MDA Against ALS
MDA is the world leader among voluntary agencies fighting ALS, offering the most comprehensive range of services. People with ALS receive care at 200 MDA-supported ALS clinical centers across the country. MDA also leads the search for a treatment or cure for ALS through its aggressive, worldwide research program.
MDA is the world leader among voluntary agencies fighting ALS, offering the most comprehensive range of services. People with ALS receive care at 200 MDA-supported ALS clinical centers across the country. MDA also leads the search for a treatment or cure for ALS through its aggressive, worldwide research program.
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Correspond with Nancy on   |
October 12th, 2009 at 10:15 pm
Dear Nancy,
My brother, who is only 37 years young was diagnosed with ALS a little over a year ago. Nobody in the family had heard of it before this. He will be 38 on January 20, 2010. It’s still hard to believe that this devastating disease is real. He has 3 children. One daughter and two sons. He said he won’t get to see his children get married or have children of their own. He had back surgeries performed. Then after that, we all thought that his symptoms were caused from that. It started out in his dominant arm. He lost all of his muscle mass. It was like his arms were just a skeleton. It then proceeded to his legs. He was walking some but got to where he would fall from not being able to keep his balance. Now he is in an electronic wheelchair. He has to use a removable feeding tube because he gets choked on his food. I Thank God that he hasn’t lost his voice yet. According to the Dr.’s it’s only a matter of time before he will have to be put on a ventilator because his lungs will shut down also. He said he didn’t want to have to stay on that though. He is losing the loss of his hands and fingers, now. They talked about setting up the chair so that he can use his teeth to control it. It is so heartwrenching to see my brother in this condition, at such a young age. My Mom and Dad hurts so much for him. Mom said that she wishes it was her instead of her baby. This is nearly unbearable. It’s taken so much away from him. We still have him with us but I don’t know for how long. Is there anything? I read on some website about taking stem cell research to help with a cure. Do you know anything about this? I heard your speech about this website while my husband was watching WWE. Thank you.
I’m sorry to hear about your mother. All of you are in my prayers. May God be with us all.
October 12th, 2009 at 10:10 pm
Dear Nancy,
My mother was diagnosed with ALS about 5 years ago; the disease has progressed to the point that she is now confined to a motorized wheelchair or her bed. She is able to move about and communicate, however, it is obvious that my mother is gone and that she is simply trapped in a body that does not work. To add to her suffering she has recently been diagnosed with Pick Disease which is a type of Dementia. It is very hard to see such a very active person suddenly be stopped by ALS. Thank-you for all that you are doing and you have my condolences for your loss. Our hope is that a cure for ALS is found so that no other family has to go through what we and many others have had to endure.
October 12th, 2009 at 10:06 pm
IT’S BEEN A YEAR AND 2 MONTHS SINCE MY DIED OF ALS SHE WAS THE BEST MOM ANYBODY COULD HAVE. I THOUGHT SHE WAS GOIN TO BE AMONG THE 10% THAT LIVE 10 YEARS OR LONGER. BUT WE WATCHED HER WITHER AWAY LIKE A SANDDUNE IN THE DESSERT FOR A YEAR. SURE WAS HARD FOR ME AND ESPECILLY HARD FOR MY OLDER SISTER BECAUSE SHE TOOK CARE OF HER FOR THAT YEAR. ONE THING I WILL NEVER FORGET MAMA HAD WORKED ALL NIGHT AND HAD A DOCTOR’S APPOINTMENT IN DALLAS THAT DAY AND SHE HEARD THAT MY YOUNGEST DAUGHTER HAD BEEN BORN SHE LEFT THE DOCTOR’S OFFICE IN DALLAS AND DROVE FORM DALLAS TO TYLER WHICH IS AROUND 150 MILES JUST TO SEE HER NEWEST GRANDDAUGHTER AT THE TIME SHE WASN’T ABLE TO TALK BUT SHE WAS BURNIN UP THAT SPIRAL NOTEBOOK TALKIN TO MY WIFE AND I SHE WAS SO HAPPY AND PROUD OF US SHE WANTED TO STAY ALL DAY BUT SHE HAD TO GO, SHE WAS A BIG HELP FOR US SHE HELPED US TAKE CARE OF CHLEUXY (CHLOE) AND DANIA OUR OLDEST SHE’S 7 NOW SHE WAS SO EXCITED TO BE THERE WITH US. I LOVED HER SO MUCH SHE AND I WERE SO CLOSE THERE WOULD BE DAYS THAT SHE WOULD CALL ME JUST TO TELL ME I LOVE YOU SON THAT MEANT SO MUCH TO ME AND TO THE GIRLSI’M JUST GLAD SHE WAS AROUND LONG ENOUGH TO SEE ME HAVE FAMILY FOR MYSELF. SHE’S IN A BETTER PLACE NOW WITH HER MAMA AND DADDY AND MY LITTLE BROTHER CALVIN JUST RINNIN AND LAUGHIN PLAYIN AND LIVIN THE HEAVENLY LIFE. WELL YA’LL TAKE CARE. AND BUILD A BETTER RELATIONSHIP WITH YOUR MAMA OR WHOEVER YOU LOVE THAT HAS ALS.
