newday
New member
- Joined
- Sep 28, 2010
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 10/1992
- Country
- US
- State
- NY
- City
- Westbury
Hi All. This is my first entry in this forum. I have been living with ALS for the past 18 years now. I am a quadraplegic and the only thing that I can move is my head, just to the right side. I have been confined to a bed in a nursing home for the past 15 years.
I consider it a miracle that I am still alive for such a long time. You see, I got all freaked out when I got the life altering news. The night after the doctor told me I have this fatal disease, I dropped down to my knees and begged God for my life! I begged God to let me see my two young sons grow up. I am also praying that there will be a cure for ALS in my lifetime, so that others do not have to suffer from this monster disease.
I believe that this disease has changed me and for the better. I have a greater appreciation for life now and I don't take anything for granted anymore. I love my life and have a wonderful relationship with my children. I don't feel sorry for myself and I don't let people feel sorry for me either. I have so many new friends and I love them so much and they love me too. I wake up every morning and thank God for another new day. Every day is a new beginning and I believe that's a huge blessing. Then if I have any regrets from the day before I can get another chance to make it better with a new day. It's very hard sometimes because I am paralyzed and there are so many challenges I am faced with daily. I am on medication for pain, but sometimes I still get episodes of intense pain in my legs and hips. I am a fighter and I will keep on fighting this disease. My care is getting more difficult and when I get down and depressed I think about how lucky I am and I'm very thankful.
When I think about the ALS I get scared because I don't want to die. I have way too much to live for. But I believe that we are all dying and every day is just one more day closer to our death. I try to think about what motivates me and what keeps me thinking only happy thoughts. I always think about my two sons and they usually put me into a positive frame of mind. Then God gave me a beautiful and precious granddaughter a few years ago. She gives me so much joy!
Another way I keep my mind of the disease is by working on my computer. It's a special Dynavox computer. There is a wire that runs from my computer and a sensor is taped to just above my eyebrow. With the keyboard page in front of me, I can stop the scanning on any letter I select by moving my eyebrow slightly up. I correspond with about 25 people. I also wrote a book about my life but it's stuck inside my son's computer. People tell me I am a prolific writer and I spend many hours on the computer. I am also able to use my computer to control my television and I love watching my favorite programs. When I watch television, I am totally involved in the program and it takes me away from reality.
I would like to do whatever I can to help other people who have ALS. I would love to hear from anyone who would like to write to me and I would like to answer any questions you may have about dealing with the many challenges of this disease. I still remember vividly how horrible it was when I got the diagnosis of ALS and can understand how difficult it is for you. God bless you always.
NewDay
I consider it a miracle that I am still alive for such a long time. You see, I got all freaked out when I got the life altering news. The night after the doctor told me I have this fatal disease, I dropped down to my knees and begged God for my life! I begged God to let me see my two young sons grow up. I am also praying that there will be a cure for ALS in my lifetime, so that others do not have to suffer from this monster disease.
I believe that this disease has changed me and for the better. I have a greater appreciation for life now and I don't take anything for granted anymore. I love my life and have a wonderful relationship with my children. I don't feel sorry for myself and I don't let people feel sorry for me either. I have so many new friends and I love them so much and they love me too. I wake up every morning and thank God for another new day. Every day is a new beginning and I believe that's a huge blessing. Then if I have any regrets from the day before I can get another chance to make it better with a new day. It's very hard sometimes because I am paralyzed and there are so many challenges I am faced with daily. I am on medication for pain, but sometimes I still get episodes of intense pain in my legs and hips. I am a fighter and I will keep on fighting this disease. My care is getting more difficult and when I get down and depressed I think about how lucky I am and I'm very thankful.
When I think about the ALS I get scared because I don't want to die. I have way too much to live for. But I believe that we are all dying and every day is just one more day closer to our death. I try to think about what motivates me and what keeps me thinking only happy thoughts. I always think about my two sons and they usually put me into a positive frame of mind. Then God gave me a beautiful and precious granddaughter a few years ago. She gives me so much joy!
Another way I keep my mind of the disease is by working on my computer. It's a special Dynavox computer. There is a wire that runs from my computer and a sensor is taped to just above my eyebrow. With the keyboard page in front of me, I can stop the scanning on any letter I select by moving my eyebrow slightly up. I correspond with about 25 people. I also wrote a book about my life but it's stuck inside my son's computer. People tell me I am a prolific writer and I spend many hours on the computer. I am also able to use my computer to control my television and I love watching my favorite programs. When I watch television, I am totally involved in the program and it takes me away from reality.
I would like to do whatever I can to help other people who have ALS. I would love to hear from anyone who would like to write to me and I would like to answer any questions you may have about dealing with the many challenges of this disease. I still remember vividly how horrible it was when I got the diagnosis of ALS and can understand how difficult it is for you. God bless you always.
NewDay