Question for UK PSP patients and care givers

[mthteach]

I have been watching the CNN report on Medical Marijuana. Has any one with PSP or care givers heard and reports about the Cannabinoids drug for helping PSP suffers. My husband has PSP and suffers with throat pain. He has never in his life smoked. It makes his eyes burn bad when around people that smoke. I would feel better to hear real stories about this before I dig further to help him. Thank you

[Lieve]

It helps with other conditions like MS (my soon-to-be-ex in the US used it just for that - for aches, stiffness, pain and also to relax, which soothes the symptoms). As you must know, you can also get it in cake form (not sure medical marijuana is sold like that but then, hey, start baking! :-)). Wouldn't be nice if it came in liquid form like a syrup?

Wow, don't I sound like the expert! We've been following all the debates and findings with a lot of interest for years. Good luck.

Lieve

[MGirardi]

I am in the state of Colorado and have had my Parkinson's dx since 2000. Cannabis and it's other products can be a tremendous help in knocking out tremor. Of two strains, sativa and indica, I use indica because it has a sedative quality. The entire product line

allows for edibles, vapors, rem vapor, and others. It's not necessary to make any smoke or smoke the cannabis to have it be very useful. The cbd oil is also very good in helping

to reduce PD's many symptoms. Best of luck to your family. Cannabis is natural and it

has no RX side effects. I was prescribed many different RX drugs at the beginning (I think my Dr. wanted to save Sinemet for last) and the side effects were horrible. Mirapex and Requip were very bad for me with side effects.

[Hidden]

I am convinced it would help especially in green juice form. We live in Turkey where marijuana is highly illegal in all forms and as far as I can discover the large quantities of green plants needed to make juice cannot be acquired. If you can try the juice you should or try baking with cannabis. My partner has had PSP for almost 5 years and we have tried various medications to no avail. So if you can get hold of the marijuana/cannabis give it a go. It may not help but I do not believe it will do any harm. Give it a go and report back on here.

P

[formercarer]

I cannot imagine that cannabis will help a PSP patient. What symptom do you think it might alleviate? It certainly won't help the patient if you get caught buying, producing or supplying to the patient. The NHS drug cupboards will be flung wide open for the benefit of the PSP patient already, so I would urge you not to bother. However I would concede that there could be some benefit of a "medicinal dose" for a carer...

[mthteach in reply to formercarer]

I was going to talk to the doctor in Birmingham when we go back. They do research for PSP cures. My husband has been complaining of sever throat pain. The doctors here cannot find anything wrong other than a little aspiration and acid reflex. He hurts so bad in the afternoons that it affects his breathing. It is more rapid. I was looking at the cannabis in throat spray form that I saw on the CNN show. They said that they were giving it to patients with seizures. I want to help my husband to not be in so much pain. I have not got that far as to think about the legal aspects yet.

[jzygirl]

You can get medicinal canabis I think it comes in tablet form and some gp's do prescribe it. It is used to manage pain and muscle stiffness. It also has a seditive property. There are a lot of desease that have benifited from use of canabis. Cancer severe arthritis and of course ms and parkinsons To mention just a few. Good luck if you get it and try it. Janexx

[CharlotteH]

Yes.

Husband 68yrs PSP diagnose 2014, debut probably btwn 60-62 yrs.

One year ago my husband was not talking much anymore. He would sit at the dinner table as if he wasn't there at all. We go an electric wheelchair, because he was unable to walk more than 30-50 meters. His back was also very bad.

In the fall of 2014 we started self medicate with Cannabis. It is very illegal in our country and we had never been in contact with any illegal substances, we hardly even drink alcohol, and we didn't quite know where to go or what to do.

We got into contact with activists in other countries and we sent them his medical journals and they sent us suppositories with a mix of THC and CBD. The change was incredible. After 3 days he had less or no pain in the back. After two weeks he started walking around and would eventually leave the electric wheelchair for bad days only. He became social and would talk again and "be there with us". We even went to a meeting in Slovenia where we met Rick Simpson.

We have spent quite a lot of money on the cannabis therapy and I don't know if we can get any further. He is currently getting around using a walker, his bad balance has not become any better during the period. A funny thing is that he was coughing badly, but when some young people offered him a joint and he smoked marijuana two nights in a row. After that he did not cough for weeks.

He says that he does not feel progress anymore, but he does feel better when he gets cannabis.

He was prescribed antidepressants, Alzheimer medicin (just in case it might help (!)!) and various other medicins with a long list of side effects, and we decided to not use any of them as nobody could guarantee that it would do him any good and he was suffering from the sideeffects.

I truly believe that cannabis can do a lot to help PSP's doing better.

Good luck

[CharlotteH]

OH - by the way

The cannabis that help is the oil made from natural (!) marijuana. The stuff that is made by pharmaceutical companies have, according to a number of articles I've read, not shown significant results. That may be because those pharmaceuticals are partly or entirely artificially made.

You can find articles online about GW Pharma - their Sativex was hyped but did not meet expectations from the market.

[onthemead]

I'm with all the comments above. If it might help try it! But on that point, I've often pondered about what kicked in J's PSP that was originally diagnosed as parkinsons. About 7 years ago in our more mobile days we were back packing through SE Asia, and went to see Ankor Wok in Cambodia. That night we had a "happy" pizza. (For the uninitiated, this is a normal pizza with marihuana sprinkled on top). Very nice, but no real effect. So still being a bit peckish we went and had a "very happy" pizza. We never made the next stage "ecstatic"!! What a blast. Totally out of control. Left all our shopping in the restaurant. (Never to be recovered) Managed to get a tuktuk to our B&B (somehow!) and then got into belly aching fits of giggles trying to negotiate the mosquito net. next day I felt like my legs weren't properly attached.

Happy Daze....

[mthteach]

Update on Cannabis. I went to Birmingham, AL for research testing for PSP. The doctor there said that it would be ok to try this for my husband's throat pain. He is very experienced with PSP. It would only be the part of the marihuana that is called (CBD). It will not have the THC in it, and it has to be prescribed by a doctor. The next state over from where we live has just made it legal for doctors to write a prescription for it w/o the THC. I cannot tell you guys on here how much I appreciate your advice and experiences. As someone on here said " The more we know about this disease, the better off our PSP patients are."

[rocklady73]

Is any one else as dizzy and wobbly as |I am? while in the states I tried it but it didn't do too much