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A Patient and Physician Share What It’s Like to be Diagnosed with ALS

Many people may be familiar with the incurable, neurodegenerative disease ALS – due in large part to the famous baseball player Lou Gehrig and the social media sensation of the Ice Bucket Challenge. What’s less known is how the illness progresses, affects the brain and spinal cord’s nerve cells, how this diagnosis impacts the person and their family, and how patients, caregivers and loved ones cope.

 

ALS Facts:

An estimated 5,000-6,000 Americans are diagnosed each year with ALS.[1],[2]

Initial symptoms like muscle weakness, loss of balance and slurred speech can be subtle at first, and it can take up to 12 to 14 months to be accurately diagnosed with ALS.[3],[4]

As ALS progresses, patients may lose their ability to walk, dress, write, speak, swallow, eat and breathe.4 The majority of people with ALS die within two to five years of receiving a diagnosis, but progression of the disease can vary significantly.2

 

To learn more, I spoke with Tomas H. Holmlund, M.D. – Attending Neurologist and Medical Director of the Neuromuscular Center/MDA Clinic at DENT Neurologic Institute and John Hamilton, a carpenter for more than 30 years who was diagnosed with ALS in 2016.

 

Dr. Holmlund shared facts about the disease and its progression, along with his perspective on having a new treatment option, demonstrated in clinical trials to slow the decline in loss of physical function by 33 percent.* John Hamilton shared his story and his health experience with ALS.

 

 

[1]     ALS Association. Quick Facts about ALS. http://www.alsa.org/news/media/quick-facts.html. Accessed January 17, 2018.

[2]   Marin B, Boumediene F, Logroscino G, et al. (2016). Variation in worldwide incidence of amyotrophic lateral sclerosis: a meta-analysis. Int J Epidemiol, 00:1-18.

[3]   ALS Therapy Development Institute. What is ALS. http://www.als.net/what-is-als/. Accessed January 17, 2018.

[4]   Brooks BR. (2000). Risk factors in the early diagnosis of ALS: North American epidemiological studies. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 1:sup1, S19-S26.

 

 

Makeba Giles is a Digital Content Producer and Founder of Faith Health and Home, a digital space with information and resources for physical, emotional, and spiritual well-being to help families live an inspired lifestyle.

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