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  • Sooner,

    I was wondering if you thought of Mike, or if you wanted it girls only. I know he said he’d go the last time.

    Sue
    Hi Sooner,

    Sorry was traveling yesterday, got a PM from Becky about days. Just sent her a reply. I’m now trying to coordinate care for my dog, and DD’s move to a different apt at school. I’m thinking M-Th as a possibility. Doesn’t have to be that many days.

    Sue
    No need to apologize. I understand bad days for sure.

    I don't know where the rules are posted?! I have just seen them when someone breaks one and they tell them, lol!
    I understand about rules:) I just could not find anywhere in the FAQ not to post links, especially helpful links. I have read them all, perhaps I missed that. Do you know where that rule is?

    Sorry about complaining about bad day, my husband knows those better than I do! for sure! Hope you are having a good day and thank YOU for your kindness!
    I understand! We all have those days when all we want to do is cry. Those are the days I usually end up in the bathroom doing just that.

    Sometimes the rules seem silly but the good in this forum far out weighs the bad. I seriously don't know what I would do without the wealth of info on here.

    I'm sorry you are having a bad day.

    We also go through a TON of tissue. UGH!
    seems we can never get a balance with the horrible secretions. I should take stock in paper towels, it's unreal the amount he uses! I hate this so very much!

    My husband seems to think we should stay with what we have for about the same reason, we don't want the cmn changed and then he can't tolerate something else. we get our supplies once a month from a dme also.

    bad day today, I'm not so thrilled with this forum either. my first day I was warned not to post links and felt almost like I had been slapped. I also see there is no way to exchange private emails with others going through the same.
    forgive my complaints, just want to cry today
    He's doing ok today. We are dealing with thick secretions... He is trying alka seltzer today which was suggested on the forum by Tripete.

    We go to the MDA Clinic once every three months. We see a nutritionist there. She helped us with formulas to try and also gave us some that someone gave her that didn't work for them. She also gave us samples of others. We get a month supply at one time and I didn't want to order a month of something and then find out he couldn't tolerate it.

    I hope all is going well on your end.
    I had never heard of it either but we have a mobile doctor here and it was suggested to us. I am thankful that we found them, I can't remember doctors coming to homes since my grandmother's time.:)
    Thank you for that point, my husband is tolerating this formula fine now. my only issue is the amount of liquid to get the calories.......same as you it seems. I'm going to check out the isosource and I did mention to the gp yesterday. they have no problem doing the cmn if I want too........thankful for that! Hope you are well! how is your husband today?
    Mainly, we wanted him to get as many calories in one shake as possible and wanted the insurance to pay if possible. We tried a few different ones because he couldn't tolerate some.

    So nice that the GP will come to your house.
    I have his GP coming to the house today to give him a Pneumonia shot, so I will ask to start the process for the pwc. Thank you again, I hate this beast too and agree that no one should have to endure this:* right there with you! Is Isosource better nutrition, perhaps I need to check into that, we don't have a dietician/nutritionist, whatever you call them:) but our GP can handle it i'm sure. I know that you have already given me hope and helped me so I thank Jesus for that! and You! Love to you~!
    I started the pwc process Jan 2 and just got it around like April 25. It took along time... I would start on it just because you never know how long it will take or when things will change.

    He used Ensure Plus at first but our insurance will pay for formula so we are using Isosource 1.5.

    Honestly I hate ALS and what it has done to my husband and our family. It is a beast for sure that no one should have to endure.
    PS-My husband is on Tussin to thin secretions when needed from the acetylcysteine thickening up mucus plugs ( he uses that at night before bed). he is also on glycopyrrolate, transderm scop patches, duoneb during the day and when needed, atropine under the tongue. we don't use that much, it has a delayed reaction and causes pain in the palate. he uses a suction machine all the time it seems:( we use a respiratech vest to get the secretions up. still has a little cough but not much, tried the cough assist, percussion vest works much better at this point. constipation and large stools, hasn't been able to eat anything in a year, on ensure plus. use senna and prune juice warmed right now...........
    My husband uses a nasal mask, we and the therapists are aware the air escapes but he just can't use a full facial mask. We are one year in, perhaps as this beast progresses, things will change. He has said no to trach. I'm glad to hear your husband is still walking some! And still texting!! Hugs!! Hope it keeps up! The only thing I'm concerned with is his breathing. I pray constantly for strength from Jesus to endure what we must! It is comforting to me. My husband is on Trilogy also and has had a hospital bed since coming home from the hospital from the AAA one year ago. Should I think about getting a pwc? We haven't yet, but at what point did you? And I had no idea what an AFO was until you said it and I looked it up, thanks again! I need to look into that better! I am so glad you are here, I don't mean that in any bad way. Comforting to me to have someone else going through the same, so thank you so very much again! Hugs!
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