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  • can anyone share any ALS stories?

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    Old 02-17-2003, 08:56 PM   #1
    Butterfly819
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    Unhappy can anyone share any ALS stories?

    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?

     
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    Old 02-28-2003, 10:16 PM   #2
    slaughter17
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    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.
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    Old 03-10-2003, 12:21 PM   #3
    veggiegirl75
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    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.

     
    Old 04-30-2003, 07:49 AM   #4
    kim simone
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    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

     
    Old 06-18-2003, 08:36 PM   #5
    NBC
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    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.

     
    Old 06-19-2003, 02:54 AM   #6
    shygirl22
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    My dad's cousin was diagnosed a couple years ago, and in the whole scheme of things, he went downhill every quickly. He went from being an active tennis player to needing a motorized scooter to cope with long distances several months later. He was given 2-5 years, but after seven months, with still able to talk, walk, abelbeit with difficulty, and do several other things, he went to take a nap and he died peacefully in his sleep.

     
    Old 07-21-2003, 09:59 AM   #7
    Shane K
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    My mother had ALS. It began with acid reflux, and speech problems. She was always so cold and felt weak. She had a feeding tube put in about one year after diagnosis, and she was unable to talk and swallow. She would choke all of the time on her saliva. They tried killing her saliva glands, but it made her sick. Then she began to fall, and was unable to sleep lying down. She had panic attacks often and was unable to have much company. She was exhausted. She was able to write notes, until about two months before her death. She lost so much weight. The last month or two saw her go down hill very quickly. She had a very bad last week, and we took her to the hospital. She died that early evening.
    I miss her laugh.

    Shane K

     
    Old 07-25-2003, 12:22 PM   #8
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    My dad also could not sleep lying down. I used to go to my dad's house every day to care for him. I remeber one morning that he had fallen on the floor and couldn't get to a phone. When I got there he was on his side and his color was almost completly blue. Because he could not breathe. He died 2 days later. It is so hard....I wish I could go back to those days with him.
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    Old 07-27-2003, 06:45 PM   #9
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    My Grandfather passed away from ALS in 1986. Here is a kind of funny story about him. My mom was a nurse and she worked nights. This gave my Grandmother a chance to keep her job during the day. My Grandfather could walk until the day he passed away. He was mainly affected in his throat where he couldn't talk or eat. He had to be fed through a tube. My mom and him had this thing worked out that if he needed her for an emergency or for something urgent, he was to call our house and ring a bell into it. One day he did this to my mom. My mom was frantic and raced over to his house. When she went barreling into the house by him he had written her a note and said this "I was testing you to see how fast you could get here, oh and by the way, while your here will you play cards with me, I'm bored." He was always the mischieveous type.

    ------------------
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    Old 08-16-2005, 12:20 PM   #10
    geogood
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    Re: can anyone share any ALS stories?

    My name is George Goodwin and you will find my story and many others as well as Cargiver stories on my web site at www.alsindpendence.com. Of course I am always on the hunt for more. I would have posted my story here but it was too long for entry, I was dx in 1991 so have a lot to say

     
    Old 08-17-2005, 10:21 AM   #11
    AllysHeart
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    Re: can anyone share any ALS stories?

    Unfortunately, I can share my family's experience with ALS when my mother was afflicted. Despite the fact that my mother complained for several years of excruciating pain in her right shoulder and neck, she was not diagnosed with ALS until 3 months before she died. She was a cafeteria worker, and one day at work, her arm stopped working. It became useless, just like that. She consulted a doctor, who diagnosed her with carpal tunnel, and he did carpal tunnel surgery. My own husband had carpal tunnel, diagnosed by a neurologist and repaired by a neurosurgeon. His symptons were nothing like my mother's. Of course, the carpal tunnel surgery did nothing to help my mother's useless arm.

    My mother's left leg began dragging several years later, and she got a brace made to help the weakness in her leg. She continued walking until only about a week before she died. She would choke on food, until eventually, her food had to be cut up small and eventually blended in a blender. After she lost use of her right arm and hand and her left leg, she suffered a stroke which left her left arm useless.

    I would get mad at my father when people would ask him how my mother was doing. He would shake his head and say, "Not good." I would say, "She's doing great, getting better every day." I never saw death, rather I thought my mother was getting better.

    My father then began having to bathe, groom and dress her as well as feed her. My mother never lost control of her potty habits, so if my father had to leave the house, he would put a nightgown on her so she could hobble to the rest room by herself. He cared for her until several days before she died. It was only shortly prior to that when he rented a wheelchair for her.

    I went back to 1996, when I believed my mother's first symptoms of ALS to have appeared. She died in 2000. Her mind was clear, and she was able to make bits of words to converse up until about 3 months before her death. She liked the grilled cheese sandwiches I would prepare for her and cut them into tiny squares. Each bite I fed her, we would say, "Ummmmm!" The last time I saw her was 3 months before she died. My father told me that she had begun drooling, and he kept a bib on her. Her shirts would be stained with drool. She could not even scratch her nose if it itched. She would say to my father during the night in bed, "Cover me up."

    The last time I saw my mother was in June 2000. This was before 9-11, when family could sit at the airline gates with passengers. My mother wanted a box of Good & Plenty candies as we waited for my boarding call. I fed her the Good & Plenty, one at a time. She said, "Are these ever going to be done?" But, she ate every last one. After I boarded, and as my small commuter plane taxied down the runway to my destination to catch a large jet home, I could see the sillhouettes of my parents standing inside the terminal. I waved from the window of the plane, not realizing I would never see my mother alive again.

    My father told me of her final days in the hospital, how she suffered and how he remembers the look in her eyes. She uttered to him, "Help me." My great-aunt (her mother's sister) visited her and prayed for her. I was so grateful our aunt saw her before she died. I never could thank her enough for being at my mother's bedside, and felt it very important she was with my mother.

    My mother was very beautiful, vivacious, and fanatically neat and clean with her person and her home. She had just turned 65 when ALS claimed her life only 22 days after her 65th birthday. My father played the piano and sang to her on her birthday. He said he knew she was not doing well.

    My father cries when he speaks of my mom's affliction with ALS. He saw horror, I know. I tell him often how proud I am of him, that he honored his marriage vows, to keep her in sickness and health and to never forsake her. I told him Grandpop, mom's father, would be proud to know my father was such a loving, devoted husband to the very last. My father had promised my mother he would never place her in a nursing home. I know it was difficult beyond comprehension to take care of her, but he held true to his promise.

    Last edited by AllysHeart; 08-17-2005 at 02:04 PM. Reason: Added closing paragraph

     
    Old 08-27-2005, 11:41 AM   #12
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    Re: can anyone share any ALS stories?

    They say there really isn't a diagnosis for ALS? My mom was said to have conversion disorder which seems very similar. They now say Lou Gehrigs. Her speech is slurred and hard for her to swallow. The strenth in one hand is weakening. It sounds all familiar to the disease but she is going back for another MRI. I've heard about the book "Eric is winning" Abattle that reversed his symptoms and he lived. Has anyone read this. I cry so much. I am not as strong as my mom on the inside. I am not at all prepared to lose her. It hurts so much

     
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