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RollCall for PALS

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Old 09-09-2006, 06:17 PM #1
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hello im Bobby B.
from north carolina,
pals dx/94.
im in a wheelchair 6 yrs.


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Last edited by BobbyB; 12-25-2006 at 07:24 PM.
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Old 09-10-2006, 07:03 AM #2
alperstein alperstein is offline
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Alper Kaya MD
Ophthalmologist
45 M
PALS dx 1990, limb onset
PWC Lifestand LSC (1999), Trach, BIPAP(2004)
Onscreen keyboard (ScreenDoors/Madentec) for typing
Eating, speaking still ;-)
Izmir/Turkey
So far so good ;-)
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Old 09-10-2006, 09:46 AM #3
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Rob
Pals,dx July 2002
No use of arms/hands,wheelchair,PEG,trache.
Still fighting on!
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Old 09-10-2006, 10:56 AM #4
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Rama Whitlock, female, 56
ALS symptoms appeared in 1977, it took another year to get dxd after the delivery a beautiful daughter. I deteriorated at a steady pace until my diet was radically altered to eliminate dairy, grains, except brown rice, and simple sugars and fats. When I added supplements I stabilized even though symptoms are ready to continue the deterioration any time I don't follow my regimen.
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Old 09-10-2006, 12:29 PM #5
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Joel Cutler, 54
Symptoms started Dec04 or Jan05
DX Aug 05 limb onset. Left hand first then right.
I was monitored and given 2 years. Found Glutathione and still kicking! Deterioration slowed down immensely, was supposed to be immobile Dec05 - still functioning quite well.
Down to 1 finger on each hand to type, but still getting around on my own!
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Old 09-10-2006, 02:30 PM #6
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Quote:
Originally Posted by joelc View Post
Joel Cutler, 54
Symptoms started Dec04 or Jan05
DX Aug 05 limb onset. Left hand first then right.
I was monitored and given 2 years. Found Glutathione and still kicking! Deterioration slowed down immensely, was supposed to be immobile Dec05 - still functioning quite well.
Down to 1 finger on each hand to type, but still getting around on my own!
hello. How this it work? I don´t undertand anything. sorry
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Old 03-25-2007, 11:17 AM #7
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What is glutathione?
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Old 04-28-2007, 04:20 PM #8
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Bill in Salt Lake City. First symptoms in 98 after I had an head injury.
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Old 10-04-2011, 02:24 AM #9
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Quote:
Originally Posted by Rama View Post
Rama Whitlock, female, 56
ALS symptoms appeared in 1977, it took another year to get dxd after the delivery a beautiful daughter. I deteriorated at a steady pace until my diet was radically altered to eliminate dairy, grains, except brown rice, and simple sugars and fats. When I added supplements I stabilized even though symptoms are ready to continue the deterioration any time I don't follow my regimen.
I am really interested to read the dietary issue. How would you or where would you suggest I go for guidance on this issue. Thanks for your post. I am totally new here, Richard.
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Old 10-17-2011, 10:56 PM #10
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many thanks for your posting rama, i am interested in the actual diet, i know i feel much better when I change my diet but I need some guidance, who did you approach? All the best and please, keep posting, Richard.
Quote:
Originally Posted by Rama View Post
Rama Whitlock, female, 56
ALS symptoms appeared in 1977, it took another year to get dxd after the delivery a beautiful daughter. I deteriorated at a steady pace until my diet was radically altered to eliminate dairy, grains, except brown rice, and simple sugars and fats. When I added supplements I stabilized even though symptoms are ready to continue the deterioration any time I don't follow my regimen.
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