In the News
Talking with Children and Youths about ALS
By: Cheri Mathis, LSCSW, LCSW, Care Services Specialist
ALS not only affects the person diagnosed; it also affects the family as a whole. Families often include children and youths. Many parents worry that they will burden or scare children by talking about ALS, what it is and what will happen to their family member. Children and youths see changes and sense other family members' worry, sadness and grief, but are often afraid to upset them by asking or talking about what is going on. Children often understand much more than we give them credit for, so starting from a point of openness and honesty is very important.
Many children and youths are also involved in some type of caregiving. Being a young caregiver is not inherently bad or negative, nor is the person with ALS a bad parent or grandparent for needing the care provided by a child or youth. Indeed, being a caregiver can be an extraordinary opportunity to share and build relationships in the home. What is important is that the youth be recognized, supported, and encouraged to have outlets beyond care.
You may wonder how to talk to your children about this illness, the care they are providing and the changes in the family. Where do you go for support, education and guidance? You don’t have to have all the answers. And there is no one right way to handle these conversations and the role your child or youth may play in caregiving. What and how you communicate will depend on the age and involvement of the child or youth, their relationship to the person with ALS, and how your family communicates. The key theme is communication – how to do it, maintain it and include it in everyday life. How can you start and keep the conversation going? How can the individual and family live with ALS, not in spite of ALS?
An ALS Resource Guide - Families and ALS: A Guide for Talking with and Supporting Children and Youths can help. In addition, three youth education books were developed for children, teens, and young adults. These books follow the same structure as the family guide (i.e. addressing what is ALS, caregiving, family and friends, school/work, and death, dying, loss and grief). Yet, each book is presented to target the developmental stage of the youth. If you are interested in receiving these resources, contact your local Care Services Specialist.
Ongoing conversation is one way to make the family experience “normal.” Often the best thing you can do is be there and listen. Your children may be angry, confused, or sad. Hear them and allow them their feelings. Then keep the conversation going. In the end, you know your child and youth and how he or she hears and absorbs information. Hopefully the above guides will help you and your family talk openly and honestly about ALS, fears, concerns, and joys.
Contact your Care Services Specialist for support for you and your family, and to obtain these resources.
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.
- better understand who gets ALS and what factors affect the disease.
- enhance 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.
Walk your Way
2020 will be remembered as the year the coronavirus shut down virtually the whole world. Home became the office, school, church, and social hall for most of us. So, not surprisingly, it has also become the place where we Walk to Defeat ALS. The timeless adage has been that “Home is Where the Heart is.” Now, we are saying, “The Walk is Where Your Heart is.”
“We really wanted to keep the walks in-person,” said Colleen Wachter, Executive Director of The Mid-America Chapter. “We waited as long as we could to pull the cord, but in the end, it was not safe for our families, our staff or any of the countless volunteers who join us at each walk. For us, people with ALS and their families come first, and putting them at risk was not acceptable.”
The result is the Walk Your Way campaign. Instead of coming to one location and walking with hundreds of your closest friends, we are challenging all our friends, families, and corporate sponsors to do their own walk. And that walk will look different for each person. Some people might choose to get their team together and walk through a neighborhood (while wearing masks). Others might decide to take a walk in the park by themselves. Others might arrange a parade to go by their loved one’s home to show support that way.
Erin McNamara, the Development Manager for the Kansas City and Emporia Walks, said, “It’s really less about what you do, and more about the spirit of staying in the fight.”
“Whether you choose to walk a mile or do a pogo stick a-thon, it’s about showing your support, and hopefully raising some funds along the way.”
The Chapter has set aside four dates starting August 22nd and ending October 3rd to give everyone the chance to still be a part of the walk fun. “We’re still not together, but we’re sort of together when we all walk on one day.” Wachter said, “It’s not the same, but it’s as close as we can get.”
The walk dates listed are suggestions. If you and your team cannot make those days, pick one that works for you.
