Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, which are responsible for voluntary muscle movement. As the cells deteriorate, the person loses their ability to walk, talk, eat, and eventually breathe.
Approximately 5,000 people in the U.S. are diagnosed with ALS each year with almost 90% of cases among people 60 years or older. If you are providing home health care for an elderly relative who has been diagnosed with ALS, this article can offer some helpful guidance and information on how to manage.
Life Expectancy
While some ALS patients live for three to five years after their diagnosis, it is not uncommon for others to live for another 10 to 15 years. One famous example is the physicist, Stephen Hawking. Hawking died at the age of 76 after being diagnosed as a student in college. That is almost 50 years after being diagnosed. Although the disease is fatal, the life expectancy of your loved one is unknown.
Access
As the disease progresses, it will become increasingly difficult for the person to get in and out of the house. Eventually, as their muscles begin to atrophy, a wheelchair will become necessary. Installing a ramp with railings on either side will help your loved one to gain access to the house. If this is not suitable for your home, then consider alternative options such as installing a wheelchair lift.
Accessing the toilet and shower will also require certain modifications as movement becomes challenging. For example, grab bars near the shower, bathtub, and toilet for stability, a raised toilet seat, and a roll-in shower chair.
Episodes of Laughter or Crying
A phenomenon known as pseudobulbar affect (PBA) is a condition that affects people with ALS. It is characterized by sudden bouts of uncontrollable laughter or crying which is unrelated to mood. PBA typically affects people with neurological conditions or brain injuries and can be treated with medication.
Seek Support
As the disease progresses, your loved one will require specialist help in various areas. In addition to their doctor or neurologist other healthcare professionals can support your relative in leading as fulfilling a life as possible.
This can include a physical therapist to help them adjust to their disabilities and strengthen their muscles, and a speech therapist who can help them regulate their speech and articulation, as well as teach them ways to speak while conserving energy.
Stretch and Massage
Massage and stretching can help people with ALS as their muscles can become tight and inflexible. Incorporating some gentle massage and light stretching into your daily routine can help your relative with their range of motion and flexibility.
As the disease progresses you may find home care becomes too challenging for you. Especially if you are the sole caregiver. It is reassuring to know that care homes can be a great option for your loved one especially as there are care homes facilities that specialize in offering ALS staffing help.
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