dmitch5858

[dmitch5858]

My wife Mary recently diagnosed with CBS!

we are looking for any studies or trials to participate im while she is still mobile and healthy?

Looking for any kind of help and understanding of this evil disease!

Thank you and all the very best!

[honjen43]

Hi Mitch and Mary. Welcome to this site. Wrote a long reply but it has disappeared into the ether!

You don't say where you are. There are heaps of folk on the site in UK mostly with PSP, but increasingly more with CBS/CBD. They will help you find the info you need. I am in New Zealand and the average GP has never heard of it, though they are becoming increasingly aware of MND as a result of head injury - but unrelated to CBD. That is caused by tangles of tau protein in the brain that block the neuro pathways and gradually limit brain operation.

There is a lot of info on the net, particularly on Curepsp in USA, and I have recently seen suggestions it may be linked to Picks disease but have not followed that through.

My husband was diagnosed with Parkinson's initially, some years after developing symptoms I could see but his GP did not at the time. My love did not discuss with me how he was feeling but did plan lots of travelling over an 18 month period. After the Parkinson's diagnosis, meds for that disease did not help and he got progressively worse, he went into hospital and was only given the CBS diagnosis a couple of months before death.

He had symptoms for several years before this, and guess you must be at this point. You are lucky you have a diagnosis early enough for you both to get the best out of what time you have together. Mary, you are so blessed to have a partner who wholeheartedly supports you and wants to learn how best to help you. You both have time to discuss the implications and the important things together - and enjoy your time before it is too difficult!

I hope you find the opportunity to take part in a trial and to plan for your future. I have been told that coconut oil or CoQ10 can help, and there are other drugs that are being trialled for Alzheimer's that could benefit. To be part of a trial that actively helps hold off the advance would be great. But to date there appears no cure.

This site holds a wonderful group of people who will support you both through this journey. We have all been there, or alongside someone who has. They will become an important part of your lives with their support, knowledge and empathy.

Hugs

Jen xxx xxx

[jillannf6 in reply to honjen43]

A GOOD REPLY; JEN\

TA V MUCH

LOL JILL

[honjen43 in reply to jillannf6]

Nice typing, Jill! You or a helper? Good to hear from you! Isn't it about the time you think about a virtual party? If you need a hand, let me know !!

Love

Jen xxx

[easterncedar in reply to honjen43]

yes, a party would be good. What music will you play?

[honjen43 in reply to easterncedar]

Oooh. Got the wine! Maybe some Phil Collins, BeeGees, Simon and Garfunkel, good old-fashioned rock-n-,roll! Get the joints creeking! What about you? What's your choice?

[honjen43 in reply to easterncedar]

And some jazz and Glenn Millar! Maybe I can count them off and fall asleep!!!

[easterncedar in reply to honjen43]

I have been listening to a lot of Catherine Russell, a wonderful jazz singer, lately. She is fun. google.com/search?q=kat+rus...

This is one of my favorites. I hope you can get the link. Love, Ec

[easterncedar in reply to easterncedar]

youtube.com/watch?v=Ac-ezpb...(Not working as expected?)

And this one, which will resonate with anyone in our position. In a cheerful way, I think.