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  • thanks Steve, can't quite find access to private messaging yet, and I went to the help files and when I clicked on a link in there to get to private messaging it said I don't have permission :( I may have to be patient, or see if I can find a way to contact an administrator but I'm a bit pressed for time just now. I will keep at it tho!
    thanks Steve, I've passed the magic 15 messages milestone, but haven't quite found the way to do a PM, maybe I need to have the person added as a friend first? I've sent you and a couple of others requests...
    hi Steve, I'm still getting my head around everyone and didn't realise that you are fairly new here, though now I see your join date. It is SO hard to get ones head around this beast. Whenever I kind of think I have, something else hits me about it all and I realise I haven't.
    Thanks again for your support so far, and I am looking forward to getting to know you and other amazing people here.
    Part 2 (I tried to talk on too long lol)

    I'm sitting at a girlfriends house, she is away and left a key for me to come and 'retreat' here as my PALS is at home all the time now and I am relishing just sitting here all on my own, though I do need to do some work soon, but I'm allowing myself to just veg out to a degree too.

    How are things going along for you at this time?
    thanks Steve
    I'm concerned to tell much detail here still, my PALS is a member, though not active, but I worry that he could read me posting things that might alarm or concern him, so for now I'm reading what others are saying and getting into the 'feel' of the support of this place.
    That way, I feel like I am getting to know some of you, sometimes just joining in on a discussion started by someone else and supporting them feels supportive to me as well. Or just being able to agree yeah I feel that way, or I appreciate the advice someone else gave here feels supportive too.
    And then, I get a message like you just sent and feel supported in such a lovely way by having something personal sent just to me!
    We will all get to know each other well through this great place of support, and I know that it is going to be one of my most important resources as time moves along.
    Thank you, my dad is pretty fit right now as well. His neuro says he has mild to moderate progression but I'm amazed at how much has changed in the 6 weeks we first heard the words "ALS"

    My dad's main complaint is the cost, he spent $125 for about 3 weeks worth but my father in law is getting us some prices from a supplement company he uses and see how cheap we can get them (he was a professional wrestler and takes 100 pills a day and spends $85)

    I wonder if you can sprinkle the powders in your wife's food? Right now my dad is eating fine but I know at some point we will be crushing pills for him.

    Prayers for you and your wife.
    Hi Steve, thank you so much for that warm welcome, everything you said is so true, but the way you said it truly touched me and I'm so appreciative to know that support like this exists, and that in some way I will find my way to be able to support back even though I kind of feel like I'm going to be more leaning to start with. But really it becomes easier to support others as one appreciates the support they are offered, so again thank you for the welcome and I do look forward to getting to know you :)
    Hi Steve,
    Thank you Steve for the birthday wishes. I'm going to be 47. Brian(My soon to be ex?) is taking me and the kids out to dinner for my birthday. I hope we go to Lonestar Steakhouse so I can have a steak. I may even have a margarita since it's my birthday. My dad is excited because he was fitted this week for his first power wheelchair and they said they'd deliver it in a couple days. He will be able to get outside easier and ride around the neighborhood. His caretaker will still keep a close eye on him. Hope you have a nice weekend. I'm off and hope it doesn't rain. I'd love to get out and get some sunshine. My dad has a nice swimming pool and we are waiting for it to warm up so the kids can go swimming. Going to see the fourth ballgame of the week tonite. Take care, Kim
    Nope, haven't heard back. Nothing can be done regardless of what it might be anyhow so I will just give it a few months and see if anything changes. It's not getting any better though. Hopefully I can afford to see at least an ENT in a few months! Thanks for checking in with me.

    Hi Steve,
    Hope you had a nice weekend. My sister was here from Texas visiting. We had a nice visit but she kind of drives me crazy since she tries to give me advice and mother me all the time. He can get a little overwhelming at times. But, she loves me and is just trying to help so I take it in stride. The twins are learning to drive and most of the time practice with their dad. I let my daughter drive a short distance with me the other day. Made me a nervous wreck but she actually did pretty good. Their dad is really good about taking them out to practice. He is a really good father I have to admit and I'm grateful for that. Have a good week. Kim
    Remember I was not posting about twitching, I was posting about my palate blocking my nasopharynx when I exhale out my nose. I wanted to see if that might be a bulbar symptom. I am not just some crazy twitcher not trusting my neuro. If he had emged my tongue and palate and it was all clear, then I wouldn't be worried. But no emg on those areas since this stuff didn't happen until after my last neuro visit and i can't go back now because of no insurance.
    Yes I emailed ALS Assoc, no response yet. I have been to the BFS site for years. It is futile there. They all have anxiety and fibromyalgia (nothing real). I already know I have BFS, and those people on BFS site can't answer a question that only someone with ALS can answer for me. Just whether or not that is a common ALS symptom. I know who Wright is, he is an EMG guy. I am not a Googler. I know about the forums, but not from Google. I am not just another twitcher thinking I have ALS as this isn't related to my twitching. I have been reading the ALS forums here for years now. This is the first post I had made. And the last since everyone thinks I am just another anxiety ridden BFSer.
    Hi Steve,
    The flower pictures you posted are beautiful. We seem to have skipped spring here and headed right to blistering summer these last few days. I called my dad this morning to say Hi to my dad and found out his care-taker is sick. Luckily, we have a back-up person who was available since dad is dead weight and I can't lift him on my own. Just praying dad doesn't catch it. I'm trying desperately to get organized for a garage sale. We have tons and I'm sure will end up donating alot as well. Hope you have a good week. Kim
    Thanks Steve. I was just trying to find out if this a possible symptom but people seem to think I am just some uneducated person about als and I know the people here are not Drs and I know ALS does not go away. It has been a month since this started and doesn't seem to be getting worse - just not going away. No speech issues, some mild swallow issues (off and on for years, due to reflux), no issues with liquids. I will wait until I can get insurance, since if it IS ALS, there isn't anything they can do anyhow. Just want to know so I can get priorities in order if it is. I am no stranger to this worry as I have twitching on hand, arm and legs for 3 years now, although limbs are cleared for ALS at this time via emg (Neuro visit this year when I had insurance), it was after that appt that this weird palate thing began. My neuro said that some neuros now think that early twitching may be very early manifestation of MN issues.
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