Beach Bum
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  • Hello Ken, im pretty new around here myself, so you might leave a message for joelc about how many posts you have to do before you can send private messages. Im not sure how many. But once you have met that number, then you go to the person's visitor page by clicking on their avatar/name. When you get to their page, then click on the blue tab that says "contact info" and you should find several options of sending messages, one of them being private message".
    Hey, pals, if i got this wrong, give ken a hnad will ya?
    God bless!
    I have just joined today also. I feel better already. I have spent so many months feeling so alone that just knowing I have a link to others is a vast improvement! My husband and I are fighters also! We have never had to fight anything like Bulbar ALS, though. Thankfully, my son, who is grown, has moved to our area to help out. It gives me alot of peace of mind and a little extra strength
    Hi Ken, I had not read your previous posts when I last wrote. I am so sorry that you lost your wife such a short time ago. I am still trying to learn how to navagate this site so I miss things I think..there is so much to read. I do know once you are on this site it is hard to let go and you get attached to people you only know by a name. My heart goes out to you, and as you go on with your life, know others are here for you. Phyllis
    Im very sorry about your wife and your diagnosis. Im glad you have found this place, as we can help support you. Thanks for sharing some of your story with me.
    Hello Beach Bum Ken! Howdy, just wanted to welcome you to the Forum. Yes, we August buddies have to stick together. Kirk got diagnosed in August too. Tomorrow, when i'm rested up a bit I wil send you a private message to get to know each other better. I'm sending you a "befriend" notice. Do you know about that? Lots of cool stuff to use on the forum.
    Your loving sister,
    Hi Beach Bum. I saw your last post on "to vent or not to vent"... I wanted to send you a private message, but that doesnt seem to be working. I just wanted to offer my support to you. I wasnt sure what your post meant, and im sorry for asking like this- but has your wife passed away?
    Hi Phyllis,my voice began to be horse and raspy March of 2010.Was sent to a throat Dr and he said Parkins Disease,he sent me to a Neuro Dr,he did the EMG and a lot of other stuff.Told me Mid Aug,ALS and I was at Duke Univ for a confirm this week.My slurring began in May,my problem is in my throat,tongue,swallow.I feel strong and Duke agreed with that.My moms name was Phyllis,Yes,lets stay in touch,we are on the same boat,Im 67 feel so bad for people in there 30s or 40s Hugs ken
    Hi Ken, I see you were just diagnosised too, but that you have lost most of your voice. When did you first have symptoms? My husband started slurring in Jan and was just diagnosised with bulbar onset. You'r from SC, we are from SD. If you like we can keep in touch, I wish my husband would visit this site or at least talk about it. He seems not to want to know anything about ALS at this point. Good luck. Phyllis
    Myrtle Beach SC
    I was wondering how many, if any have ALS in this area,I have been to support group meetings by Lynn Negley and they are great,not to mention the lunch the church girls make and serve for us.The problem is last visit only two people with ALS were there,there were 4 or 5 widows of ALS.Can this site help me find ALS people,if they need a ride and can get into a car,I would be happy to take them? Thanks Ken
    Good luck, You posted this on your visitor page. To start a new thread, go to "" on the top left in blue, then go to "visit the forums" then to a forum such as " general discussion" then in the top left you will see "new thread" If you have any more questions, click on my name "sadiemae" and write on my visitor page.
    Head to Duke Univ tomorrow for testing an a confirm of Bulbar ALS,from what I have read Im sure I have it.
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