Medical marijuana

[Nikki J]

In one of my facebook groups the admin is asking if anyone who has a definite diagnosis and is taking medical marijuana AND has documented improvement in their medical record would be willing to be put in contact with researchers. I know there are people here who have seen benefit not sure if your records reflect it?

If anyone prefers to pm me please do

 

[GregK]

Documented improvement? I've seen no PALS claim such.
Feel free to give them my email.

 

[Nikki J]

Yes I don't know anyone here who has said their medical record reflects it. This was being asked of all forms of MND
The request was for improvement. I am going to ask if for ALS they would take documentation of stability or slowing of progression shown by ALS FRS or other. I am glad that some researchers are apparently trying to look into this

 

[GregK]

Absolutely, long overdue.

There is a closed fb group, Cannabis Oil Success Stories.
I posted there and found zero other PALS.

 

[notBrad]

Feel free to put them in touch with me. I don't have documented evidence in my records but do have some info (weight gain, reduced spasticity, etc...)

 

[Nikki J]

Stability or slowing documented would do it. Apparently this is for a paper and will have cases from hsp, pls, and someone who is not clearly one or the other but they specifically want to have at least one person who is definitely ALS
Let me know by pm. It turns out the researcher is well known and respected

 

[GregK]

Already had an email. They're not wasting time.

 

[affected]

This is why I've said here a few times that if PALS want to try anything they should document it all really clearly.

If someone says 'I feel better since I started taking MM' that tells us nothing really.
If they record what they take when, and where they are at, they have something to show any researcher, or even another PALS who is interested.

Nikki, I had a CALS recently on another group who posted some great video of her husband talking before and after some MM. I can trawl through and find her and PM her to ask if they are interested? It was a VERY noticeable difference.

The thing is, if something like this is being used, that long term careful documentation is what becomes really valuable. We know it's not a cure, but if it gives a measurable symptom relief of slowing, we all have something to go on, and states where it is illegal can be lobbied for at least medical use.

 

[Nikki J]

Yes if you can. Thanks.

 

[affected]

OK I've posted there Nikki, but you may need to send me the details I will give them if anyone puts their hands up. I've asked for the person who posted the video as well as anyone else there that are using MM and have anything they could contribute in the way of data.

Greg I hope you can help them on this research I think it's so important.

Chris did smoke some (not the best way at all for a PALS I know). It did make him happier and he felt better for the relaxing, but no change in symptoms and because it was high THC we had to ensure he wasn't going to want to do any kind of standing transfers afterwards ...

 

[azgirl]

You can give them my email as well, Nikki. I use it every evening as a sleeping aid, and I know that it gives me about five hours of relief from spasticity and cramping. The doctor at clinic always asks about it, but I don't think there's real documentation and my file there of any improvement in symptoms. Been doing this since January and wish I had started sooner. Happy to see that more research in this area is taking place

 

[azwxman]

Once again, no documented improvement, but you can give them my info, too. I've been using it regularly for a year. Reduced spasticity and cramping has become almost non-existent.

Mark

 

[Nikki J]

They think they have what they need. Thanks all. Our PALS/ CALS are the best!

 

[4tloml]

These are links to the videos mentioned above that we had wanted to share here way back in March when we took them. Hope they work this time.


Before:

https://www.facebook.com/cindy.nicolaysen/videos/10207590964075901/?l=1991817003393870582


After:

https://www.facebook.com/cindy.nicolaysen/videos/10207591004876921/?l=8054869960441647773

 

[affected]

4tloml - I had to watch both again twice even though I'd watched them several times before