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Shower and Bathroom Safety
Living with ALS can make everyday tasks, that once required little thought or effort, a challenge. Basic hygiene tasks performed in a bathroom, including bathing, hair combing, tooth brushing, and related activities, often require added support for safety and comfort.
In the early stages of ALS, maintaining independence is paramount for most, particularly when it comes to bathing, dressing and using the toilet. Staying one step ahead of the changing needs that accompany an ALS journey may prolong independence and allow caregivers to easily step in with the right tools when needed.
Creating an ALS Accessible Bathroom Space: Consider making the bathroom more accessible by installing handrails next to the toilet and inside the shower stall to provide additional balance and support. A padded shower chair with skid-proof rubber supports can help reduce the risk of falling, while supporting independence and conserving energy (sitting versus standing). Installing a hand-held shower head will add to the comfort of a seated shower. You may also consider remodeling your bathroom to include a roll-in shower for easy access throughout the progression of the disease.
Bathrooms can be slippery. Reducing moisture outside of the bathtub or shower can help prevent falls. If your bathroom does not have an exhaust fan, consider installing one. Line the bathtub or shower area with a non-slip mat. Add slip-prevention rugs or “self-stick” strips to main surface areas surrounding the sink and other common pathways. Also, round all hard counter edges and soften corners to reduce the chances of injury in the event of a fall.
As ALS progresses further, bathing techniques will need to change, and more help from a caregiver may be required. As muscles get weaker, it is more tiring for people living with ALS to bathe independently. It may be advisable to avoid prolonged bathing in warm water, as it may worsen muscle fatigue.
Gather the Right Tools: A rolling shower chair, which offers more support than a simple bath bench, may be beneficial. You can transfer into the rolling shower chair wherever it is easiest, eliminating difficult transfers in the small space of a bathroom. You may also consider using disposable body wipes or doing a bed bath if transfers to the shower become too difficult.
There are many different tools available to assist someone with ALS as they complete their everyday tasks. If you have difficulty doing something, there is usually a device created to help you! A few of the more commonly used items for hygiene are:
• Raised Toilet Seat is easier to get on and off a higher seat, and if you get one with arm rests that drop out of the way, transfers are even easier.
• Bidet attachment for the toilet aides in independence when toileting and helps the caregiver when more assistance is needed.
• Long-handled sponge makes reaching your feet and back easier while bathing.
• Shower bench or chair with a hand-held shower head helps with safety and energy conservation.
• Electric toothbrush and shaver helps when hand strength begins to decline and makes the job of the caregiver easier when outside help is needed.
For more information and resources, contact your local ALS Navigator.
Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. Episode topics include research and technology developments, advocacy efforts, and personal stories woven through the ALS community. To listen to podcast episodes, visit: www.connectingals.org.
2021 Public Policy Priorities
Our federal advocacy work focuses on educating and mobilizing all members of Congress and the Administration in a nonpartisan fashion to achieve the mission of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
This year, The ALS Association will aggressively advocate for legislative priorities that will:
Accelerate Development, Approval and Access to Effective New Treatments: Congress should re-introduce and pass the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act. People with ALS urgently need effective new treatments. FDA must be fully funded, fully staffed and provided the regulatory authority they need to be fast and effective and speed ALS trials and drug approvals.
Increase Federal Funding for ALS Research: People with ALS urgently need the federal government to increase investments in ALS research that will lead to the discovery of effective treatments and a cure. This means we need more ALS scientists, more ALS clinical trials, and more ALS research that can lead to effective treatments and prevent new cases of ALS.
• National Institutes of Health Funding for ALS – Department of Health and Human Services: Congress should increase funding to at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
• ALS Research Program (ALSRP) – Department of Defense: Congress should increase funding to at least $60 million for the ALSRP in fiscal year 2022 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials.
• Orphan Products Grants Program (OPGP) – Food and Drug Administration: Congress should provide at least $50 million specifically for ALS research to the OPGP in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
• National ALS Registry and Biorepository – Centers for Disease Control and Prevention: Congress should provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and collect biospecimens that will lead to a better understanding of who may develop ALS.
