Alternative treatment : Hi All, My mum has... - PSP Association

PSP Association

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Alternative treatment

EnglishPointer profile image
8 Replies

Hi All, My mum has PSP (previously diagnosed Parkinson's). The last six weeks have seen a very rapid determination in health. She is medicated but I am writing to ask if anyone has any knowledge about/experience of alternative medicine such as LSD (obviously not as a recreational drug!). There seem to be some recent reports from the states of it being beneficial.. Thank you in advance.

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EnglishPointer profile image
EnglishPointer
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8 Replies
EnglishPointer profile image
EnglishPointer

*deterioration not determination!

AnneandChris profile image
AnneandChris

Hello there

I'm so sorry your Mum has this diagnosis, sadly there can often be rapid deteriorations followed by plateauing. There have been communication on here in the past about using CBD oil and if you search on here you should be able to find the links.

Sadly, there is really not any medication for PSP only some which help alleviate specific symptoms such as excessive saliva or pain and there comes a time when oral medication becomes impossible to administer.

Hope this helps

Keep on keeping on

Anne

David750 profile image
David750

Hi Englishpointer, so very sorry to read of your situation. Responses to alternative medicines are very subjective. Some like myself have seen a response but many others not so. There is no money in these alternatives so no independent research.I gave my wife Turmeric with ginger & pepper primarily for digestion but was told it improves cognition, though who can tell, I just hoped it did. I also gave her 15% CBD oil (5% was too bitter she said). I noticed a small improvement in speech, mobility & swallowing, so did the carers in the first two. Increasing to 20% gave no improvement. My own view is that the earlier it is given the greater the response.

The medicines did not extend my wife's life but I feel there was less stress - perhaps a combination of both.

Alternative medicines are expensive and there is no guarantee of a benefit.

Medical cannabis is not available in the UK, but a research paper from Brazil does demonstrate a significant response in mobility, speech & swallowing in a lady with PSP.

LuisRodicioRodicio profile image
LuisRodicioRodicio

Hi EnglishPointer!

To my knowledge there is no treatment for PSP.

Palliative treatment only:

1) To control depression.

2) To regulate insomnia.

3) To control the remarkable variety of symptoms that accompany the course of the disease.

4) Some use CBD Oil.

These are our experiences and information from other colleages of this chat:

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6.5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of apple sauce or similar... this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD (Cannabidiol) Oil (20/1-CBD/THC) via sublingual, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :

karger.com/Article/FullText...

I have freely bought CBD oil (20/1) in the U.K.

Hug and luck.

Luis

Red1990 profile image
Red1990

I can't speak to your LSD question, but would encourage one to investigate any rapid deterioration in condition for seemingly asymptomatic infections. Also, consider any changes any meds including OTC and supplements.All of rapid declines in my psper's condition there has been a UTI lurking behind the decline. Someone else replied that they found aspiration pneumonia by questioning a quick decline.

EnglishPointer profile image
EnglishPointer

Thank you all for taking the time to respond. I need to re-read and digest all of the information! Really appreciated.

Stonesfan profile image
Stonesfan in reply to EnglishPointer

I microdose LSD for my ADHD

Try Google searching "Amanda Fielding LSD parkinons"

And this (very long) podcast is very interesting IMHO (it DOES mention parkinsons at one point I promise)

open.spotify.com/episode/04...

Richard33 profile image
Richard33

EnglishPointer,

I noticed a small improvement in my wife's condition for a few hours if she smoked some cannabis - more back in the earlier days. It briefly improved her speech (and made her laugh more!). Ruth has always taken legal CBD oil twice a day and I suspect it helps with mood. I would not think any hallucinogen would help as it would increase the feeling of disorientation. But it may be worth a go at very small doses initially as there is certainly alot of interest in its use in dealing with depression.

Always worth trying anything....!

Richard

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