Walk to Defeat ALS Sponsor Spotlight
The Walk to Defeat ALS would not be possible without the support of our corporate sponsors. Our corporate sponsors are essential in allowing us to continue to provide care and support for our local families while still investing in improved treatment options and a cure.
We would like to highlight two corporate sponsors, Blue Cross & Blue Shield of Kansas City and Performance Contracting Group. Both of the companies have been incredible assets to The Walk to Defeat ALS, and each one makes a tremendous impact on the fundraising goal each year.
Blue Cross & Blue Shield of Kansas City has been a Walk to Defeat ALS sponsor for over 10 years. In addition to being a corporate sponsor, the Blue KC team has been a top fundraising team for several years as well. The team has held several bake sales over the years to increase awareness and raise funds for The Walk. Last year, the Blue KC Team raised over $10,000!
Performance Contracting Group has also been a sponsor for The Walk to Defeat ALS for several years, as well as sponsored the Joe McGuff ALS Golf Classic. The PCG Cares team had over 25 members attend the 2019 Kansas City Walk to Defeat ALS, and they are very excited to participate again in 2020!
The Nebraska Walk to Defeat ALS is around the corner and one of our corporate sponsors this year is Bank of Bennington. The President and CEO of Bank of Bennington is Leslie Andersen, who is also is our Corporate Recruitment Chair for The Walk. Leslie, along with the entire Bank of Bennington team has been an incredible asset to The 2020 Walk to Defeat ALS.
Bank of Bennington was a corporate fundraising team in the past, but decided to kick it up a notch this year and sponsor The Walk to Defeat ALS!
The company decided to rally together and make this year a celebration of Dave Clark. Dave was the father of Bank of Bennington’s current CFO, Tim Clark. Dave was a well-known individual in Bennington, Nebraska and recently passed away from ALS.
Bank of Bennington’s drive and determination is felt in all their fundraising efforts and currently they are one of our top fundraising teams! We would like to the thank Bank of Bennington for their continued dedication and commitment to defeat ALS.
CoxHealth has been an incredible corporate sponsor, making a tremendous impact on The Walk’s fundraising goal each year. CoxHealth has partnered with The ALS Association Mid-America Chapter for many years. Whether it’s providing services at the ALS Treatment Center in Springfield or raising funds for The Walk to Defeat ALS; CoxHealth has remained dedicated in supporting the ALS community.
Sally Dwyer, Director of Mission Strategy for The ALS Association Mid-America Chapter, said, “CoxHealth’s donations help us provide equipment, Quality of Life grants, an ALS multidisciplinary clinic, an array of ALS kits and materials, and more, to people with ALS and their families in Southern Missouri.”
Thank you to CoxHealth and all of our corporate sponsors for being such a vital component of The Walk to Defeat ALS!
We would like to thank Blue Cross & Blue Shield of Kansas, Phoenix Home Care & Hospice, LearJet Employees Care Fund, Jimmy John’s, and Tito’s Handmade Vodka for supporting the Wichita Walk to Defeat ALS. Each of the organizations have been long time supporters of the ALS community.
The overall 2020 Wichita Walk to Defeat ALS goal is $180,000 and we currently have over $11,000 in corporate sponsorships! Thank you to all of our corporate sponsors for being such a vital component of the Walk to Defeat ALS!
By: Cheryl Skinner, Respiratory Therapist, The University of Kansas Health System
As a patient with Amyotrophic Lateral Sclerosis (ALS) or as a caregiver to a person with ALS, you may be wondering…will this disease affect breathing? Does a respiratory therapist need to be seen during the ALS clinic visit? What is the RT’s role in helping patients with ALS? How will I know if I need equipment? What is the difference between non-invasive ventilation and invasive ventilation? Here are some answers to these questions.
