|
|
up a level post article search admin
|
from the dept. Hi, my name is Emily and I'm in High School. My health teacher wanted us to pick a disease or drug to present. I decided to pick ALS after learning about it from Curt's Pitch. After siging up for the newsletter I decided to ask Scott if he would mind coming to my school and talking to my class about it. Little did I know that his mother is suffering from ALS and his story touched me deeply and it touched my class deeply. Since then I have been helping out with ALS. I recently helped out with the Positive Spin For ALS. I just want to thank Scott for coming to talk to my class. It really opened my eyes to what is out there. Before this I never thought of doing any volunteer work. Read More... from the dept. I just wanted to let you know that my prayers are with you. My mother was officially diagnosed 2 weeks ago. She is in Minneapolis and I am living in Boston while my husband gets his MBA. Since the disease is progressing in her so quickly, I plan on heading home to live with her and my dad for some time. I feel so helpless being far away. I have had a hard time accepting exactly what is going to happen. I think that the severity has just recently hit me. It takes a very strong family to get through all of this...and your family seems wonderful. My prayers and thoughts are with you all! Read More... (1 comment) from the dept. Hello, Have you considered treatment in India ? The costs are only a fraction of what they are here and the quality of the service provided is upto international standards. (My familiy has been through a lot and we know first hand) Considering the debilitating costs here, it would be worth checking out the India option. All the best ! Aju. Read More... from the dept. My mother was diagnosed with bulbar onset ALS. Read More... (1 comment, 433 bytes in body) from the dept. I just found this site today - yours is truly a heart-wrenching story -My Father was diagnosed with ALS in March of 2001 - 3 months after my mom passed away from a different illness....... Read More... (2 comments, 1154 bytes in body) from the dept. Mrs. Edelstein and her family are always in my thoughts and prayers. She has an amazing family that I know is so committed to her. You all are a great inspiration. Read More... from the dept. Hi Joyce's family, I just read your Mom's story. Tears began to fall as I read her story. I was reliving my own experience with ALS. I was diagnosed with ALS in 1976.I'm completely paralyzed from the neck down and have been completely dependent on a ventilator for 17 years. But with God's help, I live a fairly active life. I go to church, shopping, etc. We must fight this monster until the last breath. With God nothing is impossible. If I can answer any questions or be an encouragement contact me. This is my web page address. It has my story. Read More... ( 53 bytes in body) from the dept. I saw the link to your Mom's website on our friend Dave's AIM....You and your family are very courageous, and I wish you all the support and all the hope that a cure will be found for your mom and the thoursands of others suffering from this disease. Read More... from the Communication dept. Joyce and Family - My name is Donna and I read the article in the ALS report. You story is exactly what me and my husband are living. My husband was diagnosed in Nov. of 1997. He is currently on a vent at the Goddard Center in Stoughton. He has been on a vent for 4 1/2 years. He can only move his legs and feet a very small amount and he has facial expressions. We communicate with a plexiglass board with letters on it. It has been a god send. I read the Joyce communicates by each of you saying the alphabet and that is what me and Ed had done at the beginning. The board (as we call it) is amazing to use and communicate with. We have been featured in the newspaper and will be on NECN in the middle of October (showing the board) and how to use it. I would love to have you email me back on this and maybe we could get together. I don't get on the computer much because I work and also visit Ed everyday. I will try to check my email each day to hear from you. Again, we know what it takes to be fighting this disease everyday, we have been doing it since 1997!!! Hope to hear from you soon! Read More... from the dept. Hi...I just want Scott and his family to know that as much as you would not believe that any other family in the world would know what life is like with ALS or what it is like to have your Mom diagnost with ALS is like..I DO. Read More... (2 comments, 1959 bytes in body) from the dept. my dad was a great man but on aug. 2000 he was diagonse with als. Read More... ( 435 bytes in body) from the dept. my dad lost his life to ALS and went through the same things Read More... (1 comment, 1030 bytes in body) from the dept. I feel for your family, mine is going through a different kind of crisis. I just want to suggest to you maybe to offer paypal doantions. It is a great way to collect. Often browsers come across a site and say, yeah I am going to donate but never get around to it. With paypal it is instant, not too mention many like me have some money sitting there from a recent acution item sold that is not being used which many would offer for your cause. You can find paypal at www.paypal.com God bless. Read More... (1 comment) from the dept. My Grandmother lost her long battle with ALS 3 years ago this New Years Day. She had the form of Bulbar Palsy, which took away her ability to eat, swallow, speak and eventually breathe. She was bed ridden for a good month and half before the disease consumed her tiny, frail body. Not a day goes by that my familiy and I do not think of her in some way or another. Let it be happiness of the memories we had with her,anger of how she was taken from us or just plain confusion on what this horrible disease is all about? Our friends and family will be participating Sunday, Sept.21 in the Walk to D'Feet ALS.It is a fundraising walk at Stoney Creek Metro Park here in