Lots of Readers, No Replys

[Carol Deboer]

Hey Guys !

Just going through the files.....wow......only 13 posts or replies. This is not good. This is a support forum. I wish there would be more responses and replies to those who keep this forum going. It is hard to fathom that so many read the posts, but have absolutely nothing to say. Go figure. Just my observations. Have a great day.

Carol D.

 

[Jane]

Hello Carol: Been a while since I had time to visit the site. Hope Henry is holding his own and swelling problem with legs has been resolved.
Wish we would hear from Fisher and Johnny it has been a long time hope they are all right.
Sis is losing ground slowly but steadily. Speech and voice seem to be going the fastest. She sounds drunk! Legs are getting weaker and balance is also becoming precarious, she uses a cane at times, but continues to do pretty much as usual. Of course she has to make adjustments to things as disease progresses.
Summer is almost here and the first holiday weekend is upon us, hope you have a great one!
Will keep each of you in my prayers love Jane

P.S. I wish there were more posts too, also wish we could have a "live" chat room as well as this message board, perhaps more people will join in . Take care

 

[LMAC]

Jane

What was your solution for swollen legs. My wife is using tension bandages but still has the problem.

Mac

 

[Timshelper]

Knee problems

It is true there really is not a lot of posting going on and I guess I would be one of those culprits. Its nice to see your back from your holiday Carol and I hope you and Henry had a wonderful time. Whats this about you and a red bikini :?: I was talking to Tim today and he said he was having problems with his knees he said they had broke out in some kind of rash that resembled little pimples and they were kind of blisterery. Has anyone else experienced something like this or could he be having some kind of dermatitis problem? He had his stitches removed from his head, thank goodness thats all that happened to him when he fell but his balance is getting worse all the time. They are also taking his license away from him in 2 weeks, I think that was a bit of a blow to his ego but he took it really well. No more joy rides anymore but he did say he ight have to burn a little rubber one more time. Anyway I will try to post more and relay as much info as I can but I think the reason a ot of us don't post is because we use this forum more as a tool for learning from people who have experienced so much more than a lot of us. Thank goodness for all the angels on the forum I don't know what we do without you. :wink:
Godbless
Kim ALS About Loveing Someone

 

[Carol Deboer]

Hey Kim,

Hi Sweetie, good to see you on the forum, I know we are close friends, but it is still good to see you on the forum as well as at home. I would venture to guess what Tim has is Shingles. This is fairly common in high stress situations. And als is one of those. Get to the doc and get medication for this. I am pretty sure that this is what it is. I have a mild case of this right now. This is just a guess, but it sounds right on target. Will talk to you on spritually later. Good to hear from you. Henry is having a feeding tube put in on June 14, is lung capacity is down to 40 %, and he is getting weaker by the day. Hope all goes well with his surgery. Think of us. Will be back soon. Love ya.....

Carol D. xoxo

 

[Debbi]

HEY CAROL, I FOUND THIS SITE AND WAS EXCITED ABOUT IT, BUT WAS UNABLE TO POST. NOW I AM BACK THANKS TO DAVE.....CHECKING TO SEE IF I CAN POST NOW. IT BECAME SO FRUSTRATING I LEFT THE SITE. HOPEFULLY EVERYTHING IS WORKING FINE NOW. HOPE TO GET BACK WITH YOU CAREGIVER DEBBI OHIO

 

[Timshelper]

Prayers for Henry and Carol Deboer

Dear readers of the forum,
I f you have bee just reading or adding in your experiences, as we all know Carol has been one avid teacher and a person who has given many of us a lot of laughs and information whenever needed. If you have been reading the froum you will all know that a few days ago Henry went into hospital to fitted for a feeding tube so lets all extend a few a prayers and surround them with the power of the brilliant white light that everything has gone well. Carol has been there for so many of us and has asked for nothing in return, lets return the favor with love from all parts of Canada.
We love you Carol because you love Henry so much and have treated ALS with dignity, humor and pride. Everyone should be so lucky.
Love as always Kimxoxox

 

[Carol Deboer]

Hi Everyone, (Kim) xoxo

Just a short note to let everyone know that Henry got his feeding tube on Wednesday. They could not do the surgery on Monday as planned, as his stomach was up under his rib cage. They had to give him meds to release his air and gas, and so on Wed. they did another x-ray and did the prodedure. It was quick and fairly painless. He is not sleeping of course, and because he is totally paralyzed he is in the ICU. Best place for him. The nurses are great, our sons our great , we have been driving back and forth every day to spend the day with him, and his mom and dad have been up as well. He is very emotional, and has gotten weaker with his stay there. Hopefully, after some Medicine 101, I will be able to bring him home in the afternoon. I hope so. Gas is so expensive. However, is is 10 cents a litre cheaper in London than here. Go figure. Anyway, Henry will come home with a bi-pap machine, feeding pump machine, and a lean, mean, honey machine ! ( Me ! ) I feel that Henry will now get more pleasure out of eating now, and he will get much better sleeps too. For Father's Day I told him I would cook him anything he wanted for supper because he hasn't ate all week. He told me he wants garlic bbq shrimp, stuffed crab sole, new york tenderloin steak, italian potatoes, and cheesecake. Looks like I will be busy on Sunday in the kitchen.
Anyway, just a short update, and I hope all is well with everyone else. I think of you all so often and I smile........


Stay Strong and Keep Smilin....
Love, Carol D.