Will ALS affect breathing? ALS weakens the muscles involved in breathing and coughing but does not impair the lungs. The muscles impaired include the diaphragm and the intercostal muscles between the ribs. Ineffective breathing makes a person with ALS more susceptible to respiratory infections such as pneumonia. ALS can cause shortness of breath during rest or with activity, weakened cough, increased mucous secretions, inability to clear secretions, obstructive sleep apnea, hypoventilation and fatigue. Failure of the respiratory muscles may eventually occur.
Does a RT need to be seen in the ALS clinic? ALS can affect breathing early on during the disease process. Respiratory function is usually assessed at each ALS clinic visit. During your first clinic visit baseline testing is performed. Repeat testing is completed and tracked during subsequent visits. When respiratory function declines and symptoms become problematic, home medical equipment is recommended to improve symptom management and ease the work of breathing.
What is the respiratory therapist’s role in helping patients with ALS? A respiratory therapist specializes in the respiratory effects of ALS and provides education to ALS patients, families and caregivers. The respiratory therapist evaluates the patient’s breathing and measures respiratory muscle strength. RTs also provide expertise in the necessary equipment required to relieve symptoms.
How will I know if I need equipment? Testing may be completed at each visit, depending on the clinic. These tests may include a Forced Vital Capacity (FVC) and a Maximum Inspiratory Pressure (MIP). To qualify for specialized equipment (cough assist & mechanical ventilation), ALS patients must have an FVC of less than 50% and/or a MIP of less than 60 cmH2O. A respiratory therapist from the home care equipment company will provide equipment and education to qualified patients.
What are the differences between noninvasive ventilation and invasive ventilation?
Non-invasive ventilation (NIV) is delivered through a removable mask placed around the nose and/or nose and mouth. It can also be delivered through a mouthpiece. NIV is often only initiated at night, however, can be used during the day to help manage shortness of breath symptoms.
Invasive ventilation is delivered through a surgically created hole in the trachea (tracheostomy) through which the breath is given. The ventilator delivers air to ensure a minimum number of breaths per minute are provided and can be adjusted to respond to a patient’s own breathing efforts. Invasive ventilation requires a trained caregiver’s 24-hour support. During advanced stages of ALS, invasive ventilation is the most reliable means of delivering air to the lungs. ALS patients who decide to terminate invasive ventilation will endure respiratory failure.
If you have ALS, discuss breathing support options early with the ALS multidisciplinary team and caregivers at home to determine the best option. Your decision may change over time, so it is important to revisit your options. It is recommended that a decision is determined prior to a serious decline in respiratory function and your decision has been shared with your physician, the health care team and most importantly your family.
Breathing is Essential
Advocacy Conference Recap
The 2020 National ALS Virtual Advocacy Conference was held at the beginning of June. This yearly event is usually held in Washington, D.C. with over 600 attendees, including people living with ALS, Chapter staff and board members. This was the first year the conference has gone virtual and it was a huge success!
The week started with several webinars, each highlighting important pillars of The ALS Association’s mission, “to discover a treatment and cure for a ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” Attendees heard from many speakers about congressional progress ALS advocates have made, recent developments in ALS research and the changing environment of care due to the COVID-19 pandemic.
Nine advocates represented The Chapter and people living with ALS in Kansas, Missouri and Nebraska. On Tuesday, June 2, the advocates participated in a total of 13 virtual meetings with members of Congress and their staff. The Chapter’s advocates contributed to the total 350 virtual meetings held on June 2 with legislative staff and ALS advocates throughout the country.
The advocates shared their powerful stories with the legislative staff. In addition, they urged Congress to take action on issues important to people living with ALS. Advocates asked Congress to:
• Pass the ALS Disability Insurance Access Act (H.R. 1407/S. 578)
• Fix the law to ensure that people with ALS who have traditional Medicare can receive home infusion for ALS drugs that need to be delivered intravenously.
• Support FY21 appropriations asks:
At least $40 million for the DOD ALS Research Program (ALSRP) to enable the program to support early stage clinical trials.
At least $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.
