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ALS (Lou Gehrigs Disease), Knowledge and The Anguish

ALS, more commonly known as Lou Gehrigs disease, is a progressive disease that affecs nerve cells in the brain and spinal cord. The disease is not an extremely common one and approximately 5600 people in the U.S. are diagnosed with ALS each year with an estimated 30,000 Americans having the disease at any given time. There is no known cure for ALS and the average life span of a person with it is 3 years after diagnosis. Some may live as long as 10 years however this is rare. Due to medical intervention the life span of a person diagnosed with ALS has increased.

However, the fact remains that ALS IS a disease that kills. There is no cure. Everyone who is diagnosed with ALS dies from it.

Who gets ALS? According to studies 60% are men and 93% are Caucasian. Most are between 40 and 70 years old with the average age at diagnosis of 55. It can however hit a person in their 20's, 30's or past age 70. Women can also get ALS, it's not just a male dominant disease. As age increases the incidence of ALS is more equal between men and women.

Symptoms to watch for are muscle weakness in the hands, legs, arms or slurred speech, swallowing or breathing. Twitching and cramping of muscles especially in the hands and feet. Impairment of the use of arms/legs. "Thick speech" and difficulty in projecting the voice. As the disease advances shortness of breath and difficulty in breathing and swallowing gets much worse.

The initial symptoms can be varied in different people and diagnosis is difficult. Symptoms also progress at different rates in each person after diagnosis. One person can have a remission while another person may not. Difficulty in simple day to day activities such as buttoning a shirt, lifting small items, walking or even dressing are signs to watch for.

Now, you are probably wondering, why am I writing this. Well the reason why is because one of the most important people in my life is affected by this terrible disease. This disease not only affects the person who is afflicted with it, but it also affects that person's family and loved ones on a daily basis. Imagine watching a person you love with all of your heart struggle on a daily basis to even swallow a drink of water, struggle to button their own shirt, tie their shoe, SAY HELLO TO YOU AND SAY IT SO YOU CAN UNDERSTAND IT!

That last part was said in capital letters because I really wanted to emphasis on that point. A person with ALS loses their ability to SPEAK! While they can talk, it comes out completely unintelligible. A total mumble jumble of speech that makes no sense for the most part unless you know that person and are able to read their lips. This coming from a person who has been able to talk perfectly fine all of their life. To be unable to communicate not only their basic every day needs but also make regular daily life "chats" with others as they had always been able to do is so frustrating on them and on those around them.

The person I'm talking about with this disease is my Dad. My hero. My rock in life. I watch him struggle with this and I wonder, how does he do it? If it were me I don't know if I could do what he does and maintain a mental balance and strength to get through. He does it every day. All I can do is give him the support and love to see him through until God calls him to his side. And until that day, well, I have to say this, I love you Dad. You are the strength in my life that has seen me through hard times and good times.

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Reader Comments  (8) | February 8th 2012 at 1328736455

Oh, how horrible, Tricia. It's amazing to watch his struggles and still maintain his dignity through it all. My heart goes out to you both. God bless you both.
3rd Rock Home
3rd Rock Home | February 8th 2012 at 1328741736

Thanks for sharing with us. Caring for a loved one afflicted with a debilitating illness is very difficult on everyone involved. The best you can do is to be there and offer your love & support so they know they are not alone and can feel your love.
Ayuni Gifts of the World
Ayuni Gifts of the World | February 8th 2012 at 1328743513

I know how hard that must have been for you to write and to share with us - but thank you for doing it. I can't even imagine...
BeewitchingItems | February 8th 2012 at 1328753508

I am so sorry about your Dad, try to enjoy your time with him and remember all the good times. I will be praying for him and you and your family. I am glad that you shared this with us
CLOSED... | February 8th 2012 at 1328763247

I know this was very hard to write this about your Dad especially... I know how much he has struggled from what you have told me and I do not know how he finds the strength to go on daily... He sounds like a wonderful loving Father... Thank you for sharing with us... Sending you all lots of Prayers and Hugs...

Vintage Around The Clock
Vintage Around The Clock | February 9th 2012 at 1328800690

One of the hardest things in life is to watch someone you love struggle with a debilitating disease. You feel helpless but in reality you're doing everything you can. Being there for them for love and support. You're stronger than you know.

Sending prayers your way for both of you.

Donna's Stuff & More
Donna's Stuff & More | February 9th 2012 at 1328812924

Your Dad sounds like a very special person. Treasure the small things and all your great memories!
no photo
Lynn@TMUSA | February 9th 2012 at 1328827021

Huggggzzzzz T. more hugzzzzz

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