In the News
Energy Conservation: Strategies & Tools
By: Molly Dennert, Occupational Therapy Doctoral Student
What is energy conservation?
Energy conservation is a method of modifying or adapting your daily routines to increase efficiency, decrease fatigue, and continue participating in all the activities you enjoy doing. Everything you do from the moment you wake up until the moment you go to sleep uses energy. The goal of energy conservation is to allow you to have energy for the things you want to do, not just the things you need to do. You get to choose where and how you use your energy!
How do I conserve my energy?
PRIORITIZE your daily tasks. What is the most important to you? What needs to be done now, and what can be saved for later?
PLAN out your activities to avoid doing too much in one day. Gather everything you need for a task prior to beginning. Use assistance from family or friends.
PACE yourself. Listen to your body! Rest before you become fatigued. It is okay to ask for help.
POSITION yourself in a way that is comfortable and limits fatigue. Sit to complete tasks when you can. Limit bending and reaching when possible. Maintain an upright and supported posture for more effective breath control.
Energy conservation can be a difficult concept to work into your everyday life. A good way to measure the effort required for a certain task or activity is to evaluate how you feel after completing it. For example, if you are fatigued following an outing to the grocery store to the point that you require a two-hour nap to recover, that activity likely used up a lot of energy.
Gather all meal preparation items before beginning cooking a meal
For housework, make a list of the jobs you want to do and complete one each day
Fill shopping bags half full to make them easier to carry
Sit in a chair while showering, cooking, or dressing if you fatigue during these activities
A large factor in energy conservation is finding the right tools to help you with a task. Tools as well as strategies offer opportunities to conserve energy for participation in activities that are meaningful to you. It is important to remember that tools can help you maintain your independence, even if participation looks different than it did before.
Examples of Tools:
A long straw to eliminate the need to lift a cup to your mouth
Elastic shoelaces to turn tie up shoes into slip-on footwear for ease of dressing
A universal holder to build up the handle of a utensil if your hands fatigue quickly
Consult your occupational therapist and ALS Navigator for suggestions on what assistive devices or equipment may be useful to you. Strategies and tools can support you to make your everyday activities easier and allow you to use your energy on the things that bring you joy.
National Nurses Week
National Nurses Week is May 6th-12th. We would like to highlight the incredible nurses in our Chapter’s ALS clinics, for their care and support they provide to individuals living with ALS. In honor of all the amazing nurses, we asked a few from our local ALS clinics, to explain their role in caring for a patient with ALS.
Lisa Potthoff, The ALS Clinic of the Ozarks: “The role of ALS Clinic nurse is a role of passion, endurance, and many hats. We stand as advocates for our patients, we facilitate getting the things that they need to help with mobility, breathing, feeding, etc. We are proud to provide education to the patients and their care partners. We wrangle the team and share their story with each team member, ensuring that each member of the interdisciplinary team understands the concerns that the patient has expressed, what they want, and of equal importance, what they do not want. We stand with the patients and their family throughout their journey without bias or judgement. We are blessed to share tears with them, both sad and happy. As a nurse in the ALS Clinic, I get to share in the care of beautiful souls, and for that, I am blessed to be a member of this team.”
Karissa Burr and Lisa Mandolfo, The ALS Association Certified Treatment Center of Excellence at Nebraska Medicine: “After a patient is diagnosed with ALS they are provided with information and education. We meet with the patient and get them scheduled in our ALS clinic. On ALS clinic day, we help to coordinate the flow of the clinic and try to be sure there is little wait time for the patients between meeting with the different disciplines. Our goal is to make patients, their families and caregivers feel they have all of the tools and information necessary. We are honored to help guide and assist patients with their needs, questions and/or concerns as they go through their journey with ALS.”
Brian Ghafari-Naraghi, The ALS Association Certified Treatment Center of Excellence at Missouri Health Care: “I have the honor and privilege to work with patients and families learning to live with ALS. I am here for support, education, resource finding and any other way I can help. My goal is to make getting the care you need as simple as possible.”
Thank you to all the nurses who serve the ALS community!
The Jane Calmes ALS Scholarship Fund
The ALS Association is accepting applications for The Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
Since its inception, we have awarded $1,195,000 in 239 scholarships for students nationwide who are pursuing an accredited college degree or vocational certificate.
“The financial burden of ALS is devastating on families, and kids are all too often collateral damage. The disease forces many kids to delay their education so they can pitch in as caregivers, while others lose the financial ability to attend school altogether. I’m very pleased the fund was able to help some of these students get back on the education path that was disrupted by ALS,” said Mark Calmes, of The ALS Association’s National Board of Trustees.
