PSP Association
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Cannabis?

It seems that every time I write about the successful use of cannabis medically with my husband to treat his "sundowning" problem, the post disappears? Am I being censored? And if so, are people really that concerned about cannabis' medical uses?

Jill

Costa Rica

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Product needs to be high in Cannabidiol without too much THC , or there's a risk of adverse effects such as paranoia . Medical marijuana , pill form would be best .

Take care , best of luck, etc, in the coming New Year !

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I hope you are not being censored- it would seem unlikely as there are lots of medical uses for cannabis. By the way what do you mean by "sundowning" ? I am intrigued .

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Hi Jill, I hope you are not being censored! All "drugs" were designed to help people, not just for some people to their kicks. Cannabis is a natural product and if your husband gets some benefit from it, I say, enjoy. I too, would like to know what you mean by "sun downing". The only thing it means to us, is in South Africa, it's rude not to have a glass in hand and enjoy the sun set!!! Unfortunately, here in grim, dark England, if the sun does decide to show its face, it sets about 4.00pm, a bit early, even for me!!!

Lots of love

Heady

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Here's my opinion on Cannabis. If you read/Goggle anesthesia and old age you will find articles that talk about the dangers of undergoing surgery where anesthesia is used if you are an old person. Confirmed by my BIL who is a anesthesiologist nurse. These articles talk about how people with dementia and brain diseases and even just elderly often are affected by anesthesia in a bad way and never get back, mentally, to where they were before the surgery. For that reason I would think that Cannabis for a PSP patient with brain issues would not be a good thing. Just my thoughts. The brain of PSP patients struggles enough without adding additional factors to the mix. IMHO jimbo

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I think you should consider not to post if you only "think" something is good or bad for a specific condition, and let those who have experience post. Cannabis is actually a blessing in comparison with the useless pharmaceutical products that have been prescribed and didn't help, had side effects and do not serve any sound purpose.

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A couple of observations from my "sample" of one:

My husband had smoked cannabis in college, so he is familiar with it. Immediately after inhaling three puffs of the vapor, he transforms into a happy friendly, relaxed person. This lasts for about 2-4 hrs. and as his PSP worsens it lasts for shorter periods of time and does not have the strong effect of clearing up cognition.

I am a research clinical psychologist and have spent my work life working with psychotic and demented patients I am familiar with the psycho-neurological tests and I have given him several tests for dementia and balance. I have documented this with video and interviews. It has been witnessed by a range of people with different options and attitudes about cannabis. They all see the same thing and are all amazed at his transformation with this small amount of drug.

He has smoked now for 4 of his 8 years of PSP. Only very small amounts, 3 inhales (about 1/4 of a teaspoon) from a vaporizer, not smoked. This is high quality cannabis not street cannabis ($200 a 1/2 oz!). It is the only thing that controls his "sundowning". (Sundowning is an Alzheimer term for the worsening dementia and agitation that occurs in many dementia patients with the setting of the sun or late afternoon.)

Bob's confusion and agitation was extreme and his suffering and fear was impossible to watch without doing something to help him. Everything we tried had worse side-effects. (minor tranquilizers, anti-depressants, wine, rum, music, car rides, massage, even prayer). The cannabis almost instantly changes him completely. People who have observed this say it looks like a miracle to watch him literally change back into a recognizable human. His grimace disappears; his vision clears, he opens his eyes, laughs, says he feels good. (always says he is horrible when asked).

His working memory is no better and certainly no worse. Although 2 years ago it did help his working memory.

I have no idea why this helps him and no idea if it would be useful or harmful to others. His doctors have been completely not interested, patronizing, pompous and moraling about the terrible effect it would have on his "short term memory". HE HAS NO SHORT TERM MEMORY.

To see Bob happy and relaxed is a blessing. I know it is illegal..but anything that helps him is worth it. I don't think that two old people using a tiny amount of cannabis for medical purposes would be worth a huge court case or time in prison. So I really don't worry. I am not advocating its use . I am only passing on something that has made this awful disease more manageable. I hesitate to tell doctors now, but I feel obligated to pass on any information that might be of use for others.

I hope I haven't offended any of you. But it is worth it to me to pass on a useful bit of information. Since he has started using cannabis we have eliminated (with doctor's permission) all of his expensive anti dementia drugs and cut his seizure medication in half. He now only takes anti-seizure medication and nothing else. Our medication expense used to be about $1000 a month now it is $175. And of course the cannabis (about $50 a month.)

