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  • Hello Tillie,

    I notice that you are great on this forum. I have read several of your comments and I notice that you truly care about people. I realize that having to answer the same questions over and over can also be frustrating and I want to apologize ahead of time if I offended you in anyway. A couple of months ago, I googled some of my symptoms and ALS popped out. I did my best and stayed away and kept from posting until now. I am really scared, I have to young kids and the thought of me being sick scares me beyond reason. I can't sleep, I am constantly thinking about the worst case scenarios and I feel sad 24/7. I just posted my second thread and this time I was more brief, but yet more detailed. Can you please give me your honest opinion on what I posted. Again thank you so so much! You don't know how much this means to me. Thank you!
    It was very comforting to check in after several months and find that you and several others are still sharing your wisdom and love with everyone. I find coming back here makes it all so real for me again, and it's almost unbearable. I want to reach out to some others that are in Pgh., so I will try to 'get over it' and get on with things. You are truly an inspiration.... Trina
    Hi my name is Jim. I understand you are very knowledgable in Bulbar could you please be kind and read and give your thoughts. Its affecting my family life and looking for some knowledge. If you please read and i hope you do. My throat almost feels vibrating... tongue heavy and 3-4 slurs... very heaviness in speaking body wide twitches(no weakness) back in the last 10 months..sorry to bother you in advance
    Hi Tillie - you've helped me in the past and I'm reaching out again. That humming sound is now back and strong whenever I lay on couch and drift in and out of sleep. I'll wake up with breathing issue and the humming begins. My hands are so weak and my legs so painful. I continue to slur as well. Any insight is helpful.
    In my last message to you which looks like you never received I did say that all the problems I am having right now are FTD related and there are not many folk here that know about FTD, being a primarily MND forum.

    It is hard, I am upset most of the time (internally) I xcan see Julie going down hill so fast now even I cannot keep up. She has started to wander at night (maybe 20 times a night) so I am not getting much sleep. I don't want to sleep on my rest-bite days as I need a life without Julie for these breaks... I am in a catch 22 situation.

    Thank you for looking out for me....

    Dave X
    I Sent you this message via PM... Did you get it. I know that this message is public but I don't want you to think I am not trying to reply to you.

    Hi Tillie...

    Did you not get my reply to you last PM?. I am sure I did send it a few hours after reading it but there is nothing in my 'sent' folder. I did a clear out of all my in and sent folders though, I don't suppose if I delete everything before something is read it deletes the messages not read too, does it?

    Today Julie is at her day centre so I have a bit of a rest, last Monday (just gone) was a public holiday so there was no day centre which was a bit of a bummer.

    Yes I am truly down right now, Julie does not know, I just find it too much to keep posting as there is so much happening here that it would be impossible to write it all down, I simply do not have the time.
    Hi Tillie.

    It appears I am unable to send PM's. I replied to your last one last week and I dont think you got it, I have just sent one to you now but nothing is in my sent folder. I am receiving your PM's though

    Dave X
    Hello tillie I saw where you said you know bulbar very well have you read my thread? Could I have bulbar onset?
    Hi tille my ni know ame is johnskip I'm sorry about your husband and I know you know alot about bulbar my story is a long crazy one but it's happening to me I'm a shell of my former self I started with bad fatigue then weightloss metabolism messed up now tongue atrophy it seems everyday it's moving quick what's next if it is als i know i cant diagnose myself been throughout the medical field and there is not much left
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