Making A Difference.

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hope

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Oct 1, 2005
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As the days go by I have watched my husband live with ALS. We have cried a million tears. As you know it is very difficult to put into words how painful this is. Since the day my husband was diagnosed we have found that there is a loneliness that enters your life, an isolated feeling. We left the doctor's office feeling terrified, numb, and totally exhausted from all the months of worry wondering what was wrong with my best friend. There are many challenges to face. We have found very little in the way of support. I said this from day one, it is like you are out on a clothesline. You don't know which way to go, what to do. As the days go by and you realize that this is here to stay, this is really what they say it is you start to search. You search for the best care you can find. You reach out. What happens though when you reach out and there is not alot there? You become more frightened but you find a strenghth within to fight this fight because this is your loved one and when you love someone you take care of them to the best of your ability. The day we married the priest said through sickness and in health and that is what my husband and I have been doing for many years and will continue to do so.

We have decided that we know how lonely and isolated we feel so we want to help others, we are writing a book together and we are going to try and bring more awareness in hope that we can make a difference not only in our lives but the lives of others who suffer.

One thing I do have to say though is the one place where we do find wonderful support is here. Everyone is here is so kind and caring and we thank you for that.

Sandy.
 

Granny

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May 18, 2005
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And thank you, Sandy, for your insight.
Isolation is a word I have used may times to describe the struggle with ALS. No matter how many people are around or even how much support you get, you feel different, isolated, lonely, almost another kind of being sometimes. I think this is especially true for those of us who live where there are no other PALS around. I am so thankful for this fourm where I can find other people like myself.
Your have written about it so well, I am sure your book will be very helpful to many. Bravo!
Love, hugs and prayers
Leah
 

Dee

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Mar 1, 2006
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Hope,

You have put into words a very good description on how patients and their families live with ALS. When my father was first diagnosed, I thought I would cry myself crazy! It was so hard because nobody "really" understood how I felt because unless you have contact with this disease in a personal way you couldn't possibly understand. His doctors were even cold and dismissing at time making my mom feel so helpless. Thank God she is a nurse and was able to take care of him. She felt many of the same feeling you described. This forum is such a great place to be. I find so much comfort talking to other who understand this disease.

Praying for a cure!
Darlene
 
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