Calmes started the scholarship fund in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017. The fund provides financial assistance to students pursuing an accredited college degree or vocational certificate. The scholarship is not limited to traditional two- or four-year college degrees but is also intended to cover vocational education.
Applications for this year’s scholarship awards, which will be distributed for the fall 2022 and spring 2023 semesters, are being accepted through May 18, 2022.
To apply for The Jane Calmes ALS Scholarship Fund awards, donate to the scholarship fund, or get additional information, visit: https://www.als.org/get-involved/jane-calmes-als-scholarship-fund
The Jane Calmes Scholarship Fund is being administered by Scholarship America.
To apply, visit: https://learnmore.scholarsapply.org/calmesscholarshipfund/
ALS Awareness Month
This month is ALS Awareness Month. A month dedicated to spreading awareness about ALS. We encourage you to invite your friends, family, coworkers and everyone you know to get involved in ALS Awareness Month. Below are a few ways in which anyone can participate in ALS Awareness Month:
Register for a Walk to Defeat ALS®. The Walk to Defeat ALS is a yearly family-friendly event that has a direct impact on people living with ALS and their families. Money raised from The Walk, provides funds for education, support groups, and access to care for people living with ALS. To register for your local Walk to Defeat ALS, visit: www.walktodefeatals.org
Sign up to be an advocate and be a voice for people with ALS. It is through your advocacy that, together, we will create a world without ALS. The actions of Congress and the federal government have a tremendous impact on people with ALS, so it’s important that those leaders hear from you. To sign up to become an ALS Advocate, visit: www.als.org/advocacy
Donate to The ALS Association Mid-America Chapter. Your generous gift will help in the search for treatments and a cure for ALS, while providing care and support to families right here in your community.
Follow The ALS Association Mid-America Chapter on Facebook and Instagram for more information about ALS Awareness Month.
Five Facts to Help Maintain Good Nutrition
While good nutrition is important for everyone, it can be very challenging for people living with ALS to maintain a healthy diet due to chewing and swallowing difficulties often experienced at some point in the disease progression. Improper nutrition can cause people to feel tired, lower their resistance to infection, speed the loss of muscle mass, cause constipation and lead to a host of other health problems.
A nutritionist or speech therapist can help people living with ALS and their caregivers put together a healthy diet that works to meet each person’s specific needs. In general, though, when supplied with the right education and information, planning and preparing healthy meals the whole family will enjoy can be easy and stress free.
Below are some important facts to know and tips on maintaining good nutrition despite having ALS.
1. Protein provides the building blocks for muscle and many other tissues in your body. Excluding water, about three-quarters of our body’s solid mass is made up of protein. If you don’t consume enough protein, your body may break down muscle tissue to supply the quantity it needs. While protein is very important for people living with ALS, it can be difficult to consume the necessary amount. Meat, including beef, poultry and fish, eggs, beans, nuts, milk and cheese are all-natural sources of protein.
2. Fiber can help you maintain a healthy weight and improve your digestive health. Fruits, vegetables and whole-grain breads and cereals are all good sources of fiber. Unfortunately, fibrous foods can also be hard for some people living with ALS to swallow. To make sure you’re getting enough fiber in your diet, consider eating fruits or vegetables with a soft consistency, such as bananas, canned peaches, cooked beans, applesauce or other fruits that have been pureed.
3. Most people need a half-gallon of water each day, or eight 8-ounce cups of liquid. Dehydration can be another problem for people with swallowing difficulties, and getting enough water is every bit as important as getting enough food. If you’re having trouble swallowing liquids, you can get the water you need by drinking thick liquids or adding thickening powder to your favorite beverages. Eating food with a high-water content, such as canned fruits or pudding can also be a big help for people living with ALS. People with mobility challenges may limit their liquid intake to decrease trips to the bathroom. Strategies and equipment for easier transfers and independence are available.
4. Getting enough calories daily is critical for people living with ALS. Getting enough calories to maintain a healthy weight can be challenging for people living with ALS. Though many people think it’s healthy to diet or limit fat intake, for people living with ALS it’s much more important to make sure you’re getting enough calories to fuel your body and prevent it from breaking down muscle tissue. If you quickly feel full or grow tired when eating, try having six to eight small meals each day instead of three large ones. You may also consider a feeding tube to supplement your calorie intake throughout the day.
5. Vitamins and minerals help boost the immune system, support normal growth and development, and help cells and organs do their jobs. While there’s not yet clear evidence that vitamin supplements can help the body fight ALS, it’s been suggested that vitamin E may be beneficial to people living with ALS, but the evidence is inconclusive. However, it’s still a good idea to consider taking a daily multivitamin and perhaps an additional vitamin E supplement. Some vitamins come in either solid or liquid form, so you can choose whichever is easiest for you to consume.