• National Academies of Sciences, Engineering and Medicine (NASEM) study: Congress should provide at least $1 million for an NASEM study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Permanently Extend Access to Telehealth for People Living with ALS: People with ALS must continue to have full access to safe, high-quality care via telehealth at home. Congressional expansion of telehealth has proven to be critically important for people with ALS throughout the COVID-19 public health emergency. Congress must permanently extend these expansions and ensure that all health care services important to people with ALS are covered by telehealth.
Provide High-Quality, Affordable, and Accessible Health Care: People with ALS must have health care that is high-quality, affordable, and accessible. This includes enhancing all aspects of health care coverage; protections for pre-existing conditions; reducing costs for Medicare coverage including home infusion and other specialized outpatient and in-patient medical care; durable medical equipment (wheelchairs, speech generating devices, breathing equipment); and all medications needed by people with ALS.
Increase Veterans Benefits for People with ALS and their Families: Veterans with ALS serving in any branch of the United States Armed Forces are more likely to develop and die from ALS. As a result of The ALS Association’s efforts, the Veterans Administration recognizes ALS as a service-connected disease and provides additional financial and health care benefits. The ALS Association will continue to fight to ensure that veterans living with ALS and their families receive the best health care and maximum benefits possible.
2021 Walk to Defeat ALS
Are you ready to Walk to Defeat ALS? We are!
The Walk to Defeat ALS® is an annual event held in Kansas, Missouri and Nebraska, as well as throughout the country. The Walk draws people of all ages and athletic abilities together to honor a loved one with the disease, to remember those who have passed and to show their support for the cause.
Our goal is to have teams raise awareness about ALS and fundraise to continue to support people living with ALS, discover more treatments, and provide hope for a cure.
Last year changed the way we did things, and The Walk to Defeat ALS was no different. In 2020, instead of gathering together, we selected one day and asked all our friends across the state to host their own mini walk celebration. We called it the 2020 Walk Your Way 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. Many people celebrated in their own personal way and shared pictures on social media. Despite the challenges, the fundraising from last year’s “Walk Your Way” helped The Chapter continue to provide free programs and services to people living with ALS and their families.
In 2021, we are hoping to have our Walks be a little closer to normal! The Walk to Defeat ALS websites are open and accepting registrations. As we have more information about Walk dates, times, locations and other safety measures, we will make them available. We hope you will consider joining us for this year’s Walk to Defeat ALS!
Daily Living Activities
There are a lot of little activities each of us do every day; things like buttoning clothes, brushing our teeth, or picking up a coffee mug. However, these common tasks become more challenging when you have ALS. You can make such daily living activities easier by adjusting how you do things or making small changes to items around the house. There are many different products or techniques you can use. Below are some tips you can use to make daily living activities easier:
Wrap the handles of forks, spoons, combs, toothbrushes, or other small utensils with foam, rubber, or tape to make them larger and easier to grip. You can use foam tubes and cut them into to the correct lengths, or wrap rubber bands or tape around the handles until they are a comfortable thickness.
Use lighter-weight utensils, such as plastic forks or plastic cups.
Choose a mug that has a large handle, allowing you to use your entire hand to grip it rather than just a couple of fingers.
Use cups with a ribbed rather than a smooth outer surface since a ribbed surface is easier to grip.
For zippers on clothing, attach a loop of string or a metal ring to the zipper tab. This will make the zipper easier to grab and easier to pull.
For clothes with buttons, you can remove the buttons and sew pieces of Velcro on instead: one piece where the button had been attached to the clothing, and one piece on the back side of the button hole. You can then sew the buttons back on, but on the outside of the button hole, making it look like the clothing is still buttoned shut.
Consider buying clothing that is easier to manage, such as pullover tops that don’t require buttoning, buttonless pants with elastic waists, and clothes that are a couple of sizes bigger than normal and are therefore easier to put on.