Michigan. We do it in memory of our Grandma( we called her Gaugee) and for other families out there who have been touched by ALS somehow. I send my strength to Joyce to keep a clear mind and to continue to think positive. I send her family much hope that soon enough our doctors and scientists will break through with the much needed cure for this horrific disease. Read More... (6 comments) from the dept. My dad was diagnosed with ALS in Feb. 2003. I was doing some reading on another ALS message board and I found the link to this site. I just wanted to say that I think this is a wonderful site and that I wish you and your mom the best, from her story she seems to have a positive attitude which helps alot. Small world, we are from Mass also, my dad lives in Woburn. Do you know of any support groups that I could recommend to him? Take care and God bless. Read More... (1 comment) from the dept. A close friend of the family was diagnosed with ALS a few months ago. Soon I will observe what you all have gone through. Thanks for letting me know that there are others experiencing, fighting back, coping, and loving. Love is very important; Joyce is blessed to have a great deal of it. Best wishes Read More... from the dept. My 16 year old daughter has ALS and in 5 months since her diagnosis has gone from being a normal teenage cheerleader to totally unable to move, on a vent, and speech almost gone. Our Family will be praying for joyce Read More... (1 comment) from the dept. God Bless Read More... (1 comment, 357 bytes in body) from the dept. Hey, I'm a good friend of Scott's. I met Mrs Edelstein for the first time when she was in the hospital. By this time, she was already placed on the ventilator and could only move her eyes to communicate. It broke my heart to see Scott and his mother together in such circumstances. It was painful to watch them trying to communicate with each other, spelling out messages with Mrs Edelsteins blinking motions. I could see the frustration in both their eyes. I couldn't possibly imagine living with this disease in my family. I don't know if I'd be strong enough. Seeing the Edelsteins fighting ALS and refusing to give up hope on their mother has completely changed my view on the fragility of life and the strength of family. My best wishes are with the Edelsteins. I hope that if there is anything I can do for them, they won't hesitate to ask. Read More... from the dept. Hello, we are Scott's friends from UMASS and we just wanted to show our support. Joyce is very lucky to have such a loving family. We are hoping a cure is found very soon. Good luck with the website, and we will spread the word! Kerie and Brittney Read More... from the dept. I saw this link on a friend of a friend's AIM profile...I wish you every blessing, every blanket of comfort. What has gotten me through trying times is the memories...with memories, nobody ever gives up or is lost forever. Hold tight to the memories and to faith, and I wish your family the very best. Read More... from the dept. I know your going through a very tough times. My father was diagnosed with ALS late last year so I know exactly what everyone is going through. Please stay strong and know that GOD is always around us, protecting us. GOD BLESS YOU ALL ! Read More... from the dept. Joyce's son, Scott, here again. The message posts have temporarily stopped! Let's keep them going! Everyone who is seeing this, post a message! Tell us about yourself! Tell us why you are visiting this site! Tell us ANYTHING!!!:) Read More... (2 comments) from the dept. My mother in law was only 56. She passed away on Tuesday June 3, 2003 peacefully in her sleep. She had suffered from ALS since she was diagnosed on May of 2002. Her symptoms had been noticed for about 2 years. From the time she was diagnosed on May 2002 she was still able to walk and talk then about 6 months into the disease we noticed she was not able to walk anymore she would fall down for any reason at all then her speech gave out and finally her whole body just shut down completely she was trapped in the shell of her own body. Als is a horrible disease and very depressing to cope with. God rescued her from this horrible disease on June 3, 2003 in the comfort of her own home while she slept. We miss very much and wish we could have her here with us again, but we take comfort that she is no longer suffering. God Bless everybody battling this horrible disease and thier families. Read More... (1 comment) from the dept. hi...i dont know u or ur mother but i do wish her the best of luck and i hope they find a cure...wish i could donate...i can donate a prayer...for the best of wishes Read More... from the dept. Joyce you are very blessed to have a wonderful loving family. My husban is an ALS sufferer. However we count our blessings not our losses or our problems. If things seems really bad we talk about our grandchildren and some of the antics they play that make us laugh. Have a good day! Read More... (41 comments) from the dept. Reading "Joyce's Story" really made me think. I think im depressed all the time because things havent exactly been going right for me over the past year but I now realize that things could be a lot worse...and if someone can live under the conditions in which Joyce does I can live under the conditions that I have to. I dont have much to offer when it comes to donations...but whatever I can spare I will. Read More... from the dept. Hello everyone! This is Scott, Joyce's son! Feel free to post any questions or comments here. Also, if you have any suggestions for the website, also post them here! Oh yes, and most importantly... tell your friends about this website! My mom really needs your help! Thank you! Read More... (7 comments) from the dept. Please post your questions or comments in this Discussion Board! Read More... (1 comment) |
|
|
|
||
| All trademarks and copyrights on this page are
owned by their respective companies. Comments are owned by the respective Poster. Hosted & Maintained by: Michael Fine of MeFBoston. ©2004 |
||