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  • Just dropped by to say Hi! Hope you are doing ok. Wishing you and your family a Happy Easter.
    Take care, Kim
    Hi! Just wanted to stop by and wish you Merry Christmas. How are things going for you? My dad is going to come over my house for Christmas Eve. He is doing so-so. He is getting weaker in his arms now which is frustrating him. Take care of yourself, Kim
    My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    Sorry, won't let me PM. I suggested the clinic to see if they could help with the pain. Doesn't sound like your doc is doing much for it.
    If you check their website, they have people throughout Florida, and if they have items you can use, they will deliver them, so you won't have to go to them. The clinics can help with several areas, including drug trials and any other care or RX for things like AFO, breathing issues, etc.
    There is a loan closet at the ALS association of central FL, yes. And I dont know what doctor you see, but I'd highly recommend dr katzin at university of south Florida in Tampa. She knows ALS and is very, very nice. I have a great pain doc in Orlando if you need one, PM me. Not sure where port orange is.
    Hi, yes Abbaschild has passed on as well as many others who had been on the forum for years. The BiPap use was gradual for me as I got it early. I started with an hour in the recliner watching TV or reading and gradually built up to nap time then a few hours at night. Now I wear it all night long. The cough assist was a Godsend for me because of allergies and post nasal drip. I use it intermittently now. Am much more comfortable being able to get that crap up and out. No trache fo me, but will consider the Peg most especially for the comfort of hydration. As far as prayers, I think sometimes we just need to change what we pray for. It's comfort and peace for me.
    so god didn't give us this horrid disease, and all of the prayers are not for stopping its progression, or a healing but to give us the strength to deal with it until we all inevitably die from it. most of the people on this site arent on it anymore and i just joined last jan. because i have friends, neighbors, prayer groups, churches praying and i am progressively getting weaker and worse. so what are these prayers for then ------- just for the strength to hang in there until we die?
    Hi Cyndi,
    Sorry to hear about your hospital stay. Our youngest son Eric who is 8 is leaving on Thursday, Oct 4 to fly with my aunt (dad's sister) to visit my dad in Dallas. Dad is staying pretty much the same lately. He uses a walker at home to get around and a manual wheelchair whenever he goes out. He can still eat on his own but it takes awhile and he needs help cutting his food. His breathing never was too bad yet but he does use a bi-pap at night. He is extremely thin but his weight has stayed the same now for several months and he has a good appetite. His voice comes and goes. One time I talk to him his voice is perfectly clear and the next its really garbled. Hang in there ! Hugs, Kim
    You might want to look at a thread I posted awhile back under stories of hope. It's locked now for further postings. But, I wrote Power of Prayer under Skipper66. It's about a miracle I experienced with my mother. Kim
    Hi Cyndi,
    My dad refuses to have a feeding tube, vent, etc. as well. He just got his bi-pap about three weeks ago and uses it just at night when he's sleeping. He sleeps 100% better with it. I heard that it is better to get the bi-pap earlier rather then later. Kim
    Hang in there. You are alot stronger then you think. My mom passed away 15 years ago from colon cancer. I asked God for a miracle and that she would be cured. Unfortunately, that didn't happen. But, God did answer many of my prayers. She got to go to Las Vegas several times which was her favorite vacation spot. Her pain was controlled. She died peacefully with her loved one's holding her hand. I being one of them. It's okay to be scared and even angry at times. Write to me anytime and share with me more about yourself. Sending you a big hug, Kim
    Sr Sharon, you say you're on the bipap now 24/7. when you first start using it was it gradual, like 1-2 hrs then building up as you needed it more. i told my 2 children this was absolutely the only intervention i would use ---- no vent, no feeding tube. cough assist/pressure band, that the dis. could just run its course. i, too, hope something else, anything else, takes me before i become totally helpless and know itl
    the most hopeful studies now are the stem-cells, your own from your own bone marrow , that they inject into your spine. was also told it would be at least 10 yrs before it was finished testing and 'FDA approved it. i'll be long, long gone by then. nothing else even remotely on the cure radar. :(
    thank you sooooo much for your time and words of wisdom --- they help me.
    love to you. cyndi
    Stay strong in the faith "Hope Angel"....it is a very tough road this ALS but God will give us the strength! My breathing is affected now and I am on the bipap 24/7....I am hoping I go home to God soon before I become trapped in a body that cannot move.
    Be strong and hopeful that they will find a cure!
    love you much
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