October 12th, 2009 at 10:03 pm
I lost my mom May 1983 to the battled of ALS for 3 years. She was 50 years old when she passed away. I was not married yet so I lived at home and cared for her. My sisters when come on their days off to give me a break and to care for. She tried so hard to fight the battle but ALS won the fight. It is a terrible disease for the patient and caregiver to have to go thru. I married 5 months after she died and it was a happy day for us and then a sad one. I know she was there for me that day because it rained just before I was to walk into the church. I told my Daddy that it was OK that was tears from Momma in heaven.I miss her very much. She was there when my husband ask me to marry him and I was able to purchase my dress early so I could model it for her. We both layed in her bed and cried together afterward but I know she was there with me. She was not able to be with me when my wonderfull husband and I built our 1st home or when I found out that I was having a baby after 8 years of trying and she was not there with me when I had my second baby after 8 years. But she was the Angel on my shoulder all the way. I get so mad at this disease for taking so many good people. I have good memory from her while caring for her. We spent alot of time in her hosiptal bed talking and crying. I wouldn’t trade that for anything I feel sad for the ones that are battling the disease as I type this. May GOD BLESS each and everyone of you that have a loved one fighting ALS and for the caregivers! Sorry for so long but this made me feel good.
October 12th, 2009 at 9:55 pm
hello!
i found this add on Monday night raw and i wanted to let you know how you feel.
i lost my best friend at the beginning of the school year at central high school in Springfield Missouri. Her name was Hailey Stevens. She was my friend since freshman year. she was a kiltie and on the central dance team. it didnt hit her hard until the end of her sophmore year. our junior year she could talk but couldn’t walk. as senior year rolled around she was hooked up to so many machines i was scared to go near her. the only way we could tell what she was thinking was a machine that was connected to her brain. three weeks into this year she passed away. there was no more the doctors could do for her. i prayed every night for god to help her. and the sad thing is evan though she is gone i know god helped her. he helped her by putting her where she would be happy.I know hailey and your mom are in heaven and are going to do everything in their power to help the victums who als have concerd. haily taught me to value life and appriciate what i do have. she changed Central high school and the lives of others. God how i miss her and i know you miss your mom, but just know that they are no longer misserable or sufforing god is takeing very good care of them. i hope to here back from you i want to help. i dont have money but i can spread the word out to help the als patients now. please write me back. it would be so great to help you. thanx for taking the time to read this…..God Bless You oh and im only 17 hailey was 18.
October 12th, 2009 at 9:53 pm
Hi Nancy
My uncle has ALS and we were surprised because he only had a year but he is going on 4 years. I’m sorry for your lost and i know i will have to go through the pain. But i don’t want others to go through the same pain us me and my family.
October 12th, 2009 at 9:53 pm
Hi Nancy,
I am amazed to read how many women this has affected.I was under the impression it affected more men than women.
My maternal great grandfather passed 20 or so years ago from this horrible disease and my maternal grandfather passed 3 years from it, he donated some of his body parts to research I pray that one day there will be a cure for this so nobody else has to watch their loved one suffer like mine did for 3 years laying in a bed and make the decision to pull the plug and end their suffering.
October 12th, 2009 at 9:52 pm
Hi nancy, I was watching wrestling when I heard you talking about ALS. I lost my mother when I was 15 when she had a short battle with it, She had only had it for 6-8 months But none of the doctors around knew anything about ALS, so by the time they knew what is was it was to late. She died in march of ‘05 at 44 . In may of ‘05 My father who was also 44 died in a freak 4-wheeler accident, but we all know that he had to go to take care of my mother who he couldn’t live without.
October 12th, 2009 at 9:50 pm
HI NANCY
IM A 14 YEAR OLD GURL WHO MOM WAS TOLD THAT SHE HAS ALS.MY MOM HAS 5 KIDS ND GIONG ON 7 GRANDKIDS.IT HURTS ME TO C MY MOM IN SO MUCH PAIN…I AM ALWAYS HAPPY WEN MY MOM LIVE TO C ANOTHER DAY.ND ILL PRAY FOR U ND UR FAM.
October 12th, 2009 at 11:00 am
Hello Nancy, I am so sorry for your lose of your Mom I know how hard it is to loved one. you are amazing women keep up the good work.