For more information about maintaining good nutrition while living with ALS, contact your ALS Navigator.
ALS Advocacy Fly-In
Leaders in the fight against ALS held 250 virtual meetings with members of Congress last month, to press for an exponential expansion of federal funding for ALS research and programs next year, as part of The ALS Association’s annual Fly-in Conference.
More than 50 advocates and 60 ALS Association representatives from communities across the country attended the meetings virtually. Advocates met with Congress to discuss what is needed to make ALS a livable disease and to ultimately find treatments and cures.
As in past years, the meetings coincided with the kick-off of the appropriations process on Capitol Hill, as lawmakers begin to prepare the budget for the next fiscal year beginning in October. The Association is seeking to boost funding for ALS research across the federal government to find new treatments and cures.
Our asks during the meetings included:
• At least $100 million to fully fund the ACT for ALS Act, which was signed into law in December 2021. This includes $25 million in funding for the Rare Neurodegenerative Disease Grant Program for clinical grants for ALS and other diseases (in FDA’s Orphan Products Grants Program). In addition, $75 million in funding for expanded access grants for research on therapies for ALS (at NIH).
• Increase funding at NIH for ALS research – at least $135 million
• Increase funding for the Department of Defense ALS Research Program – at least $60 million
• CDC National ALS Registry and Biorepository – at least $10 million
This represents meaningful increases in funding from the current budget, which includes $27.5 million for ACT for ALS programs, $40 million at the DOD ALS Research program and $115 million at NIH.
On March 11th, more than 250 virtual congressional meetings were held during the Association’s annual Fly-In. 50 people living with ALS and their families, supported by 60 ALS Association staff, lobbied key members of the House and Senate. Local Chapter staff members and ALS advocates participated in Kansas, Missouri, Nebraska virtual congressional meetings (pictured above).
Registering for The 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 to Defeat ALS is fun for all ages and is a wonderful way to celebrate the lives of those who fight ALS every day.
There is no team size minimum or registration fees for the event. Families, friends and companies are invited to start teams, and raise money through online fundraising, writing letters, and small fundraising events. Registration is now open so sign up today!
When you register for The Walk to Defeat ALS, you will be able to log in to your Participant Center, share your “Why I Walk” story, and upload pictures of your team or the individual you are walking for. The Participant Center also allows you to send emails to your contacts, as well as connects your fundraiser to Facebook.
After updating your page make a donation! Giving a gift to your own fundraising page shows your supporters you are passionate about the cause.
Once your Participant Center page is set up, be sure to check out the fundraising tools where you will find fundraising ideas, sample letters, information on matching gifts and a potential donor spreadsheet you can download to track those that have donated to your page.
April is Occupational Therapy Month
Occupational therapists are key members of the mobility team for a person living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken.
The ALS Occupational Therapist (OT) provides assessment and treatment for the skills needed to perform activities of daily living. They focus on their patient’s ability to transfer, dress, bathe, groom, toilet, and feed themselves. They assess upper limb range of motion and strength and provide recommendations for upper limb and neck bracing. In addition, they perform home safety evaluations and are able to perform wheelchair assessments.
Together, the Physical Therapist and Occupational Therapist help families negotiate the transition of their loved one from independence to dependence, providing caregiver training, teaching transfer techniques, and offering recommendations for durable medical equipment and assistive devices.
Research Matters Newsletter
Stay up-to-date by subscribing to our monthly e-newsletter, Research Matters. You’ll receive information about the latest ALS research discoveries, key advances in technology and new treatment approaches taking place in clinical trials. To sign up for the e-newsletter, visit: www.als.org/research-matters
Manage Pandemic Fatigue with Resilience
By: Cheri Mathis, LSCSW, LCSW, ALS Navigator
As you are reading this, we are two years into the COVID-19 Pandemic. Seems like a good time to take a few moments to reflect on how you are doing. How have the changes, limitations, restrictions, and losses created by this pandemic impacted your life? How have you navigated and adapted to create an ever changing new normal? Have you found some silver linings? What are you doing to continue to live your life alongside the uncertainties that remain?
Your answers may differ from another’s answers to these questions. The reality is that we cannot change the presence of this pandemic. Yet there are things that we can do to not only maintain our well-being through this, but even to thrive, sometimes in new ways.
