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

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

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!

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.

Okay - I'm caught up on replying! Hope everyone is doing well. It's a brisk cloudy fall day here! - me-

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 :cry:

at the moment I don't know what else to say :cry:

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
ALS About Loving Someone :)

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. :idea:

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

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

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-

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

Fish

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.

Hi everyone,

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


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,

bear2

Fisher - that's awesome news about the marriage, she's certainly lucky too!

Jane - I read somewhere (I'm not sure if it was this topic or another one) that your sister is feeling better. Hopefully it's the medicine. In the meantime I know you'll both enjoy the time.

Carol - I'm thinking lots of you. When we came through Sarnia Sunday I wondered if I was anywhere near you. When the time is right we'll meet. Until then I send another hug your way for you and your family.

Kim - thanks for keeping us all on track! Sometimes we need to be reminded what it means to actually post.

Everyone else - have a great day. I'm off to vote....it's election day for me!

-Melissa-

Fisher, congrats also, wonderful news. Sorry the group pulled you from the deck, but the Huron winds can be wicked in the winter. I vacation frequently in Southhampton...no better sunsets then the Huron Shore Line.

Carol, my thoughts are with you too. I read often, but do not always have access to post in this household of booking online time. I attended the support group that Al mentioned in a posting attached to another topic. Met with one who has been diagnosed for many years. His enthusiasm and ideas were incredible. As was his wifes. God love you all for the support you give your spouses. I'll keep Henry attached to my prayer list.

Congrats to you fisher and the new Mrs. Glad to hear there are still some old fashioned people left in the province. Carol our thoughts are with you and Henry. Not a real religous kind of guy but every once in a while I do pray and I remember you and the rest of the gang as I sometimes call the people here. Hope everyone is as well as can be expected and time to put another blanket on the bed. Below freezing tonight. Not looking forward to the winter but what can you do? Other than go to Florida. Hmmm. Might be an idea. Nobody answered my post about the site administrator. How do we contact him? A friend is having trouble posting.

Has anyone heard personally from Carol? How is Henry doing? How is she and her family doing? I miss her and my heart aches. I am so glad she has a close family.

Our family is not all that close. My parents live 90 miles away and that's really okay, we're not that close for various reasons. His parents are separated and live in different cities. He is close to his dad which is very good. Luckily, we have some awesome neighbors. We were really blessed with them and they have become like family to us. It is good to know they are there if we ever need anything.

Thanks to all you have posted on the intruduction page. It has really helped. You all are such great people and it certainly seems there is a good spectrum of experiences to be able to pull from. As someone said, this does seem to be the best forum on the web. That's why I stayed, even though I'm not Canadian! (only an hour away though)! -me-

I always figured we were a non denominational, nationality, color or anything else for that matter type of group. We welcome all who have been touched by this horrible disease. I haven't gotten any mails from Carol but I have been thinking about her and Henry as we all are I'm sure.