I've notice a little progress!

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schavez500

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Joined
Jan 15, 2011
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47
Reason
PALS
Diagnosis
07/2010
Country
Uni
State
TX
City
Rio Grande City
I just wanted to share this:

About one month and a half ago I was not able to stand up so I basically stayed in bed and wondered is this it? I started doing some research and found the sit to stand machine and a few transfer boards..

When I received my sit to stand I had to use the upper body sling plus a buttocks sling and I could not stand up all the way.. I've had the machine for about a month now and slowly, I feel my legs have gotten stronger and now I am only using the upper body sling and I am standing completely straight up for about one minute and a half. It is the first progress I've experienced and just had to share...
 
oh and forgot to thank the forum community - JellyCat for feedback on the sit to stand.. sooooo glad I got it..
 
what do you think the reason for getting stronger is
 
That is wonderful news! I'm so happy for you.
 
I think its because I when I could not stand up, I still had strength in my legs but I could not lift my self to stand up, so when I stayed in bed for one month legs atrophied before they should. By using the sit to stand lift I was able to use my muscles and gradually gain some of my strength back. My goal is to keep as much of my muscles as possible so when the NP001 drug comes out in Augus... I pray I am able to do this.. and have some chance. of something.
 
What is the NP001 drug. Never heard of that.
 
I'm delighted for you that the sit to stand has helped. That's great. We had to move quite quickly to a full hoist because of leg & trunk weakness but for a few months after that my pals was still able to stand in her physios secure standing machine. Do enjoy getting up & about! Have you tried out the pool?
 
I have not found a pool with a lift.. so still waiting .. I may have to build my own.. NP001 is a new drug that has huge promise. It is supposed to stop the progression. They are in Second Phase Trials and as per my neurologist it should be out in August. A similar drug was already tested in Thailand with great success. The only problem is not everyone can take it and I hope I can.. not sure why or what the criteria is.
 
Wow. A stopping of progression, that would be a breakthrough. Do keep us posted.
 
Clinical Results from Phase 1 NP001 Study in the Treatment of ALS

by Nishant on November 30, 2010 · 0 comments

in ALS,Research

Looks like there will soon be an alternative to Rilutek. I hope this drug does well in phases 2 & 3 of the trail.

A double-blinded, placebo-controlled, Phase 1, single ascending dose study was performed to assess the safety and tolerability of four single intravenous doses of NP001 in a total 32 individuals with ALS. The primary objective of this study was the establishment of safety with patients being assessed at select time intervals for seven days post dosing. The secondary objective was to investigate the effects of NP001 on an ALS disease-associated blood biomarker pre- and 24 hours post dosing.

Single dose safety and tolerability of NP001 at four different dose levels was established in ALS patients. Importantly, following a single dose, there was a dose-dependent, statistically significant improvement in blood levels of the biomarker thought to be involved in ALS disease progression; this is a first in ALS.

Robert G. Miller, M.D., the study’s principal investigator and Medical and Program Director of the Forbes Norris MDA/ALS Research Center, commented, “NP001 appears to have affected the level of a biomarker directly related to ALS pathogenesis in a dose-dependent manner. This is extremely promising and is virtually unprecedented in ALS research. In addition, the safety profile of NP001 is very reassuring and gives us confidence going into the Phase 2 clinical study.”

[From Neuraltus Pharmaceuticals]
 
So sorry for wrong info.. I thought it was going to be released this Aug.. just heard back from Sr. Researcher on NP001 and "We will probably start the phase 2 trial of the NP001 in April. I have not heard this target release date you mentioned. I don’t think this is correct. The phase 2 trial is 9 months long and then there would have to be a phase 3 trial before the FDA can approve it for market release."
 
About the sit to stand and "strengthening: Another possible explanation is that you are getting very tight from not standing, and that your hip extensor and leg extensor standing muscles were not strong enough to counteract the tightness, or increased tone in you hip or knee flexors. If that is true, for those of you that do not have a sit-to -stand device, if you can tolerate daily stretching of the hip flexors and hamstrings, you might experience some of the same benefits..

Hal finds standing and holding onto his walker is more possible right after a stretching session. Ann ("Abbas child") also mentioned that having Phil massage loose, weak muscles in the back of her neck while stretching tight ones in front, seems to help with head position - The combined stretch/massage might also help with standing position..
 
We did the Phase 1, and are on the list for Phase 2. Will keep everyone posted.
 
that would be nice sadi
schavez thank you for infomation
 
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