Treating PSP, MSA, and CBD" - Webinar Recording, Notes, and Resources

[Christine47]

youtu.be/ePKXO1UPOlw(Not working as expected?)

[NannaB]

Wow Christine, such an amazing post. Too late for my husband but I would recommend it to everyone living with and caring for those with PSP, CBD etc. I didn’t learn anything as I’ve been through it, did most of the things that was said and had all the equipment he mentioned that could help but it would have been so helpful if I’d heard this in 2010. 31 minutes in the Q & As start so if you haven’t time to hear it all, I recommend starting from there. One answer given I thought was incorrect. It was do people with PSP have hallucinations? The answer was something like no, not usually. My husband did but then another question was Can medication affect cognition? Not his exact words probably but he replied yes it can and that all medications have side effects. I discovered my husband’s hallucinations were due to his medication and they stopped immediately he came off them. The doctor said beware of all medications (again probably not his exact words). I read all the possible side effects after the hallucination episods. One of the last questions was how can a caregiver help. His response was that they should look after themselves. Don’t struggle to lift someone, get the equipment to help.

So much common sense spoken.

Thank you so much for posting Christine. I hope others listen, it will be so helpful to them.

XxxX

[Hidden in reply to NannaB]

Larry says he has hallucinations but knows that they are hallucinations. It isn’t often to date. Everyone has a different experience with PSP.

[NannaB in reply to Hidden]

They certainly do.

XxxX

[rriddle in reply to Hidden]

If the hallucinations are not related to medications or infection, it's more likely Larry has Lewy body dementia rather than PSP.

[rriddle]

Thanks for posting a link to the recording. Here's info on the "Notes" and "Resources" promised in the subject of this post...

Brain Support Network and Stanford University co-hosted a webinar last Wednesday, February 27th about “Treating PSP, MSA, and CBD – What can be done?” The webinar focused on what treatments are possible for progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.

Check out this blog post for a list of PSP, CBD and other resources mentioned in the webinar, and detailed notes from both the presentation and the question-and-answer period:

brainsupportnetwork.org/tre...

If you'd like to receive announcements about future webinars on PSP, CBD and treatment of symptoms, please sign up for BSN's PSP or CBD email list here:

brainsupportnetwork.org/abo...

Robin

[Abrecheisen53 in reply to rriddle]

Thanks Robin. It was an excellent webinar. Thank you so much for letting us know about it.

Alice

[yellowmarlene in reply to rriddle]

Robin, Thanks for the great webinar, I hope there will be more in the future.

[rriddle in reply to yellowmarlene]

Best to sign up for Brain Support Network's PSP or CBD email list to be notified of future webinars.

brainsupportnetwork.org/join

[Kevin_1 in reply to rriddle]

Thanks Robin.

And, yes I am about to subscribe.

Kevin

[Mnd0vrmnky in reply to rriddle]

Have you seen this? fortune.com/longform/alzhei...

[Richard33]

Hi,

Robin Riddle of the Brain Support Network had kindly sent me the link already. But just watched this quickly now. As Nanna B says, the question and answer session from 31 minutes onwards is very informative. I learnt that Botox in the foot for dystonia may actually be making it more difficult for the patient to walk by reducing the muscle effectiveness (equally you still need to control the pain). I learnt about Vitalstim therapy to improve swallowing - need to see if it available in the UK. And interestingly how the apparent weakness on one side of the body for CBD patients is not so much weakness but slowness. Lots more in there - I will watch again more thoroughly.

Richard

[rriddle in reply to Richard33]

"Buyer beware" on VitalStim. We had a local support group member who had to go to the ER after a treatment. Her jugular vein was damaged. She and her spouse felt it was due to the treatment.

[Richard33 in reply to rriddle]

Thanks for that advice - I will very cautious before spending my money on that!

Richard

[Mnd0vrmnky]

Thanks Christine, my dad just passed the other week. How are things with you?

Also... fortune.com/longform/alzhei...