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  • Hello, thought Id drop by and say hi to you. I really liked your sharing about your dying experience. How has it affected you, could you post more about it? I think it would help alot of people here on the forum if you would share more.
    your doc told u NP001 will come out in aug? how is that if its just finished phase one.
    Oh thanks so much for the info!!! I think it would be a miracle for the FDA to approve it so fast though. Fingers crossed!!! Hugs!! Kari
    Hi schavez, first of all, welcome to this wonderful forum!!! So so sorry about your diagnosis hun. I saw on one of your posts about the NP001 medication. Did you ever find out anymore info about the man from Thailand? It takes A LOT to get things approved from the FDA here. Your doctor thinks it will be available in August?? Please let me know what you find out. Oh yes, and when you reply hun, make sure you point the mouse at my name by my picture and then post the message, or ya end up posting back to yourself!! HAHA I do this still!! All the time!!! Hugs, Kari
    Bible study who attends? Me, my mom, dad and brother. I have a few others interested and may join later. If successful I plan to move the study to a nearby church. They only have it in Spanish and I am starting an English one. We are starting from the begining Genesis and I have ordered videos and movies to supplement and make it interesting.
    Thanks you are lucky you have a husband... my boyfriend freaked out with my condition and ran away...lol... oh well maybe I'll find a new one here in Texas.. you never know.. :)
    Just a quick reply--glad as I can be you've started a Bible Study. Do others come, or is it by yourself? Yes, your fall was very hard on you, and mostly we all do those things. I don't go out anymore except to the ALS Clinic. The women from church do a lot--I have to be hoisted with a sling and hoyer-type lift to the toilet or shower chair. They also do all our errands; one man cooked weekly for two and a half years, but now Phil wants to learn how. I left fb, after hearing of infections coming in plus they asked me to sign in but then sent me directly to someone's private messaging once, and other things--I thought it was risky. So glad you're left handed. Whew! Your home set-up sounds great. So does the housekeeper! I still plan meals mostly and make shopping lists, but Phil has taken more and more of my old tasks. I do get it with the Medicare/ Medicaid, the SSI and SSID. Crazy making!
    part 4 - most of my weakness is right leg and now the right arm.. left leg is still not gone yet.. still have some strength there and left arm is very strong. I am left handed.. God help us.. Did you read Augie Nieto's article? He is something else. He is my hero. He has wine and beer put in his feeding tube. He's my friend on facebook. Are you on Facebook? I've learned alot about research and fund raising from his site.
    part 3 - I also get a massage once a week here at home. I am getting PT here at home and we just came to the realization that we should only do stretch and range of motion.. they were having me do other things that's why I inquired.. I have a bike I use for only 3 minutes it helps me with cardio.... I never noticed my weakness until I had it fulll blown. . I sprained my ankle in Feb 10 and it never healed and then in March I fell and hit my head and started walking like a turtle.. I worked until end of June. I could no longer walk without a cane and felt like I was going to fall at any minute.. I was Diagnosed early August. My doctor is Stan Appel he is the best ALS doctor in the world.. but there is not cure.. only hope for the NP001 drug that is coming out in August. I heard it reversed some of the damage on some people in clinical trials.. they are in phase II.
    2nd part... So as of 3 weeks ago I was not able to stand on my own. If lifted I can bear my own weight for about 1 minute. I have started a bible study here at home but because I moved away for 25 years don't have many connections but will make them slowly... thanks Ann for your input.. I do appreciate it. I pray daily for a miracle cure for all of us.. I will find my voice.. I've never been one to sit and read and watch movies.. I was just go, go, go... now I find myself doing the same as you.. I've purchased DVD's for Bible Study that should be fun and I am getting netflix hooked up to my TV so I can just order directly from the TV.. When you go to mall or the movies or just out how do you go to the bathroom? That is my biggest hurdle right now. I've purchased some transfer boards so that I can do this..
    I live with my parents. I used to live in Los Angeles but had to move home to Texas because of my condition. I just build an addition to their home a huge bedroom and handicap bathroom. I've hired a housekeeper for day 9 - 6 to help me with cooking, bathing, fixing my hair, nails etc.. my parents are in their 70's and I don't want to burden them with all the responsibility. In addition I am hiring someone for week-ends as my mom starts to feel stressed when the week-end is coming.. The lady I hired is great, she cooks just the way I instruct her so I've not had any stomach issues. It sounds like your progression is very slow. I think mine is a little faster. I fell and hit my head and back and accelerated it in March 2010 - pre-diagnosis.. Then because my PT at the time did not have a diagnosis we did alot of things that made me worse...
    I hope the SS folks get you straightened out asap. I had first foot weakness in late '04, was lent a small powerchair in '08, an ALSA loaner in 1/09 and had my own in my possession in 5/09. I was diagnosed (which you see next to my avatar) in 7/07. I do still type, but I've lost trunk and neck strength to a serious degree, making it much harder to do. When my hands worked, I learned how to hook rugs, using wool fabric cut into strips. You can see my album of some of my "ALS Rugs". I am a serious Christian, so spending time alone with the Lord was something I'd done for a long time and could of course continue. My first involvement here was the Christian thread begun by a man who died this past autumn, Mt Pockets. I was in the other areas of the forum (once I found them!) to learn or in the "Off Topic" area for fun, and honestly, the Off Topic, especially the Forum Follies, is where I became utterly hooked while making friends.
    2-- Laughter together makes it easier to share the hard things. There is such kindness, and the teasing is always meant in fun, just being silly. It takes a while to relax and to trust, but this forum has been such a good "home".

    I read a lot for relaxation and always have. I get Netflix and also download movies when I'm tired. And just reading here, especially the folks with different afflictions from my own, is a way to cause me to think about what I may need, what I may want or not want. The PLS folks with Upper Neuron problems are very much an eye opener. I've begun having some of the upper symptoms, and without having read about it here, would know very little--my clinic is new, beginning in 3/10, and there is a lot known by folks going to other clinics and other doctors--in and outside the U.S. which adds greatly to my own knowledge.

    Who, if anyone, do you live with? I have friends hoist me out of bed, to the toilet and then my power chair, help me wash up, get coffee poured, etc. when my husband, Phil, is gone to work. I am alone still for hours at a time, but I've always been a project sort of person, content to be alone much of the time. That's a long subject, but do tell anyone who volunteers, what they can do to help you. They may surprise you in what they want to do-- and it makes them feel good to be helpful. This is 3 messages, at a limit of 1,000 strokes, btw. I open another forum page and then cut and paste. I'm off to nap. Hugs! Ann
    You are so right about there being no manual. But there is a book by a Mitsumoto, "ALS..." which is quite good. When you write messages (a tip) you can click onto "view conversation" under that person's post, which opens a page of running messages, or go to the person's page by clicking on their name in blue. I don't want you to think you aren't being responded to on purpose.

    I am sorry your arms are hard to lift. I so hope you have access to the ALSA loan closet for a power chair. I began in my legs, and know how hard it is mentally to "see the next thing" begin. The site is a help, both in advice and support. I hope you'll feel free to continue asking for anything you need here. The FAQ in the blue bar as well as the search in that bar are helpful. It took ages for me to find them.
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