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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
 
Welcome to the forum, so glad you found us, just the kind of person we are so grateful to have come along on the journey. I can say I smile in my heart when I hear of people like you living so many years with this disease, it gives hope and inspiration to all who read it.
You sound like a great person, get that book off the computer and into print, I will be the first person to purchase 10 copies. Join us often, you are are given a big hearty welcome.
 
Thank You for sharing your story with us. Your perserverance and positive outlook is an example for all of us to live up to. I think it is wonderful that 18 years later you still recognize all of the blessings that God has given you in life. Congrats on your granddaughter as well, you are right you have a lot to live for as we all do. Welcome to the fourm and please do not be a stranger. God bless you and your family.
 
Welcome to the forum ,you are an inspiration to many with ALS .Keeping a positive attitude is so important & I see that you have done that.God Bless you & your family.
Sharon
 
Good for you! I don't often meet people who are in the same shape as me and have a like attitude. It is great that you joined us! Welcome to our family! Don't be a stranger.
 
What an inspiration you are, and your attitude is fantastic. I'm personally still struggling to come to terms with this awful disease and can only hope and pray to be as positive or around that long to see my daughter grow up.

Thanks for sharing your story, take care.

Chris.
 
Thanks for sharing your insights...I am newly diagnosed but often wonder will I be able to have a positive attitude down the road when this disease locks me in. Your outlook gives me hope that the future is bright especially if we chose it to be no matter the circumstances. Blessings to you and your family! Keep writing!
 
Heres to a NewDay,

Welcome and bless you for sharing such a lengthy story about yourself. You are an inspiration to me and to others. I am anxious to see your book. Lets get it out there if you can. God bless,
 
hi newday . . Its great you joined . . I look forward to reading your input in the future .. And reading your book so best get it on computer . . 18 years and still going strong is inspiring. god bless . . Alex
 
Hey there, NewDay,

Welcome to the forum! You are truly an inspiration! Good to meet you!
 
hi newday.
your story is so encouraging and uplifting,you are truly an inspirational person.
it proves how powerfull a positive attitude can be.
i have had pls 11yrs with chronic pain but like you i take my mind off it by focusing on other things.........it does work.
look forward to your future posts.
caroline
 
Hello Newday,
Welcome aboard. Post like this gives us hope.
GOD Bless Wayne
 
Hello, New Day. Your attitude is wonderful, and I wanted to welcome you to the forum. As alex scared said, better start getting the book out! How wonderful that you computer can do so much to help you. Thank you for such an uplifting post.
Ann
 
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