May is ALS Awareness Month: An ALS Story from Rich Sommers

ALS is a progressive disease that affects nearly 5,000 people in the United States each year (CDC, 2022). Approximately 80-95% of individuals with ALS will require the use of AAC to support their communication needs (Beukelman et al., 2011). Every May, people from all over the world come together to raise awareness about ALS. This month, Rich Sommers and his family share their ALS story.

My Dad, Rich Sommers was diagnosed with ALS in February 2021. He fought a hard fight until he found peace on Aug. 18, 2022. My Dad was fit, healthy, fun, hardworking, and loved his family more than anything. He found joy in the simple things and always found a way to make life fun. He felt he lived a full life even though it was cut short. He did everything 110% and was always the center of attention in any room. He was kind to everyone he met and respected by all who knew him. He was the life of the party and the center of our world.

ALS has no cure and the one foundation that made the biggest difference in his quality of life was Team Gleason. Team Gleason provided voice banking for my Dad so that he could use an eye gaze speech-generating device given to him by the funds raised with Team Gleason. This was his only way of communicating with us. This was the only way he could tell us what he needed or anything he had to say and he had to type out each word letter by letter with his eyes. This type of device and service was not covered by insurance, in fact most things needed by anyone with ALS are NOT covered by insurance. Team Gleason gives everything they can to support people with ALS. They help transfer people and their equipment places so they can be with their loved ones or attend an event. Without them these things would not be possible. The one thing about this organization is they treat everyone they serve like nothing has changed. When we would call them on speaker phone for my Dad, knowing he couldn't talk, they still would speak to him as if they were old friends. They keep humanity and kindness at the center of each conversation. They do everything they can to support anyone living with ALS and their families. All of this is possible with donations only. That is the only way these things can happen. Every single dollar counts and will dramatically change someone's quality of life and their families that care for them.

On my Dad's last day he used his eye-gaze system to write a letter to to advocate for others who run into issues of getting certain equipment that are necessary for quality of life. That is the kind of person my dad was and will always be. He gave back, and I will continue to give back and honor that through donation rides such as this.

Here is Rich's letter:

Having the fast-progressing bulbar ALS having the right communication method at each stage of the progression was critical. If you could not access the proper communication at the right time, you would feel helpless, frustrated and depressed. With bulbar ALS you lose the ability to speak, eat and drink. As much as I miss my favorite meals and wines, the loss of communication had the biggest impact of all. Learning what resources are available at different stages of communication loss is critical. For example, if you cannot speak but still have good dexterity in your hands an app on your phone can be an effective way to communicate along with texting and email. The real challenge comes when you lose both speech and hand dexterity. This is when a communication device such as the Forbes WinSlate with eye gaze capability becomes not only a necessary tool but an absolute Godsend! The WinSlate with eye gaze gives you the ability to speak and communicate with the world using just your eyes to share your thoughts and feelings. The key is to start the process for obtaining this technology as early in the disease progression as possible. The process of getting insurance approvals can take longer than the progression of the disease, leaving you with no effective way to communicate which will leave you with feelings of despair and depression. Some insurance companies will tell you that the eye gaze feature is a 'comfort' item, even though it is the only avenue you have left to communicate. It's also crucial to get the wheelchair bracket to hold the device at the time you order your wheelchair. Otherwise, your mobility will be limited to a fixed table or floor stand which is very restrictive. Following this advice from someone (me) who learned the hands-on hard way can save you a ton of frustration. Thanks to the great people at Forbes AAC, Team Gleason, and the ALS association, they teamed up to make the diving catches and keep me in the game even with the errors I made along the way! I am eternally grateful.

- Rich Sommers

Forbes AAC wants to thank Rich and his family for sharing their story with us for ALS Awareness Month this May!

References:

• American Speech-Language-Hearing Association (n.d.). Augmentative and Alternative Communication (Practice Portal). www.asha.org/Practice-Portal/Professional-Issues/Augmentative-and-Alternative-Communication/

• Beukelman, D., Fager, S., & Nordness, A. (2011). Communication support for people with ALS. Neurology Research International, 2011, 714693. https://doi.org/10.1155/2011/714693

• Centers for Disease Control and Prevention (2022, September 12). National Amyotrophic Lateral Sclerosis (ALS) Registry Frequently Asked Questions. https://www.cdc.gov/als/ALSFAQ.html