rama
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Post by rama on May 30, 2011 22:44:25 GMT -5
Your friend will definitely be in my thoughts. As I mentioned in the news thread, my uncle died of ALS many years ago. I spent my summers in high school and college with this family. It was so sad to watch him gradually become less and less mobile through the years. Then 16 years ago my father-in-law was diagnosed with the same dreadful disease. Because his disease started in his trunk rather than his limbs, it went much quicker. he died within two years of the diagnoses where my uncle suffered for many years. My heart is with this whole family because all loved ones are affected by this awful disease.
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FanOfTheMan
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Post by FanOfTheMan on May 30, 2011 22:50:27 GMT -5
kapsiz-
Thanks for sharing.
When a good friend was diagnosed with ALS, the Dr told the family that her lifespan would probably be three more years, and sure enough, in year three, she died.
After seeing a friend go through this, I personally feel that it would be a mercy in the case of ALS if the mind went so that one wouldn't be so acutely aware of what was happening to them.
It is a cruel disease.
I believe that Steven Hawking must have some other form of ALS or a related disease. As was mentioned upthread, his breathing ability and his long lifespan are not the norm for ALS patients.
This is a very sad thing.
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kapsiz
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that which we call a rose, by any other name would smell as sweet...
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Post by kapsiz on May 30, 2011 23:33:35 GMT -5
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Post by seoulmate on May 31, 2011 0:46:52 GMT -5
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kapsiz
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that which we call a rose, by any other name would smell as sweet...
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Post by kapsiz on May 31, 2011 1:15:54 GMT -5
My Fierce Youngest Nephew Brandon! ~ Waiting to receive his "Student Citizen of the Year" Award! ~  With his 5th grade Teacher & Principal ~  With his big "sis" Brooke (the dancer)  Just had to include these too! My little guy being adorable in NYC!   At Half Moon Bay CA - (pic by Grandpa) learning to take pics with Grandpa! <3  And him showing his fierceness just after learning to wakeboard!   |
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Post by seoulmate on May 31, 2011 2:27:19 GMT -5
kapsiz, Brandon is such a friggin' CUTIE PIE!!!!
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kapsiz
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that which we call a rose, by any other name would smell as sweet...
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Post by kapsiz on May 31, 2011 2:45:14 GMT -5
kapsiz, Brandon is such a friggin' CUTIE PIE!!!! Thanks seoulmate!  |
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PostFestumPF
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Post by PostFestumPF on May 31, 2011 3:58:47 GMT -5
Kapsiz, WOW, the pictures are wonderful, Brandon is such a charmer and Booke is gorgeous! My heart goes out for you, Darren & his family. ALS is a cruel companion. I lost my cousin this spring after years of fighting... her disease started when she was 32, after her 3rd pregnancy. First 3 years she deteriorated and was expected to die soon. Miraculously, ALS went into remission for 5 years. Althouh she was in 24-h care with respiratory aids etc. but was able to communicate via computer. Then ALS kicked in again and during the last two years she finally lost the battle. My parent's friend was diagnosed with ALS last fall. Due to his age (80), he's likely to leave us shortly... I love how you all focus on the positive; that's all what we can do. Enjoy the good things and keep the spirits us. I hope the clinical trials will at the end of the day bring relief for all who a battling with this disease. Hugs, Kapsiz!  |
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ljsmack
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Post by ljsmack on May 31, 2011 5:48:58 GMT -5
Kapsiz, thanks for sharing. My dad.succumbed to ALS after beating chronic leukemia. His was a later onset. He had been exposed to heavy metals and chemicals at work. I adored him and I had him until 72 which was a miracle.
Your grandson is adorable and you must be so proud-- good to see a boy win a citizenship award.
Happy birthday to Darren. Each one is a blessing. You are a thoughtful friend to appreciate what he can do, not focusing on his limitations.
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Post by gelly14 on May 31, 2011 7:13:25 GMT -5
I had an amazing day today , a Birthday celebration, for a person I've known since his birth! Darren is 46 now and has been living with ALS for 4 years! He is the father of 4 great kids! My parents are his parents best friends! His entire family, as well as, my entire family were there + many, many other dear friends. Darren is now on a respirator and feeding tube. But, he still communicates, as he has a computer like Stephen Hawking - we sometimes have to back-up our conversation, as he catches up and comments! That's not a problem, though. So happy he has a way to communicate! He has an amazingly positive attitude - despite his circumstances! Here's a link from a clinical trial at Stanford that his Mom got him into (she's a retired UCSF nurse) - stanmed.stanford.edu/2008summer/breath_of_hope.html . And here's a link from my Dad's SmugMug site - there are photos of him throwing out the first pitch at the A's first "Lou Gehrig Day" - jvp.smugmug.com/Darren-Dent . ALS is a cruel, cruel disease - you are slowly entombed in your own body - yet none of your brain is affected! If you are so inclined to, please donate to The ALS Association www.alsa.org/ , for yourself, for Darren or in Adam's name! I'm very happy that Darren's birthday was a great day!! Although it is a very tough situation it's wonderful that he has people around him like you , to help him uplift his spirit!! And your nephew is simply adorable!!! I love how proud you are every time you talk about someone from your family! |
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