Weve heard a lot about ALS lately, but do you really know what it is? The following is directly from one of our ALS family members- We have heard a lot about the bucket challenges and donating to the foundation but do we actually know about the disease itself and the devastation that comes with it? It really bothers me that a person of notariety has to be diagnosed with the disease for it to bring about national attention. This illness is all around us but rarely do you find a person who knows anything about it until a family member or friend is diagnosed with it. The Batesville area where we live has had more than a few people diagnosed with ALS in the past 7 years including a friend of ours. This disease remains on the rare disease list but once my husband was diagnosed June 2010, it was no longer rare to us. We met the ugly monster face to face. It was always someone elses disease and we werent going to have to worry about it. So we thought ,and i am sure you are thinking the same ,it is someone elses disease. No one is exempt from this horrible deadly disease. Once this disease takes hold it wont let go. Some have slower progression than others but the outcome is always the same. The first symptoms are usually very subtle which may include muscle weakness, slow progressive weight loss , dropping things, tripping and falling , inability to button clothes, small muscle spasms called facsiculations all over your body. Some deal with uncontrollable bouts of crying or laughter and a small percentage may have frontal lobe dementia. My husbands started with hoarseness then difficulty swallowing after he had bypass surgery in 2007. By the time most people are diagnosed they are well into the disease. There is nothing pretty about this disease, it robs you of every muscle movement in your body with the acception of your eye movement and internal organs, especially the heart. Then there is all the secondary complications that come with it. The diaphragm is frequently affected early into the illness causing breathing difficulties, which will eventually lead to life support /ventilator. The pneumonias, urinary tract infections, kidney failure, blood pressure extremes, anemias with unexplainable blood loss only to find out your blood vessels are also affected. My husband spent the last 2/12 years of his life in bed recieving total care. You cant breath on your own, you cant swallow, cant wipe your own tears or your nose or control other normal body functions. You food is supplied through a gastic tube, most all cant talk. The easiest way to de scribe what a person goes through who decides to fight until the end is laying in your own casket. My husband was tough and a fighter. He had. A beautiful smile and could talk with his eyes. He lived 7 years after symptoms began and fought until the bitter sweet end. July 10th the demon monster ALS had to let go of his frail body when Jesus called him home. This is part of our story.
Posted on: Thu, 21 Aug 2014 01:51:45 +0000
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