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  • Hi Janie, my name is sissy, just came across your post, wanted to say hi and hope everything is going ok for you. My mom has family in rock hill, I will have to get their names, I was there once but forget their names. Never know, you may know them, lol. Anyway hope all is well, looking forward to an update, our dr. Has mentioned a peg, so I have just been reading what others think of them before the time comes. (If it does, my pals is not to keen on the idea) take care!
    Hi Gerri,
    They called this morning and are admiting me into the hospital and a radiologist is performing the surgery, they are suppost to call later today and let me know when, I think it will be soon, thank you so much for your prayers. HUGS
    Hi Janie- so wonderful that your special trip to Dallas! Glad the weather was perfect for you. Happy belated birthday! An experienced surgeon should be able to insert your peg. I will pray for you and your surgeon as well as the anesthesia provider. I know it will go smoothly. Please keep me updated. You are in my thoughts and prayers. Thank you for keeping me in yours. Hugs
    Hi Janie how are you doing? I am spending the winter in texas near my parents and daughter. The warm weather has been wonderful! I am back in Michigan for my u of m ALS clinic visit jan8. I am already stressed out that they will find more deterioration. I never used to dread doctor visits. I lost eight pounds since the last visit. I am dreading their possible of a peg tube. I will be glad when this week is over so I can return to my new normal life! Hugs
    Hi Janie - Goose Creek is 20 miles north of Charleston. I didn't know there was someone else with ALS living here. I use to go to the local ALS group but no longer do that. Joe went once and was so upset at seeing ALS patients, who at the time were worse off them him. I think it was a reality check, he never went back. He is bedridden and doesn't want to go anywhere. If your Mom can remember their names I would like to know. Keep in touch and have a wonderful blessed Christmas! Debbie
    Hi Gerri,
    I think a trigoly machine is similar to bi-pap, still haven't gotten it, I was approved for disability but it won't start until April, I also get medcaid but they don't want to approve my doctor who is just across the state line in Charlotte, I have been told that I can get a waiver for my condition, I am not switching dr at this time and moving me to a clinic in SC would make me travel for hours, I will be glad when the paperwork is over and I can relax, I look forward to the cough assist, I just can't cough sometimes, Im scared of a cold. Tomorrow is my 53rd bday, the family is acting weird, I hope they don't make a big deal, they never did in the past. A speach device is something I will eventually need, talking wears me out. Have a good weekend
    Hi Janie, nice to hear from you! The paperwork required to get disability in a full time job at first. Apply for social security disability now too. They move it through quickly but there is a waiting period. I was fortunate to have good disability insurances. Keep speaking as long as you can. U of M ordered me a Pro Slate 10 speech device. it is pretty handy but the iphone text to speech is handy too. Thank God for technology!! What is a triology machine? I am getting used to using the cough assist. It helps to clear the phlegm from my throat. The botox has really helped to decrease my saliva. Highly recommend it. Keep me posted. Hugs
    Hi Janie. I have progressive bulbar palsy. After right upper back right molar crown dental work dec2011 noticed speech slurring. By June 2013 I stopped speaking because speech unintelligible and iPhone and iPad much easier and faster to communicate with. I am a nurse anesthetist but have been on long term disability since you need to be communicate and be understood to do anesthesia. I use chopsticks to eat with as I can control placement of food. I have difficulty swallowing thin room temp liquids and do best with cold thick liquids. I feel blessed to have no other symptoms besides my speech, eating, and swallowing difficulties. I recently got a cough assist device as my cough reflex was decreased. I had Botox injected in my salivary glands last week and it is working great. My official diagnosis came in july2013 although they suspected it since sept 2012. Sorry that you are having to go through this too. It is the challenge of my life! Let me know how you are doing. Hugs
    Hi Janie,
    I never really introduced myself. My name is Kim and I'm 47. I have three children. Our twins (boy/girl) will turn 16 in November and then our youngest son will turn 10 in November. My husband and I are in the process of getting a divorce after 20 years of marriage. Would love for him to change his mind though. I have worked as a switchboard operator at our local hospital for the last 24 years. My dad is 78 and was diagnosed with ALS a year ago as of May. Take care and feel free to drop me a line anytime. Also, we have a Come To Tea thread that you can join. Feel free to chime in. We talk about things other then ALS. Kim
    H Janie H,

    I can't believe that nobody has welcomed you to the club yet. So, welcome, and sorry you're here. Whether you are diagnosed yet or not, we understand where you are in the process. We've all been through it too.

    This is the right place to be, lots of helpful people here, all of us on the same journey. Some are just a little further up the path than others. It takes a fellow PALS/CALS to understand, so......share anything you want.

    Hang tough,
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