The first step is to grieve the losses–large and small. Our losses include simple things we take for granted like hugging, connecting face to face with friends and families, the normalcy of attending events we often take for granted, and for many, the loss of a loved one or friend. A healthy grieving process results in a level of acceptance of the new reality. It is from this process of grieving, and ultimately accepting what is, that you then have the opportunity to create your new reality.
Focus your energy on things you can control. You can control how you respond to these new situations. You can choose to focus on what is most important to you, do things you enjoy, and discover or rediscover ways of having fun.
Take care of yourself to recharge your mental and emotional energy. Good sleep, nutritious food, staying hydrated, and movement are all important. Connect with friends-even if it has to be with the help of technology. Spend time in nature or enjoy nature from the view out your window.
Practice Gratitude. Gratitude helps people feel more positive emotions, relish good experiences, improve their health, deal with adversity, and build strong relationships. Try a practice of identifying 3 things you are grateful for each day, or naming 3 good things that happen each day to help you experience the benefits of gratitude.
Engage in relaxing and fun activities. Both relaxation and fun are important during difficult times. Consider what helps you relax. Make time for fun. Be adaptable in finding new ways to do things you enjoy.
Adopt a healthy perspective and find the silver linings. The Pandemic forced our lives to slow down, giving us the opportunity to reflect on what is really important and what provides meaning and purpose to our lives. Challenge yourself to identify silver linings in difficult times.
Practice self-compassion. Self-compassion is the emotional attitude of bringing kindness to ourselves. It is about learning how to hold our struggles and ourselves in a loving embrace, just as we are. Talk to yourself as you would to a good friend having a tough time.
We hope that the Pandemic is a once in a lifetime experience. However, we will all experience challenges and times of uncertainty in our lives. We can learn to navigate these times while maintaining our well-being. Acknowledge the difficulties that are present and the difficult emotions that may arise for us. Utilize the above suggestions as your ‘Resiliency Formula’ to keep you moving forward with your life. Your attitude, perspective and mindset can make all the difference in your sense of well-being, in any circumstance.
The 2022 Walk to Defeat ALS
The 2022 Walk season is here and our Development Managers are hard at work to make 2022 a huge success. The Walk to Defeat ALS is a yearly family-friendly event that has a direct impact on people living with ALS and their families. Money raised from The Walk, provides funds for education, support groups, and access to care for people living with ALS. Save the date and join us as we Walk to Defeat ALS this year!
National Social Work Month
Social workers are often unsung heroes, but they play an essential role in empowering people affected by ALS to live life to the fullest.
We would like to recognize the incredible team of Chapter ALS Navigators, several are social workers, and their dedication to the ALS community. In addition, 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. During National 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.
Virtual Support Groups
The ALS Association Mid-America Chapter offers support groups in each of the three states we serve –Nebraska, Kansas and Missouri. Like the rest of the world, we had to adapt to the effects of the coronavirus pandemic. When the world shut down, we realized that we needed to make changes; to be sure, we were still connecting with people affected by ALS. That is when we went to a strictly virtual support group model, offering meetings via Zoom video conferencing.
Support groups vary, but the basic format is a small group of people who meet on a regular basis to share information and practical experiences. An ALS Navigator helps facilitate discussions, provide additional information, and support, as needed.
While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle. Support groups provide opportunities to learn how other people are coping with similar challenges. Talking with others who are sharing your experience can help reduce a sense of isolation – even if it’s through a screen.
We currently offer support groups for people diagnosed with ALS, as well as a group for caregivers and survivors. For more information about our monthly virtual support groups, please contact your local ALS Navigator.
Wichita ALS Clinic
The Wichita ALS Clinic, in partnership with Neurology Consultants of Kansas, held its first clinic on February 9th. The clinic operates in partnership with a private neurology practice, Neurology Consultants of Kansas, under the direction of Dr. Robert Murphy and Dr. David Mayans. The clinic also operates in partnership with Stay Home Solutions, LLC, a mobile medical company. Stay Home Solutions, LLC, provides the clinic’s physical therapist, occupational therapist and speech language pathologist.
We are grateful for all our partners that have come together to provide local clinical care, for those we serve in central and western Kansas.
By: Missy Addison, BSN, RN, ALS Navigator
The ALS Association Treatment Center clinics provide compassionate care in a supportive, family oriented atmosphere, with an emphasis on hope and quality of life. In collaboration with their local ALS Association Chapter, these centers achieve either a Certification or a Recognition designation, which meet program requirements and follow recommended best practices, as outlined in the American Academy of Neurology Practice Parameters.
