Making connections

My mum has recently been diagnosed with CBD. I’m hoping to find out more and help her to connect with other people in the UK who have it.

[kenh1]

The PSPA in the U.K. Will be able to guide you to your nearest local group. My wife had CBD I presume you are referring to the same disease. I attended the Liverpool group and received a lot of support both from CBD and PSP patients and their carers.

[Hidden in reply to kenh1]

Thank you, yes same. Best wishes.

[messier]

Hello Rainbow2020 and welcome to the group though I'm sorry you've had to find us. There is loads of useful information here if you search the archives. Depending on her age and what stage she is at she may or may not be interested in connecting with others, but I hope you will find it a source of help and support.

I'm in the south of England and my mother (80s) has CBD/CBS, although we haven't even got to the formal diagnosis as the waiting list here is so long and she's had multiple inappropriate referrals so I've had to work it out myself.

[Hidden in reply to messier]

Thank you for this. It’s so hard!

[AliBee1 in reply to messier]

Hi

Try and get a referral to Boyd Ghosh neurologist in Southampton. He is brilliant and specialises in PSP and CBD. Can send more details privately if you want. AliBee

[Hidden in reply to AliBee1]

Thank you so much, yes please.

[cameoboy11 in reply to AliBee1]

Could I have details too thanks Jo

[Aprilfool20]

HiRainbow2020.I was diagnosed with same in 2017. Balance all over the place. What area are you .I am inNorfolk and have been using this site since then. How old is she? I am now 62. Jayne

[Hidden in reply to Aprilfool20]

Hi Jayne, sorry to hear that but so pleased to hear from someone of similar profile to my mum. Thank you for replying. I’ll send you a private message.

[Gardening51 in reply to Aprilfool20]

Hello, I'm Rainbow2020' mum, so I have cbd. Nice to meet you. I'm 68 and was diagnosed in November. I live in Highbury, north London with my husband James. Sorry to hear about your balance probs. Could I ask what other symptoms you have? What gets you through the day?

Hoping to hear from you. Louise

[Aprilfool20 in reply to Gardening51]

Nice to hear from you! Other symptoms are a constant internal shaking,loss of strength,I used to be strong and did yoga. Now if I get down on the floor I can’t get up again! Movement is a problem,to help I take Madopar four times a day but I may need to up the dose as it is not working as well a it did. Hard to get through each day knowing what’s ahead but I have a husband and two parrots!

Hope this helps and possibly contact again. Jayne x

[Gardening51 in reply to Aprilfool20]

Hello again, just checking in; I'm really not very good at navigating the forum, anyway just wanted to say hi.

[Aprilfool20 in reply to Gardening51]

Me neither but hope you’re ok. Sorry not replied before but it’s only just come through! T/ c Jayne x

[AliBee1]

My husband had CBD. I am sorry that you have had to join this site but it is a great source of 1st hand knwledge and advice. The PSP association have a marvellous booklet on CBD and they have a helpline and lsit of local groups. Go to their website. Good luck AliBee x

[knitting62]

Hi, I live in the south of England, near Chichester not too far away is Portsmouth and 1.5 hours drive away is Brighton, I'm wondering if there is a CBS group somewhere in the south nearby, does anyone know?

[cameoboy11 in reply to knitting62]

If you hear of one please let me

Know thanks jo

[Drjazz]

I have CBD, but I live in the States. Recently diagnosed at age 69. So far I have trouble walking, especially the left leg, and more recently troubles with fine finger movements and hand to eye coordination.

I am sorry to hear about your mother. Only advice I have to give her is to do what she can as long as she can, and don't worry about the rest.