Everywhere I turn I see ad's for products containing CBD, the cannabis oil stuff. All I can think of is "CBD killed my father". There is a billboard in my area about wanting to feel better come get our CBD. I know they are 2 entirely differnet things and 99.99% of the population has no idea there is a CBD neurological disease but it still bothers me a bit...
Off my soapbox...
Ron
I totally agree with you. It annoys me as well. My wife suffering from CBD. (Cortico Basal Degeneration). But what also annoys me is that cannabis oil has not gone through all the trials that all medication has to go through. It is medication approved by Social media.
I just did a google search on CBD. There was not one link to Cortio Basal Degeneration but 20-25 links to Cannabis Oil and related products.
Ron
I felt the same. When I mentioned PSP folk thought I meant Play Station Portable. 9 years ago when my husband was first diagnosed Google recognised PSP as that so I had to use the full name if I wanted to look something up. I made sure that as many people as possible knew what my husband’s PSP meant by handing out the cards provided by the PSPA in the U.K.
XxxX
Oh Bev don’t know whether to laugh or cry at this!!! I have experienced lots of comments that it is just a variation of Parkinson’s comments but never had the Play station mix up !! You obviously mix with a much cooler crowd than me !!
Love Tippy
C received his diagnosis when I worked at a secondary school where most of the staff were younger than me and had teenage children. Even one of my sons said, “I thought that was a PlayStation” when I phoned to tell him the diagnosis. Youngsters seem to play on iPhones, iPads and tablets now. Something thing else that may make you smile,
I looked after my 7 and 9 year old grandsons for a week last year and the 7 year old asked if he could have his tablet. I got his vitamin pill out of the cupboard and he looked at me as if I was mad. “No, Nanna B, it’s up there”, as he pointed to what I thought was an iPad. I asked him if mummy let him play on it and he said that of course she does so he could play his maths game. 20 minutes later he handed it back and said I could put it away until tomorrow as he had reached the next level. I was relieved as I thought I’d have difficulty getting it off him. I know I wouldn’t have wanted to do maths voluntarily when I was 7.
XxxX
Me too! So how can we get Google to recognise CBD and PSP etc, in the way we understand what the initials mean?
Probably need a bit of technical expertise here, and not me!
Hugs
Jen xxx
I tell people that hubby has a degenerative brain disease and they can remember the name easily by thinking of the initials CBD, meaning Cortical basal degenerative disease and not CBD oil. This usually shuts them up. It’s not my problem if they don’t want to understand it better. Ignorance is bliss. I guess?
Yes it gets confusing doesn't it Mum has CBD and uses CBD oil 😳.
I have got used to saying she has Corticobasal degeneration now when I'm asked. It's interesting that more often than not people don't question it they just try to hide their look of confusion and give a sympathetic look.
if however I say CBD the usual response is
'Whats that?'
Lynda 😊
Another irritation is when you mention it is a Parkinson's plus syndrome. The answer is "I know all about Parkinson's" which indicates they know nothing about PSP or CBD.
I found a series called The Sacred Plant on the web- it has helped me share what I believe is good information to those who care to investigate it for various issues. We've found a lot of fear and ignorance as we look for help with my husband's Parkinson's/PSP problems. For us, it is the only way to deal with balance issues and stiffness, as the medicines for Parkinson's can't be used for him with a history of melanomas. We also watched the documentary Ride with Larry about a man with Parkinson's who decided to keep moving despite his medicines and balance issues-and was able to try medical cannabis - with almost instant and wonderful results- but guess what- in his state- it is not legal yet for medical use. It makes no sense to me. It's a whole different thing than the recreational use we tend to remember from our youth- It helps so much with pain and tremors, and so many other issues. Hoping people watch The Sacred plant and learn not to be afraid.
I find I have to add the word disease to CBD and PSP on google to get to the information. Most people are looking for CBD oil or Play Station information.
Jeff you have just given me a thought. To move them up the list they need more searches? So why don't we all do a search for them adding the word disease? Then they would go to the top? Or am I too naive? If we all did it once a day that would surely have an impact?
Marie x
I think that's why it took me so long to find this website! I kept getting CBD oil returns on my searches until one happy night when this site shone like a star in the darkness 🌟👍😊
A Proffesional's Guide to Corticobasal Degeneration
The Ice Cream Challenge
CBD diagnosis likely 
uk based Liverpool support 