Our Certified and Recognized Treatment Center clinics are modeled using a multidisciplinary approach. This multidisciplinary care model is comprised of a specially trained team of clinicians. The team generally includes:
• Physical Therapist
• Occupational Therapist
• Speech Language Pathologist
• Registered Dietician
• Respiratory Therapist
• Research Coordinator
• Social Worker
• ALS Association Chapter Liaison
Each patient receives hands on assessment with each of the clinic team professionals. One by one, according to a carefully crafted schedule, members of the multidisciplinary team will see a patient for evaluation, discussion and will develop an individualized care plan.
Multiple aspects of ALS are comprehensively addressed, that acknowledges the truly unique challenges that people living with ALS and their families face. The clinic team understands ALS is not just a complex physical disease, but also an emotional, spiritual and psychological disease, as well. The experienced team of healthcare professionals can help guide patients and families through their journey, by providing in-depth knowledge of the disease progression, as well as providing aide with difficult decisions.
Working with a clinic team is essential to achieving the continuity of care, that is so necessary for people living with ALS. Receiving care at an ALS clinic can help an individual maintain independence and improve quality of life. The clinic provides options for symptom management, assistive technology, adaptive equipment, education, care services and emotional support.
One patient, who attends a local ALS clinic, said, “The positive, caring, informative staff, they ALL were exceptional. We learned so much. We left feeling hopeful rather than helpless.”
For more information about the ALS Treatment Center clinics, please contact your local ALS Navigator.
ALS Treatment Centers
The National ALS Registry
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases throughout the entire United States.
The National ALS Registry allows people living with ALS to fight back and help defeat ALS. By signing up, being counted, and answering brief questions about you and the disease, you can help researchers find answers to important questions.
The National ALS Registry collects basic information, such as your age and sex. Once you join, there are several surveys available to take. The surveys collect data on occupation and environmental risk factors, such as military history, work history, physical activity, and family history. By joining the Registry and taking the surveys, individuals living with ALS will help provide a better picture of who gets ALS and the risk factors for the disease.
The Registry collects critical information used to estimate the number of new cases of ALS diagnosed each year, estimate the number of people who have ALS at any given point in time, and better understand who gets ALS and what factors affect the disease. In addition, the information collected enhances research that could improve care for people with ALS.
All Registry information is private. It can only be viewed by Registry approved scientists. Anyone who registers is not identified by name. For more information about the National ALS Registry, visit www.cdc.gov/als.
The Accelerating Access to Critical Therapies (ACT) for ALS Act was signed into law on December 23, 2021. This achievement was made possible due to efforts of chapters and ALS advocates across the country.
The new law will directly impact the lives of people with ALS by providing expanded access to experimental therapies and funding for new research.
Since the ACT for ALS Act was first introduced in June 2020, ALS advocates have reached out to members of Congress more than 30,000 times through phone calls, letters, in-person meetings, and via social media.
Now that the ACT for ALS has been passed, the programs it outlines need to be funded before they’re enacted. The Association is working with congressional leaders to secure the funding.
Believe it or not, we’re getting ready to kick things back in gear for this year’s Walk to Defeat ALS. Walk day is a wonderful time to gather as a community, celebrate our loved ones and applaud all of our achievements. What’s at the heart of the Walk to Defeat ALS, however, is the fundraising that provides vital services to people living with ALS and their families, including our clinics, equipment loan pool and our team of trained professionals.
Registration for the 2022 Walks open on February 1st. The following are just a few of ideas to help you fundraise throughout the year for The Walk to Defeat ALS. Simply follow some of these steps for a full year of fun-raising.
A Year of Fundraising
• February: Valentine’s Sweets — Offer to cook up some sweet treats for various people, for a donation to your Walk team.
• March: March Madness Bracket — Ask your friends to participate in a bracket with a buy in. The winner splits the pot with your Walk team.
• April: Raffle — Try raffling a lunch date with your company’s president or vice president.
• May: Poker Tournament — Call your card-playing friends and host an in-person or virtual poker night.
• June: Garage Sale — Join your teammates to turn your trash into much-needed treasure for ALS care and research.
• July: Ice Cream Social — Serve up some sweet sundaes for your friends and ask for a donation to attend.
• August: Backyard Movie Night — Project your movie onto a sheet or blank wall in your backyard. You can charge for admission and snacks, and it will certainly cost less than the theater!
• September: Karaoke Night — Invite your friends over for a fun night or host a virtual karaoke night. Charge an entry fee.
• October: Beer Tasting — In honor of Octoberfest, charge per person to a beer tasting event complete with pretzels, cheeses and lots of good beer! Another option is to host the beer tasting virtually and before the event, deliver the food and drinks to your friends.
• November: Game Night —Charge an entry fee and host a night of games, such as Jeopardy, Minute to Win It, and Family Feud.
