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  • Hello my dear
    my name is lussy i was browsing today, so i came across your profile on it seams like some thing touched me, i started having some feelings in me which i have never experience in my life before, that is why i write to you, i will also like to know you the more, and i want you to send an email to my email address so i can give you my picture for you to know whom i am.Here is my email address ([email protected])I believe we can move from here! Remember the distance or color does not matter but love matters a lot in life) Am waiting for your immediate response i love you with faith and trust. Miss lussy. you can send me your email also pls
    Hello abbigail..just checking in to see how you are doing.haven't heard from you in awhile.hope your okey
    Hello Abbigail. I got your post and replied, but I just realized I replied to myself LOL. Thank you and Hello to you to.
    Just relaxing and thinking about going to bed. Worked 24 of the last 48 hours and kind of tired today. I hate Sundays. They have always been a family day for me and it is tough learning to be alone. I am sorry to complain Joni with all that you are going through it makes me feel like such a whiner. Honestly I am not often down but I have moments of weakness, I guess like anyone else. How did Bruce's surgery go? You said on FB another angel got wings............ Who? or did I miss something. Praying you get some rest and find something to be joyful about each day. Those moments are what kept me going when things were tough. Love you girl friend. Hugs ya tight
    Abbi from what I was told, they are still in the paperwork process. No telling how long it will take. where do you work night shift at? I used to hate the 3rd shift. I hope you are trying to take care of yourself. We are going to florida for a few days thursday with my daughter and her family.
    Hey Abbigaill, internet has been down so just been able to get on. They ordered Bruce's Dynavox last week. How are you doing?
    I didn't realize you were having problems up there too! My gosh! You sure have your plate full Abbi! I wish there was something I could do to help. Do you have home owners insurance that will cover repairs? I swear, God is really po'd at us the way the natural disasters have been going here in the states as well as up in your neighborhood evidently!! Aly has been feeling tremors from earthquakes far from her in NZ. Tornadoes, flooding here and with you. This whole world is going nuts. Hang on to your hat Dear One. I'm sorry you have so much to worry about. I'll pray extra hard.
    Worried about you Toots!
    I'm thinking of you Abbi and sending good thoughts and prayers you way.
    {{{{BIG HUGS}}}}
    I know how hard it is, and I hate it. Yes stay as busy as you can, that way you are too tired to think... Sending you a big HUG back!If you ever want to talk, I am here ok!!!
    How are you Abbigaill? Dumb question I know..and I know better since I have already lost a husband. I will tell you that try to get in some grief support groups, they really helped me, also they have a webcite called if you are evr interested. I am thinking about you:)
    I was diagnosed 7/2007. I have minimal use of my hands I can walk short distance with a walker my head tilts to the right I can put it straight but it's hard to hold it there. I have lost my clear speach, people that are around me can understand most of what I say I also have a lap top computer inter changable with a tray for eating conected to my wheel chair with a mountain mover bracket that I use for speaking with a program (etriloquist) I down loaded off the interet.. I take 4000mg gabapentin a day split in 3 dosages, have a continuose feed intrateacual baclofen pump in my abdomon going to my spine, & take 4mg hydromorphone at bed time. When I first got out of the hospital I was taking 8mg hydromorphone every 4 hours. I don't like taking meds so I gradually cut back. I use to use a tens unit for the pain in my legs, arms & neck then I stared taking 1200mg split in 2 dosages of Co-Q10 a day and that has kept the pain under control during the day.
    My husband has been having lots of pain in his shoulders and neck. We have both been up 4 to 5 times per night for the last 6 days. He was on tylenol. Yesterday he was changed to Tramacet and it seems to be working. Is this pain a part of ALS? Any ideas or feedback would be appreciated.
    Hi Abbigaill,
    I am sorry about your husband. My husband was diagnosed in April, 2010. His ALS has been very, very aggressive, too. Limb onset (left hand). His FVC (lung function) went from 125% in 1/10, 80% in 5/10, 50% in 8/10, 45% in 11/10 to 40% today. One year ago, he could walk, talk, use his hands and arms, breath and eat without trouble. Today, he can barely talk. He chokes often when eating (he won't give it up and start using his PEG, though). He cannot use arms, left hand and has limited use of his right hand. He can stand for short periods if helped up.

    I've dealt with this by staying ahead of the game. I've had equipment in the house before we needed it, I haven't waited until we need it. Ask questions from forum members, your ALSA patient care coordinator, nurses, doctors and anyone else you can think of. Accept all help offered. Prepare for the worst, but know that doctors can be wrong. Prepare for the long haul.

    My thoughts and prayers are with you. Missy
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