Old 07-17-2004, 10:34 PM #1 (permalink)
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Default hello, where is everyone

Hello everyone,
It seems to be very quiet in here. Where is everyone. Fisher how are you. T Bear are you hibernating! And Carol I do hope you will come back and let us all know how you and Henry are doing.
Sis started the double blind drug trial about 6 weeks ago. So far everything is going well, some minor side effects, that make her and the Dr. feel she is getting the "real mccoy". She has felt better for the last week, I hope it is from the drug, and that it will last, it would bring hope to all sufferers of this horrible disease.
The summer is going by so fast, I hope you are all able to get out and enjoy it.
May God give each of you Pal or Cal strength and comfort on this ALS road. Jane
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Old 07-18-2004, 02:16 PM #2 (permalink)
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hi hi.......I'm here still strugling along. Lots happening in my world. Got a new van finally, too bad it cost me my convertible,but transfers are now impossible. I think I told yas bout having a ceiling track and lift put in.
(saves Linda's back) She's a trooper for sure. Oh yeah, getting a new chair too (more bells and whistles) Pretty much paralyzed and losing speech fast, other than that, I'M GRRRREAT! Hope everyone is ok

Jim
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Old 07-19-2004, 07:24 PM #3 (permalink)
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Hi Jane... and Fisher... and anybody else out there;
I hope all are well with you. Fish, I see that you've become a technology wizard. I hope you're still able to enjoy a libation or two when required. I'm still trying to get work done on my cottage ... in between beer breraks.

Jane, your sister is a real trooper. These drug tests are very important to advance the science.

I'm sure that Carol is reading this stuff when she has time so everybody should be sending her a big hug too

Enjoy the summer... winter is too long!
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Old 07-27-2004, 08:21 PM #4 (permalink)
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Default Please keep in touch at home.... Carol D.

Hello Everyone,

I just want to give you all my home e-mail address. If anyone wants to keep in touch, please feel free to mail me at home. Hope to hear from you all soon. I do miss you all.

cdeboer@cogeco.ca

Keep in touch. Hugs, Carol D.
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Old 10-19-2004, 02:30 PM #5 (permalink)
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Okay - I'm caught up on replying! Hope everyone is doing well. It's a brisk cloudy fall day here! - me-
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Old 10-27-2004, 01:43 AM #6 (permalink)
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Default ALS About Loving Someone

Dear Pals and Cals,
As you may have or have not noticed Carol has not been on the forum. A little odd isn't it. Has anyone asked where she is. She is spending her last days with her soulmate her friend and husband. Henry is not doing well and he needs all of our support and prayers. Carol needs all our strength and love to help her get through this devestating worthess disease that destroys peoples lives and souls. Her family needs our support too after all they are losing their father and what a wonderful man he seems to be. I only wish I had the honor to meet him. this prayer goes out to the Deboer family:
DEAR HOLY SPIRIT;
IN THIS MOMENT I CANNOT MOVE. I DO NOT KNOW WHAT TO DO. PLEASE MOVE THROUGH ME, TAKING ME IN THE DIRECTION TAHT WILL SERVE YOUR WILL FOR ME. FILL MY MIND WITH THE THOUGHT THAT WILL LEAD ME IN THE DIRECTION. SHUT MY MOUTH. IF I HAVE TO SPEAK , SPEAK THROUGH ME. SHUT MY EYES. IF I NEED TO SEE ANYTHING, SHOW ME WHERE TO LOOK. CLOSE MY EARS. IF THERE IS SOMETHING I MUST HEAR, PLEASE WHISPER IT INTO MY HEART IN A WAY THAT I CAN UNDERSTAND. IF I STOP, GENTLY PUSH ME BEYOND FEAR AND DOUBT. I AM TRUSTING YOU SO THAT I MAY TAKE THE MOST APPRORIATE ACTION FOR MY HIGHEST AND GREATEST GOOD. THANK YOU. AND SO IT IS.
TODAY I AM DEPENDING ON DIVINE DIRECTION TO LEAD ME WHERE I NEED TO GO.
I am depending on everyones support to be their for this family. Carol has been there for everyone on this forum this is a tribute to her and her family.
Thank you Carol and Henry for teaching us all and giving us all a laugh, it has been my pleasure just knowing such wonderful people.
God speed
Kim Crozier
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Old 10-27-2004, 08:29 AM #7 (permalink)
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at the moment I don't know what else to say
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Old 10-27-2004, 10:12 AM #8 (permalink)
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Default To me

