ALS Ice Bucket Challenge Progress
Robin Samuel, OTR/L, MSCS is an occupational therapist affiliated with the University of Minnesota Certified Treatment Center of Excellence, an ALS multidisciplinary clinic. She specializes in working with patients impacted with neuromuscular and neurological disease and estimates that she spends a quarter of her time seeing people with ALS.
Occupational Therapy: Myths and Misperceptions
“One of the biggest misconceptions surrounding occupational therapy or OT is that it has something to do with one’s job,” said Samuel. “It’s really about helping people find practical solutions to maintaining independent function in their daily activities.”
When someone with ALS steps into Samuel’s clinic for the first time, she conducts a thorough assessment of daily living abilities that affect quality of life. Samuel is interested in understanding the challenges someone with ALS may encounter when performing their daily activities whether that may be brushing their teeth, cooking, using the computer, or being able to take a shower.
Because people with ALS may also experience some cognitive and/or behavioral changes that can manifest in the form of impaired critical thinking skills or loss of judgment, Samuel and her colleagues screen for changes that could impact safety or the person’s ability to make important decisions about their ongoing care.
Enhancing Quality of Life
“Our primary goal is to help each person we see maintain their best quality of life,” explained Samuel. “As there is no common measuring stick to base our care plan, we strive to address each person’s individual needs, values and safety concerns.”
For example, Samuel says that some people value spending time on their computer and need assistance to stay connected to the digital world due to decreased dexterity or arm weakness. Others may want to find solutions to continue participating in meaningful social activities or hobbies. Depending upon each person’s unique physical challenges and personal priorities, Samuel and her colleagues develop a plan of action. This may include recommending adaptations to the home environment, identifying mobility equipment needs and providing assistive technology education.
Getting Started
Samuel acknowledges that some people may live a great distance from an ALS Clinic with a multidisciplinary team, but emphasizes that the drive to see an occupational therapist and other team members is worth it. Even for those newly diagnosed, there are so many adaptations that can be customized to address immediate and future challenges including fatigue, limb weakness, and mobility problems that interfere with completing daily tasks that make prioritizing an appointment a vital component of an effective ALS care plan.
New and Innovative Technologies
Samuel notes that new technologies are being developed all the time. A Bestic Feeder , for example, is a robotic device that allows someone with limited hand and arm function to feed themselves with the touch of a switch. Some local chapter offices of The ALS Association may have this device or other types of adaptive devices available in their equipment loan programs.
Other exciting advances include environmental control devices such as WeMo by Belkin, which allow multiple electronic devices in the home to be controlled by a few taps on a smartphone or tablet.
Occupational Therapists like Samuel have the expertise to help people connect with technology specialists who can stretch the ability of everyday technologies to meet the needs of those with ALS. For example, a joystick-operated power wheelchair can also be programmed to control a computer mouse. An eye gaze computer system can also be set up to help a person communicate with their family and friends with just the movement of their eyes to select computer screen content.
Low Tech, High Benefits
As new technology innovations are constantly on the horizon, the possibilities for people with ALS are endless. It’s important to always ask your occupational therapist, “What’s new?” in addition to making your wants, wishes and priorities clear to ensure you’re paired with the right adaptive equipment and technologies.
That said, sometimes the most useful tools may already be at your fingertips. Samuel says, “Needle nose pliers can be useful when fine motor control begins to wane.”
Other adaptations for daily living could be as small as purchasing and using a wheeled shower commode chair that slides over a tub edge, adding a bidet to the bathroom toilet to help with hygiene or wearing a thumb brace to help improve ability to pick things up.
Samuel notes that she often learns from her patients and that working together creatively is often the best prescription. She recalls having a patient in her clinic with weakened hands that attached zip tie loops to his shoes to make getting them on easier.
Trusted Resources
It’s an important to work with an occupational therapist that has experience with ALS or at the very least is willing to learn more about the disease and its progression to help identify the best treatment options and resources. If visiting an ALS clinic is not an option, listed below are resources to help you find an occupational therapy expert in your area:
