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Floyd Parton
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  • Floyd, I have not heard from you in awhile and I havent seen any posts on the forum. How are you? I am sure things must be getting harder but I would like to hear from you.. Sherry
    Hey Floyd, How are things going for you. I did see Dr. and I really liked him. Sadly he just reconfirmed my diagnosis. I guess I am still hoping for a miracle. He did say that I was in the very early stages of the disease. He said usually by the time a patient got to him they had been misdiagnosed by so many outside doctors that they were in much worse condition than I am. I guess it was a good thing to start with Vandy even though I had to go thru so many different doctors and tests before they decided what my problem was. Let me know what is going on with you. I am supposed to go to the Nov. als clinic. sherry
    Great news that the ensure is working for you. Sorry 'bout your right hand - my left one is becoming increasingly uncooperative. Thankfully I'm right handed - but it's surprising how much I use the left one! Kinda annoying!
    Hello Floyd,

    I have wondered how your appt on July 19th went. My next is August 16...seems like forever. Thanks for befriending me...Sherry (sunewun)
    I am 59. I have to use my arms to move my left foot around when sitting. the right can almost still come up if I want to cross my legs. I grab it too.
    Dr Lee set me up with an appointment with Penny Powers there at Vandy. She fits the chair to your size and needs. I have a Permobile C300 on order. I should have it early next month. Her group contacted the MDA (I didn't know until recently that ALS is part of the MDA association). The MDA provided a loaner powerchair. A Pronto Sure Step. It was donated by a woman who got a new chair. It is small for me but gets me around. Boy does it save energy and reduce fatigue. I can still walk a few paces with a rollator but due to my weak leg muscles and poor balance, my risk for falling is high. My wife can't get me up off the floor by herself.
    Hello, Floyd: - - -Caught your post regarding the weight loss issue. You need to keep on as much weight as you can. Are you streightened away with the VA by now? I read some place that VA would provide food supplements such as Ensure. I was instructed to gain weight rather than lose it and I have done just that. Re VA. It takes me about four weeks to get into the VA Clinic once I call for an appointment. However, once I see the Clinic people, they promptly contact the VA Medical Center for any "specialty" work. (It takes another month or so to get scheduled into see the Medical Center Doctors.) The Clinic also are very helpful in forward perscriptions to the VA Medical Center where they "fill by mail." - -I have not taken Ensure since my original purchase (didn't know about the VA deal at the time) since I was gaining weight whithout additional help. Send me a PM if you have VA questions. I have learned a few meager things about the system. Good luck ! !/Frank
    Hi Floyd! Just wanted to say welcome to our group. Sorry you have to be here, but glad you found us.
    Dear fb, I am happy to meet you also. My progrssion is slow I belive I can not walk on by own an now have a PWC so I can get around. My right arm is very sore and left week. But other than that I am with we we are on for the ride, who knows whats around the corner? Like me smashing my feet in the PWC so they are in pain and xrays just taken, they are bright purple though....LOL...Keep smiling they will never know. {Hug}
    Jan 3rd was last time I saw Dr D. After EMG (needle test) and the test that shocks you (I can't think of the name of test) Dr. D told me he was positive I had ALS. Dr. D then told me about the drug Rilutek/Riluzole that is suppose to give you 3 months more. I had read the side effects of the drug and had decided against it. He also mentioned the clinical trials were full. He then suggested I start coming to their ALS clinic. Aug 3rd will be my first clinic visit and I look forward to going. The worst part of this disease for me is being a burden on my husband and family. After all I have read about ALS I keep telling them they have NO idea how bad this is going to get. They keep telling me not to worry about it. I pray daily for GOD to give them strength to get through this.
    Hi Floyd, thank you for the friends invite, nice to meet you. Wish it was some place else but glad you found us here. Hope you are doing ok. {HUGS}
    I saw in one of your posts on another thread you mentioned that you had read some times ALS stops and reverses. I read pretty much the same thing..... a couple of RARE cases where ALS burns out and the people that had it don't have it anymore. I mentiond this to Dr. D and he said NO...those people I read about never had ALS to start with because ALS NEVER burns out and reverses. I believe Dr. D is WRONG! I truly believe those people we read about were healed by our GOD!!!
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