What is #ALS and this #IceBucketChallenge ? Its about raising awareness and funds. We challenge ALL of our Family, Friends and Everyone to find out more about ALS by visiting alsa.org We will be donating to a GoFundMe page that is set up for an old friends Susan McNally Danieles brother Tim McNally who was diagnosed in September 2013 with this horrible disease. Below is something Sue shared on her FB page: This is a LONG one..But truly worth the time to READ..PLEASE.. I cannot tell you how awesome I believe it is that so many people around the world are doing the ALS Ice water challenge...I am enjoying friends and family posting their videos as well as some hollywood big shots...I just pray that since this is suppose to be bringing ALS awareness to all, that everyone truly is learning about the horrible disease that it is... 1. One day you awake and your body (any part) just does not work correctly, cant figure out why 2. After tests , some painful, you are diagnosed with ALS ( there are 2 forms of it..One of them Bulbar* -which affects speech/slurring/swallowing and the other which usually starts in a particular part of the body- hands/arms/legs.) 3. You realize there is NO CURE. 4. Every day becomes a challenge.. The neurons that float around the brain start to die. As they die its as if they are short circuiting as they are no longer in communication with the muscles in your body. Depending on what part of the body the neurons are connected to, that part starts to have (what we consider a charlie horse) fasciculations .These are severe muscle twitching/hundreds of them at a time in the particular muscle..So for example..If it is effecting the upper body, you will see hundreds of spasms happening throughout the persons upper chest and in their arms.. 5. ALS is painful As the person has these spasms, the muscle as it dies becomes stiff and locked in position. Disfiguring the hands/arms etc. Because of not being able to wiggle the fingers/the cramping becomes extremely painful. They no longer can tie a shoe, zipper up, button a shirt, hold a utensil. This is just a little of what a person with ALS feels in their muscles as the muscles are dying. 6. ALS effects the muscles /diaphragms that control breathing. So when the upper body is involved/as the neurons are dying off and no longer communicating with the muscles, A person w/ ALS starts to have great difficulty breathing. Walking just 20 steps starts to be hard for them to breathe properly. Now also take into consideration besides having a hard time breathing, muscles are becoming weaker in the legs and the legs become extremely tired just trying to walk. Lifting a gallon of milk takes great effort as that gallon now feels like lifting 100 lbs. As the muscles throughout the body continue to die, the person looses weight besides muscle mass. Eventually loosing complete muscle movement. 7. Muscles are in the tongue! As the muscles die off in the tongue and neck and throat, speech becomes slurred. Drinking water can cause choking. ( An ALS person with Bulbar* actually starts with these as their first symptoms) A person w/ ALS from the spinal cord usually starts with these symptoms months after being diagnosed, sometimes earlier , caused from fatigue. . 8. ALS does not effect any of the organs. And in most cases does not effect the brain. Therefore the person with the ALS is aware of everything happening to them as it happens. Their minds are still as active and still youthful in wanting to work, exercise, live normal lives. But their bodies, are deteriorating day by day, and there is NOTHING to stop it. Leading to full paralysis ! 9. Every Person with ALS is treated with a TEAM of doctors. As one doctor can not treat the variety of symptoms. There is a speech therapist to help with exercises of the mouth , there is an occupational therapist for coordination , a physical therapist for exercises of arms and legs, a neurologist who prescribes the medicines and orders the different tests, Someone from respiratory accesses his breathing/adjusts his bi-pap to help breath better. A person in charge of his/hers nutrition, a social worker and a nurse. This team only meets with an ALS patient ONCE every 3 months. With in 1-2 hours tops, every question, concern that person has is all crammed into that one lousy appointment. The Dr.s /specialists move from room to room - patient to patient ..So as their bodies are wasting away, and they are suffering in pain or discomfort they either wait the 3 months out to go to the ALS clinic that is set up close to where they live or they visit their personal medical Dr. for help. 10. ALS can affect anyone....And everyone....Although Lou Gehrigs made a speech 75 years ago. There is still not much known about the disease. Some feel that it is caused from head injuries, football being a number 1 risk. There also seems to be many that have served for our country that have ended up with it. Lou Gehrigs was a baseball player . They truly do not know. And they still dont know how to stop the neurons in our brain from dying..Its sad! Extremely sad, that just like Cancer, they cannot stop it! Thankfully for Cancer, There are treatments that have and will continue to save lives. ALS patients are given a time frame of 1 to 5 years. Although some have lived longer, but on life support and completely paralyzed , using their eye movement to communicate through a computer. I could go on forever, but I think i got my point across! I needed anyone that took the time to read this , at least have a small clue of what ALS really is. My brother Tim who is 56 was diagnosed last fall after seeing a doctor about his hands hurting and cramping up on him. A simple and more easy diagnosis of arthritis would have been a lot easier to swallow. I am amazed by him and his strength to continue to fight each day to make it through as normal as he can. Although his breathing is horrible, and he has no strength to do things, he continues to enjoy cooking as often as he can, going to the beach and swimming in the ocean, being with family and enjoying friends.. He is loving, sweet and kind. I love him to pieces and truly wish and PRAY that a CURE would be found today!.. I hope everyone understands how awesome this challenge is, and how important it is that funds find a cure...My brother needs one *** These are only some of the physical challenges an ALS patient faces. The financial burden is horrible. SSD is limited, and SSI is impossible to get, especially if your getting SSD. Those on welfare would live better than someone who is diagnosed w/ALS. Our government believes that anything over 700.00 a month is to much. Please someone tell me where in this world could you live off of 700 dollars for normal living costs..Its sickening! gofundme/cx6y74
Posted on: Thu, 21 Aug 2014 00:12:07 +0000
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