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Living with Lou Gehrig's Disease

When Leon Peek, age 55, began noticing lower back problems and experiencing trouble with his right hand, index finger and thumb, he decided to see his doctor. After a few in-office tests, Peek’s doctor referred him to a neurologist for further diagnostic tests. During the tests, however, the neurologist didn’t seem to be focusing on his lower back. A sick feeling came over Peek as he told the doctor, "You know, my father had ALS.”

Amyotrophic Lateral Sclerosis: The Signs, Symptoms & Diagnosis

After ten agonizing days — undergoing blood work, an MRI (magnetic resonance imaging), a CAT (computerized axial tomography) scan, and an EMG (electromyography) study — the neurologist came to Peek with a grim diagnosis: he had Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS). ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, and is diagnosed in more than 5,500 people in the U.S. each year, cites the ALS Association. And according to Dr. Deborah F. Gelinas, associate professor at Michigan State University and Director of the Michigan State University MDA/ALS Clinic, the disease affects men more than women (two to one) prior to the years of menopause, and thereafter almost equally.

The early signs of ALS — something as simple as tripping over a carpet edge or difficulty with speaking — are subtle and often go unnoticed. As symptoms progress, patients like Peek may experience muscle weakness, fasciculation (tremors), and cramping. “As ALS advances, muscles noticeably waste away,” explains Dr. Gelinas. “This has many effects — as the muscles continue to weaken, fatigue occurs, swallowing can become troublesome, and speech becomes slurred and impaired." Due to the continual progression of muscle weakness, paralysis eventually affects everyone with the disease.

Though all patients with ALS will ultimately experience paralysis, varied symptoms during onset can make it difficult to diagnose. Diagnostic testing may include blood and urine samples, nerve conduction tests, hormone tests and muscle biopsies. According to Dr. Gelinas, ALS is typically diagnosed by a neurological evaluation, coupled with blood tests and an EMG study. Doctors may also run other tests to rule out possible mimickers of ALS, such as cervical spine disease and rarely, thyroid disease, Lyme disease and vitamin deficiencies.

Managing ALS at Home

After the official diagnosis of ALS, many only survive two to five years. However, some patients, like Peek, find creative ways to maintain quality of life while managing the disease with a supportive in-home caregiver — and defy the odds with an elder care services plan. After the initial shock of his diagnosis, Peek and his wife decided they would create a home health plan to cope with his disease. For the first few months, life continued as it was before ALS — Peek was even able to work, and stopped only when he began to lose his ability to write. A few months after filing for disability and retiring, his mobility became impaired and a cane was necessary, as well as was additional support from his wife.

As ALS progresses, patients “ ... lose the ability to manage their own activities of daily living — to feed themselves, to dress themselves, write, walk, climb stairs, speak, swallow, get a good night’s rest,” Dr. Gelinas explained. Leon knew his wife’s care-taking would be crucial in helping him cope with the symptoms, adjusting to the challenges of daily living with ALS. Two years after the initial diagnosis, as the ALS progressed, Peek’s wife chose to retire early in order to care for him. Becoming the family care giver of her husband was a new role that she had never imagined.

As difficult as it may be for Peek to adjust to his life with ALS, he knows it has also been a challenge for his family. He resolved to maintain a positive attitude, showing his worried loved ones that life would go on, despite the challenges they all faced in the future. Peek’s humor has undoubtedly made light of a serious situation, helping his family cope. He recalls saying, “Come be a part of my ALS — feed me, laugh with me, and take care of my urinal."

Peek’s wife now cares for all of his needs. Everyday tasks, such as cooking, eating, taking care of the yard work, shopping, cleaning, and more are now solely her responsibilities. Peek knows that these challenges weigh heavy on the family care giver, and wishes he could support his wife more. Dr. Gelinas advises families living with ALS to remember, “Family members need to recognize that they’re in it for long run ... and that nobody can do everything. If you can’t take care of yourself, you can’t take care of others.”

Encouragement for Those Living With ALS

In the wake of ALS and with the help of his family, Peek is optimistic about maintaining the highest quality of life possible. He recommends, to both the person living with the disease and the family care giver(s), to take each day as it comes. Through his research, Peek discovered that a small percentage of ALS patients have lived more than 10 years after onset, which provides hope while he fights the disease — one day at a time.

Throughout Peek’s journey with ALS, he hasn’t let it take over his life — he has embraced it and adapted. Peek stresses the importance of relaxation to cope with the disease, and suggests those living with ALS find peace and inspiration through music, meditation or spirituality.

“Maintaining quality of life is all about maintaining a sense of hope,” Dr. Gelinas added. “You can’t hope for the life you had before disease (or even for a cure), but you can hope that tomorrow will be a good day. Find ways to enjoy the taste of food even though you might struggle taking the whole meal in.” Success in the wake of ALS is about winning the small battles — adjusting life to fit the current state of your disease is a triumph in and of itself. “Having a sense that your life is full of worth and value goes a long way,” shares Dr. Gelinas.

Peek offers these final words of wisdom for those living with ALS and their families: “There are ALS patients alive today that have overcome all kinds of odds; Believe in hope.”

Follow more of Peek's story on his ALS blog.

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