An ice-cold bucket of water on a 50-degree day back in 2014. That’s what comes to mind for most of us when we hear the term ALS, which is also referred to as Lou Gehrig’s disease. But the Ice Bucket Challenge did more than just encourage people to fill up a bucket with ice water and go viral on social media, it enabled the ALS Association to increase its funding for research by 187%. 

This increase in awareness and funding for research is vital since there is no known cure for Amyotrophic Lateral Sclerosis (ALS) or Huntington’s Disease (HD), two different diseases that are often paired together due to certain commonalities they share. In fact, May is both ALS Awareness and HD Awareness Month, shining a light on two different but devastating diseases. 

Let’s take a closer look at ALS and HD, how they affect those living with the disease, and the importance of specialized care when dealing with ALS and HD.

What is Huntington’s Disease?

Huntington’s Disease is a progressive neurodegenerative disease that affects an individual’s cognitive, physical, and behavioral functions. HD symptoms vary and can include:

• Chorea — a movement disorder that causes sudden, involuntary movements of the arms, legs, and even facial muscles.

• Impulsivity — can be exhibited by excessive anger, laughing, or crying without the corresponding trigger.

• Weight loss and health issues — individuals with HD can have problems eating or swallowing, can choke more easily, and can be prone to chest infections.

In the late stages of HD, individuals might be unable to swallow or even speak, and the physical and cognitive symptoms can worsen to the point where it becomes harder to perform basic daily tasks, including appropriate decision making and basic hygiene. 

HD is a genetic disorder — if one parent has it, his or her child has a 50% chance of inheriting the disease. Symptoms for HD typically begin to appear between ages 30 to 40, but can be present even younger. Once symptoms appear, the average life span is 10 to 15 years from diagnosis.

What is ALS?

ALS, also known more commonly as Lou Gehrig’s disease, is like HD. It is a progressive neurodegenerative disease that affects the brain cells and spinal cord. Unlike HD, a person who has ALS typically retains all cognitive functions, but the disease is more aggressive in terms of the progression of symptoms, such as losing the ability to control muscle movement, and inability to eat, speak, and even breathe. An individual diagnosed with ALS is only expected to live 3 to 5 years post-diagnosis. 

The Importance of Specialized Care for Those Living With Huntington's Disease and ALS 

Because these progressive neurodegenerative diseases affect motor skills as well as brain function, adaptive equipment is crucial to help individuals maintain independence while living with HD or ALS.

Sitrin uses a Dynavox communication system, similar to the device made famous by Stephen Hawking, where the individual with ALS can use their eyes to create sentences on a screen that are then translated into spoken words. This is possible for individuals with ALS because they maintain their cognitive function as the disease progresses. Other adaptive equipment includes:

• Motorized wheelchairs to help with mobility.

• A pneumatic system is utilized so that individuals who have lost motor skills can breathe into a tube, which then activates a call light, summoning a nurse. This is the equivalent of pressing a call button at a hospital.

• At Sitrin, dining room chairs are modified so they are weighted down, which helps individuals stay seated in their chairs — something that can be a challenge due to involuntary movements. 

• Other adaptations Sitrin uses for dining include divided deep dish plates and weighted silverware to assist with eating.

Providing adaptive equipment for individuals living with ALS or HD helps them maintain as much independence in their lives as they possibly can, which can help support their mental health as they adapt to living with ALS or HD.

Unlike Huntington’s Disease, ALS is 90 to 95% sporadic, meaning there is no known cause. Like Huntington’s Disease, there is no known cure.

Sitrin NeuroCare for Individuals With Huntington’s Disease and ALS

As one of only three centers in New York offering long-term care for individuals with HD and ALS, Sitrin accepts residents when the progression of their disease warrants long-term care support. It’s often a struggle to live at home, especially with HD due to cognitive issues that can make living independently a challenge.

Unlike any other nursing home unit, we perform a home visit first to determine the abilities and needs of the individual to ensure we can appropriately care for them. At Sitrin, we also have a higher staff-to-patient ratio due to the increased needs of the individuals living with these diseases, and our nurses receive specialized training in order to work in our NeuroCare unit.

The Need for Support

Because there is no known cure for these terminal diseases, Sitrin offers support groups for residents, families, and staff members to help cope with the effects these diseases have on everyone involved. We also offer fun activities like happy hour mocktails on Fridays, movie club, coffee club, and other events and programming throughout the year.

In addition to the support our residents receive on a daily basis, our support groups are run by a licensed clinical social worker and are offered monthly for families and quarterly for our staff. Living with or caring for someone with ALS or HD can be especially difficult; support groups offer families the opportunity to connect with others who are living through the same experience. For staff, it’s important they have a space where they can express their emotions — our staff becomes like an extension of the family as they work closely with residents, and often struggle when they lose a resident to the disease. 

While there are some distinct differences between ALS and HD, the sudden onset of the disease, combined with the life expectancy post-diagnosis make both diagnoses extremely difficult to receive. The NeuroCare Center at Sitrin offers comprehensive patient-centered residential care that improves their quality of life from onset throughout the progression of each disease. It’s never too early to reach out to Sitrin to learn more about our long-term care residences or support groups. We can be a support system for you and your loved ones even before admission. 

Dealing with a terminal diagnosis can be debilitating for everyone. We understand our residents, their families, and their caregivers all need a helping hand as they live with these terminal diseases.

And that is also why, during ALS and HD Awareness Month this May, we remember the infamous Ice Bucket Challenge and continue to bring awareness to these diseases and raise funds for researchers to continue to try to find a cause and hopefully one day, a cure.