Use sweat pants that do not have elastic around the ankles, or remove the elastic, so that it is easier to slip your foot through the opening.
Form a washcloth pocket by sewing two wash cloths together on three sides. You can then slip your hand and/or soap into the pocket, allowing you to wash without having to grip the cloth.
Put toothpaste directly into your mouth before brushing, rather than trying to put it on the toothbrush first. You can hold the tube of toothpaste between your two palms and squeeze them together to get the toothpaste out, instead of trying to grip and squeeze with one hand. Also, leave the cap off the tube of toothpaste, so you don’t have to screw it off and on with each use.
Flip top lids, such as those on many brands of shampoo and lotion bottles, can be opened and closed using the edge of a table or counter top.
Choose a hairstyle that is easy to care for.
Take breaks and allow for periods of rest throughout your day to prevent fatigue.
The ALS Association Mid-America Chapter provides free resources to people living with ALS, one of which is an Aids for Daily Living (ADL) Kit. Designed to help with compromised fine motor skills, an ADL Kit can include the following items: button hook/ zipper pull, Universal Holder, PenAgain, Kennedy Cup, elastic shoelaces, flexible/extra-long straws, lipped plate, Dycem, key turner, right or left-handed scoop spoon and comfy grip tablespoon. Contact your local ALS Navigator for more information and items to assist you in daily activities.
FAQ: Accessing SSDI and Medicare
On December 22, the ALS Disability Insurance Access Act became law. The law became effective immediately on December 23, waiving the five-month waiting period before people with ALS can access Social Security Disability Insurance (SSDI) and Medicare benefits. This law was the result of four years of advocacy by the entire ALS community. Since the law was passed, The ALS Association has met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people with ALS. Below are some FAQs we are able to answer based on our meetings with the Administration:
1) What is the effective date for the SSDI waiting period waiver for people with ALS?
The waiver applies to any applications received on or after December 23.
2) What should people with ALS who applied for SSDI before December 23 do?
People who applied for SSDI before December 23, 2020 should cancel and resubmit their application if they have not already met the five-month requirement prior to the law’s effective date.
3) What are the eligibility criteria for people with ALS to receive SSDI?
The eligibility criteria for SSDI have not changed. Visit the Social Security Administration’s website for all eligibility criteria.
4) What are the first steps people with ALS should take to apply for SSDI?
The process for applying for SSDI has not changed, only how quickly a person living with ALS is determined to be disabled and how quickly they get payments.
5) Is the SSDI waiting period waiver retroactive?
No, the waiver applies only to SSDI applications from people with ALS on or after December 23, 2020.
6) People with ALS are eligible for Medicare benefits due to disability immediately following an application for SSDI due to ALS. Please explain what needs to happen once someone qualifies for SSDI so they can access Medicare right away?
The process and eligibility requirement for applying for Medicare due to disability has not changed. People with ALS automatically get Part A and Part B the month their SSDI benefits begin.
When a person’s SSDI application is approved, the Social Security system connects directly to the Medicare system the next day. When SSDI benefits begin for someone with ALS, their Medicare benefits will begin as soon as Medicare is able to process the information. The Medicare program will send information by mail.
7) Does the SSDI waiting period waiver for ALS cover any similar diseases, such as Primary Lateral Sclerosis, Progressive Bulbar Palsy and Progressive Muscular Atrophy?
No, the waiver only covers people with ALS that are eligible for SSDI.
The Social Security Administration is currently updating its policy procedures and materials for public consumption. This includes updates to SSA.gov to make the SSDI application process as clear as possible. The ALS Association will continue to work closely with Social Security to communicate any additional updates as the process continues. If you have questions, please contact your local Social Security Administration office. You can also call toll-free: 1-800-772-1213.
Social Work Month 2021
It’s Social Work Month! We would like to recognize the social workers in our Chapter’s clinics for the outstanding care and support they offer families dealing with ALS. Social workers are trained to help people address personal and systemic barriers to optimal living. They are employed to effect positive change with individuals, families, groups, and entire communities.
