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  • Yeah Nancy! Glad you were able to get in this week! If you have a friend that can go with you both it is a good idea-just for another set of ears. Best of luck and keep us posted. Saying a prayer that it goes as well as you need it to :) Steph
    Yay Nancy! So glad to hear that you got an appt for this week! Hopefully you will get some helpful direction, just make sure you write down everything that you want to ask about - I always forget if I don't have it written down. Don't let anyone intimidate you - voice all of your concerns! I will be thinking of you all day on Thursday and want to hear about it. :)
    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
    Hi Nancy, In case it didnt come thru in my message yesterday, I'm here for you. I have been on these pages daily also because the people here can help provide such compassion and support in these difficult times. Just do your best...that is all you can do an dit will be okay. If you have any resosurces you can tap, people,church, etc use them. What I have been learning lately is that as caregivers, we need more of a break than we could ever imagine or admit. Thought,prayers, and hugs, Steph
    Nancy - I'm so sorry things are so rough for you right now. I know what you mean about being frightened, I always wonder if my mom's going to choke on her water or saliva when I'm with her, and then I get so damn mad and disgusted that this is what she has to deal with at 87 years of age. I'm taking my mom to see her gastro tomorrow, its been over a year and a half since her peg tube has been in, and while we haven't had any problems (thank heavens), it is getting kinda yucky and I would like to have the valve replaced. I'm hoping he can do that pretty easily, cause I certainly don't think she can go under anesthesia (sp?) at this point. She is still pretty mobile, and I am certainly thankful for that, but going anywhere with her is like being with an adult 5 year old who can no longer speak and is getting more and more confused. Sigh, I am just so tired... Be as strong as you can Nancy, that will have to be enough.
    Hi Nancy, I think we are in pretty similar places. My husband is still mobile but his breathing is still declining . His FVC is less than 30% now. Dont know where exactly but we both know its gotten significantly worse. When we get back from.this trip, he will have to see the pulmonologist in the first couple of days. Not sure what they will do since last time they said nothing could be done since he didnt want to be vented or trached. He doesnt go to clinic til 8/11. Try to hang in there and take one day at a time. At 46 with a special needs child I am in a different place but we all struggle in our own ways. Do your best and know you have always done your best for your husband. Rest easy with that knowledge. Its not perfect but the best you can do in an imperfect situation. Hugs and prayers, stephanie
    Hey Nancy - just checking in to see how you are holding up. That sounds dumb - just wondering how you are doing. Touch base with me if you can my pgh friend :) thinking of you
    Hi Nancy, I hope you are doing okay. Havent seen you on in a bit and have been thinking about you. Take care. Stephanie
    Hi nancy! Sorry it's been so long - we had the end of middle school and now adjusting to my son being home every day and sleeping past noon! I guess the good thing is he is just waking up when I am coming home from my mom's house. Not much has changed with my mom - still strong as an ox - just getting more and more confused. How are things with your husband, and you? I haven't posted in so long I think I forgot how to private message! Let me know how you are doing. You are always in my thoughts. Trina
    Hi Nancy, I do like getting messages also and reading others comments on this site. People here get it. They know my reality. Unfortunately people not living this reality just dont understand my life. Friends will ask me to go do something and I cant. I try to explain but they just think I am not interested. It happens so.fast. I am 46 years old and wonder what life is going to be like . I think I will be building a new one with my son when this is all over. I am not bitter. My husband and I have been married 25 years and I am not quite sure what I will do with out him. Its just hard to have your world so small. Steph
    Nancy I know what you mean, I too am very sensitive, and I do enjoy getting messages as well. I try every once and a while to email my friends on this forum as I believe the isolating quality of this disease affects many. I am feeling better now, but my muscles are sore like I had a very hard workout and they are stiff. I can't imagine dealing with this disease in my 60's, I am 54 and a very strong woman, but I am working at the edge of my strength limit. I have been a nurse for 33 years so have learned a thing or two about lifting and turning. Please be very careful, because if you get hurt you will both need to be hospitalized. I don't seem to be able to keep my posts below 1000 characters so they are always 2 parters.
    Paulette
    We do not get help from Tim's kids either, but thankfully my son's have no qualms about digging in and helping. 1 being a paramedic and the other had spent a lot of time in the hospital as a patient. I am so proud of both of them. While they were growing up we instilled in them that it is important to help others regularly, so we would often go to friends that had farms and help them, and also helped an elderly couple when they needed us. Once they are grown it is pretty hard to get them to understand.

    Paulette
    You can cry on my shoulder anytime, and you will get through this, what is your option? Like anything difficult in our life, we put our head down and take one more step, and repeat that over and over until one day we find ourselves on the finish line. I have a saying on my wall above my fire place,,,,,,,
    "I can do all things through Christ who strengthens me."
    Phil. 4:13
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