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Thread: Progress with Ampyra - Thank you Dr. Wise

  1. #1
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    Progress with Ampyra - Thank you Dr. Wise

    OK - I have kept quiet for a about a week, but David had started Ampyra a week ago yesterday. It was a very long and hard process but he got the prescription and started in 15 minutes after the Fed Ex guy dropped it off. This stuff has been absolutely wonderful for David.
    David was diagnosed with MS 4 1/2 years ago on Oct. 31, 2005. He had one attack in July 2005 that went away and all was normal, then Oct. 2005 one major attack that effected everything and left him dependent on a manual chair that was pushed by me. He could not see, eat, breath, talk, walk or use his left arm. He could not control bowels or his bladder. 4 1/2 years later he has improved in that his vision is better, not good but better, he can eat, he can talk and he can breath on his own. Bowels are controlled with bowel program, bladder - suprapubic cath. His right leg is moving but his left leg not really. He is in a power chair that he controls. After one week with Ampyra he has stood 6 times. His speach is so clear, he is not napping at all during the day, his spirits are so much improved. He is still not walking and we don't know that it will make him walk but...the outlook is so much better with Ampyra. The first time he stood since Oct. 2005 it took me and both of our daughters that was about 2 years ago, we had a death grip on him and ended up giving him one heck of a wedgie. This week though, 3 pills later, I got behind him as he was sitting on the edge of the bed completely stable (which he couldn't do before) and lifted, his knees locked into place and he stood. Then 3 days into it I put him in a standing sling on our ceiling lift, he stood up and then when he tired (about 30 seconds later) the sling took over. Yesterday our youngest daughter and I got on each side, he put his arms around our necks and stood. Not much weight on us at all. Today he done the same thing three times with me and our oldest daughter. Today he stood for about 1 minute each time. I am so thankful for this drug..anyone with MS ambulatory or not....research it and if at all possible try it. Thank you Dr. Wise for helping me understand this drug better and also thank Acorda Theraputics for me. ~~ Lisa

  2. #2
    I am so happy for you!!!!!!

  3. #3
    Sounds good; keep going!!!

  4. #4
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    Keepingon and LindaT - thank you, it has been wonderful. His goal is to walk our daughter down the isle in November

  5. #5
    Quote Originally Posted by MSWIFE1 View Post
    OK - I have kept quiet for a about a week, but David had started Ampyra a week ago yesterday. It was a very long and hard process but he got the prescription and started in 15 minutes after the Fed Ex guy dropped it off. This stuff has been absolutely wonderful for David.
    David was diagnosed with MS 4 1/2 years ago on Oct. 31, 2005. He had one attack in July 2005 that went away and all was normal, then Oct. 2005 one major attack that effected everything and left him dependent on a manual chair that was pushed by me. He could not see, eat, breath, talk, walk or use his left arm. He could not control bowels or his bladder. 4 1/2 years later he has improved in that his vision is better, not good but better, he can eat, he can talk and he can breath on his own. Bowels are controlled with bowel program, bladder - suprapubic cath. His right leg is moving but his left leg not really. He is in a power chair that he controls. After one week with Ampyra he has stood 6 times. His speach is so clear, he is not napping at all during the day, his spirits are so much improved. He is still not walking and we don't know that it will make him walk but...the outlook is so much better with Ampyra. The first time he stood since Oct. 2005 it took me and both of our daughters that was about 2 years ago, we had a death grip on him and ended up giving him one heck of a wedgie. This week though, 3 pills later, I got behind him as he was sitting on the edge of the bed completely stable (which he couldn't do before) and lifted, his knees locked into place and he stood. Then 3 days into it I put him in a standing sling on our ceiling lift, he stood up and then when he tired (about 30 seconds later) the sling took over. Yesterday our youngest daughter and I got on each side, he put his arms around our necks and stood. Not much weight on us at all. Today he done the same thing three times with me and our oldest daughter. Today he stood for about 1 minute each time. I am so thankful for this drug..anyone with MS ambulatory or not....research it and if at all possible try it. Thank you Dr. Wise for helping me understand this drug better and also thank Acorda Theraputics for me. ~~ Lisa
    Dear Lisa,

    I am so glad that it is dong something for David. I am sure that Acorda will be very happy to hear about this.

    Wise.

  6. #6
    This is so wonderful to read. Congrats to you guys.

  7. #7
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    Wise, if you read this could you please help me understand this a bit better? Muscle atrophy? If I understand correctly that is when the muscle is completely gone. How do you tell if its completely gone? I have put a 5 lb and 2 1/2 lb ankle weights on Davids ankles this last week and he has been doing leg lifts trying to regain some strenght and hoping that would help in his standing. Also someone else wrote elsewhere that he should not be taking any muscle relaxer as this would descrease the muscle capabilities as well. He has been taking Tixanidine 4mg 3 times a day to help with spasms, should he quit taking that as the Ampyra has actually loosened his legs up pretty good and he isn't having spasms.

    Scaper - thanks..I can't tell you how exciting this really is. I don't want to go to work because I am afraid I might miss his first step, just like when the kids were little and learning to walk.

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