In the News
May is ALS Awareness Month
May 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 ALS advocate. It is through your advocacy that, together, we will create a world without ALS. To sign up to become an ALS Advocate, visit: www.als.org/advocacy
In addition, last year, The ALS Association developed a national state-wide advocacy department and began a goal of increasing state-specific advocacy and policy change. This effort led us into 2023 well positioned to be more involved with state policy and advocacy than we have ever been in the past. For more information about local advocacy, visit: www.als.org/advocacy/state-policy-advocacy
Share your story: Whether you are a person living with ALS, a caregiver, or loved one to someone living with ALS, sharing your story can help others in the ALS community and beyond feel connected to the impact of this disease. Your personal perspective plays an important role in educating and mobilizing policymakers to allocate funding to develop treatments for ALS and work to improve the lives of people living with ALS. To share your story, visit: www.als.org/share-your-als-story.
Advanced Directives
Developing advance directives can help you express your wishes. Typically, advance directives include your healthcare decisions in writing and appoint a person to make decisions for you, when you are unable to communicate your wishes yourself.
Each state has its own guidelines. You can obtain the correct advance directive forms for your state for free on the National Hospice and Palliative Care Organization’s website: www.caringinfo.org/planning/advance-directives/by-state/ .
You do not need to use an attorney to develop an advance directive.
Healthcare Treatment Directives
When you put your healthcare decisions in writing, that is sometimes referred to as a “living will.” For example, in Kansas, the advance directive form includes “Kansas Declaration” which is the state’s living will. In Missouri, a broader term is used on the advance directive form: “Health Care Choices Directive.” This is similar to a living will but addresses a broader range of decisions. These differences are why it is important to look at your state’s advance directive forms.
Power of attorney
When you appoint someone to make decisions for you, it is called power of attorney. There are two main types of powers of attorney: healthcare powers of attorney and financial powers of attorney. A healthcare power of attorney is a separate document from a financial power of attorney. The advance directives form for each state noted above include a healthcare power of attorney form.
Another great resource for advance directives is “Caring Conversations,” a booklet provided by the Center for Practical Bioethics. The booklet includes a form that is a Durable Power of Attorney for Healthcare Decisions on the first page and a Healthcare Treatment Directive on the second page. This booklet is available to be downloaded for free by individuals at: https://www.practicalbioethics.org/featured-resources/caring-conversations/.
Portable Medical Orders (POLST) forms
An additional step that can be taken by someone who is seriously ill is to complete a type of advance directive called a Portable Medical Orders, also known as a POLST form. The form is a set of medical orders that address critical medical decisions, and may include a Do Not Resuscitate (DNR), but it also can address other types of treatment such as feeding tubes and mechanical ventilation. A POLST form is developed along with your doctor and is signed by both you and your medical provider. This type of document is honored by emergency medical technicians.
The non-profit organization, National POLST, has the appropriate forms for every state available on its website: https://polst.org/.
Once a POLST form has been completed, a copy should be put in your medical record; and you should keep it available in a visible location in your home.
Next steps after completing advance directives.
Once you have completed any advance directives, be sure they are readily available when needed. It’s recommended to give copies to your medical providers and to family and friends, who are involved in your care.
Below are services available to scan and store advance directives online:
• My Directives: https://mydirectives.com/
• U.S. Advance Care Plan Registry (formerly U.S. Living Will Registry): https://www.usacpr.com/
The ALS Association’s Care Services staff can assist in learning about and completing advance directives. Contact your local ALS Navigator for more information.
The Walk to Defeat ALS FAQ’s
The Walk to Defeat ALS is just around the corner! The Walk to Defeat ALS is the #1 way to unite and fundraise for those living with ALS. Each year, fundraising through the Walk drives bold and urgent innovation as we march together toward a cure for ALS.
Below are a few Walk to Defeat ALS FAQ’s. For more information about The Walk to Defeat ALS, contact Kate Hansen at kate.hansen@als.org.
Who Can Participate in the Walk? Anyone and everyone can become part of the fight against ALS by joining a local Walk to Defeat ALS. All Walk routes are wheelchair accessible and Walk Day activities include something for all ages!
Is There a Fee to Participate? There is NO FEE to participate in the Walk to Defeat ALS but fundraising is encouraged. Funds raised contribute to local care service programs, global ALS research, and nationwide advocacy. Walk participants can raise anywhere from $100 to $100,000 dollars - the sky is the limit!
How Do I Register for the Walk? Registering for your local Walk to Defeat ALS is quick, easy and can be done from the comfort of your home in 4 easy steps!
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First, visit www.walktodefeatals.org and select the Walk location you would like to join. You can search by zip code or state.
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Next, select Register and decide if you’re participating as a member of a Walk Team, Individual Walker or Virtual Walker.
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Complete the appropriate Online Registration Form to become an official participant of your local Walk!
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Once you’ve registered, you’ll receive access to your online fundraising Participant Center, where you can update your personal page, connect your Walk fundraiser to Facebook, and send emails asking for support.
What is a Walk Team? Anyone can create a team and then invite their family, friends, neighbors, and co-workers to join the movement. Each person will have access to their own personal fundraising page and online fundraising center and they can reach out to their networks to help broaden their reach and impact. All the funds raised will be credited towards the team. Walk Teams and their fundraising efforts drive the success of a Walk.
Equipment for Daily Tasks
A diagnosis of ALS can mean progressive loss of independence and function with activities we take for granted. Fortunately, equipment is available to help perform and participate in daily tasks despite changes in strength, coordination, endurance, and balance.
For example, fully electric hospital beds are valuable for a variety of reasons. The head and the foot of the bed can be separately elevated for comfort, respiratory support, and pressure relief. The entire bed can raise and lower to make moving in/out of the bed easier. In addition, mattress toppers made of memory foam or with alternating air pressure systems can support comfort and prevent skin and soft tissue problems.
Bathroom Safety and Equipment
Wet surfaces, stepping over barriers, and moving from surface to surface can all increase fall risk, and activities such as showering/bathing can consume a large amount of energy. Every bathroom is unique, and a home safety evaluation can help determine appropriate options and advise on placement of grab bars, shower chairs, benches that allow the user to sit securely while entering/exiting a tub/shower, chairs designed to roll in/ out of showers, and added supports around the toilet. While historically not common in the US, a bidet can solve challenges with hygiene.
At some point, moving from one seat/location to another (transfers) can become difficult and/or unsafe. There are tools that make transfers safer for you and a caregiver: gait/transfer belts provide a secure and comfortable handhold, and pivot disks or Beezy boards allow movement without the need to take steps to pivot or lift your body off a sitting surface to scoot.
Mechanical and power lifts are designed to raise a person into supported standing or supported sitting from any surface, and can be wheeled to the next location, reducing strain on both the person with ALS and their caregiver. A variety of sling options ensure safety and comfort.
Physical changes and the resulting challenges can feel overwhelming! Tools are available to lessen the impact of many ALS symptoms on daily life. Your ALS Navigator and ALS clinic team can help determine which tools may be useful to you!