Good evening
(Friend of a PSP sufferer).
karger.com/Article/FullText...
I came across the above report in Karger Medical at the weekend and I am wondering if anyone or any carers have had experience/tried this? In particular if any improvements were noticed in dysarthria (no specific type), but mainly relating to the decline/weakness/clarity of the voice?
Thank you
Chris
These are our information about CBD Oil hoping to be useful:
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, 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...
Hug and luck.
Luis
Thank you Luis. I have read through the links and most useful.
Interesting. Thus far, CBD oil or cannabinoids have been used to manage pain and anxiety with some success. I note that this report hasn't been peer reviewed, but has listed several PubMed reports as external resources
Tim - PSP patient.
hi , Tim. Off topic, but I was just thinking of you and wondering how you are doing. Peace, ec
Hi Sarah,
I stepped back from my PSP-CBD advocacy efforts - for now. My books will continue to be a fundraising platform for the PSP-CBD non-profits. It has been two years and eight months since my beloved Trish died. It has had such a profound effect on me. The damndemic was a living hell on me, as it was for all of us. Being unable to hold Trish's celebration of life service for over two years, dealing with my youngest and autistic son's mental health issues - planning for his future without me, missing my children and grandchildren... and then some. All these things have left this warrior in need of time for myself. Time to sit with and process my grief. Some days, it is overwhelming and threatens to consume me. Then there is the beast - PSP, that keeps on taking and taking. There is much healing to be done physically from a serious fall that resulted in pelvic fractures and a pulled groin. Time feels like a competition and I'm losing. I need to be right with myself, and it means taking the time to do so. I'm always available for and will respond to messages, as I have told others. And oh yes, there's the fourth manuscript to edit still.
Tim x
thanks for replying, Tim. Grief is such a terrible, complicated beast. And you’ve had more than is fair. My mother died December 26 of 2019. We were so lucky in having had her service on March 7 of 2020, just before everything shut down, but being cut off from family after that was hard. I do sympathize, and admire your courage more than I can say.
So sorry to hear of your problems Tim. I feel you have contributed so much to so many. Big hug and love from Jean xx
Thank you Tim for the reply. I will let you know any update.
My husband, aged 68 had been able to successfully use CBD oils and cannabis to relieve anxiety and pain issues (from falls) for most of the 7 years he dealt with PSP. He has passed now, but he preferred cannabis to using prescription drugs such as Ativan, and was able to use a blend higher in THC with success. Vaping caused coughing, so we quickly found that the whole plant was milder and could be used cooked with foods as well. Toward the last few months of his life, it was more difficult for him to smoke with a pipe, but we experimented with several different types of pipes and found that simple ones worked best. At times, saliva was an issue. The pipes would be cleaned out often, due to resin build up. Wooden pipes would be more difficult to clean. Glass and metal could be cleaned well. I would have to assist him in holding, lighting the pipe and loading the cannabis properly. He had lost his ability to hold onto things properly, so it became a little bit of a night time ritual after dinner. It helped him settle into sleep. He enjoyed that he had a good appetite as well, so after cannabis, ice cream was welcome. The shops where we purchased the cannabis were helpful in showing us which blends might be an advantage, but we also experimented on our own and tried what sounded interesting.
I was thankful to have this option for him. He gave up practically everything in his life as the PSP took more and more each month. It was good to offer a comfort with little to no side effects, other than the munchies. Some people may feel like they're doing something illegal or wrong due to the opinions of others who have judged cannabis as harmful. My experience was that it was one of the only things that made our 7 -year journey with PSP tolerable.
I believe plants are utilized all over the world in many medicinal ways, and have been since early civilization, and pharmaceuticals have their place, certainly, but until someone figures out how to help PSP patients as well as other brain injured, deal with the enormous and cruel effects on every aspect of life, cannabis should be encouraged.
Hi Debs, thank you for sending your detailed reply. Your hand’s on experience really does make this forum very informative to family and friends. We will look into this further and update in due course. Regards Chris
Hi Sweenstar, My husband Pat is in his miraculous 9th year battling PSP. His cousin died of PSP in year 5 last summer. A friend recommended cannabis about 4 years ago and it has been a game changer. Pat has never been able to tolerate the usual meds, barfs them up or just feels absolutely miserable after taking them so being able to switch to a plant/herb medicine with almost no side affects is relief beyond measure. He takes a full spectrum oil with his tea in the morning then a CBD/THC product with high Sativa content as needed through the day, usually 3 times. When he can't talk at all a small amount brings his ability to speak right back although weakening in these later stages. The higher THC products have a euphoric/happy effect so he is usually optimistic and happy. Pat doesn't like the feeling of being "stoned" so only takes enough to feel "normal." He likes to be at work on our ranch driving his tractor by 7:30am. The sleep gummies are amazing, he sleeps through the night. The 40:1 (CBD:THC) capsules + Theragun massage keep his upper back/neck stiffness manageable. We're lucky to live in an area where cannabis is legal and accepted and people are working to find which cannanaboids bring relief to which conditions, it's a complex plant. Thank you for giving us the opportunity to share our positive experience with cannabis. Love to the PSP community
Sweenstar,
That medical article was mentioned about 3 years ago. I tried cannabis out on Ruth giving her a regular significant amount of edible cannabis at night. She quite liked it but it did not make any noticeable difference. But since then I have noticed if she has a weak grass joint her speech (and writing) noticeably improve for an hour or so. She is deteriorating, but you can still see the beneficial effect. She can feel a bit stoned on occasion but she does not mind that and again it does not affect her adversely - just giggles bit more than usual!😂 So I would recommend cannabis to anyone in our situation......(but I do appreciate it is illegal in the UK).
Richard 😀
medication and herbal remedies?
After Sinemet
Frequently falling face down
Success rates with CHC funding application 
CBD--questions about Thiamine/B1 & Levodopa. . and what we could try? 