The conference wrapped up Wednesday with a final push, The ALS Association’s Call Congress Day, where advocates called their senators and representative and urged them to pass the ALS Disability Insurance Access Act (S. 578/ H.R. 1407). Supported by 62 senators and 238 representatives – more than half of each chamber – the ALS Disability Insurance Access Act would waive the five-month waiting period before people living with ALS can receive their SSDI benefits.
Thank you to all our advocates who attended (virtually) this year’s National ALS Advocacy Conference! The conference may be over, however, advocacy is needed year round to be effective. You can lead us closer to a world without ALS by joining the dedicated network of ALS advocates nation-wide. To become an ALS advocate, visit www.alsa.org/advocacy.
Here at The ALS Association Mid-America Chapter, we are beyond lucky to have so many amazing and creative team captains leading their friends, family and coworkers in The Walk to Defeat ALS. Each year our captains get their creative juices flowing to come up with bigger and better ways to raise money to help Unlock ALS. This year, with social distancing and COVID-19, many teams will be moving to virtual fundraisers and we are excited to see what they come up with!
In Kansas City, one of the Top FUNdraising teams is Team Holeman and their captain, Jeremy Holeman. Jeremy not only is an amazing fundraiser, he also does a great job spreading awareness about ALS. In the last few years Team Holeman has consistently been a top fundraising team and to date has raised more than $60,000.
In 2019, Team Holeman raised over $11,000 contributing to the overall success of The Kansas City Walk to Defeat ALS. Year after year they have been crushing their goals and pushing themselves to make each fundraiser bigger and better, by getting inventive when it comes to ways to engage their community in their fundraising efforts.
In Springfield, Jack's Walkers are an inspiration and have proved that coming together as one creates community growth and success. Dana Werdehausen, team captain of Jack’s Walkers, put together a fundraising effort that dominated team week’s Friday challenge of most funds raised. Crushing their competitors and shooting them to the top of our friends and family teams in Springfield, they collectively raised over $4,000 in one week.
Werdehausen put on a “Pie in the Face” challenge amongst good friends and family of her father, Jack, to raise money in memory and to help find a cure. With a full and heavy heart, she says, “I walk in memory of my dad, Jack Rinker. He not only was an amazing man and dad, he fought this disease with dignity and courage. Dad might have lost his battle with ALS, but he showed us all how to live.”
Eyes Wide Open is a returning team in Wichita and is led by Jack Wilson. He is known for his bright spirit, sense of humor, and artistic talent. He also is a small-business owner of Art & Frame. Jack was diagnosed with ALS in March 2011, after having onset extremity weakness. For the last nine years, Jack has continued his voyage with Eyes Wide Open and his team will not stop until there is a cure.
In one week, Eyes Wide Open raised over $4,000 with the help of their friends, family and even strangers. Jack’s passion to find a cure has led his team to a Team Week victory. As the top fundraising friends and family team in Wichita, Jack advised, “Seize the moment and stay strong.” Even under these circumstances, he continues to exclaim, “Ain’t life grand!”
One of our top teams in Omaha is Sam Club! This team is comprised of active military members working to spread awareness for ALS. Upon joining the military, the team members were not aware that people who serve in the military are twice as likely to develop ALS.
Caleb Ellison, Sam Club’s team captain, stated, “I had no idea how serious ALS is until I really started researching and understanding the disease, and now that I have this information I feel as though it is my responsibility to teach others in my career field.” Another member from Sam Club, Zachary Boyanton said, “Giving hope to at least one person affected by this is my ultimate goal in being a part of this event.”
We’re thankful for everyone who comes together as a community and fundraises to support the fight against ALS. With the funds raised in The Walk to Defeat ALS, our Chapter is able to offer all of our services free of charge to people living with ALS and their families. If you would like to donate to The Walk, visit www.walktodefeatals.org.
Equipment and Adaptation Program
People with ALS may need extensive medical and communication equipment at some point during their illness. The ALS Association Mid-America Chapter’s Equipment and Adaptation Program provides the following options:
• The evaluation of needs.
• Identification of the best source of recommended devices and adaptations.
