Here are the contact details for Dr.Glass.......

http://neurology.emory.edu/Faculty/Glass.htm

......he may have some great ideas for 'collaborative' ventures? To have experience and expertise on board rather than out in the cold is always a good thing, IMHO.

At least it is nice of him to give his email (and I will see if he will reply) openly. Most try to hide even that kind of modern day tool.
Had some correspondence with another ALS expert who seem to shoot down the Ischemia, hypoxia concepts. My mind questions if they can really see them in pathological exams (like the way I keep asking if we can characterize a blood completely after it is out of the human body, how come they have not come up with an acceptable synthetic blood? Error in the approach itself?)

http://abcnews.go.com/Health/Wellness/lou-gehrigs-disease-patients-research-hands/story?id=16150103#.T46mgdWiZki

Story could use some comments. The ABC media wonks are counting clicks and comments ;-) ... and there is still much that needs to be covered regarding ALS!

http://abcnews.go.com/Health/Wellness/lou-gehrigs-disease-patients-research-hands/story?id=16150103

Wonderful Eric.

-Rob

"strict standards,..."
not surprising that whith such stupid comments they never found a cure; simply idiots!

This discussion blog may not be pertinent to this question, but anyway I am going to do it and on few others where there is lot of activity. Those who can share some light perhaps can make it as PM if necessary.
My daughter, because of frustrations on her part, decided to go global through Facebook and forcing us for a quick decision. We still cling on to to some hope what if it is not ALS and something else (and fear that we may end up regretting to agree with her decision in such a case) since we see many things unique in her. Let me post two specific ones and get the take from PALS and caregivers.
1. Look at the statement from Sandra Lesher Stuban, RN who wrote (in recent ALS newsletter etc):
Advice from the trenches: Top 10 list of equipment:
7. Heating blanket / Space Heater:
I am always cold because I no longer have the muscle mass to generate and maintain heat. My solution is to use an electric (heating) blanket on my bed at night and a space heater in my bathroom where I change cloths and shower. When I start my days warm, I feel letter all day long.
In our case it is exactly opposite: We have been keeping the temperature at around 61 degrees, because that is what she prefers and starts sweating if it is any high. She sits in front of the computer most of the time when awake and wears simple dresses, T-shirts etc. and no sweaters or anything.
2. I also thought that ALS folks do not feel pain that much having lost the muscles. Again she is different.
3. Sensory system and brain power: Her sensory system and intelligence have become great. She gets hurt with small things such as the tags on undergarments or wrinkles on T-shirts and she is not lying. She can spot an ant or a small bug on the wall 10 feet away and ask this guy who wears a glass with a power of -12 to remove it! Or she will point to one hair on a black dress or on her bare hand and insist on us removing it. She moved from a struggling medical school student, understandable since every body going there is intelligent and highly competitive to one with great scores in national medical board exams with minimal preparation and finished the degree in minimal time with all travels to Mayo, JHU etc. as the disease progressed. So, it is confusing.
I am going to raise it with our local Neurologist, but of course, he will have his standard answer (like I like only FDA authorized drugs!) Each patient is unique.
Thanks, OG.

Oh gosh. Where u got no pain in ALS is from someone who knows nothing about ALS. I'm in constant and severe pain. It comes from stiff muscles , cramped muscles, and effort trying to hold arms up, neck pain from head weight. ALS is nothing but pain.
I've been that way for 7/8 years. As far as hot and cold, people with ALS lose the ability to regulate body temp. It can be either way. I'm cold, and then hot. Hating blankets shut my breathing off. How, I don't know but they do. Tags on clothes run me nuts. Hurt like hell.
I must side with your daughter. You are being selfish trying to keep her around. That's the parent / loved one taking over. People with ALS KNOW when it's time and they had enough. Don't keep her around because that's what u want. I'm sorry, but she must have the final say. No one should make that decision but her. She's in a living hell. I know . I'm there's too.

OhGosh,

Please reconsider your stance on secrecy. It can help all of us if we know what we are each trying. I as say in my signature "If it is done in secret, it is done in vain." The world will lose that important information. The best way is to record your daughter's FRS and FVC scores in patientslikeme and when she started taking this medication.

A case in point, one of the subjects of the NP001 trail was taking steroids while on the trial. That lead to his very premature death. But until his sister found out and told us on this forum we all would have thought that his death was due to NP001, but more importantly this information can help persuade others to stay away from steroids. If this information was kept secret his death would have been in vain but if he made this information public this tragic event could have a very positive effect and even save many lives.

The last thing the ALS community needs it to keep making the same mistakes over and over again, and the only way we can keep this from happening is by being very open about what we are trying and how we are doing.

Thanks,

Ben

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If it is done in secret, it is done in vain.

WHICH risk?
everything here is anonymous!