The role of the social worker in the ALS Treatment Centers is to provide you with information on services that enable you to have your care needs met. Whether it is personal care assistance, transportation, equipment needs, information on financial resources or respite care; the social worker helps you and your caregiver identify resources in the community to meet those needs. The social worker assists families with decision making concerning issues such as advance directives or finding appropriate care, as well as assisting to cope with a chronic illness or loss for both the patient and the caregiver.
Social workers are often unsung heroes, but they play an essential role in empowering people affected by ALS to live life to the fullest. During Social Work Month, we hope you will learn more about this amazing profession, say a kind word to social workers in your lives, and advocate for policies and legislation that benefit the profession and the populations they serve. In honor of Social Work Month, please consider registering to be an ALS advocate to help create a world without ALS, visit:
How can self-compassion help us when living with ALS?
By: Cheri Mathis, LSCSW, LCSW, ALS Navigator
Living with ALS brings a lot of uncertainty into your life. When faced with uncertainty, it’s normal to experience a roller coaster of emotions such as anxiety, frustration, anger, loss, grief, and even denial. You may feel like no one understands. There may be economic hardships that add to the worries and fear. As the disease progresses, the increased burdens from loss of functioning and demands of caregiving can magnify the sense of loneliness, isolation and suffering for both the individual with ALS and their loved ones. In the face of all this, it can be really easy to resort to self-judgment, catastrophizing and disconnection.
Self-compassion can help you cope better with these normal reactions to a really difficult situation. By exploring rather than avoiding negative experiences and feelings, you will ultimately be able to navigate the challenging circumstances and uncertainties more effectively. Most of us know how to give support, comfort and compassion to the people who need us. But how many of us offer that same level of compassion and care to ourselves? Treating yourself with the same compassion you offer others may help you get through challenging times without being overwhelmed by them.
The first component of self-compassion – mindfulness – is observing your thoughts and feelings as they are, without judgment and without trying to suppress or deny them. You cannot ignore your pain and feel compassion for it at the same time. But mindfulness also requires that you not be “over-identified” with thoughts and feelings, so that you get caught up in negative reactivity. Having a willingness to observe our negative thoughts and emotions with openness and clarity, helps us hold them in this mindful awareness and helps us disentangle from what’s bothering us.
The second component of self-compassion – common humanity – is an antidote to the isolation you may feel by encouraging awareness that others are similar to us, in that we all go through pain and suffering at times. When you recall that you’re not alone no matter what you’re going through, things become more bearable. When you reflect on your own distress, remind yourself, “Others feel as I do—I am not alone.” Consider reaching out to your ALS Navigator or connect with others who are living with ALS by joining one of our ALS Support Groups.
The third component of self-compassion – self-kindness – is about being warm, caring and understanding with yourself when you feel distress or inadequate, rather than ignoring your pain or responding with self-criticism. Your days and weeks will not always go the way you want. When you deny this reality or fight against it, your suffering increases in the form of stress and frustration. When you accept this reality with sympathy and kindness, you can be gentler with yourself thus reducing your suffering.
It may help to think through how you would respond to a friend or loved one confiding in you about their feelings. Then apply that tone and supportive coaching to yourself. Ask yourself what words do you need to hear to comfort or reassure yourself right now? For example, “I am going through a difficult time right now. It’s okay to take a break, and I don’t always have to be strong.” “I am doing my best, and that will have to be enough for now.” “Right now I am struggling. What do I need to do to honor my feelings and continue taking good care of myself?
In the face of ALS, self-compassion can be an important tool to help you navigate through the difficult times, and grant you the gift of grace which you all deserve. Of course, a single self-compassion practice will not immediately change your life. The fruit of self-compassion practice is learning how to hold your struggles and yourself in a loving embrace, just as we are, and treating yourself with the same kind and non-judgmental manner that you would treat someone whom you love. Difficult situations won’t magically disappear as a result of practicing self-compassion, but your responses to those experiences and feelings can and will change.
