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  • Hi Jamie,
    Glad to see you posted on where is everybody at. Glad to see that your progression has seemed to stay the same lately. My dad just moved to Dallas a couple of months ago to an assistant living type facility. We couldn't find him adequate here in our small town in Illinois. Dad's progression seems to be at a current standstill. He can still feed and eat by himself but he needs help with most everything else. He spends most of his time watching movies on Netflix. I hope you have a nice visit with your mother. Take dad in stride. Take care, Kim
    That is so true!! I can't really remember my mom's voice either...I found my old phone with a bunch of videos and pictures on it. Was weird to hear her talking and see her walking. Can't beat yourself up over it. So many things change at such a rapid pace that it's almost like your mind cannot compress it all. Sometimes you just want to hug your loved one and they can't hug you back-thats hard but know she wouldn't be able to do this without you! you and your daughter bring her so much happiness even if she can't do things the way you guys did before. Glad she has you
    I totally agree! Thank you mom is much better, recently tried a new med that gave her a terrible reaction but everything is good now/ How are things with you? How are YOU feeling?
    Hey Jamie! I actually just got the peg a couple of days ago. I was so scared and nervous. But the doc was so reassuring and gentle. I simply had to let go of my fears and trust him. The procedure went extremely well. Was uncomfortable for two days but today, need no pain meds. My energy is good. If your mom goes for it, i wish her the best.
    Hey! thanks for responding to my thread. I really hope you get some support from your family. Last thing you need is to deal with unnecessary frustration. I know your mom is newly diagnosed and you probably have so many decisions and feelings to sort through but feel free to vent or ask anything any time! My mom has been battling this for 4 years and been through alot (peg tube, baclofen pump and more) so if I can offer any advice or share and experience I would be more than happy. Daughters and mothers have a special bond especially in times like these. I wish you guys the best
    Thanks Steve. But they don't even read the stickies. I doubt it will do any good, except for maybe that OP. It's like each person has to be told that separately and directly. I do feel badly for people who are scared. Even if they don't have ALS, I know it, you know it, everyone knows it, they do, in their own mind, think it is the case. As the saying goes, crazy people don't know their crazy. ;) It must be debilitating to be a hypochondriac at that level. But they are so self absorbed and into their sickness of non-sickness that they are inherently selfish and don't THINK that their actions do impact others negatively in this case.
    Hi JamieL,

    Loved your post today chiming in with nighthawk. I think those of us who care are going to have to be the helpers for David. He cannot possibly screen every post from every new member, let alone from all the existing members. The people who are sincere and truly looking for answers are always welcome, as you have said stated so clearly. But sometimes, we have to watch out for the sicko's.

    Just wanted to commend your word choice and polite but firm explanation. He/they should get the message, and hopefully, others will read it and take heed.

    Cheers,
    Steve
    Oh, yikes. Thanks for the info. My mom would for sure need to get a PEG if she was going to do that. Her swallowing is so bad now there is no way she could orally take 28 pills each day. Do you know if this is the "$25K" one poster referred to spending? Is it really expensive? I'll check those sites you mentioned of course. We are meeting with the neurologist at the ALS clinic this afternoon for the first time so I suppose I can get his thoughts as well. Thanks for the info.
    Jamie, you'll find some PALS on the PatientsLikeMe.com website that are trying the Deanna Protocol and using the PLM site to chart their progress.
    My understanding is that it's quite involved, with some taking around 28 pills a day. I believe one of the meds is supposed to be given IM. There is also an exercise regimen.
    ALS Untangled is scheduled to do a report about it but I don't know when it will be available
    Jaime, sorry for the situation you find yourself in. You sound like a great daughter. Just thought I'd mention your posts are really long, and it's hard for PALS to get to the crux of your comment. Many of us are fatigued and some of us have slight brain fog from our meds. With greatest respect, I suggest shorter is better if you want PALS to help. Many CALS are very busy and long posts are often ignored. Good luck at the clinic.
    Hi Kim-

    Thanks for the note. I just now noticed the notification thingies up in the right corner of the screen, so sorry for the delayed response!

    I am so sorry about your father. How is he doing right now? I'm sorry about your personal situation. I know that must be very hard. I have a 4 and 6 year old (girls) and I can only imagine how difficult life would be in a split home. But sometimes that is better than two people staying together who are unhappy there. :( Big hugs to you. Thanks for the message.
    Welcome to the forum Jamie but so sorry for your need to be here. My father who is 78 was diagnosed with ALS in May of 2012 with limb onset. I just recently seperated from my husband of almost 20 years. It's very painful. We have three children together. We have twins boy/girl who are 15 and then another son who is 9. I live in a small town in Central Illinois but my brother and sister both live in Dallas. My dad was staying in Texas and was going to the ALS clinic there at first. They treated him very well. There are some new clinical trials coming out that hopefully your mom can participate in. Take care and drop a note on my wall if you'd like. Kim
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