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  • 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
    Thank you tillie again I'm sorry for your loss and everything how long has he been gone now?
    Hello tillie first off I want to say thank you for your responses I'm grateful for that and also I'm very sorry for the loss of your husband. I seen in a post where you mentioned your husband making a hmmmm sound when breathing out kinda of like a humming noise? I make the exact same sound at night I've woke myself up its been so loud... I found that post by typing in the search bar at the top humming sound when breathing.My speech is also getting worse everyday I fear this may be bulbar onset..
    Hi, I just wanted to say goodbye while I still could. I saw that Max passed and I think deep down I always knew I'd go soon after. Been having lots of choking spells/ breathing problems lately. Even with the bipap, the hospice dr and nurses give me a few months at best. They know their jobs and can tell. We talked today about how to do it, I take off the mask, they give me morphine to make me sleep. That's the last I'll know.
    Sure hope there's something after.
    You've been so wonderful, you, Mike, skipper and the others. Please say goodbye for me, and take care of my tree.
    I've asked my wife to post in the memorial section when it's time.
    Thank you again for everything. You guys make a dismal life a little less so.
    I hope all you CALS find healing with tine.

    Best always,

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