COVID-19 Vaccine Information
In January, The ALS Association and The National Organization for Rare Disorders (NORD) hosted a webinar about the COVID-19 vaccine. The information listed below was presented at the webinar. For more information about the COVID-19 vaccine, visit the CDC’s website, as well as your state's Department of Health website.
The 2 vaccines that were developed met characteristics that were set forth in guidance for safety and efficacy. The vaccine is 94-95 percent effective. In comparison, the influenza vaccine is 70 percent effective. There is not a preference between Moderna or Pfiezer.
FDA and CDC recommend that those who are high risk, get the vaccine early. The vaccine has very significant efficacy for people over the age of 65.
Make the choice with your individual healthcare provider. The FDA and CDC do not think there will be harm for people who have a rare disease. However, it is hard to study the efficacy of a vaccine in a rare disease because not a lot of people with rare diseases were involved in their studies.
Go to your state department health website to see where to get the COVID vaccine. Check each week for availability as it can change quickly. Each jurisdiction or state has flexibility with phases due to the demand and supply within those jurisdictions.
There has been reported discomfort after the second dose such as achy joints and a small number of people who get fevers. These symptoms usually only last a day or two.
It is unlikely that you will get the COVID vaccine from your primary care doctor as there are administration sites for the vaccine. All sites recommend waiting 30 minutes after you receive the vaccine to watch for an allergic reaction.
Severe allergic reactions occur in 1 in 100k people or fewer. The CDC is looking into this and the FDA recommends continuation on monitoring after receiving the vaccine. Don’t get the vaccine if you’ve had a known reaction to any of the vaccine components and tell your healthcare provider if you have a history of any allergic reactions.
Don’t get the vaccine if you have COVID-19. Wait until you get better and then get the vaccine.
There are other vaccines on the horizon. There are several in Phase 3 trials and there is a possibility of a 1 dose vaccine.
The FDA and CDC recommend that you continue to wear a mask after you receive the vaccine, in order to control the spread of COVID-19.
The mRNA COVID vaccine would not interfere with gene therapies. Please check with your healthcare provider for their guidance.
There are now multiple strains of COVID-19. The UK strain has a higher rate of spread and the current vaccines are effective. However, there is not enough research yet to know if the current vaccines will be effective for the South African strain. The CDC and FDA are researching this and they can alter the current vaccine, if needed, and get it expedited.
When a person living with ALS requires urgent or ongoing treatment in a hospital setting, they face a unique set of challenges. To assist with making your needs and wants known, and to support health care providers in their roles, there are some tools available for people living with ALS. If you are interested in receiving the following resources, contact your local ALS Navigator.
Planning ahead is imperative for everyone, regardless of your current health status. There are things you can do now to prepare for an emergency later. One resource that can be helpful is a Medical Information Packet. The packet contains documents that outline your specific care needs, along with general information about the care of someone with ALS. Completing advance directives is also important to address prior to any emergency. Advance directives help you make your treatment decisions known, and guide treatment when a patient cannot give informed consent or refusal. For more information about completing advance directives, and things to consider, contact your local ALS Navigator. Remember that it is not only the person living with ALS who needs advance directives; everyone should have their choices around medical care documented in case of an emergency.
When an emergency or trip to the hospital does occur, it is imperative that the person with ALS be able to communicate their disease state, key considerations for their care, and primary contact information.
Key Medical Information Cards have basic, quick access information along with a communication board and are small enough to keep in your wallet, purse or glove compartment. Having a Key Medical Information Card in more than one place, and always with your caregiver, insures there is always one available when needed. The Key Medical Information App, available for Apple and Android, is another way to store important information.
Contacting your local fire department and making them aware of your disease and your specific care needs (transfers, mobility, respiratory support, communication), as well as creating a “go bag” if you have to head out in an emergency are two other ways to plan ahead. And don’t forget, caregivers can become sick and need emergency care as well. Planning for backup care, with well-defined instructions, is important.
Contact your local ALS Navigator for these resources and more information about emergency preparedness.
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.