• Loan pool of used equipment that can be used if other sources are not available or if there is a delay in receiving equipment.
Our equipment loan pool consists of primarily used and donated equipment. There is no charge for this equipment and you may use it as long as it is needed.
Another resource available to people living with ALS is The Chapter’s Aids for Daily Living (ADL) Kit. Each kit includes several items that are designed to help with compromised fine motor skills. Items in an ADL kit include: Universal Holder, button hook/zipper pull, PenAgain, Kennedy Cup, elastic shoelaces, 2 extra-long straws, lipped plate, Dycem, key turner, comfy grip tablespoon, and a right-angled scoop spoon.
The ALS Association Mid-America Chapter also provides Augmentative Communication Kits to help with communication. The kit includes two resources guides, information on communication apps, as well as a Boogie Board. A Boogie Board can be helpful if you can write, but struggle to speak. The Boogie Board is a lightweight, portable, paperless writing tablet. You can write on the board with a stylus, or you’re finger and erase it by pressing a button.
Please do not hesitate to consult with us about your equipment needs or a possible equipment donation. If you would like to check for the availability of an item or donate equipment to our loan closet, please contact your local Care Services Specialist.
Zoom into Support Groups
Technology is making it possible for all of us to stay connected by utilizing virtual support groups. Have you heard of the video platform, Zoom? Well, now you can “zoom” into contact with others living with ALS from the comfort of your own home.
That’s right! You can wear your fuzzy socks, kick back, and stay connected with your ALS community all at the same time.
Over the last three months our Chapter has offered two of these virtual groups each month; one for caregivers and another for people living with ALS and their caregivers. Many have found it to be helpful.
Recently, Sally, a caregiver attendee from Overland Park, Kansas, said, “Thank you for doing this! With the need for social distancing, it is really great to connect with people who are in the same situation that we are in and not put ourselves at risk”.
If you’re unsure if this type of group will be beneficial to you, please read below for the top 5 reasons that our support group may be of assistance:
• There is “strength in numbers”. Attendees have exchanged contact information and stayed in touch after group for additional support.
• It helps to expand your current support network.
• It’s a great opportunity to learn about resources in the community, become more knowledgeable about equipment, and get advice from others facing the same challenges.
• It’s a time for self-care. We talk about the positives, brainstorm, and share coping skills.
• It’s more comfortable. You get to be in the comfort of your home with your pets and/or loved ones.
If you’re interested in joining our support groups, or for more information, please contact your local Care Services Specialist.
On April 9, the Centers for Medicare and Medicaid Services (CMS) removed noninvasive ventilators (NIV) from the competitive bidding program.
While the CMS guidance indicates COVID-19 as the reason, an intensive lobbying campaign by The ALS Association, the ALS community and partners “primed the pump” for the decision. The ALS Association led the charge on behalf of people living with ALS who would be greatly harmed if access to this life support system and respiratory therapists was restricted based on lowest price bidding.
More than a year ago, The ALS Association locked arms with the American Association for Respiratory Care, the National Association for the Medical Direction of Respiratory Care, and other partners to fight CMS’s effort to force noninvasive ventilators into competitive bidding which would reduce access to noninvasive ventilator and the support of respiratory therapists. The campaign began with calls for CMS to reverse course. When CMS refused to act, The ALS Association and partners introduced the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R. 4945) last year to leverage pressure from Congress.
Removing NIVs from competitive bidding ensure access to these life sustaining devices for at least the next three years. The ALS Association will continue to advocate with CMS to update coverage policies to ensure access to NIVs and the essential servicing provided by respiratory therapists in the future.
In April, The ALS Association Mid-America Chapter launched #StayHometoProtect, a social media campaign to support the ALS community during the COVID-19 stay at home orders. Many people joined in on the fun and shared pictures of themselves staying at home with their family and pets! Below are pictures of team captains, sponsors and Chapter staff who #StayHometoProtect. Thank you to everyone who stayed home to protect individuals living with ALS!