 

[Carol Deboer]

Hi All,

467 people haave read this posting. I have not recieved not one response or reply. I feel like I have to give myself all the support on this forum. I write myself, and answer myself, and give myself the support I need by reading my own posts. Funny isn't it. I do not expect nor do I think I being overly emotional by thinking that I am forgotten.
Thats just life I guess. So, I will bid you all a fond farewell, I will not be back. I feel that I need to keep some support on my side as well, so I will look elsewhere. I have made manhy friends here, and they continue to talk to me at home. Good Luck to all. I will miss you all.

Carol Deboer

 

[Jane]

lack of reply

Hello Carol:
I hope you will reconsider and come back again. Things have been busy around here and I have not been coming in. I'm glad Henry has gotten his feeding tube and sincerely hope it goes better for him now. I can hear the frustration and disappoitment in your post, and I'm so sorry you feel so let down. You are a phenomenal person and have given so much encouragement and support to all of us. Sis is slowly loosing ground, need more help both physically and emotionally. Also Mom's need increase at the same time but with God's help we will get through this road he has set our family upon. It has been a privilege to know you and again I am so sorry you feel so let down. Please come back

Love Jane

 

[Timshelper]

What would you have done its too late now?

Dear forum readers
I tried to juggle your memories by posting a letter so people on this forum could at least say thinking of you in your time of the unknown. All I asked for were a few prayers to show our appreciation to a lady who has inspired many of us, made us laugh and had proably answered every new persons letter on this forum. Imagine to my surprise when I got a reply back and it was from Carol, I felt embarrassed and ticked off that no one could take 5 minutes out of their day and say something. It didn't have to be elaborate, just thinking of you would have been fine. I thought people with AlS were compassionate loving people who cared about everybody fighting with this disease. This is the message we are trying to send out arn't we? What happened? This is a physical debilitating disease not an intellectual one so as far as I can see you have all let down one very special person. Think about that because for Carol and Henry its is now time just for them. Hats off to you, and shame on the rest of you :shock:
Love Kim

 

[Al]

Lack of reply

I am one of the guilty who chose to sit and read and not enter into the forum. I have been recently diagnosed with ALS. I thought that with just being new to this mess called ALS that I had nothing to offer. My wife and I have many questions and while the people at Sunnybrook have been fantastic and answered as much as we thought of on our visits it is much easier to sometimes ask someone who is living with it than to ask a Doctor or one of the other staff. My wife and I went to the Strategies for Quality Living Seminar at Sunnybrook on Friday. I went into the bathroom and found that I could not do up the button on my pants. My arms and hands seem to be the things most affected. Panic! I have never had to deal with a problem like this before. My wife was in the hall outside. I finally managed to get myself in order. I was embarassed. Later after the seminar my wife was talking to Audrey MacKinnon whose husband Duncan had passed on this week. She asked her what you do when I can't go to the washroom myself. Does she come in the men's or do we use the women's. Audrey bless her heart laughed and told my wife what to do. The point of this is that you and Henry have been living with ALS for 5 years as I understand it. People like my wife and I need people like you and Henry. You have BEEN there DONE that and I am sure you have the T Shirt. For our sakes please stay around.

 

[Timshelper]

When you need them they are gone and then you wonder why

Dear Al,
Sorry to hear about your diagnosis and you must be going through a lot of emotions, feelings and questions. You are new to this forum just like I was when I first met Carol and she was very supportive and your right because she has experienced so many things and was willing to unselfishly share her life with Henry to all of us, we all became more knowledgeable and became connected to a really great person. Unfortunaltely a person can only give so much before you feel like an old rag and you have to finally say enough is enough. This was a very tough decison for Carol because she does love everyone on this forum and she went out of her way even though her time is spent looking after the man she loves and one day will lose to this mess as you call it. Now people like yourself who are new to this disease and need the support will suffer so I hope the other people on this forum on behalf of Carol will take over her unselfish ways and lend you the support that you will need on the path you have in front of you. I myself am still learning and if I can offer you anything send me your email and I will email you back because what I've seen on this forum is a lot of people who like to talk about themselves but offer nothing in return. I asked for one prayer people, how many did she say for you and your loved ones? As the saying goes let the truth set you free and now we will all have to live with our decisons! "REALITY CHECK!"
AL none of this was directed at you or any of the new comers it was just bad timing.
ALS About Loving Someone
Kim

 

[Al]

Emails

Hi Kim : I tried to send you my email using the PM setting in the forum page and it came back saying that it had failed. If it didn't come through I'll post it here if need be. Apparently no one reads this anyway LOL. Still have my sense of humor. Let me know and I'll get back to you in a few days. Off to the cottage for a few days. Happy Canada Weekend.

 

[Timshelper]

Dear Al,
I'm not really sure how that PM thing works either but I didn't recieve your email address. I guess you could put it in your personal file if you wanted but thats up to you. I'm glad you could get away for the weekend and I hope you enjoyed yourself. Having a good time is special and it keeps your spirits up and if you have family to share it with its a good thing for everybody. I don't know why sometimes it takes a disease to realize how special life can be or just how important small things can put smiles on our faces but we don't think of that until we are faced with some kind of tragedy. Having a positve attitude with ALS is vey important as with any other immune or neurological disease once we let our brains take over and we get depressed we become much sicker. So we need to keep our hearts and our minds on the same wave length which means positive thinking,open mind to new suggestions no matter how bogus they may sound. We need to either beleive in ourselves or the person with the disease that they can get through every day to the best of there ability and we don't watch the clock that the Dr has given us. Keep your head high AL and research anything you hear about. There are people out there that do have answers to your questions.
Sincerely,
Kim ALS About Loving Someone