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  • They decided to move me to the nursing floor ahead of time because my breathing is so bad. So I got a room with the view of the Cascade Mountains and the water front. I takes a big leap of faith to move to this new room because it is not set up the way my old room is....I have to hold on to furniture to get around.
    Pray that I stay calm during this move...moving on Monday~
    love u much
    sharon
    PLEASE PRAY THAT I GET AN INTERVIEW WITH DHSH BEFORE SEPTEMBER BECAUSE I CANT MOVE TO MY NEW ROOM UNLESS THEY INTERVIEW ME~ THEY MIGHT HAVE A CANCELLATION ON AUG. 13....PRAY THAT i GET THAT SLOT...
    LOVE YOU MUCH
    No I am not moved yet...hopefully this week sometime. Keep praying for me that I be calm and peaceful and not so stressed out about the move.
    love you much
    Sharon
    Hi, noticed your post asking about the stem cells. Make sure you read the thread I posted a link to in my reply. It was started by a member here, named Shane the Pain. Nothing about it has changed since he had it done in .2009. Same procedure, and VERY expensive. There is a good site called PLM (Patients like me). And several people have posted there. If you have an extra 100 grand lying around, give it a try.
    HELLO BRENDA! PLEASE PRAY THAT i GET THE INTERNET IN MY NEW ROOM...THERE IS ONLY WIRELESS WHICH IS NOT ALWAYS RELIABLE IF THERE ARE TOO MANY ON INTERNET AT THE SAME TIME. I HAVE ASKED THAT I GET A WIRED INTERNET CONNECTION. PLEASE PRAY THAT THEY SAY YES!

    LOVE YOU MUCH
    SHARON
    Hope you have good support around you. Sure that your 3 kids bring you love and laughter. And worries as well. LMN & UMN I understand is Upper Motor Neuron and Lower Motor Neuron - affects progression? Don't know but I think it determines location of symptoms. Have you seen the video ABC's of ALS on youtube ? It's a 3 part series and very informative. I thought it was excellent. My friends and family have all watched it as well. Have a good weekend!
    Hi Brenda -

    Yup - ALS on the menu - my husband calls it a "lifestyle change"- Diagnosed in April - Going to first follow up with neuro on Aug 16th - lots of trepidation. Don't know if it's fast or slow or UMN or LMN - I have learned all this on this forum. Writing questions for Dr. to be sure. I am mobile - if you met me you, you wouldn't know - left side. My left hand is mostly the culprit. Could not do up my bra today - guess I'll have to get some "front loaders". Ha! Do you have kids? Are you still working?
    Hello Brenda,
    Good news, a room is available for me on the nursing floor of SJR! So I will be moving shortly.
    My friend Gerry is coming to help me with the move. That makes me relax a bit. It is so hot on the third floor, but guess what? The Dallas Carmel, where my my friend Sr Teresa Maria is now staying, agreed to buy me an air conditioner! That puts me in great relief !

    Also, my friend and Sr Teresa Maria is here visiting me and she will be here for the move also.
    I have had fun with her and she is a great comfort to me!

    Hospice came out and visited. They reassured me that I would not be gasping for breath near the end which greatly relieved me...they said that as the Co2 builds up from lack of breath it would make me very sleepy and they would give me morphine, so basically I will fall asleep in the arms of God.

    But for now I live one a day at a time, grateful to be alive! It is all in God's hands!

    I have been watching the Olympics too, very enjoyable

    love you much
    sharon
    Hey Brenda -

    Alas - yes I have it. Wish I didn't - but trying to make the best of it. Lucky I have a great husband and family. (check out my photo album, if you want). Still mobile - mostly left side - hand increasingly uncooperative. Main complaint is fatigue. Glad to know San Antonio still pretty. Have you posted pics yet?
    Hello !
    Welcome. I'm kinda new around here too - but I learned so much from everyone. I live in Canada - but have visited Texas - especially remember the River Walk in San Antonio - not sure if it's still as nice now - as we visited quite a few years ago. The Texas Tex-Mex food was delish- so much tastier than we get here.
    I didn't want to take Rilutek. I had read about the side effects and didn't feel it was worth it for what little it was suppose to help. Plus I don't see how any one could know if it really slightly slows progression or not since we all progress differently. A couple of times I have wondered if it would have helped me but the thought didn't last long. I hope it helps you. Hopefully after you get used to taking it you will get more back to your regular self during the day.
    October 2010 my right ankle started turning over and I thought I was spraining it. I didn't realize it was turning over because of being weak. Then my left ankle and right hand started getting weak within the next year. I have AFO's which help alot but my thighs are getting weaker now. So far my left arm/hand, speech/swallowing and breathing are still ok....I think. I go next Friday for my first clinic visit and I may be worse/better of than I think I am. It drove me nuts not knowing what was wrong with me and spending alot of time and money going from doctor to doctor and getting tons of tests. Glad to hear you are still up and moving! My walking distance is getting shorter too. I just recently got a scooter to use in stores. Sorry to hear about your swallowing and speech. This forum has been wonderful for me. Nobody but all of us know what we are going through.
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