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  • checking on you Linda! hoping you are ok. I am sure you are busy but looking forward to you checking in. You know we are a buncha worry warts around this place
    Hi Linda--glad to see you logged on recently. We miss you and are worried about you. hope everything is ok? sometimes we all need a break from the forum--it can be wonderful but sometimes overwhelming. check in next time you are on--worried.
    Linda? how is everything going? hows Barney holding up?

    stay strong! we love you
    Love the picture of the calf. I miss visiting my friend that I use to ride with, and help with her animals. I live in town but really enjoy being around animals. Although I do know how much work they are, and am not a morning person. How is Barney doing these days? Does he get into the barn often?
    >We are back from ALS Center. I got totally sucker punched!
    We have approximately one month!

    You have been very quiet, Linda. Is it OK?

    Greetings from Japan!
    Is this Linda??? I want to thank "Linda" for her comment re my inquiry into "ALS & Nausea" but I'm a bit slow on the draw when it comes to the computer. so --- my fingers are crossed...here'hoping you are Linda. Just wanted to say that I'm a firm believer in, better yet, subscriber to your remedy over rilutek...love. In fact, I tell my Japanese friends how their concern, their notes and photos are the best medicine for me! A thousand thanks. Jack in Japan.
    Just wanted to personally thank you for creating "Pity Party" thread. What a great place to go. Knowing I can share with other CALS and you all understand has been a true blessing for me. It's almost like a counseling session that you don't have to pay for. I have made so many friends on this forum and count you has one.
    Good Morning Paulette,
    Yes, we are seeing Dr. Calder.
    I would love to talk to you, however Barney gets very upset when I talk to anyone on the phone in regards to als or dementia, so I will keep this to emails for now.
    We have PROP coming tomorrow with the bipap machine.
    No, unfortunately our home is not wheelchair friendly at all. I am constantly trying to anticipate how and where we will put ramps, hospital beds and how I will make the bathroom more friendly to not only wheelchairs but lifts.
    Curved slate stairs and railing at the entrance, drop hot tub room (where we will put the hospital bed)
    , drop living room. Angled bathroom entrance and very small bathroom.
    Our bedroom is downstairs where the family bathroom is.
    Of course all of my worrying may be for not. Dr. Calder is thinking with bulbar als his hands, arms or his breathing will be next?
    Thanks for being here Paulette!
    Hello, and welcome to the forum. It sounds like you have seen Dr. Calder, and yes she is great. I would be happy to email you or call, if you give me your phone number, as I have an excellent long distance plan. Is your home wheelchair accessible? Tim was diagnosed 1-½ years ago, at 52 and is a partial quadriplegic now, but no problems with dementia. He does not have bulbar involvement, but has breathing compromise as his diaphragm is not working well. He uses a bipap at night and is able to use a sip & puff ventilator during the day. The sip & puff is not something that Dr. Calder, or our local RT was aware of, but my husband is an American Veteran so we have access to things not available in Canada. We are very mobile, and our home is very wheelchair friendly, as we just built it after Tim's diagnosis. If there is anything that we can help you with please feel free to ask.
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