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paul-uk
7th December 2011, 15:34
Been reading up on the many health benefits of marijuana today, and have found a video about a woman who has stopped the progression of her MND by smoking marijuana (cannabis). She's had MND for 22 years, and can still speak.

http://www.youtube.com/watch?v=8tqpA5Xor8w

What's you opinion on this?

I'm arranging to buy some for a trial run, but need to ensure it's good quality.

Batty
7th December 2011, 16:07
Hi Paul, My opinion on this is that when you reach my stage of MND(breathing through a ventilator at night) you would not even consider smoking, so if I was you I would not sacrifice my lung function, Incidently most people with MND die from chest/lung infection.
Regards non smoker Mark.

MattJ
7th December 2011, 16:44
Hi Paul,

The following member on ALS TDI believes it has slowed their progression. Might be worth sending a private message:

http://www.als.net/forum/yaf_profile35358.aspx

If you search for "Marijuana" on ALS TDI you will see there has been plenty of discussion about this.

http://www.als.net/forum/yaf_search.aspx

Also check out the following:

http://norml.org/library/item/amyotrophic-lateral-sclerosis-als

Countyboy
7th December 2011, 17:13
Hi Paul, I have been fighting MND for 14 years and can still speak though I have never smoked marijuana (cannabis). This woman, like me, has a slow progressing form of the disease. I have to admit that I was in a wheelchair before I was diagnosed but, that was because I was falling over a lot. My advice to you is not to try it, it will not help your lungs, cost a lot of money, and could give you a police record.
Best Wishes,
CB.

icingoncake
7th December 2011, 18:32
I found a thread I added to a while ago now. There is some info from the mnda research info in it here

http://forum.mndassociation.org/showthread.php?398-Does-Cannabis-help-with-living-with-MND

this is what was said but i think we were talking about a tablet but using the same active ingredient

Robyn from the forum admin got this info for the thread

You might find this info from our research team useful:

Cannabis is a complex plant which contains over 400 chemicals, 60 of which are ‘cannabinoids’. In 1964, the active ingredient of the Cannabis plant was found and named ‘THC’ (Tetra-hydro-cannabinol) which is an active cannabinoid.

Since then, many synthetic THC chemicals have been made to try and reproduce the medicinal properties of Cannabis, but without the additional chemicals or damage that comes from smoking it. In 1992, a synthetic THC tablet was licensed for the treatment of AIDS patients and later, for an after treatment for people who have undergone chemotherapy to manage side effects. Earlier this year, ‘Sativex’ which contains THC was licensed for spasticity control in Multiple Sclerosis when other treatments are ineffective. From the MS Society website, I found out that it will not be reviewed by NICE due to its cost (equivalent to 11 a day) and so its use is dependant on the local PCT as to whether people living with MS can use it.

Sativex has not been tested in people living with MND. It has also not been tested in older people and so its potential effects are not known.

There has however, been some research into the use of THC and MND. THC has been used in mouse MND models to investigate whether it can protect the neurones. Dr. Mary Abood has investigated this in mice with results demonstrating that if THC is given to a mouse model of MND, then the symptom onset is postponed and longevity is increased. However, it is unjust to compare such an experiment with humans directly for many reasons. The first reason is due to the fact that the mice had been taking the drug for a much longer time period than humans, as it would be impossible to take THC before the onset of symptoms. The second reason to consider is that although mice are anatomically similar to us, we are also very different in the ways that our bodies function. This has been demonstrated in various clinical trials whereby the treatment has shown to be beneficial in mice but not in humans. Therefore, the only true way to determine whether THC is beneficial in humans is through clinical trials.

In 2002, the results of a clinical trial using a synthetic THC tablet called Marinol were given at the 14th International Symposium on ALS/MND in Melbourne. They conducted a small clinical trial which showed that Marinol demonstrated a slight benefit for insomnia, appetite and muscle stiffness of MND but did not show any improvement in the progression rate.

In 2004, Gregory Carter conducted a survey on Cannabis use in patients with MND. He reported that Cannabis was ineffective in reducing difficulties with speech and swallowing, he also indicated that cannabis may be moderately effective at reducing symptoms of appetite loss, depression, pain, muscle stiffness and drooling.

THC is now being investigated clinically to determine whether its function has a beneficial effect on the symptoms of MND. At the 2008 19th International Symposium on ALS/MND, which was held in Birmingham, a talk was given on a recent trial in the Netherlands where the effect of THC was measured for the control of cramps. Overall they found that THC did not control cramps but that at the quantity given was safe.

Although some mouse studies have shown that the use of THC can positively delay the onset of symptoms and longevity, clinical trials have not reiterated these results in MND to date and therefore the use of THC as a treatment has not yet been scientifically proven. Due to THC being a derivative of Cannabis, it is still seen as a taboo subject by many researchers due to the implications of using a derivative of an intoxicating, illegal drug. Therefore there is little research into synthetic THC in MND (Pubmed gives only 4 results when searching “cannabis amyotrophic lateral sclerosis”).

paul-uk
7th December 2011, 19:10
Thanks for the replies so far, there have been some good points and issues raised.
I asked my neurologist his opinion on marijuana and whether he could prescribe it.
He said in his opinion it would help with a lot of the symptoms, but was unable to prescribe it. He didn't say whether it would slow the disease.
But it seems to slow it in mice...

