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Carol Deboer

Distinguished member
May 7, 2003
Hi there! We have been living with this "als thing" for over 5 years now. My husband Henry was diagnosed in l998. It has been a real learning experience, and we have had to modify and modify as the days, weeks, and months, and now years have passed. I feel like I am an old pro at it. It has been no journey, as a lot of people like to title their ailment. I don't even know where that term journey comes from when you are dealing with such adversity. It blows my mind somewhat, because to me a journey is something totally opposite. Oh well, that was just my thoughts. I would love to converse with anyone in the same situation as us, I'm sure we have lots of things that we could discuss and share. Hoping to hear from someone soon. My thoughts and prayers are with us all as we battle this "als thing", good night everyone!

Carol Deboer
hello carol & Henry

My husband also has ALS and has had it for 7 years now. He is doing fairly well although he no longer can use his legs or arms. He has some movement in his fingers but is unable to hold anything.

I find the nights to be the hardest as he can no longer turn over in bed, so every hour to two hours he has to call me to turn him. Thankfully we have home care come in 2 nights a week just to give me a break and a good nights sleep.

Well that is all for now, just thought I'd drop a few lines
take care
Laura and Doug Mulroy
Carol, I can't realize all that caregivers go through, sorry

Carol, Prayers are in many more hearts than just mine, for you, Henry and your children, several times every twentyfour hours. I have way over hundreds, praying for you, Henry and your children, thank God. I believe you are very loving and brave.
Your advice on my different emotions, my family's, and my family's of origin, have helped me tremendously. Now, my mind gets bogged down worrying about others things, more than I worry about ALS. I have to stop that because it makes me disfunctional. I go out of my home, when I have no other choice.

I send you all hugs and love from my heart, more than once a day, lol . I hope the lol is ok.

God guide us all to the end of this world.
NF, Canada
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