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The rollercoaster began in 2003. It was in the summer of that year when my dad first exhibited symptoms that were later diagnosed as manifestations of amyotrophic lateral sclerosis, or ALS. What is commonly known as Lou Gehrig’s disease, named after the legendary ballplayer, ALS is a terminal illness that kills motor nerves controlling voluntary muscle movement.

The irony in my personal story is that my father, Dr. Richard K. Olney, is a neurologist who founded the ALS Treatment and Research Center at the University of California, San Francisco (UCSF), in 1993. When he was diagnosed with ALS in June 2004, he was forced to transition from running the center to becoming a patient. ALS is not contagious; this was a purely random development. Because of his specialized knowledge, my father knew exactly what to expect. Yet that insight hardly eased the harrowing diagnosis and its effect on my family.

There is currently no cure for ALS, and the typical lifespan lasts two to five years after diagnosis. ALS usually does not impact a person’s cognition, so they are cognitively present throughout the progression of the disease. ALS is unique in that the first sign of weakness can present in speech or swallowing or in the arms or legs, and it can progress at various speeds and to body parts in different orders. For example, in my experience attending ALS fundraisers and observing the attendants there, I notice that some people are in power wheelchairs with little, if any, movement capability; others are walking and talking with no functional use of their arms; and some have slurred speech and can no longer swallow safely but can move their body easily. With the large variety of physical presentations, I still find myself surprised that all of the people I encounter are affected by the same disease.

The emotional, physical and financial ways that ALS can impact a person and a family are overwhelming. For this reason, ALS is often treated through a multidisciplinary health care team at an ALS center. At the UCSF ALS Treatment and Research Center, for example, the team consists of the following health care members: a neurologist, nurse, respiratory therapist, occupational therapist, speech therapist, physical therapist, social worker, assistive technology specialist, dietitian, certified rehabilitation technology specialist, clinical coordinator, research coordinator, and representative from the ALS association. The team provides medical treatment, determines the person’s needs and concerns, answers the patient’s questions, offers psychosocial support, and collaborates to create the best treatment plan. They are, in other words, all-inclusive centers of care provision, and at least one study, published in the Journal of Neurology in 2003, has documented that ALS patients who receive care at a multidisciplinary clinic have a better prognosis than patients attending a general neurology clinic.

It Takes a Village

My family is medically savvy. Aside from my father being a neurologist, my mother is a nurse and my brother is a medical student. Myself, I am an occupational therapist. Ultimately, my father’s knowledge served as a huge advantage. We remodeled the house and his bathroom to make it wheelchair accessible in anticipation of his physical decline. My brother and I were able to move home to assist with caregiving. Today, my father requires 24-hour direct and total care provided by two caregivers and our family. To describe this experience, I like to adapt the old African proverb: If it takes a village to raise a child, it likewise takes a village to take care of a person with ALS.

When I reflect upon my family’s experience with ALS I feel fortunate but at the same time flabbergasted that we have the “best case” scenario for someone with ALS. I imagine how challenging the course must be for other people. What if you do not have a family? Or if you do not have access to health care? Or no financial means for equipment or caregivers? What if you have young children to take care of as well as a loved one with ALS? My heart aches just imagining all of these difficult situations, and I admire the strength of the people who are impacted by this disease.

While observing my dad’s physical decline and struggle to maintain independence, I decided to combine my personal experience and professional resources to create a manual titled Daily Activities Made Easier for People with ALS, which can be found on the ALS Association’s website (www.alsa.org). An occupational therapist’s job is to help people achieve independence, meaning and satisfaction in all aspects of their lives. For people with ALS, an occupational therapist can teach compensatory strategies with equipment or positioning to maximize a person’s engagement and independence with everyday activities.

The goal of the manual is to provide people with ALS and their caregivers practical tips that may make their everyday activities easier so they can spend more of their energy simply living. ALS progresses uniquely in each person, and the sections of this manual can be used at each stage of the disease as they pertain to each person. However, people with ALS using this manual are strongly encouraged to seek evaluation from a knowledgeable occupational therapist, who, among other things, can make equipment suggestions based on an individual’s abilities.

Occupational, speech and physical therapy can assist in making recommendations to maintain the quality of life of a person with ALS. Speech therapists can work on alternate ways to communicate if a person with ALS can no longer speak or implement ways to modify swallowing techniques or food textures to be able to swallow safely. Occupational and physical therapists can establish stretching and positioning programs for people with ALS to maintain flexibility and decrease swelling, pain and discomfort in the arms and legs. These therapists work with equipment specialists to solve ways for people with ALS to continue to get around their homes, get in and out of bed and the bathroom, and also maintain access to the community. The therapy team will also consider the cost/benefit analysis with each piece of equipment as they must anticipate the physical progression of the disease. For example, a team typically would recommend a power wheelchair with back support and armrests instead of a scooter, as most people with ALS will eventually lose control of their core muscles and will need more support than a scooter can provide. The therapy team creates a unique treatment plan and equipment recommendations based on each individual’s goals, physical needs and financial situation.

From another point of view, it is important to respect if a person with ALS does not want therapy or equipment. The therapy team is responsible for educating a patient and family on what services they can provide and how it may help the person’s quality of life or functional outcomes. Once the education piece is complete, the ball is in the patient and family’s court, so to speak. Each person and family copes differently with ALS, or any other terminal disease. Therapy and equipment are only helpful when the person recognizes and accepts the need for the services. At the time of diagnosis, it is common for the patient and family members to be overwhelmed by the idea of needing equipment.

I have observed that most people are more open-minded or ready to learn about equipment when they have had some time to grieve or mentally adjust to the idea of ALS. For this reason, the timing of the referral to therapy services is something to consider. An ALS center with a multidisciplinary team is a great resource, as the therapy team is available when the person is ready.

For my family, we continue on our rollercoaster of highs and lows as ALS progresses through my father’s body. We take things a day at a time and appreciate each day that we have together. My dad is an amazing role model in how he faces his own challenges with ALS and the everyday obstacles the disease presents. My hope is that my family’s experience continues to raise awareness of this vexing illness.