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  • I had written twice that much, but lost the rest when it was too long to fit. I'll try and answer any questions if you have them. Right now I'm zonked--but will be glad to pick this up again if you like.

    Blessings as you ponder...
    Ann
    I just realized you don't have private messaging! You can tell David and Al at the bottom of the main page (problems, etc. thread). The basis of my faith is the Bible, combined with being open to receiving the truth no matter what it was. I was agnostic although churched, but hadn't ever read the Bible. I began with the gospels, and read the New Testament, but within a week I "knew that I knew" He was Who He said He was, and I was amazed. I know how simplistic that sounds, believe me. I've suggested to others who aren't sure about the reality to just ask Him what the truth is, and if they have the intention to follow Him if He reveals Himself, He has done just that. The key to faith is willingness to obey, and Randy, my faith has just deepened as I've lost physical ability because I'm less distracted by what I want, as I see His willingness to take care of my needs.
    Hi Randy,

    My on-set was my feet, and yes--it was slow for quite a while, since the beginning was near the end of 2004. My left leg was very weak when I had the first testing in (I believe) 9/06. Both legs were about shot, and I had stomach cramping by diagnosis in 7/07. The test showed the disease was in the thoracic area...First little wheelchair summer of /08, Loaner chair 1/09... and my entire trunk was cramping by then. Now, hands only really good for typing--but I can still hold onto the bed rail some while seated on the edge, arms hurt, as I had described, neck about shot so I need a brace and my vocal chords nearly gone. Just a tad of bulbar, not much.
    The "pattern" is probably based on how quickly it goes from one area to another as well as how long an area goes from fine to no use. It's impossible to say how fast you will be. Mine is seemingly faster now than it had been, but it's because the muscles in several areas are down to nearly zero. What I've read is that it can speed up or slow down and plateau at any time, Randy. Are you registered at Patients Like Me? If so, same user name? I'm abbas girl there, but my information is out of date. Insurance problems meant skipping clinic last time, which is fine. I have an app't on Feb. 3.

    It's my "purpose" really to be here right now. As I've had some experiences, it makes them seem worthwhile if it means I can help someone else. And, as you know, (I assume) I've been given so much peace from the Lord, so it blesses me to be able to share.

    Let me know if you're at PLM, and I'll look at your information (profile page) there.

    Hugs,
    Ann
    Randy, I forgot to tell you that I did get my own power chair in May of 2009. I really like it except that it isn't reliable. Unless you might be doing wheelies, see if you can get someone to help you remove the motion sensors--mercury switches and something else. They can trip and then you lose all power. I'm on my second joystick (this is an Invacare chair, although some folks have no problems with Invacare, and according to Joel C, all chairs need to be rid of these sensors, as it's a common problem. I figure it a liability issue from the manufacturer's perspective.

    I hope the bathroom remodel goes smoothly and is all you need it to be. The more open the space is, the better. Phil made my bathroom out of an open half bath which connects to the master bedroom as well as an office, so my shower and sink are where the office used to be. My chair fits through that "office" door but not the bedroom to landing door, so I enter and exit by way of the bathroom.
    Ann
    Hi Randy,
    Yes, you would click on my name to go to my page and leave a message, but everyone forgets sometimes, and the only problem is your message wouldn't be seen or responded to. I'm glad you told me. Also, see where it says "view conversation"? If you click on that you see the progression of dialog--that's always nice!

    Randy, I don't know of anything in the supplement area that can slow progression. I'm really sorry your lungs aren't pushing out the carbon dioxide. All I know to do without medical help is to raise the head of the bed--a hospital bed or with pillows.

    No, I'm not getting range of motion help... which has surprised me. I did it for myself in the beginning, mainly for my shoulders. Now my upper arms hurt if I raise them, although my shoulders still had good range of motion when the pain began. Very odd, probably tendons, I guess.

    Ann
    Yes, I'm looking for someone who wants to play online...Yahoo for instance has bridge. It's a partnership game and partners need to collaborate on bidding systems to play effectively.

    I didn't like my pulmomary test results this past week. My exhale strength is only 38% of normal. I think that indicates that problems clearing my lungs are just around the corner. Thanks for asking about how I'm doing. I keep looking for anything that canslow progression. Do you believe vitamins or supplements might help?

    Are you getting range of motion help...if so what is your routine?

    My best,
    Randy
    Hi Randy,
    You've been awfully quiet lately--are you doing ok? I don't play bridge, and didn't see anyone reply to your question about that. Have you ever done a search for on-line playing?

    I've kept to my plan to stay out of refrigerators... now I just ask others for whatever I want.

    Take care!
    Ann
    You will find plenty of support here, and many answers. Feel free to post and ask questions. Lori
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