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Carol Deboer

Distinguished member
May 7, 2003
Hi Guys,

As you could probably all tell I was down and out for a week or so. My computer went down and it took over a week to get it fixed and up and running again. I really missed you all and missed all the banter and chats and posts. I have been reading some of the posts and see that there are some new members. Welcome to all. I hope that you all will enjoy this site and hope that you will continue to join us frequently. I am doing alright. The house sure seems so empty and lonely for all of us. we seem to have all of this time on our hands and we just do not know what to do with ourselves. I am sure that over time we will learn a new normal. It is good that I am back to work and that seems to help with keeping my mind busy and off of my grief. I am doing my best to help my children cope and that is a big job as well. They are doing okay, but, they miss their dad horribly too. Anyway, I am back, and hope to catch up on all of the news. Happy belated Birthday Al. Hope you had a good one. Take care everyone and I will talk to you all soon. Love and Hugs to all.....

Stay Strong,

hi carol! it's so nice to hear from you! i'm glad that you find some comfort in your work!

OK guys for those of you that were in a hurry and didn't follow the post in its entirety.June is awareness month. June 21 is the day we are supposed to do special things. I added on to the list that you could wish me a happy birthday. The birthday is the 21st of June. Thanks for your kind sentiments but I hope to be here to recieve them on June 21.
Carol - so good to hear from you. We were wondering if you were buried under the last snow storm! Has it all melted? Are you going to be able to start your gardening soon? We have tulips and our cherry tree is blossoming (we planted a young one last year). The grass is in desperate need of cutting but it keeps on raining! I guess that's spring for you.

Hello to everyone else. I have been so busy at work lately (we had an out of town conference part of last week) it's been hard to keep up with the reading and posting.

Theresa - glad to see your post on another thread. I was thinking the other day that I didn't think I'd come across anything from you for awhile. How is the new job?

Kim - how are you doing? Are you staying in good spirits? How are things with your husband? I hope that they have smoothed out.

It seems we have lost some members....what happened to all the people that were posting through the winter? Maybe they are out planting in their gardens! Have a good weekend everyone, Melissa
Hi Melissa and Kim,

How are you both doing? Hope all is well with your families and your lifes. I have been reading the posts that have occured over the past few weeks, and I must say there has been some interesting reads. However, I think that some have forgot that the purpose of this forum is support. We are are in this als thing together. I know that there will always be controversy over medications, herbs, supplements, treatments, and overall well being. We have to remember that what works for one person does not work for another. We tried so many things to sustain Henry, and for the most part, I think that some of them extended his life. Yes, you can spend a lot of money on these remedies, and for the most part some of them are money grabs. And yes, some people to prey on the sick and weak, and als is one of the most high adversity ailments on earth. So, one has to do what is best for themselves. I do however think that diet, excerise, and well being of mind are still the most powerful medicines with als. I have lived it, lived it for 7 years, so I have seen the power of the things that do not cost any money and can help you out for many years. I think that als makes one very creative in self treatment. So, all the garble over doctors in China and world wide really do not hold much credibilty with me. Henry reasearched them all too, and was very schooled with them all. His conclusion? Do not give up hope, but be very wary of witch doctors, there are so many out there. There are also so many people with such negative attitudes twards als. We all know the outcome with this thing and it is not nice. However, your qualaity of life is what you make of it. It is very simple math. Measure your gains by how much you are loved and how much you love back. Your strength comes from knowledge and keeping yourself informed of all the things that are happening to yourself and in the world of medicine. Will we see a cure in our lifetime? It would be nice, but I do not hold out such hope as of now. For 7 years we prayed and hoped that something would happen to help victims of this awful als thing. Most of all bickering over such trivial things such as different treatments and self help methods is awful, because if you do not actively search these things out, you may as well give up. I hope none of you feel that way. We have to be here to support one another, that is what is most important. Some of us, such as Henry and I, have come to the end of our battle, but that does not mean that I will not lay down and let this als thing get the best of me. I hope to continue to offer my support, advice, and love and friendship to all of you who want or need it. I really stand back and shake my head to all of the medical bullshit anymore, why? because there is nothing positive or new that anyone can say to sway me to believe that there is a big margin for hope. I do not mean that in a negative way, but I have read and heard it all before, so, it is really all old news. I still read with interest and delight in some of the new information that comes out, but really think that they are still at a very big loss still as to the ways and means and cure for als. Until I see "Cure Found for ALS" in the headings of every newspaper world wide will I believe. And I hope that day comes soon. Anyway guys, just me venting and I hope that everyone is well and looking forward to some nice weather soon. I hope really soon ! I am tired of all the snow and dismal weather. Kim, talk to me. I miss ya. Melissa, hope you and Nathan are doing okay. TBear, how are you doing? Al and Lee, as always, love ya. Chris and Mike you guys are awesome. Elaine, Theresa, Deb, Jane. Hi..... Fisher, where the heck are you? Pkease let us know how you are. Hi to all and hope you all have a great weekend.

Stay Strong.

Love, Carol
Hi. I have been reading the postings when I can, I had to get a new computer after the other one fried, so I hear you Carol, and have been busy juggling family problems and a job which is driving me insane lately while trying to figure out a way to keep our heads above water and begin to form a game plan to find another job. At age 47, not an easy task. Melissa, the one I applied to would have been mine, but they had no training systems in place. I wasn't impressed. However, I try to hold on to the outlook, it wasn't meant to be. I have also been trying to help with our walk coming up. Most nights lately I hibernate with a book in hand, I find it helps. Been trying to sort out some personal battles and debate how I found myself where I am. So I guess partly there are days I want to distance myself from ALS and pretend it hasn't screwed up my life, the active ingredient within myself which lead me to a place I should not have gone, and there are other days I wonder if the ultimate plan for me was to be exposed to this, with a different shadow and path predetermined.

I hope that paragraph doesn't sound selfish, when I know what many of the members of this forum are directly dealing with. It isn't meant to in the least, just some well overdue venting and some soul searching.

There has been a great deal of debate recently over treatment for ALS on the forum. I agree with you Carol 100 per cent. My friend, or was, was health aware, watched diet, exercised to stay healthy.When I was talking to a girlfriend on the phone this week as I filled her in about the Walk and the enormous amount of work everyone has put into this, specifically Lee, Al and Allison who have left no stone unturned, she asked me one simple question. Do they know what causes it? I gave her a run down of some of our commentary such as chemical exposures, but really there was no particular trend as in many diseases. When you reflect on that remark, the answer is easy; once you find the triggers, you will either find a cure, or a way to slow down the progession. The solution is not rocket science, but discovering the root cause, or a portion of, is rocket science. We need to make awareness front and center.

We haven't heard from Kim in awhile, I hope all is working out.

Melissa, still, I wonder about Nathan, what the heck really is wrong with him? Why can they not diagnosis this after all this time? I am sure I have missed some posts in this, but has he ever been to the London Hospital for assessement?

To the rest I have missed out, Jane, it has been a difficult road for you, I have a brother who is ill and wonder how I will cope, Debbie, we wait with results of your trials. Carol, you remain an inspiration to all. T-Bear must be flying around, or enjoying a glass of wine with the Professor...Elaine, hope to see you at the walk..
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