What is going on with CBD? Another good lecture.

[Kevin_1]

Again from a Cure PSP conference.

This is a lecture which looks at CBS (CBD) the presenting symptoms and what is going on with the brain.

youtube.com/watch?v=-5N3o1l...(Not working as expected?)

[Beads0122]

Kevin,

Thanks. That was a good video. I noticed that it was from Feb 2014. Hopefully the research from our loved ones has advanced the understanding of this disease.

Bobby

[Kevin_1 in reply to Beads0122]

Hi Bobby

Good point.

I suspect it's OK as a basic description of symptoms and cause.

[Beads0122 in reply to Kevin_1]

I didnt mean to imply it was not relevant. It was surprising that it takes them that it takes 4 years to release information to us.

Bobby

[Beads0122 in reply to Beads0122]

I also saw another by the same doctor explaining why the disease is not necessarily genetic. youtube.com/watch?v=Wz8KMqY...(Not working as expected?)

[Kevin_1 in reply to Beads0122]

No I agree with you, It is a good point. Things are moving fast.

Thanks for this video. It's good.

Cheers

Kevin

[Trillo]

I've just watched that, very very good and very informative and will watch again in case I missed some thing.

[raincitygirl]

I found this interesting too Kevin, as I'd always wondered why my hubby started with speech degeneration early in the disease (CBD) and before any/much movement disorder, which followed later. This video explains it: He likely had the non-fluent primary progressive aphasia variant of CBD (with movement disorder increasing in the last couple of years.) Also explains for me why the Neurologist kept saying until last year "we can't rule out Alzheimer's totally yet - though not likely"

Thank you.

Anne G.

[Kevin_1 in reply to raincitygirl]

Hi Anne

I have found these videos quite helpful.

They don't change anything, but somehow they help me by giving me a sense of things.

xx

[Aprilfool20]

Thanks Kevin ,probably a good basis to show newbies and carers alike. Wish I’d seen this when I was first diagnosed . Did you watch some of the other videos ?Lots of info though perhaps a bit behind recent research. Jayne

[Kevin_1 in reply to Aprilfool20]

Hi Jayne

I'm working through them... So many of them!

Yes, I wish we had seen these at the beginning of our journey.

I read some of the more up to date research, but a lot of it is in tech. speak which is difficult to understand.

I hope things are going OK for you.

Warmly

Kevin

[Aprilfool20]

I am trying Madopar at the moment. Still got the internal tremors and legs feel like jelly, as usual, but mood has lifted a bit(have stopped crying at the slightest mention of the horror) and I suppose it’s early days. Am only on the lowest dose, looking to increase over the next few weeks . If I at least get some respite from this apathy it’ll be something. Can crawl around on all fours to try to get things done,albeit like a tortoise! The Henry hoover has a mind of its own!

Couldn’t care if I eat or not and get frustrated trying to plan meals but hubby needs feeding! Have resorted to ordering on line as I find trekking round a supermarket really exhausting, although I do find I miss things and also the social interaction. I really need to be in a virtual shop and go up and down the aisles with those special headsets!

I will be posting about my research experience in due course but I still have a few tasks to perform as time ran out . Going back to Cambridge next month.

Hope you are coping and that Liz is keeping aswell as can be expected.

Jayne🐌🐢

[Kevin_1]

Hi Jayne

You sound like an absolute Trojan!

Having to crawl around on all fours and cooking sounds very difficult.

Is there any support you could get?

Liz had a go on one of those supermarket electric wheel chair trolleys. Boudica had nothing on her when it came to mowing others down. I was horrified at the devastation, but could not stop laughing too.

I've not heard of that sort of virtual shop. It would suite me down to the ground. I do all of my supermarket shop online now... Mt new order full of mistaken purchases should arive any minute now!

I hope Madopar works for you. Good luck!

Looking forward to your post(s) on your research when you get the time.

Liz and I do OK it can be a mixed bag some days, but on other days it's wonderful despite PSP. I am quite astonished at how clear her thinking is still.

I love the tortoise emoticons, they gave me a chuckle!

Strength to you

Warmly

Kevin

[AliBee1]

Thank you Kevin AliBee1