Though a number of people may be tired of hearing about the ice bucket challenge we are in the vast minority of people who have been directly affected by the devastating disease known as ALS, only 4 per 100,000 The truth is there have been very few advances in the treatment and even diagnosis of ALS. It is actually a process of elimination to a great degree to diagnose someone.
Suzette has seen a total of four neurologist and two of them are known throughout the United States for their expertise. However, both of them told us that they did not know what caused it. Last March we simply felt that she had a pinched nerve in her left hand when it became weak. After numerous nerve conduction studies, MRIs and other testing she was diagnosed with ALS. The doctor looked at us and said" if there is anything that you want to do or anywhere that you want to go I recommend that you go ahead now". Those were devastating words and yet spoken with insight concerning this disease. As motor neurons were affected and cells began to die out in her left hand it became weak and useless. Soon it was the entire left leg and then the right leg. I remember clearly even from last August when she was confined to the power wheel chair how she thanked the Lord for the use of her right hand so that she could at least drive the wheel chair or scratch her face or drink tea by herself. Soon after that the original thought of the neurologist of her having a" slow version" was lost as the disease began to move up into her upper body and becane to affect her ability to breath as well as to eat and speak. Our current challenges deal with finding any soft foods that she can still eat and enjoy the taste of as well as understanding her when she tells us of her needs. More and more we are using a clear eye chart with the alphabet on it as she looks at a letter we look from the opposite side guessing what the letter is to spell words. Also, we are now trying to learn to use a new computer with software that will speak for her which is powered by her eyes. Thank you all for lifting our hands up in this ongoing journey and especially for your prayers.
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