Amyotrophic Lateral Sclerosis (ALS), also commonly known as Lou Gehrig’s disease, is a progressive and fatal neuromuscular disease that strikes about 1 in 50,000 adults each year. May is ALS Awareness Month, during which the various chapters of the ALS Association – including the Rocky Mountain Chapter which serves families in Colorado, Wyoming and Utah – encourage the public to le
arn more about the disease and to elevate the need for funding into research for treatments and/or a cure. This year’s focus of ALS Awareness Month will include COVID-19, which exacerbates the difficulties people living with ALS face due to their vulnerability to the disease.
“Until there is a cure or some good therapeutic interventions to slow the progression of ALS, the most important thing we can do at the local level is to provide support and care so that these individuals can remain safely at home with their loved ones throughout their terminal disease,” says Suzanne Schrag, Sr. Director, Care Services at the Rocky Mountain ALS Chapter.
The Chapter began working with the Home Builders Foundation (HBF), a nonprofit organization that completes free home modifications to help elevate the lives of individuals with disabilities, nearly 15 years ago. In just the last three years, HBF has completed modifications for 12 individuals across the Denver metro area who are living with ALS.These modifications are necessary for the patients to remain in their own homes as ALS patients gradually lose muscle control and the ability to speak, swallow, control their bladder and bowels, and breathe.
Christine H., a former nurse who lives in Denver and has ALS is very thankful for the bathroom renovation that HBF completed in her home at the end of 2020. Agrant from the Division of Disability at the City & County of Denver allowed HBF to accelerate work on several projects that had been delayed due to COVID-19 – including Christine’s bathroom modification. Eric Semingsen, owner of Aloha Builders, served as the project captain and oversaw the project which included widening the doorframe and installing a roll-in shower, grab bars, and an accessible wall-mounted sink. These modifications were essential in order for Christine, who now uses a wheelchair, to remain in her home.
Christine explained the importance of the work completed by HBF in a thank you note stating, “Having this project done is going to maintain and hopefully promote my independence within my home. The roll-in shower will also increase my safety and keep me from falling when bathing. Thank you, HBF!”