• December: Ornament Sales — Gather your team to make Christmas ornaments and sell them for a donation.
• January: New Year’s Resolution — Spread the news that your resolution is to raise XX amount of money in the news year, for your Walk team. Share on your Facebook, Instagram and Twitter.
Caregiver New Year’s Resolutions
By: Tara Dhakal, LMSW, ALS Navigator
It’s that time of year again to make those pesky New Year’s resolutions. For caregivers, the thought of putting yourself back on the priority list can be hard. Difficult as it may seem, focusing on you is necessary and deserved. I challenge each of you caregivers to consider one of these to jot down and tape up to your mirror as a daily reminder.
1) Get help, so you’re not doing everything by yourself.
• Accept help that is being offered and ask for help when you need it.
• Create a wish list of all the ways someone would be able to help whether it’s hands-on care of your loved one or running errands, doing household chores, etc.
• Consider hiring someone to help out.
• Consider relaxing your standards for time-consuming chores, like cleaning or cooking.
2) Do something for YOU every day.
• Take micro-breaks throughout the day. This is an effective way to reduce stress when you’re short on time.
• Take a walk, or if finding the time for this is more of a challenge, allow yourself a moment to do some simple stretches, such as rolling your neck or touching your toes.
• Meditate, or if that’s not your thing, take a moment to be mindful. Focus on your breathing and remove all other thoughts by concentrating only on your breath.
• Read that article you tucked away to read “when you had some time.”
3) Give yourself permission to feel.
• Having a positive attitude has many benefits. It’s also important, however, to acknowledge and experience feelings of sadness, frustration and anger when they inevitably occur.
• Name the feeling and own it, “I am mad today and that’s okay.”
• Practice letting go of negative feelings.
Lastly give yourself permission to keep the resolution you chose and let go of that guilt. This resolution was meant to inspire and motivate you to do some critical reflecting and creative thinking, to help you find solutions that will give you time for self-care. You’ll be a more effective caregiver when your own needs are met.
Bring it on 2022, we’re ready for you.
Director of Mission Strategy & Integration
After 26 years with The Chapter, Sally Dwyer is now working with The ALS Association’s National Office. Sally was the Director of Mission Strategy & Integration for The Chapter. In her new role as Vice President of Care Services, she is working with chapters throughout the country and continuing to assist families who are battling ALS. We wish her all the best with this next adventure and are so excited for her!
The Chapter welcomed back a familiar face last year. In October, Shannon Todd started as the Chapter’s new Director of Mission Strategy & Integration. Shannon previously was with The Chapter from 2006-2018, as the Nebraska ALS Navigator. She has a Master’s in Social Work and Public Administration and is a Certified Case Manager. Most recently Shannon was a manager with UnitedHealthcare working with Medicaid Expansion in Nebraska.
“I am very happy to return to The Chapter in this new role to serve those living with ALS and their families. I look forward to working with the Chapter’s amazing staff and our community partners, including our ALS Certified Centers and clinics, to continue building a strong network of support, resources and care for our clients, caregivers and families,” Shannon said.
Shannon lives in Omaha, Nebraska with her husband Brent and two daughters, who keep her busy with school events, sports and other activities. She loves being outdoors, baking and spending time with her family. Welcome back Shannon!
Sally Dwyer (left) has joined The ALS Association’s National Office and Shannon Todd (right) is now The Chapter’s Director of Mission Strategy & Integration.
Care Portal Update
For the past few years, The ALS Association Mid-America Chapter has partnered with Heart To Heart Network, LLC to provide a Care Portal to people living with ALS. The main function of the Care Portal is the ALS Functional Rating Scale, a 12-point questionnaire.
Beginning February 1, 2022, The Care Portal will no longer be available. The Chapter has made the decision to close the Care Portal, due to the development of new technology and opportunities available in the future. If you would like more information or have any questions, contact your local ALS Navigator.
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 Quality of Life Grant will provide a maximum benefit of $400 annually to a person living with ALS in Kansas, Nebraska or Missouri. If you received a Quality of Life Grant in 2021, you are eligible to receive a grant starting January 1, 2022.
The grant reimburses ALS families for their needs in respite, communication, home modification, access to medical care and for special circumstances. Below are some of the ways the grants are being used:
1) Respite: professional home care, patient sitting services by anyone not living in 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.
Whether you volunteer your time, make monetary donations, or participate in charitable events, your support of our mission makes a difference. If you’re looking for a simple, automatic way to continue supporting our work, you could start your Amazon shopping at smile.amazon.com. You shop as you normally would on the site, at no extra cost to you, and you don’t need to make a separate account.
