Change of Mind

[ruthiep]

I’ve had a few days to reconsider the questions I wanted to ask on the forum about Scott’s rate of progression compared to other PALS. After thinking things through and talking with my Mom in depth (she’s a blessing) I FINALLY realized that it really doesn’t matter. Everyone is different. There is no point in trying to second guess this obnoxious disease. Those closest to Scott, ie., his family, friends and doctors are the best judges. I think I’ll simply take each day as it comes and not compare his progression or lack thereof to anyone else. I’m scared I may set myself and others up for unnecessary heartache if I focus on anything more than the here and now. It is what it is, now we simply have to make the best of every day we are given! I pray that I can keep this state of mind. That being said, I’m off to finalize the invitations for the “low country boil” we’re having in honor of Scott’s 50th Scott’s birthday in a couple weeks. Looking forward to having our wonderful friends and family join us to celebrate! Hugs to all!

Ruth

 

[brooksea]

Hey, Ruth!

You are right! I never have tried to figure out what would be next, but just educated myself on what could be. That's all you can do.

Hope his 50th is grand! Hope you will also post pictures of the celebration. (No pressure.) LOL

You hang in there!

 

[Pandora]

Your right! Every case is its own. In our case we are going fast, but we still try to enjoy every moment we have. It is a hard road to travel, and we all have been placed here against our will. Try to do everything you want to do NOW. There is no more time to "get ready". It is what it is, and we all are dealing in our own ways. Remeber to take time for yourself. I keep telling myself thsi everyday. Laugh as much as you can even at yourself. Hang in there, and we are always here for you.

 

[KKay]

Ruth, You are definitely on the right track, otherwise you could drive yourself mad. There are times when I ask someone close to us what they think about my husbands state, because me being so close sometimes I feel that I am making him out to be worse (in my mind) than he really is. Other times I need confirmation that what I am seeing is real (as it soo unreal!) before I make necessary phone calls and purchases of equipment. At times when my thoughts start to wonder "what ifs" and "could be's" and "ten years from now.." I remind myself that we are here in today and this is our life as we are living it, the man I love is right here, right now. And then I say a prayer and thank God for today.

 

[joni51]

Ruth that is all we can do , love them, take something from each day, and I hope the country boil is great, and he enjoys his big day.

 

[cervus]

Ruth.....stay in that frame of mind. It's the best way to handle this disease and as devastating as it is, we can still have lots of happy times and create more beautiful memories with ones we love while we still have them with us, physically. As Brooksea said, educate yourself on this disease and though every body is different, be prepared in advance for what the next stage could be and have the equipment ready before you need it. Like I've said before, laugh, cry and joke and love and live as well as you can. Happy Birthday to Scott! Yasmin

 

[Katie C]

I've always felt the most important lesson learned in the journey that is ALS is "It is what it is"

 

[ruthiep]

Thanks to all....I realize that my choice may not work for everyone, but it does for me, at least for now. Great advice and I really appeciate it! Thanks again. Kuddos to an amazing group of special folks---hugs being sent your way.

Ruth