Hi I was lucky to attend one of the support meeting and meet Martin, one of the very kind caring attendance who is looking after his wife expressed managed to get to Cambridge and receive appropriate medication which help his wife ! After couple of months we had a chance to meet this amazing team!
I wish I met them earlier in my husband case!
You just need to be refer to them by your GP :
Dr James B Rowe's Department 01223 760697
Our contact is Patricia Vazquez Rodriguez, research assistant
01223 336950 email pv283@cam.ac.uk
She would be the best person to speak to.
or
Sarah Ayerst receptionist
01223 760671
email sa719@medschl.cam.ac.uk
Good luck
Written by
Samila
To view profiles and participate in discussions please or .
This is my Mum's team, we are fortunate(?) to have been with them since diagnosis. Dr Rowe is part of research team and often appears in press releases about it.
There is however, still not much they can do to help. We go regularly as my mum is taking part in the research program they are part of, but they are monitoring her decline, trying to keep her comfortable and sorting her medication that she was on already only. Excellent care but no magic wands.
John is also under James Rowe and has taken part in their research. The whole team are brilliant but have not been able to offer ant medication that helps John. They are always at the end of a phone.
I'm just jealous that you have neurologist care teams at all! Our tertiary neuro made the diagnosis then sent us off to "call your health authority if you need help". I had to give our GP/PCP info sheets on CBD and hope that I get what I need...and no hospice until you're at the point of death....(several bitter snarky sentences erased here..👿..)
I agree that they are a fantastic team at Cambridge. They really understand and care. Not that they can offer any treatment for my CBD. The team even sent me a Christmas card signed individually by each member of the team. Those of us who are under their team should feel very blessed and grateful. One piece of advice I received from Professor Rowe himself was that if I ever got taken to hospital I should get them to phone him so he could fill them in on my condition as most doctors have never heard of CBD!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A Carer's Guilt
My Beautiful Nan
Sad News regarding a Great Friend
69th birthday yesterday
Waiting times in hospital dreadful for mum