Through AmazonSmile, Amazon donates 0.5% of the purchase price from your eligible AmazonSmile purchases. While 0.5% is not a large donation – AmazonSmile is a great way to shop and do good, at no extra cost. Below are 4 easy steps to add The ALS Association Mid-America Chapter as your AmazonSmile charity.
Celebrating the Holidays
As we approach the holiday season, our ALS Navigators have frequently been asked to share some advice for those celebrating holidays. Below are a few ways that caregivers and loved ones alike can help make the holidays more enjoyable for everyone, including your loved one living with ALS.
1) Be clear about your energy level. Let family members know that your caregiving duties are keeping you very busy and that you only have so much energy for holiday events and activities.
2) Share your holiday wish list with those looking to help:
• Respite: Consider asking for time off from caregiving duties as a gift for the holidays. This could mean another family member gives you a break or even pays for a home care worker to assist you.
• Home repairs: Do light bulbs need changing, or grab bars need installation? Tasks such as these may be the perfect way for a family member to help out.
• Care for you! How about a gift certificate for a massage, facial or manicure? How about an opportunity to spend the day fishing or a walk in the outdoors?
3) Reflect on the rewards: Reflecting on the rewards of caregiving can help maintain your self-esteem. It may feel very rewarding to know that you are fulfilling a vow or promise you have made to the person for whom you provide care. You may also be experiencing a great deal of growth, as you learn new skills and meet challenges in ways you never imagined possible.
Convene a meeting of those family members who want to play a role in celebrating the holidays, including the family member who is living with ALS. Keep in mind if that family member played a central role in celebrating the holiday in the past, there will be much more for others to do. However, allow the person with ALS to have some say in how much of a role he or she is able to take, given his or her stamina.
Family traditions are the glue that keep a family connected over time. They are also a way that families traditionally have weathered crises, including terminal illness in a loved one. Moving forward with a new family tradition is one way for families to build their resilience and potentially emerge even stronger together.
In order to create new traditions, delegate responsibilities. Determine who will step up and take responsibility for what will become a new family tradition. The person can help decide where the new tradition will take place, what kinds of food will be served, who will prepare them and how gift giving will be handled.
It may seem hard to manage a celebration, but with the help of loved ones, the holidays can still be great time to cultivate a spirit of gratitude and to re-focus on the things that are most meaningful. The ALS Association Mid- America Chapter wishes you and your family a safe and happy holiday season!
Although events looked differently this year, 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.
A Night of Hope Gala
The year began with A Night of Hope Gala on March 4th and raised over $121,000 to support the fight against ALS. The online event was a 45-minute variety show fundraiser, that attendees could stream anywhere. The variety show featured a cooking demonstration, a cocktail mixology lesson, premium auction items and stories of hope and courage.
The Joe McGuff ALS Golf Classic
The 38th Annual Joe McGuff ALS Golf Classic Presented by Davis, Bethune and Jones was held on May 10th at the Nicklaus Golf Club at LionsGate in Leawood, Kansas. Local celebrities Tom Watson and George Brett, along with other celebrities joined over 100 golfers to raise money towards the fight against ALS. The golfers enjoyed a beautiful day and raised over $126,000 in the process!
The Walk to Defeat ALS
The 2021 Walk season was a success and big thank you is due! From Corporate Partners, to team captains, volunteers, donors, and everyone who participated in one of our walks - everyone went above and beyond to make the walk season a success. Money continues to roll in, and we expect to see the thermometer continue to rise, but so far the walks have raised more than $1,100,000! Walks will be accepting donations through the end of the year, so you can still be a part of the movement to cure ALS.
National Caregivers Month
People living with ALS are continually faced with change and finding ways to cope with it. Coming to terms with the need for receiving help from others – the need for a caregiver – is generally something most people are very slow to accept. It is emotionally difficult to receive intimate care from one’s spouse, children, or parents. Even the start of personal care by a professional nurse or aide requires time, patience and understanding.
However, the problems associated with caregiving are not limited to the person with ALS. The caregiver, especially the family caregiver – spouse, partner, adult child, parent, brother, sister – needs acknowledgement and support in the process of starting and maintaining the care providing relationship. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Being the primary caregiver for a loved one with ALS can be stressful — not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job. Often, caregivers are so busy supporting their loved ones that their own physical or mental health takes second priority.
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. For more information about caregiving and resources available, contact your local ALS Navigator.
