My 59yr old mother has been diagnosed with... - PSP Association

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My 59yr old mother has been diagnosed with PSP. Has extreme anxiety, along with other symptoms. Has anyone in a state legal to do so--

jrock777 profile image
11 Replies

looked into the use of cannabinoids?

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jrock777 profile image
jrock777
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11 Replies
snapper profile image
snapper

That's interesting, I have never seen a subject on the Forum go for this long without a reply.

I have heard of this being used for pain relief but no way of trying it as there is lack of huge profits for the drug companies in the UK.

Hi jrock777

Sorry to hear about your mum.

From what I understand, Cannabinoid (THC) has been shown to have possible benefits in Parkinson's (mainly with tremor and slow movements but not gait or stiffness) due to its ability to increase dopamine (and serotonin). It may, therefore, have a small benefit in PSP. Of course, dopamine is also a pleasure neurotransmitter, hence the reason for smoking pot.

It has been shown to have some benefits in depression and schizophrenia (due to the above neurotransmitter effects). Also in pain relief, and helping with nausea and vomiting when having chemotherapy.

Cannabis has been shown to have benefits in Alzheimer's because it is supposed to help remove beta amyloid plaques from brain tissue. Also reduces inflammation, that is a factor in neurodegeneration. It also assists with increasing acetylcholine (a neurotransmitter that is low in Alzheimer's and a factor in cognitive and memory problems).

I won't go into the long list of side effects and long term damage (which eventually turns benefits into problems, especially with cognition). There is still much research to be done in the areas.

As to the medico- legal use with respect to medical conditions like PSP, I have no idea! Perhaps those in other countries (I'm in Oz) may have more information!

The CurePSP site has some info of people using marijuana for PSP and ASL. Might be worth reading.

Cheers

T.

jrock777 profile image
jrock777 in reply to

Thanks for your reply. There are some interesting things taking place in this field here in the states. The THC can be almost completely removed so the patient doesn't get "high" they just get the benefits it may bring. Some strains that contain primarily CBDs with are now being given to children in liquid or pill format who suffer from epilepsy. I was hoping to find someone who had tried this for psp and could suggest whether the dosage should be primarily CBD or THC and in what %. Maybe someone will come across this thread later.

Thanks so much

jimandsharynp profile image
jimandsharynp

Haven't looked into it but I'd worry about the effects on someone with a brain problem. I know my own wife has difficulty creating cognitive thoughts and I'm sure it would become less on that drug. I've read opinions on giving alcohol to dementia patients (PSP is, after all a dementia disease). My wife has some pain but we treat it with over-the-counter drugs like Advil, Aleve, etc.

Jimbo

jrock777 profile image
jrock777 in reply tojimandsharynp

Appreciate your reply, but comparing alcohol and a high CBD low/no THC cannabinoids is like comparing apples and grenades. There is medicinal cannabinoids that have little to no THC.....you do not get high...at all. Its being used to treat children with epilepsy. My moms problem is not really pain, but more uncontrollable anxiety.

carolinesimmons profile image
carolinesimmons in reply tojimandsharynp

My husband has LOTS of problems but not with what I think of as dementia. He knows what's happening; he knows answers to many trivia questions (those about his life in particular); he knows what he wants to say - he just has a big problem saying it. I'm not sure how dementia is defined but I always thought of it as losing one's ability to make sense.

jrock777 profile image
jrock777 in reply tocarolinesimmons

Ironically, my mother has a masters degree and practiced as a professional therapist for primarily young mental health patients. So she fully understands what is going on and what her diagnosis means. But she has had chemically imbalanced depression for 30 years. We thought her symptoms were another bout of depression. But this time was different, the level of anxiety she endures is painful to witness. She was just recently diagnosed with PSP....who knows how long she has actually had it. Although she has minor gait problems and has experienced falls and broken bones....her anxiety is what prevents her from being able to even have a conversation or enjoy a moment. It's paralyZing. I'm hoping this thread stays active long enough for someone in a state that has legalized medical marijuana can comment. I have found some studies online but mm use is in it's infancy. Some ppl still think it's about smoking a joint and have no clue about strains without thc that contain high levels of cbd.

jimandsharynp profile image
jimandsharynp in reply tocarolinesimmons

I asked a neurologist why PSP is a dementia disease because the brain still functions, just slowly. He said that basically any disease that affects the brain (not tumors or strokes) is termed a dementia disease because it does, in some way however so slightly, affect the cognitive part of the brain. Alzheimer's attacks/affects a different part of the brain thus causes memory loss big time.

Jimbo

jimandsharynp profile image
jimandsharynp

The dementia caused by PSP generally isn't like Alzheimer's disease. Generally PSP patients are aware of what is going on right up to the end. They may not be able to speak but the memory of who you are etc. etc. is still good for the most part. The brain is functioning just very, very, very, slow. It takes them time to form thoughts so response to questions come slowly but they do come. This is my understanding from doing many days of reading everything I can on PSP.

Jimbo

jrock777 profile image
jrock777 in reply tojimandsharynp

My mother's brain activity currently seems to be functioning at an extremely rapid pace. Almost like she can't verbally keep up with her thoughts. But as far as we know, she is in early stages....so this fact may change to what you are describing. Although she may spout off thoughts quickly, they sometimes don't mesh with reality. She may be confusing dreams with actual reality....imagining events taking place recently that did not occur or occurred years ago.

It reminds me a little of how she responded to electro-shock therapy in the early 90's for her depression. After her series of shock treatments it was if as if someone had scrambled her memories. She would jump from different periods in her life and live them in the present. Sometimes talking to me about how she was pregnant (with ME!)

That was extreme....and her current symptoms are not as bad, but she did make up some long convoluted story about me to her nurses. But I am over 1,000 miles away and her story was about me being there with her.

Because of her severe depression, previous shock treatments, 25 years of taking the drug Nardil, her paralyzing anxiety and now finally her PSP diagnosis.....I don't really know for sure what's the cause of her symptoms.

But at this point, after having her try probably every pharmaceutical drug known to be used in this field.....Id love to hear about someone who has attempted to alleviate her crippling anxiety with pharmaceutical grade medical marijuana cannabinoids. Specifically, low/no THC.....high CBD content. I know its been done...there have been some studies, very minimal. Hoping this thread will finally fall on someone's lap who's been there or knows someone who has.

Many thanks for all the info and replies.

Jeremy

jillannf6 profile image
jillannf6

Hi I take an

Antidepressant nd. And anti anxiety meds - have done for years and way b4 nbeing dxd with PSP

I'm better with them than not -it's not,easy to,get the type,/ dose right but its worth persevering

Loll jilll

:-) xxx

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