can anyone share any ALS stories? - Amyotrophic Lateral Sclerosis (ALS) Message Board

Butterfly819 · 02-17-2003, 09:56 PM

i know it's a very hard thing to talk about, but would anyone be willing to share any ALS stories? by the way... does anyone watch the Jerry Lewis Telethon every Labor Day?

slaughter17 · 02-28-2003, 11:16 PM

This topic is very sensitve for a lot of people. But, with me it has not yet reached that point. I mean, it still is very hard to talk about, but I feel the more I talk about it the more I feel beter. Like I have written before, My father has ALS. Diagnosed August 3rd, of 2001. He is still walking, which the doctors are amazed at. They thought he would be in a wheelcahir by now. In my opinion he should use it more. He is very depressed, but he is still going. His symptoms are coming on slowly. There was a time when things happend fast. Now the have slowed. Next to my mother, I am the primary care taker. I am so damn proud that I have this job. I have gotten to know him in ways I would have never thought possible. I have my dad back. But, only for a short time. I cherish every moment I have. My daughter who is almost 2, doesn't know of the things to come. She has been my father's angel. If it wasn't for her, I think my dad would have taken his own life by now. I have no story to tell as of yet to inspire you. I just know that this is destiny for my family, and for my little girl. I have the oppurtunity to spend the time with him. And to get close to my brothers and sisters. ALS has been and will be a wake up call. Thank you for listening to me. I know I will write as time goes on. Wheather anyone is listeing or not. I keep my sanity by knowing that others have gone through this. I thank you all in advance. I wish more people would talk about what has happened or what is happening. It really does help others. One more thing to say....with this war "soon" to be happening, God Bless Us All... I pray that things will happen the way they are supposed to.

veggiegirl75 · 03-10-2003, 01:21 PM

Hi, my grandfather had ALS. Hew was diagnosed in 1995 after surgery to correct what they thought was a pinched nerve because of cramps and the inability to lift his big toe. We live in a small town so it took some searching to come up with a diagnosis. He had less than a year with us before he dieed form the time of diagnosis. This was not due totally to the ALS , although it did progress rather quickly. He went from just the toe issue to a cane to a wheelchair. It really hit home when we had to strap him up into the wheelchair because he could not hold his upper body. Then he started to loos his speech and became very difficult to understand, choking on food, breathing problems etc. On Mother's Day they rushed him to the hospital because he could not breath. They ended up inserting a feeding tube, which caused a blot clot that stopped his heart. Although it was hard to take at the time, it was a blessing that he did not have to suffer anymore. He was 67 years old. Looking back we believe he had probably had it for at least 3 years or so, because of other signs we can see in retrospect. This is an awful disease and one I hope they find a cure for soon.

kim simone · 04-30-2003, 08:49 AM

My Grandmother had ALS. She was 72 when she passed away. Prior to her diagnosis, she was the most vibrant, funny and lovely person you could ever meet. She was on a bowling league, and was extremely stong and active. She was the life of the party, and everyone loved her. She is sorely missed.

She was diagnosed 3 years before her passing. Her Doctors first thought she was having a series of mini strokes because she was tired, and weak, and losing strength on one side. Her speech began to slurr, and she was having trouble walking. Finally after a few months the real culpret was discovered. Her body stayed relatively strong for quite a while. But her speech and ability to swallow deteriorated quickly. It was very hard for her because she was always so social, and now that was taken from her. But in spite of it all, she kept her sense of humor, and never let us feel sorry for her. Her positive attitude played a huge role in dealing with this awful disease. I always think of her when I hear this quote " We can't choose how we will die, but we can choose how we live!" She lived life to the fullest, she loved us with all her heart, (and we loved her with all of ours) she touched our lives in so many ways. She will never be forgotten!

God Bless all of you! You are in my prayers!

Kim

NBC · 06-18-2003, 09:36 PM

I'm 21. My dad died of ALS on March 1999. The symptoms started a year before, but he didn't get diagnosed until 4 months before he passed. He was misdiagnosed. The doctors at one hospital said it was a stroke. It wasn't untill we took him to another one, a better one, that he was diagnosed. It started with his right arm. He started loosing strenght untill he couldn't move it at all. Then it was his left one. It went down hill from there. The doctors said that it started in his lungs and that's why he didn't last long. He couldn't sleep lying down. My mom took care of him night and day. My sister, brother and I did the best we could to help. My dad was 63, but was strong and active as a 30 year old. He would hardly ask for help. We were the ones always asking him for help. He was like superman. He always helped everyone around him. It was hard seeing little and little of him go. It's been 4 years and I still get angry and cry. But that's how life is.