Caregiver’s Bill of Rights
Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the ALS patient often causes the caregiver to overlook her/his own needs – eating properly, getting enough rest, and taking time to pursue one’s own interests. Below is the “Caregiver’s Bill of Rights.” These statements are important for each caregiver to remember, as they continue to care for their loved one living with ALS.
• I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
• I have the right to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
• I have the right to maintain facets of my own life that do not include the person I care for just as I would if he or she were healthy. I know that I do everything that I reasonably can do for this person and I have the right to do some things for just myself.
• I have the right to get angry, be depressed, and express difficult feelings occasionally.
• I have the right to reject any attempt by my loved one (either consciously or unconsciously) to manipulate me through guilt or anger.
• I have the right to receive considerations, affection, forgiveness, and acceptance for what I do for my loved one as I offer these attributes in return.
• I have the right to take pride in what I am accomplishing and to applaud the courage it has taken to meet the needs of my loved one.
• I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my full-time help.
• I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
When you’re providing around-the-clock care for a person with ALS, stress and burnout are to be expected. When added to the stress of everyday life, work, and family, caregiving can be overwhelming. Above all else, ALS caregivers must practice self-care. Practicing self-care simply means taking care of yourself, though that is much easier said than done. Caregivers can’t always get adequate personal time, which is needed to rest, recuperate, and prepare to take on another day. Foregoing self-care often leads to burnout, which can impair your ability to provide adequate care for a loved one. These self-care strategies can help you manage your stress and emotional well-being.
• Take alone time. Whether it’s a few hours to read a book or a 20-minute walk around the block, you should take a little time every week to spend time alone.
• Make your needs known. It’s important to not forgo your own needs in order to provide care. Create time to do the activities that are important to you, like church, meditation, or yoga, and communicate your schedule to the person you are providing care for.
• Seek out a support network. Support from family, friends, and your community is essential while providing care for a person living with ALS.
• Ask for help. If you need a break, ask for help from loved ones and friends. Likely, they’ll be more than willing to pitch in.
• Watch for depression. Depression is the most common healthcare condition reported by family caregivers, and it can strike without warning. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. Remember, you do not have to live with depression, and you do not have to cope with depression alone.
• Manage your stress. Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits, and making decisions to do things for themselves. Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be very beneficial, as can physical exercise, creative activities, humor, and social/family events.
• Educate yourself. Knowledge is empowering. Learn as much about ALS and caregiving as you can. The more you know, the more prepared you will be in providing care and support. Ask friends and relatives to help gather information and resources, and reach out to us if you need help finding information. Once you have educated yourself, you can become an advocate for your loved one and for yourself.
• Remember that you are more than a caregiver. When they become a caregiver, some people lose touch with the relationships they had with their loved ones before the illness. To counteract this, identify ways to keep your relationships and family roles alive, like staying up to date with family events and news and connecting with friends and neighbors. Making the effort to retain the relationship you have had with your loved one outside of your role as caregiver will help you cope with the challenges of family caregiving.
• Talk to other caregivers. Caregivers who share resources and their own personal experiences report less stress and fewer caregiving problems. Building community and support systems, online or in person, with other caregivers is a great way to share solutions to common problems. But most importantly, you can talk with people who understand your experiences first-hand.
• Utilize assistance programs. ALS can take a massive financial toll, so you should take advantage of local, state, and federal programs that support and assist caregivers. Military veterans with ALS may be eligible for an allowance to help pay for in-home care. The ALS Association Mid-America Chapter also offers an annual grant of $400, which can be awarded to families battling ALS in Kansas, Missouri and Nebraska. The Quality of Life Grant will reimburse ALS families for their needs in respite, communication, home modification, access to medical care and for special circumstances. An application is required.
• Consider respite care. Many agencies and non-profit organizations offer respite services.
• Know your financial options. Some states offer tax credits and deductions for family caregivers. Employed caregivers may want to apply for unpaid Federal Family and Medical Leave (FMLA).
Contact your local ALS Navigator for more information about The Quality of Life Grant and more caregiving resources.
Caregiver Nutrition Tips
While many educational efforts focus on optimizing the nutrition status of people with ALS, a healthy, balanced diet is extremely important for caregivers as well. Here are some tactics to simplify mealtimes while still eating healthy:
1) Ask for help. Suggesting making a nutritious meal is a simple, practical way for people to feel involved.
2) Batch cook. Make double the meal size you usually do and freeze half to eat at another time.
3) Make one-pot meals.
4) Break out the slow cooker.
5) Repeat meals.
6) Sign up for home-delivered meals.
7) Have groceries delivered/ready for pick up.
8) Meal prep.
9) Don’t undermine smoothies and protein shakes as meals.
10) Buy healthy fast food or grocery store prepared foods.