Writing in the American Journal of Hospice & Palliative Medicine in 2010, a team of investigators reported, "Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease."

I agree, smoking it might not be a good idea, so I intend to vapourize it and breath in the vapours.

Surely it's gotta be worth a go.

pete
7th December 2011, 19:44
Hi Paul

Well i can give my side to this ,having smoked all my adult life ,something i am not to proud of by the way ,i have to admit being in a similar position to yourself ,i ask this firstly have you ever smoked before if you have you know how it can affect your life ,secondly if you have not ,considering the MND aspect and the prognosis on that , is it that damaging to try anything, and surely if it works, it would not take that long to see any benefits or negative results ,i think you and i know as do others,,time isnt on our side ,but from my point of view if it works for you ,then fine its your life your choice , What i can say smoking a pipe is one of my little and few enjoyments now ,no one has ever said give it up since my diagnosis ,i think maybe in an ideal word, and being younger ,i would give it up ,but right now all things considered ,that first puff in the morning helps me with the cough relfex so for me at the moment as a smoker ,do what you need to, anything is worth a try, the idea of vaporising it can only be less harmfull so good luck and let us know

Regards
Pete

wheelchairking
7th December 2011, 20:20
Hello Paul-uk
I used to smoke cannabis in the sixties and can still remember most of that time,I have never actually given it up, but with the responsibilities of adult life I gradually let it go and I haven't had any for 35 years or so. I don't know whether you can still eat, but if you can, what you could do is put some in an ordinary cake/biscuit mix and you won't have to inhale anything. Same effect.
Thanks for your post. I have a friend with MS which is a disease where it has been proven that cannabis eases the symptoms. He smokes it regularly and says it does help him. I'll get some through him and even if it doesn't help at least I'll have a few mellow evenings listening to my old hippie records. I hope it works for you.

elle
7th December 2011, 22:25
Hi paul-uk,
the reason they won't prescribe cannabis tablet form is because it is too costly for nhs,that was
what i was told when i asked my g.p for it. X elle x :)

paul-uk
7th December 2011, 22:58
Hi elle.
I'm going to try my doctor for some next week, but from what you say, I'm not holding much hope. Apparently, it costs the NHS 11 per day to prescribe these to MS, AIDS and cancer victims. Not a huge cost when compared to some of the ongoing medicine costs.

Robyn Copley-Hirst
8th December 2011, 09:58
Good memory, Jenny. The research quote Jenny mentions was posted in the earlier thread she's linked to.

I'll just repeat what I said then so this thread can carry on smoothly in what can be seen as a grey area for conversation:

My advice, if you do use cannabis, is not to publically say this, as it is still illegal. If you do state this just be aware that it is completely public. Private messages are, of course, completely private.

On the public forum do feel free to discuss possible benefits you may have heard or know of, if you feel there are any, and also free to discuss the law as it stands and any changes you may like to see.

Basically the only thing we’re not allowed to do is to encourage others to break the law (http://www.cps.gov.uk/legal/h_to_k/inchoate_offences/#a01)... so don’t give out any ‘contact numbers’ you may have acquired or publically tell others to try it! This is simply because it’s illegal for anyone to encourage someone to commit a crime. Anything else you can talk about to your hearts content and please feel free to do so here!

The drug may be illegal but the topic isn't.

I hope this clears up any grey areas and lets you all get on with the thread.

Best Regards,

Robyn

Batty
8th December 2011, 11:01
After viewing Paul-uk's link to youtube video I am now convinced it does not help!

paul-uk
8th December 2011, 13:05
I appreciate your views Batty, but with the greatest respect, surely you can't blame me for trying. Doctors and scientists have know about MND for the past 175 years, and what have they done for sufferers? The very best they can offer is a very questionable drug (Riluzole) which MAY delay the inevitable by 2 or 3 months, whilst it damages your liver.
If it's a choice between some hope and no hope, I know which route I'd take.

Batty
8th December 2011, 13:17
Hi Paul, My views are purely anti-smoking based on eight days which I spent in a respiratory ward earlier in the year, 90% of the people being treated were smokers with self inflicted problems(I was there due to my diaphram muscles weakening due to MND).
I am absolutely shocked at the amount of young people smoking today. The one thing we cannot afford to do is damage our lungs.
Regards Mark

Mr-Tumble
8th December 2011, 14:21
Well i fancy a great big spliff now as any thing is worth a try if it can help slow it all down

Plus it is cheap if you know where to go

elle
8th December 2011, 22:25
Hi Paul,
hope you have more luck than i did,it will be interesting to know how you get on, as i think a lot has to do with
what area you live, as some pct have better budgets than others. take care x elle x :)

peepyh
10th December 2011, 17:19
Hi Paul

I had the same idea - not necessarily to improve longevity, but to help with muscle cramps. If you don't want to smoke it, you could add it to cakes or food, or soups? Personally, I think if there's a chance of it helping, or at the least cheering me up, why not? Like with other drugs, it's a question of making an informed choice for yourself.

I'll let you know how it works for me. Paul

Z3 Driver
12th December 2011, 23:23
whilst in Amsterdam end of sept i had some and loved it, i did fall over afterwards though. So only advice id give is to sit down first...

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