ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 06-17-2011, 08:17 AM #1
slaughter17 slaughter17 is offline
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slaughter17 slaughter17 is offline
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Note Caring for those you love

Hi everyone,

June 25th, 2003 my father passed away from this terrible disease. He was 57 years old. I was bearly 20 at the time, had a newborn baby and I also was a newlywed. The doctors here where we live didn't know alot at the time about ALS. I am greatful we found an ALS specialist in our area who has a clinic dedicated to only PALS. They were a great support.I cared for my dad the entire time up until his last beautiful breath. I look at his death as if he was born again somewhere else.
August 3rd, 2001 was the day he came home with the diagnosis. My older brother and I had researched his symptoms enough that we actually helped with the diagnosis. We narrowed it down to ALS, Lyme disease, or Myasthenia Gravis. I spent countlless hours going with him to doctor appointments, bringing them all my reasearch, dad's medical chart, lab work, and any diagnostics that had been done. Most just laughed at me when they saw the huge binder I had accumulated, and ignored my suggestions. But, when that dreadful day came, he asked me to care for him. I have never had such an amazing honor in my entire life. I vowed to him that I would do everything in my power to preserve his legacy.

The next several months, my dad and I packed up my baby girl and traveled the country. We visiting places of memory and stopped to see family members. He even planned his funeral. We compiled a CD with his favorite songs to hand out to his guests during the memorial. I hear from people that they still listen to it, which would make my dad smile.

He survived 22 months, and it took just as long to diagnose him. I find myself often still thinking about all the wonderful things he taught me during those 22 months. He saw my passion for the medical field and he knew I wanted to be a nurse. So, he paid for the first few classes to get me started with my C.N.A. My very first patient was my own dad. That set me on the right path for my nursing career, I treat every patient as if they were my dad. Today, I am still a caregiver not only to PALS, but many other disorders and diseases. I still have a strong passion for ALS, and still try to keep up on all the latest research. I hope and pray for a cure. I also pray everyday for those who are affected by disease, as it affects everyone.

It's been almost 8 yrs. since my dad has been gone. Alot has changed, but my heart has not. I still cry, and grieve all over again around his birth and death day. Looking back, I don't regret one second of the time I got to spend with him. Being a caregiver, especially to those I care deeply about, has given me such joy and rewards that I cannot explain into words. It's very spiritual. I just wanted to share my story from the other side of this disease. Recently I have found myself having to go through the same tests my dad had to endure. I know now that I do not have ALS, or any neuromuscular diseases, and I feel my dad here with me every step of the way holding my hand.

Please hold on tight to those you love. Make all your ammends, and live out the rest of your life doing what you love to do. Tell someone everyday how much you care about them. We all have one thing in common, we live and then we pass on. How do you choose to live, and be remembered?
Thanks for listening....

Kay Dwight Empey's Daughter
Lindy
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Old 06-17-2011, 09:08 AM #2
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What a beautiful story. Thank you for taking the time to share it with us.

I'm sure your Dad also enjoyed the time spent with you. And you're right.....we shouldn't wait for an illness to convince us that time spent with those we love is priceless.
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