to almost every detail of their daily routine.
Also, each ALS Navigator works as a liaison for local ALS Clinics. Their role is to provide assistance and education to the patients and their families about the services The ALS Association Mid-America Chapter has to offer.
Tara Dhakal, LMSW
Tara graduated from the University of Kansas with a master’s degree in social work and focus on aging. She has served as a social services consultant for long-term care companies, nursing homes and assisted living facilities. She has been with The ALS Association Mid-America Chapter since 2015 and works in The Chapter’s Kansas City office. Tara works directly with people living with ALS and their families who are located in the Kansas City Metro Area (Missouri). She is also a liaison at The ALS Association Certified Treatment Center of Excellence at the University of Kansas Health System.
Missy Addison, RN
Missy has a strong history of caring and professionalism in the healthcare and insurance industries, with over 20 years of experience. Missy graduated from Creighton University with a Bachelor of Science in Nursing. As both a Respiratory Therapist and Registered Nurse, she has experience working with and providing care to patients with ALS. Missy began with The ALS Association in 2018 and works in The Chapter’s Omaha office, providing services to people living with ALS and their families located in Nebraska. She also is the liaison at The ALS Association Certified Treatment Center of Excellence at Nebraska Medicine.
Cheri Mathis, LSCSW, LCSW
Cheri is a Licensed Clinical Social Worker and a Palliative Care Social Worker. She graduated from the University of Kansas with a master’s degree in social work and focus on aging. Cheri’s experience includes hospital-based palliative care, hospice, mental health therapy, and non-medical private duty home care management. In 2019, Cheri began with The ALS Association Mid-America Chapter as the Springfield office’s Care Services Specialist. She has now moved to The Chapter’s Kansas City office and works directly with people living with ALS and their families who are located in the Kansas City metro area (Kansas). In addition, Cheri is a liaison at The ALS Association Certified Treatment Center of Excellence at the University of Kansas Health System
Kim Harber, LMSW
Kim graduated from The University of Kansas with a master’s degree in social work in 2014. She has worked as a crisis clinician at a community mental health center, rural health coordinator at the VA, and as a targeted case manager for adults with disabilities. Kim has been with The ALS Association Mid-America Chapter since 2019 and works in The Chapter’s Wichita office. She works with people living with ALS and their families who are located in Central and Western Kansas. In addition, Kim also is the liaison for the Wichita ALS Telemedicine Clinic.
Ashley Smith, MSW
Ashley graduated from the University of Louisville with her master’s degree in social work. Her experience includes home health care, requesting and coordinating organ donations, substance use and co-occurring disorder counseling and casework, supporting bereaved families, and providing grief and loss counseling. She began with The ALS Association Mid-America Chapter this year and works in The Chapter’s Springfield office. Ashley works directly with people living with ALS and their families who are located in Western Missouri. She also is the liaison at The ALS Association Certified Treatment Center of Excellence at the University of Missouri Health Care in Columbia, Missouri, as well as the ALS Clinic of the Ozarks at CoxHealth in Springfield, Missouri.
By: Susan Whitacre, Registered Dietitian, The ALS Association Certified Treatment Center of Excellence at
The University of Kansas Health System in Kansas City
The purpose of a feeding tube is to provide optimal nutrition and hydration, when clinically appropriate. Deciding whether to get a feeding tube is a very personal and difficult choice.
The clinic team use the following criteria to determine if a feeding tube is appropriate:
• The clinic team considers the Forced Vital Capacity, or FVC, which is a metric used to measure breathing percentage. It is a good idea to get a feeding tube before the FVC falls below 50 percent. Clinical experience has found that a person’s recovery from the surgery is better if there are not currently severely compromised breathing concerns.
• The clinic team assesses weight loss. If there is a weight loss of 10 percent or greater, it is considered severe. When people with ALS have lost this amount of weight they are considered malnourished and it can speed up the rate of decline with ALS.
ALS research has shown that people with ALS have an increased metabolism. These people need to eat foods with high calorie counts. It is important to make sure food for a person with ALS has the right amount of calories in them. The research has shown that maintaining weight and not losing weight is associated with a decreased risk of disease progression.
• The clinic team assesses whether or not there has been a decrease in appetite. A decreased appetite leads to weight loss which leads to a decline. Many people with ALS, who have a significant decrease in appetite, choose to get a feeding tube. This decision is made even if the person has minimal swallowing problems, since it is difficult to eat without an appetite.
• The clinic team also assesses if you are having trouble feeding yourself with your arms or hands. When a person’s arms get weaker, they often eat less because it is too hard and time consuming. This will lead to weight loss and decline. Getting a feeding tube placed means you can use the feeding tube as needed as well as have others help you to eat.
• The clinic team assesses swallowing. When someone with ALS has trouble swallowing, it leads to risks of aspiration or decreased oxygen intake, resulting in a decline.
What is aspiration?
Aspiration occurs when food or liquid go past the vocal cords into your lungs. This can lead to pneumonia and other complications. In order to avoid this, please consult with a speech therapist. If you start to have problems swallowing, it is important to start eating softer foods that are moist and to avoid tougher foods like meats, salads, fresh fruit, vegetables and bread. It is also important to be mindful when you eat. Focus on taking smaller bites and eating slower.
It is best to get a feeding tube in the early stages of the disease before swallowing gets too difficult. People with ALS can eat food by mouth even if they have a feeding tube. Most people with ALS do a combination of oral eating and tube feeding.
Yes, you read that right. Those with ALS, who decide to get a feeding tube, can often eat a smaller portion of the food of their choice, when it is safe to do so, and supplement nutrition with a prescribed formula.
What vitamins and minerals are recommended?
The ALS doctors at KU usually recommend Vitamin E 400 units daily, Vitamin C 1000 mg three times a day, and Vitamin A 25,000 units daily. There are not any studies that have proven that these vitamins help. They are antioxidants and we know they don’t hurt you. However, these vitamins can be hard to swallow. Many times people have trouble with the Vitamin C. It is a very big pill. We tell people with ALS that when the vitamins get too hard to swallow and the burden is more than the possible benefit, we suggest they stop taking them.
Always remember that you are not alone in your ALS journey. You can reach out to a speech therapist and dietitian for help with any of your dietary, swallowing and speech concerns. Your health care team and ALS Navigator will support you through this decision.