Sunday, July 25, 2010

ALS/Lou Gehrigs

Rest in Peace Jerry Chatlos.

ALS has many different names. ALS is commonly referred to as Lou Gehrig’s disease and stands for Amyotrophic Lateral Sclerosis. ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Symptoms of ALS usually don’t develop until after age 50. Loss of muscle strength and coordination gets eventually worse, making the person unable to do routine tasks such as going up and down stairs, getting out of chairs, or swallowing. Often breathing and swallowing muscles are the first muscles affected.
Symptoms of ALS include difficulty breathing, difficulty swallowing, choking, head drop, muscle cramps, muscle weakness, paralysis, speech problems, drooling, muscle spasms, and weight loss. There is no cure for ALS, however the symptoms can sometimes be treated using medicines. The drugs are used to prolong life, but do not reverse or even stop the disease from progressing. Medical interventions are also used to improve the quality of life. Because choking is common, patients may have a tube placed in their stomach for feeding. Breathing assisting devices are used as well towards the end of life.

Personal Connection:
When I was 15, I had my first job working as a summer camp counselor at an art camp. One day, a man walked in to come and pick up his two children from camp. Nadia and Sandro were 8 years old and beautiful, well-behaved children. When their father walked in, I immediately knew there was something wrong with Jerry. He walked with a slight limp and slurred his speech. Not knowing what was wrong with him made me slightly uncomfortable, but we ended up having a very nice conversation. I learned that him and his wife just moved into town from Atlanta in order to be closer to family, as he was just diagnosed with Lou Gehrig’s disease. Believe it or not, their family had actually just bought the house 3 doors down from me. Because Jerry’s condition was worsening, I offered to help out by picking the kids up for camp in the morning and taking them home in the afternoon. I ended up babysitting these children and spending time with this family for years to come. As Jerry’s conditioned worsened, him and his wife would have date nights at home while I babysat the children. Often times I was babysitting the children and Jerry as well. I took him to the grocery store and drove him to the bank. I helped him help his son to build a car for the local soapbox derby, and I watched with tears in my eyes as he got fitted for a special wheelchair. I helped him on and off of the toilet and spoon fed him blended food. I felt a mix of emotions when Jerry passed away in May of 2010. He was a great man and a wonderful father, but knowing that he wasn’t suffering anymore was somewhat of a relief. I watched Jerry go from an accomplished opera singer and very vocal and active father, to a small man who lost his ability to speak and eat. By the end of Jerry’s life, he had recorded messages that he would play, but was no longer able to speak. And he had a feeding tube inserted because he could no longer swallow. Although Jerry’s muscle tone and independence deteriorated, his strength and courage never wavered. I am happy to have known Jerry and feel like I learned so much from his incredible life.

Common Myths:
-It is often believed that people with ALS are mentally challenged or retarded. However, the brain function of someone with ALS is not altered at all. Mentally, they are fully functional and capable individuals.
-ALS is NOT contagious. It is a genetic defect that cannot be spread by contact.

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