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  • Got out yesterday!! Two weeks is a long time. Feeling stronger, but i think, honestly, these episodes do nothing to slow things down. ... Got my purple PWC today. Tiring. Took 4 hours to tweak etc. more comfy than i thought. Turns on itself and the elevate feature allows me to eat at our breakfast bar! I just need to practice driving! Maybe I will get a trucker sticker " how's my driving?". Hope you are well and enjoying leftovers. ( my favorites!)
    I thought I would drop by your message board and let you know how much I appreciate your friendship here, and the humorous comments that you make. It is obvious that you have not let this difficult trip make you bitter, and that you are allowing it to hone you into a strong, supportive person. I know that God is looking down on you and saying "well done good and faithful servant, I am well pleased with you." I know that you are brightening your husbands life, but you are doing the same for many many more. Thank you.
    Barbie I have a question. Our home health nurse doesn't know and I am waiting for the doctor to call me back. In the past 2 days, my husband's arms and chest appear to be swollen. His arms look hugh and fat. Could this be a result of CO2 because of his breathing?
    Barbie, thank you so much for posting to me. I haven't quite figured out how to post in ANY section. but I do browse and get awesome ideas that help us out. Everyday is different for us and I think I am coping pretty well. We have great support in friends, neighbors and our church family. Thank you. P
    Thanks Barbie. I guess my Happy Birthday is current now.
    Say a little prayer for us.
    Just got home from the hospital and he is doing pretty good. They closed his leg on Friday and it is looking good for now. Shoulder surgery on Tuesday. He has such a good attitude but I know he will go through several emotions but he will be okay. We know we are lucky as it could have been worse. He has lots of support. I'm starting to make the visits a little shorter for Jim. It tires him out but he wanted to be there. Thank you for checking on us.
    Happy birthday to your husband, and an extra early Happy Birthday to you. I wanted to send you a separate one, but I have to take Tim to Seattle tonight.
    I have been reading your posts and we have a lot in common...people don't have a clue how this disease effects everyone in the family and how hard and demanding it is.... I am near my breaking kids have seen me lose it and yell at my husband...then I feel guilty... I can't win no matter what I do.
    You are a very strong woman for speaking up against the vent. Trust me - it is a living hell! I would never encourage someone to be vented. I feel like I am trapped along with him in this nightmare. Thanks for listening.
    One more thing. You said your husband is demanding. My once easy going husband is now easily agitated, impatient and demanding. Is that part of ALS?
    When you are vented, everything takes on new dynamics. My CNA (from an agency) is not allowed to touch the vent. She comes 3 days a week for 2 hrs to help me get him in the chair and bath him. You have to hire a RN or LPN to be here with him. $36.50 an hour is the cheapest I can find. Our sons 40 & 33 are terrified of the vent. So no help there. My sister lives 2 doors down and works 2 part time jobs is able to come over in the morn,aft and nights to help pull him up in the bed. Sometimes I feel like screaming. It is heartbreaking sitting here 24-7 watching this man I love so much die a little each day. Thank your lucky stars you still work. As hard as it must be on you, you do get a little break, that is well deserved. Thanks for listening.
    Barbie, you are a very busy woman with so many on line friends. No wonder we turn to you. You have been on this journey for a long time. My husbands breathing was down to 50%. Both the drs at the Mayo and our local ALS clinic suggested we consider the vent. I was not for it but he told me he wanted a couple of more years to live. I would never tell him how I felt. That's when things changed. His once bright outlook and positive spirit has been replaced with sadness. When I gathered enough courage, I asked him if he had to do it all over again would he. He responded "NO".
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