Laura’s ALS Journey

When describing her life, Laura Urbiha of Farmington Hills, is grateful for many things. The 62-year-old mother of three sons and grandmother of two was married to the love of her life for 26 years before his passing. She also takes pride in the profession she chose helping others as a radiologic technologist (x-ray tech). Compassionate care was something she exercised as an employee. It would also be something she truly valued when a life-changing diagnosis meant she would rely on others for her personal and health care.

Subtle symptoms that something wasn’t right

In the fall of 2004, while at work Laura experienced some health symptoms affecting her left hand and arm that she initially thought might be part of the aging process. “I noticed that I was dropping things that I’d thought that I had a good grip on and when I was filling my cup with ice, every cube that fell from the machine into the cup made my arm jump.” After going to her primary care doctor and undergoing electromyography (EMG) testing to measure muscle response or electrical activity in response to a nerve's stimulation, results came back normal.

By the spring of 2005, the symptoms had grown to include increased weakness of her left hand/arm. “It was difficult to open water bottles. I had also had a couple of falls that seemed unusual for a 44-year-old woman.” A coworker had mentioned that she had noticed an occasional slurring of her speech. She also noticed that whenever she tried to hurry at work it felt like she was fighting with her muscles.

ALS diagnosis confirmed after several years

When her brother who was in medical school came for a visit, Laura explained her symptoms. He grew concerned that something was definitely wrong. After seeing a local neurologist who did not provide answers to what was causing her symptoms, she made an appointment with a neurologist outside of Michigan who diagnosed her with motor neuron disease.

“I was demonstrating only upper motor neuron involvement, and if it continued to remain only the upper motor neuron for 5 years then they would consider it to be PLS (primary lateral sclerosis) but if it evolved to include the lower motor neurons then it would be ALS (amyotrophic lateral sclerosis),” Urbiha explained. “The doctor advised me to “get my affairs in order and to do whatever I could for as long as I could since average life expectancy with ALS is 2-5 years.”

Tragically, Urbiha’s husband died suddenly in June 2008. A few months later another EMG demonstrated lower motor neuron involvement at every level tested. Urbiha was diagnosed with ALS, a nervous system disease that affects nerve cells in the brain and spinal cord and causes loss of muscle control. The disease gets worse over time with no cure.

Finding ALS expertise at Henry Ford

Laura's symptoms had progressed to the point where she could not work anymore and had to go on disability. Her neurologist recommended that she be seen by “the guru of motor neuron disease” Daniel Newman M.D. Dr. Newman is a neurologist at Henry Ford Health who specializes in ALS and neurodegenerative diseases. Laura has been followed by Dr. Newman and other ALS experts at the ALS Clinic at Henry Ford Health.

Despite the devastating diagnosis, Urbiha would come to truly appreciate the clinicians at Henry Ford who have been with her every step of the way in her ALS journey. Although the mean survival time with ALS is two to five years, Urbiha has defied the odds and has been living with the disease for more than 17 years.

Compassionate care at Henry Ford

Urbiha recalls a primary example of compassionate care she received at Henry Ford occurred when her husband died, and she was greeting visitors at the funeral home. “I looked up and saw Dr. Newman coming towards me. I asked him how he had heard about my husband’s death, he said that he had seen it in the newspaper and that he wanted to come and see how I was doing. This simple act of compassion touched me deeply! I knew that he cared about me, my entire person, not just how ALS affected me.”

Other clinicians include Jason Schwalb, M.D., neurosurgeon at Henry Ford West Bloomfield Hospital who implanted an intrathecal baclofen pump in 2011 which has decreased her spasticity or muscle tightness that makes movement—especially of the arms and legs—difficult or uncontrollable. “After the first pump was implanted the decrease of my spasticity felt like it had removed two years of progression, I could walk and talk better than I could for the last two years,” she says.

Laura will always hold a special place in her heart for Ximena Arcila-Londono, M.D., neurologist at Henry Ford Health who she first met when Dr. Arcila was a resident/fellow. Their paths crossed again when years later Dr. Arcila came back to Henry Ford to work in the ALS clinic. “Dr. Arcila and the entire team at the ALS clinic are all saints in my opinion,” expresses Urbiha. “At each clinic visit I bring a printed list of my current problem areas and Dr. Arcila gives me options to help such as painkillers, physical therapy, or some device or equipment that might help. She is a compassionate, non-judgmental doctor.”

Likewise, Dr. Arcila is a fan of her long-time patient. “Her demeanor and strength continued to amaze me,” says Dr. Arcila. “With her heartwarming smile as welcoming as always, it encouraged me to continue working with her and people with this disease, offering the best clinical care, and providing available research opportunities when possible.”

Laura says make no mistake, ALS is a very difficult disease to deal with. Pain is her biggest complaint. Currently her mouth and tongue are extremely weak which makes her speech unintelligible and causes difficulty swallowing. Her balance is poor, and she sleeps in a recliner LIFT chair because she can’t get herself out of bed. She also relies on loved ones and hired caregivers to drive her around. Going to the pool once a week, however, has helped her maintain her range of motion in her shoulders while doing the backstroke. “Being in the water helps me do many things that I can no longer do on dry land like stand upright, kneel to stretch my leg muscles, and actually walk! I highly recommend pool exercise for every pALS (person with ALS).”

Advice for others with ALS

As a long-term survivor of ALS, Laura urges others to “bank your voice” as soon as possible. “Not everyone loses their ability to speak, but should it happen to you, being able to speak via computer in your own voice can be extremely comforting to not only you but your family and friends as well.”

She also advises not to waste a lot of time focusing on the things missed and instead try to focus on finding alternative ways to do things and modifying them as necessary. “I’ve been able to see and experience so many blessings that I never thought possible including high school graduation of my two youngest sons, my oldest son getting married and the subsequent birth of my two granddaughters,” Urbiha says. “Thanks to my standing wheelchair I was actually able to “dance” with my son at the reception. There wasn’t a dry eye as we danced to the same song that my husband and I danced to at our wedding reception.”

For further information visit ALS clinic at Henry Ford Health.