gooseberry
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  • Hi Steph..... YEP. I'm right beside you on the roller coaster. Didn't you feel me grab your hand a couple of times??? Just this minute dried my eyes from a weepy-feeling-helpless-and-overwhelmed spell.

    Haven't been on line much for last week or so - got an urge to check here and found your note.
    Thanks, Steph. OMG what a journey this is. I feel very over my head!
    Hi Steph,
    How is your husband doing with his peg ? My dad has limb onset and fortunately he is still able to eat most foods. But, steak is a absolute big No! No!. We went to a restaurant for a birthday and they overcooked his steak and he started choking. It scared the crap out of him and us. We were about to do the heimlich when the piece finally dislodged. I myself would get the peg before I would go through that. Hope he is adjusting well to it. Take care, Kim
    Thinking of you and your husband. Hoping his peg surgery goes well. Many of the Pals on here seem to do pretty well with theirs. If you have questions I'm sure they'd be glad to help you out. Hugs to you, Kim
    > I opened a Nikon L830. Just started messing around with it tonight a bit but I think it is going to be pretty nice. Early pics are really good. :) Steph

    sorry I missed this Steph! congrats on a new Nikon. only one rule: clear your card daily and catalog, even simply your shots :)

    Happy shooting!
    Oh, thanks Steph! I will contact ALSA.
    And I appreciate your support ... I enjoy reading the forum but there's nothing like a personal word of strength and friendship, such as yours to perk me up!
    I feel better - i'm very easy to please :)
    with a hug...
    PS - looks like i'm whining or feeling sorry for self but I'm not... I wouldn't trade my life for anyone else's - just plain old scared.
    : ))
    Steph... appreciate your thoughts. On my last posted question, several mentioned "EL"s .. will kick myself I'm sure but WHAT is it? Just not recognizing that abbreviation. Still so new. I agree it's a time for doing whatever we can but unfortunately my guy is pretty much disabled by the lack of air. His muscles are weak from lack of use but he still has full mobility - just no energy. None.

    Need more than courage now. Getting panicky about the future. Barely getting by now due to my own physicals challenges and 64 years of challenging life! There is nothing that I would not do for my wonderful T. but so many things I can't. Nancy
    Steph - thanks so much for all good thoughts sent our way. The Clinic was very good - it's a small but compassionate group. I've been exhausted since we left. I'll write very soon but am still working on sorting out some of the stuff we learned. In other words, I/we liked the people but not necessarily what they had to report/suggest/project.... ya' know???? argh. xo Nancy
    just posted this but wanted to be sure you saw it because of your answering my message...

    HALLELUJAH!
    With gratitude for all your encouragements ... I just got off the phone (after many wrong turns and frustrating calls to various places) and have an appt for my Pals on THIS THURSDAY at the ALS multidisciplinary CLINIC in Pittsburgh's Allegheny General Hospital. They had a cancellation!
    Will be reporting in soon with some REAL information. Breathing/appetite/energy continue to decline. But at this moment I'm H A P P Y to be professionals who know about the beast. Thanks again for your help.
    Love,
    Nancy
    Hello Stephanie,
    and thanks for remembering me and the note.
    I am here everyday but haven't posted but a few times - I'm terribly overwhelmed and frightened.
    How does a woman 64 with her own disabilities care for her darling husband of 77 years. His body is
    still strong - no loss of usage however his breathing has taken a hideous turn. Had to sit up to breathe other night on couch instead of bed. Cannot seem to get into a clinic but have an appt with a pulmonary specialist on 8/8 - week from Friday.
    I have been following your posts - you are terrific!
    My docs tell me that there are certain issues with cold in PMA (progressive muscular atrophy - a LM onset form of ALS). I started with that before it morphed into ALS...and yes, we had several cold winters and I could really feel the change...never been cold in my life, flip-flops in the snow type...until this.
    Goodness, Stephanie - that comment below was a sort of PS to a long message I wrote you. Somehow only those few words posted. Darn. Sorry - I'm not good at posting yet - and especially editing. Thank you for your heartfelt words and sharing some thoughts. I'm so excited to see a new posting! I feel very alone now.
    My world is quite small - mostly my husband! Been married a mere 22 years; he's 77 going on 17 and I am 64 going on 90. lol.... and he is/was the rabbit and I the turtle.

    Will write more later. It's nap time here already. T's endless supply of energy is lessened greatly.
    with a hug,
    Nancy
    oh - wanted to tell you good news/bad news:

    BAD: We do not have children.
    GOOD: We do not have children.

    Ciao for now!
    Hi !! I am honored to be your first two posts. I am new here also and it's overwhelming. Sounds like you have had excellent experiences with your doctors - can't imagine anything more important. Our first neuro was blunt - to put it nicely. Our second is great and we liked him until he had no reaction to Toby's breathing issues. I thank you again for your input - it means a great deal to me.

    This is a journey which I never could have imagined - and it has only just begun. I've never felt so alone in my life! ... but I do find a certain kind of comfort here as well as terrific info!

    Keep on keepin' on....

    Good meeting you!!
    Nancy
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