Hi. Just joined here as my husband now diagnosed with CBD not PD as first thought.

[FeeBee]

He is now in a care home but to be honest they have little experience of his condition so I would like to be able to keep them informed.

[Kathy]

Hi FeeBee,

If you join the PSP association ( free to join) they can send information to you and/or the home directly. They have a Helpline too if you want to speak to someone. The Helpline number is 0300 0110 122.

pspassociation.org

I'm sure you will find lots of support and advice on this site too. It's also a great place to come and just "let off steam!"

Kathy

[Kathy in reply to Kathy]

p.s. Should have said - The PSP association also supports people living with CBD as the 2 conditions are related.

[FeeBee in reply to Kathy]

Thanks Kathy, I will try that. It's good to know there is something out there.

Fiona

[jimandsharynp]

FeeBee, Welcome. Sorry we couldn't meet under other circumstances. You will find a lot of help and support on this site. I lost my dear wife Sharyn to PSP this month. Stay strong for the bumpy ride ahead. The CurePSP.org site (USA) has an excellent one page document that describes CBD that you can order and/or print from on-line. Stay strong and keep watching and if you need us we are here. Jimbo hugs

[jillannf6]

hi feebee

good that you have joined us on the site but not good tha t your husband has been dxd with CBD - it can be likened to PSP which is why there are a few people on this site who care for people wiht CBD

i ha ve PSP by the way and am still here upright most of the time since i was dxd 2010 dec

lol JILL

[piggyinthemiddle]

Hi Feebee,

I am sorry that your husband has CBD but it is good that you have got in touch early after the diagnosis. I have something very important to say .... Please start laying down some communication aids etc now. My Dad was diagnosed in 2009 and its the communication side that we have really struggled with. He lost the ability to speak very quickly and now he is unable to point to his 'speech board'. So, it's vitally important that you and he practise some way of communicating now (in particular, think about how he will be able to communicate yes and no so that you can at least ask him questions and know that you are getting the answer he wants to give). Some people use their eyes, some a bell, some raise their hands.... I hope that you find this helpful (and not too upsetting) take good care and keep in touch xxx