Reaction score

Profile posts Latest activity Postings About

  • His lung capacity is at 25% and breathing is very difficult even with the bipap. He can barely talk, when he talks it seems as if he is using
    mostly his vocal chords and is unable to move his mouth much to help with making his words more understandable. I think the fact that
    it is so hard for him to talk and the fact that he sounds odd when talking is his main reason for wanting to keep conversations short.
    I'm sure those choices are his but they are things I just need to hear for myself. I know how helpless he is and at other's mercy, I just wish
    t was me or my mom there. My mother will be heading out there in August to stay for a few months, we both pray that he can at least make
    it till then. I know I'll never have to worry about whether I am getting the truth with her there :)
    I'm sorry I didn't respond to this, didn't notice I had a message :)

    My brother's wife is upset that I want to confirm his choices with him but I figure if she can't understand than 'oh well'

    I talked to my brother on Skype for the first time yesterday, first time I've seen his face since March. It wasn't the best of times for
    him to talk but he knew I wanted to talk so he had Kim hook up his laptop and put the skype program on. I figured since it was the
    first time I've seen his face in 3 months and the fact he wasn't feeling well and I know his wife is upset at me I figured the questions
    can wait till next time. We just had a quick chat.
    Hi Cate my name is Karen this is my first day on the forum and as im starting out im hoping to make some new friends :) i live in Australia and have 2 beautiful grown up kids ... ive had MND (ALS) for 3 yrs now and was so excited to find this site where i could link up with people who could only understand what our lives are like ... i hope that we can become friends and share parts of our journey oh and the laughs along the way too ... talk soon i hope :) karen
    Hi Cate! How are you doing? You won't catch me chatting on fb-- I never open chat online-- but no worries, I never talk about forum stuff at all on fb..... I like to keep things separate and private too. It's just too hard thinking about who could be reading what.... lol!

    How is the website for kids coming along that Kinga started? I hope everything goes well for your kids in that regard. I don't have that situation going on for me but other stuff instead. I'd want a stiff martini to even want to talk about it.... haha!

    Things are going pretty well here. I've never been able to ever get a hold of the ALS Assoc in our area, which is a shame. Stu was saying that his Angels have had problems too. I guess they're understaffed like everyone else!

    *hugs* Laurie
    Dear Cate,
    Thank you so much for checking up on me :) I've just been overcome with gardening madness (as my family puts it) all of the flowers I ordered online during the winter snowstorms are arriving. By time I'm inside, I'm too pooped to pop. I hope you have a wonderful day toda, (hugs!)
    Oh Cate, thanks for the weather update! I am so so glad the weather is good for her and her kids! She flies back here tomorrow. I am going to just drop her a call on thursday to see how her trip went and let her know I am there if she needs anything. You are so sweet for caring too! ...Hugs, Kari
    Sometimes blessings come in good weather!!!!!! Oh I am so so happy that its nice there! Thanks again for everything!!............Hugs, Kari
    Hi Cate, thanks again for your wonderful offer. If you look back on my thread under the stories section, you can see what I ended up doing for her and her children. I checked the weather for your area, please tell me it is not true that it is all rain and thunder and lightning!!! She is there until the 14th. I hope God opens up the skies and gives her a break!!! You are a sweetheart for offering to help!..Hugs, Kari
    Hello Cate
    Thanks for responding to me last month. I got an idea from someone else to write a letter to my exhusband and tell him the positive things about my memories. It was so hard to do and came out to be 5 pages long. I feel a lot better, but may not send it. I truly didn't think I'd find someone in a situation similar to mine. Hope your day is going well.
    Hi Cate, I tried posting a response to your thread, but I dont think the moderators allowed it. I think I know the place in Naples that you are talking about. I saw the videos on what they say they do for things like Parkensens. First it showed them not being able to walk well, then had the injections and then were walking fine. I dont think it really goes like that. I am all for the glutathione injections though. JoelC here has had really really good results with them. The heads of this forum are to skeptical about it all, so you would need to message Joel to get the answers you want. Good luck, and if you do try it, please let me know how it goes! I wish my dad would have tried it a long time ago. I dont know what he is waiting for. Hugs, Kari
    Howdy neighbor! Thanks for checking on me. We are doing okay.... still working the SSDI/Medicare maze. Man, it's complicated.

    And I've trying to reach my local ALS Association Chapter with no luck! Have you been able to get a hold of them? You have the same regional patient care coordinator as I do. She's right now on maternity leave. So I just keep trying, because I'm thinking he may need help with voice soon.

  • Loading…
  • Loading…
  • Loading…