According to a story from the USC News, a team of doctors with the University of Southern California (USC) ALS Clinic are doing their best to help Shaun Kalpakoff, a 37 year old single father, manage his amyotrophic lateral sclerosis. The diagnosis is quite unusual for someone like Shaun, who is relatively young and lived a reasonably healthy and active lifestyle.
About Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis often ranges from two to four years, but some patients can survive for substantially longer. To learn more about amyotrophic lateral sclerosis, click here.
Shaun’s Story
For Shaun, the progression of his disease has been tough to handle; it seems like every week there is another basic task that he starts to have trouble with. The story of Shaun’s diagnosis begins about two years ago, when his right heel bone broke severely while he was running. During his recovery he noticed that his left foot, which was unharmed, was not behaving normally; it felt weakened, and Shaun did not have the strength to lift it up.
The shocking diagnosis came after another frustrating eight months of tests. The clinic was appealing to Shaun because it allows him to get a more thorough check up with doctors instead of having to hop around to multiple specialists and appointments. Treatment at a multidisciplinary clinic like this can help slow progression of amyotrophic lateral sclerosis; techniques that therapies that Shaun has learned from his doctor Nora Darakjian helped him stay more mobile.
Still, the progression is inevitable, and he still has to use a wheelchair to get around. While Dr. Darakjian still keeps him exercising, Shaun knows that is time is limited. He has prioritized spending time with his 10 year old son Ashton and the other people in his life that he is close to. Making memories and leaving an impact on his loved ones are now his main goals.