Jill

Costa Rica

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You tell them honey..I am 62 years old,have used cannabis ,off and on for most of my life,unless I for saw trouble..You hit the nail on the head..Add up the cost,of all that worthless medicine,he is no longer on..!!Big Pharma,stands to loose a lot of money,if this medicinal plant,is allowed to be legalised..It has a use for almost everything..I used it for anxiety,pannec attacks and sleep...,later for my pain..I spent 10 years,on a night mare addiction,I didn't even know I was on,till I quit taking their pills..AKA (poison)....I spent two years,weaning my diseased brain,off these drugs..You keep doing what you are doing,for your husband...I commend you for your spirit and knowledge ..Please share your story.There are so many people out there,who can benefit from this..The advocates of this medicine,need you..Thank you,,Happy New Year,and God Bless you and your husband..This is Gods medicine,mans is not good!!..Come to face book..look for carol applegate cripps....I would love to hear from you,and to know how your husband is doing..!!

E_MAIL pleasure52@live.com

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My husband (PSP since apx 5 years) smokes a few puffs when he is low and - as you describe - immediately transform. On a daily basis he takes oil, without which he is paralyzed and has great difficulties swallowing.

With the oil, he speaks better, has better appetite, easier to swallow and feels better. The oil contains THC but the doses are low enough to avoid "highs"

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Hi CharlotteH,

My mom is a PSP patient and nothing has worked for her. We would like to try alternative forms of medication, so could you provide more detail on the oil that your husband uses? We're in the US.

Thanks!

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Just a bit more information: My husband is 72; he has had PSP for 8 years, he still walks. He is 100% dependent, demented, no working or short term memory to speak of. He is confused 100% of the time. Recognizes me but no one else and is disoriented all of the time. He is constantly agitated and walking. He cannot sit still. He no-longer falls but in the first 2 years of PSP he fell backwards regularly and had lost a significant amount of weight which he has since regained. His father died of PSP at 73 in 1990. His mother died of Alzheimer's as did both sets of grandparents.

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Jill,

I think if it is working for Bob, you should certainly use it. In the US it's only legal to use it medically in a few states, not in the one we live in. Nobody at the moment can cure these degenerative brain diseases, and most of the time can't even treat the symptoms. So if you found something that gives your husband some relief, then good for you. Not sure if it would help everyone in their different circumstances, but I'm glad it's working for you.

lynn

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jill, I HAVE ASKED THE SAME QUESTION. DID YOU HAVE A GOOD RESULT W/ CANABAS ?. I HAVE ASKED MY MEDICAL DR'S. & THEY SAY THAT THEY CAN'T PRESCRIBE IT, BUT IF I FIND SOMEONE TO DO IT THEY WOULD SAY, IF IT WORKS THEN OK TO USE IT. HOPE THIS HELPS. I DON'T THINK THAT WE ARE SENSERD UNLESS WE SAY ANYTHING OFFENSIVE R REAL NASTY. GENA USA

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Yes, absolutely...it was the best medicine for Bob. He would smoke just 3 inhales using a vaporize and it was a miraculous transformation. This was during the first 7 years of his illness. I had people watch and even the anti-cannabis people believed it and found it amazing. At this point it helps to calm him down and make him happier but it doesn't last for more than 1 hr and leaves him more confused so I have stopped using it with him.

I also think it may not work with someone who is not familiar with marijuana. The first time someone smokes marijuana they usually don't feel anything and it takes a bit of experience sometimes for them to "notice" that they are high. One of Bob's doctor's tried it on his father. I had made him some marijuana butter so he didn't have to smoke it. and there was no effect. This man was also very non-responsive and I think the marijuana might be best on someone who is more awake and agitated. Also the quality of the marijuana seems important...but not that important.

I'd be happy to write to you doctor if that would help. I am also a licensed clinical psychologist and have much experience with demented patients.

Let me know if you have any questions.

Jill

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To be honest Aunt Bev loves taking a few hits off a joint usally about three hits is all she smokes every chance she gets it not only relaxes her but also she speaks more clearly full sentences but is not for everyone , me kn ow cant stand the smell.

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My mother had Alzheimer's and sadly passed nearly 2yrs ago.

And I have type6 ataxia.

If it wasn't for her giving up smoking because of heart problems I would have tried to get her to try it,I might even try it myself.instead of people criticizing its use they should be glad you've found something that works for him.

So to hell with those people and carry on doing what your doing and I hope it continues to help

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