Hi just recognizing this post says it all and rememer just to pray thats all I'm asking for these two people who have enriched all our lives.
Thank you
Kim Crozier
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Old 10-27-2004, 11:14 PM #9 (permalink)
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Default emails would be a nice touch

Just in case some of you woud like not to put your feelings down on the forum Carol has her email on this page. I think sending a email and telling her how much you care and that you are thinking of her and Henry that you would like to say personally without other people knowing would be a nice touch. Maybe I sound like I'm starting to badger people but we will all be going through this some day and I hope your freinds and family will do the same for you because you all deserve the dignity of knowing your life was worth some thing to all kinds of people even if you never meant them. We are a team and we are not going down without a fight.
Kim
ALS about loving someone no matter who they are.
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Old 10-28-2004, 07:08 PM #10 (permalink)
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Hi Kim and everyone,

Thank you so much for your wonderful words. What wisdom! You have such a way with words, you are truly blessed. Yes, things here are getting quite bad. It seems that over the course of a few weeks Henry has failed significantly. It is quite a shock, even though you know that it is coming. He is in a great deal of pain, and his feeding tube is bothering him tremendously. I will have the doc to the house soon to assess him again. We are just emersed in keeping him comfortable and happy. He needs us with him all the time now. I feel very weary myself and going through a funeral this week has caused me to crash in emotions. I know it is normal, and we have a wonderful support system, thank God. Anyway, I will check in often, or as often as I can to say Hi, and to let you know that I am thinking of all of you. Stay Strong, and hugs to all. Kim, you are such a inspiration, Melissa, you are a doll. TBear, as always, you never fail to amaze me with you wisdom. Al, hang in there, Lee, you have a great guy! Jane, I pray for your sister everyday. Fisher, come in off the deck, you must be frostbiten by now! Makes it hard to hold the wine glass. ha... Love to all...... Keep us in your prayers..

Carol
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Old 10-28-2004, 09:21 PM #11 (permalink)
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Default support and prayers for Carol and Henry

Hello Kim, You have a great gift of eloquence.(hope I spelled that right).
Your prayer was wonderful. Thank you, for tell us , I did not know that Henry was so ill.

You said it all thanks jane
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Old 10-29-2004, 02:51 PM #12 (permalink)
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Carol - It was so good to hear from you. I can imagine your emotions are topsy turvy right now. I am so thankful you have a good group of loving people around you at home. Just because things are expected does not make them any easier. I just want you to know I sent an e-card your way. I don't know if you got it, if you're email is up and running. But it case you didn't, I send my prayers and hugs. Wish I could be there in person to give you all a big bear hug! Until then, you pass through my mind often and I say a prayer for you. I pray for comfort and peace for Henry and of course peace for you and the rest of your family.

Everyone else - This is such a great group. I'm off to London in a few hours but I'll check back in Monday morning.

Al - I'll check that vitamin E thing out when I return. I read a book that talks a lot about vitamins and natural healing stuff. I remember it talking about the type of "E" to use. Also seems like I've read it somewhere else too.

God bless you all!
-me-
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Old 11-01-2004, 11:22 AM #13 (permalink)
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sure sure ! make Me come inside I'm not done playing on the deck LOL

big change in the weather anyway. hope this catches everyone in at least reasonable shape. I had a swallow test last week [passed] and spent a whole day in london taking the speech and cognitive testing. I think that will be the last time for me because they can't find any veins to put the tracer in for the C-scan . took them over two hours to get me done,it should have taken six minutes.

has anyone heard from carol [how is henry?]

next day at the clinic is the 23rd of nov.MY BIRTHDAY

by the way,got married too. don't know why she'd have me but she does

good luck to everyone hope the winter doesn't get you down

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Old 11-01-2004, 11:47 AM #14 (permalink)
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Hey Fish!

If you stayed out on the deck longer you wouldn't need to put your beer in the cooler... but I guess it's wine season now. Carol has been online from time to time and I guess is quite busy with home and work but I bet she'll find a way to respond to you.... Married? I didn't know people did that any more! Congratulations!

T.
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Old 11-02-2004, 09:23 AM #15 (permalink)
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Hi everyone,

Hope everyone is doing okay. Fisher, congratulations on the your marriage - it's nice to hear some good news!


Carol if you are checking in from time to time, know that our thoughts are with you and Henry. I hope that you are doing okay. Try to keep your spirits up and know that you are being thought of often.

Take care all,

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