Stephen Hawking, a physicist with ALS, Photo Source
by Evelyn
Imagine if you had an itch…but you couldn’t scratch it. Or if your best friend was hurting… but you couldn’t hug them. Are you paralyzed? No, but very close. Most likely you have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease. ALS is a rapid and fatal neurological disease that attacks your neurons responsible for voluntary control. It is like paralysis, except you can feel pain or pressure on your body. It is categorized as a motor neuron disease because it causes both your upper motor neurons (in the brain) and lower motor neurons (in the spinal cord) to degenerate and die. Patients diagnosed eventually cannot breathe without ventilatory support, and most die within 3-5 years. Only 10 percent even live past 10 years. The worst part of this disease is people don’t lose the ability to think or feel. Their intelligence is normal; they just can’t express it by talking. Source
It is very hard to diagnose or notice it coming on because initial symptoms are so subtle. They may include twitching, cramping, or stiffness of muscles, muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. Problems with walking straight, stumbling, speech, or doing simple hand tasks may also occur. Limbs begin to thin and weight is lost when the muscle atrophies, or withers away and dies. You can only be diagnosed if you have signs of both upper and lower neuron failure that cannot be attributed to another cause. There is no true cure to halt ALS. Source
A good friend of our family is diagnosed with ALS. His name is David Jayne, and by the grace of God he has been living with it for 20 years, an EXTREMELY RARE phenomenon. My mom can remember when he could walk and talk with her, and even coax her to ride roller coasters with him. Those days are long over, and they will never come back. David Jayne now must eat either through a feeding tube or a syringe in his stomach. He uses a communication device that is controlled by his eyes (by electrodes implanted in his brain), one of the few parts that still work. It takes a while to type a simple sentence like “Hello, how are you?” But he hasn’t let this disease stop him from staying in his children’s lives and having one of his own. He still keeps in touch with us and other friends by e-mail, and even though it takes over an hour to get out of bed and dressed, he still pushes on every day. Right now he is in the midst of writing a book about his experiences with ALS and the NUMEROUS trials he has had to face.
Check out this article about him!!
Don’t take life as you know it for granted!! Live it now, because you never know when a big hunk of it will just be taken away…just like that.
How do you think it would feel to have no control over any part of your physical body and have to depend on someone else to take care of every basic need?
What do you think it would be like for your mind to be working perfectly but you couldn’t express your thoughts by talking or hand gestures?
What would you do if you had to depend on machines to keep you alive?