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  • Yay! You go girl!!! I'm good! have been doing a little traveling and plan on doing more. I use AFOs and a walker, type with my thumb on my right hand and slowly with my left. Still relatively upright, breathing, swallowing and singing while I drive. My husband is the best and takes good care of me. I am blessed.
    Thank you, Mary! I hope to help anybody going through this by telling our story, as painful as it is sometimes. Good luck to you and hang in there!!!
    Thanks for the message. I see you live near us. We are in Raleigh. It's been a difficult and confusing time. So many thoughts and questions...
    Hi Mary, it is good to hear from you. I apologize for not responding sooner, it has been hectic. This year we had friends for the holidays and making sure I had everything was crazy.

    Ed is doing good. When they put him on the zoloft it had a major effect on his progression. We were greatly surprised. Along with the Riluzol he has been doing good. Not great the choking has increased (he will be going for a feeding tube) and we were told he will lose his speaking abilities.

    How are you doing? Please let us keep in touch.
    Here's hoping you can find some time just for "Mary" over your break.
    I was just stopping by your page to thank you for allowing me to "vent" and also your help with certain "issues." I am so enamored of this forum and all of the help from wonderful, caring people, such as your self.
    Merry Christmas!
    I am 12 miles from the coast in Conway SC,we border on MB,I have the Conway Medical Center less than three miles from my house,there is a small VA clinic in MB,if there were problems they would send you to Charleston,thats my ALS clinic,21/2hr drive.Look around and make the right choice,good luck!-------------------------Hugs Ken
    I've been good actually! Visiting family up in MI and having lots of company all summer and will have lots in the next couple months. I have a birthday ending in 0 in December so Mom and most of my sibs will be here. Yes, when you live someplace fun you get lots of company. :) I love it! Hang in there Babe! Stay sane, healthy and you.
    Hugs, Marta
    Just a fly by here! How are you Mary? Haven't see you anywhere for awhile. Let me know what's up in your world.
    Hi, just wanted to let you know that we received the call today and Ed's award was finalized along with aid and attendance, adaptable housing and the conversion van. As soon as we get the letter, hopefully Friday or Saturday we will be happy.
    Thanks Mary you are a sweetie. Encouragement is always welcome. Thank you for being a friend. Please let us keep in touch with each other.
    Congressman Nugent's office is helping. I could not believe they told my DAV rep that. I was upset Friday, to hear this yesterday, made me do the reverse. Now I am ticked off. I know that it will be this week, if I know Erin. Ed is not that bad but he is weakening, he is not good either. What I am afraid of is the progression jumping ahead of me being home. He is having a lot of spasms in his arms now and has progressed to the VA utensils to eat because of not being able to hold a regular fork or spoon. He also will be going on the bipap but if I can persuade them to give him a concentrator with the tubing he will be more comfortable. When my husband tells me he is not feeling good, he really is not feeling good. He has the most beautiful blue eyes and they are no longer bright.

    Mary, I really do not care what we get as far as money is concerned I just need the $2823 for the mortgage and hoa dues and I would be happy. My house is not yet handicapped adaptable.
    Yeah, Mary. I am so happy for you both. Congratulations and please tell your husband that we hold everyone in our prayers. Please keep in contact with me and let me know how you are doing.

    Ed is weakening and I am hoping for the letter this week. It seems I was told today by the DAV that they are now trying to play games delaying any decisions on claims. I have a special person working for me and I hope to at least hear Monday that it is approved.
    You too Ms. Pie - I bought an apple and a cherry pie! There is definitely ice cream waiting for you too! Hope your day is going well:)
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