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  • Pam- i am sorry to hear that larry didn't get in study. I am in week 3, my guess is i am on the placebo. I am no longer walking but can still transfer. I was also in ceftriaxone and actually taking the drug. Progression still continued. Based on week 0 results, i am trying to finf avaiability of the cyberkinetics {sp?}cy 4026. Either compassionare script or out of country. No luck yet. Fyi, i did order a transfer swivel plate. You stand on it and can spin and transfer from bed to wheelchair. You need a grip belt and someone to help you maintain your balance. 18" dia about $80.00
    Hi Randy, saw your post about the trial. So glad you got in. Larry didn't meet the SVC. His was 59% can you believe it??? Had to be above 60% I feel this trial promising for the muscle strength. Hope it works for you. Are you still walking? Larry in a pwc now. Voice and swallowing still decent. So weak and fatigued most of the time. Can still transfer but that is about it. Please let me know how you are doing. I really care. He was dx in July 2009. He was on the ceftriaxone placebo. All I know is in Sept he walked in to get the Hickman taken out and now 6 months later can no longer walk. Prayers to you. Larry and Pam Carr
    New drug study. I have not posted anything for several months. I participated in the failed ceftrixione study. Now I am in the clinical trial for CY 4026. This is a new drug testing muscle strength. I qualified for the study and am in "Week 0". During week 0 everyone receives the drug, a pill twice a day. After week 0 you are randomized with a 50/50 chance of taking the drug or a placebo. Today is only my fourth day, so I am hesistent to be too optimistic. However it seems to me that the fatique in arm is less and my balance is more stable. Is anyone else participating in this trial? If so what is your opinion.
    Hi Randy, thanks for the update. I requested you as a friend here on the forums. A wealth of information here. Larry too was diagnosised about 3 years ago with weakess starting in his right hand. Probably had a year before diagnosis. Has clinic tomorrow. He continues to weaken also. He is starting process for pwc. Such a sick feeling and such heart break. Please stay in touch. Prayers to you and your family. Pam
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