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  • No chewing, swallowing, gagging problems.
    Does have persistent dry cough.
    Just NO appetite and it's shrinking as each day goes by without much food. Aim for 5 Boost Pluses for even that is becoming a struggle for him. Says I feel full already.....

    Damn this disease!
    Nancy
    Trina, hello buddy.

    Thanks so much for all the support 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 ...

    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
    Thanks so much. It's been a long hard journey. I'm keeping him pretty much drugged up with the bed sore. Praying that God will call Him home in the near future. Such a wonderful, caring and sweet man. This is heartbreaking.

    Debbie
    Hello Trina!
    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 though extremely fatigued - 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!
    TRINA!! I just set lengthy PM but think I messed up. Was my first so wasn't confident of process. Would you kindly just post an "I got it" on my page before I try reconstructing it? DARN..... probably too tired to do it again now. Shucks.
    An angel sent you... Today has been especially awful. I've been trying NOT to focus on ALS but not coming here has caused more stress than it cured. I am in awe of my overwhelming desire to come back here - and find your note.
    Trina, You are wonderful.
    Our next appointment is August with 2nd neurologist which I like better than first. His final words last visit were "I cannot at this time diagnose ALS but rather some form of motor neuron disease because you have no upper neuron involvement.
    Soooo, we are in a holding pattern which I consider a blessing - never before experienced fatigue, trying not to lose more weight, dealing with unexpected retirement, whether to sell house and mainly me not being so depressed (something I tend toward anyway).
    I could write a book so I'll just say ciao for now...
    thank you AGAIN...
    Nancy
    Hi Trina,

    Thanks for your kind words. Things haven't been too bad so far... my dad is mainly just struggling with keeping his attitude positive. It is a very horrible disease and it definitely is unique in how it affects families. I hope your mother is doing well also. I highly recommend looking into the Walk to Defeat ALS in Point State Park hosted by ALSA WPA if you haven't already!

    Ken
    was rereading one of your messages about Pittsburgh als clinics. You mentioned Dr. Lacomis - he has been recommended by several people... but I'm just not sure what he could do for us at this point. My husbands neuro was picked at random by me - and turned out he is the Director of the other big als clininc in Pittsburgh - at Allegheny General (divine guidance there, I believe). It hasn't even been a month yet and I feel I've aged about 10 years. Sending warm thoughts ... Nancy
    Hello TGB1 - My name is Nancy and I'm brand new here. My husband was diagnosed recently and my head is still spinning. Have been reading lots of posts and saw, I believe, that you are a Pittsburgh PA person. Is that correct? I am in Beaver County PA now but lived in Pittsburgh for many years.

    If you have time for a new friend or just to exchange a few words with a 'neighbor' - I'd be ever so grateful. Feeling so lost ... and alone here.
    Thanks a bunch - whatever :))
    I can't figure that out! Typically you can edit via user control panel... In any case, I asked David if he would get it done for you. Please keep an eye - if not changed in a week - remind me again and i will follow up. Hope you are as well as can be!
    Thank you Trina!

    It's very difficult... Mom and I always had the best mom-daughter relationship.. Even when I left home to study about 6 y ago we would still talk on the phone every single day.. I remember when life was happy and we would do amazing things together... We had so much planned then we find out about the disease...
    I left my job, house and partner on hold, on the other side of the world (literally)...
    I just wish there was a cure or maybe if it wasn't that aggressive and heartbreaking...
    My mom is the most loving and caring person... I just wish I could help her :(

    X
    Just want to wish you a merry Christmas and happy new year...You are an inspiration to me and so many here!
    Hi Trina, thank you for asking! The appointment went ok, It is MLS, we are now waiting for the ok to go to UCI to meet with the specialists there. Thank God it is only 15-20 minute drive from my home. My dad keeps saying he feels great and he doesn't need to waste everyones time at the doctors offices. I keep having to remind him that he is sick and we are just trying to help him. He feels embarrassed that I have to tag along I think. He also truly believes that he has a tad bit of nerve damage but other than that he is ok, which maybe is a good thing? They are visiting family in Florida right now, so they are having a great time, mom says he is doing well and having a blast. The trip in my opinion is a good one for my mom to get her head clear and get her from worrying about him everyday by herself. I will keep you updated THANKYOU FOR ASKING! :) XO
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