My husband has recently been diagnosed with CBD, He was struggling with certain things ie, buttons zips, holding things in his left hand. Our GP referred him to the memory clinic, but they discharged him as they felt it was a neurological problem. We went back to the GP where they did some basic tests and referred him for a CT scan, the results of this showed general age related degeneration.
Fast forward 8 months my husband was working at the time and one of his colleagues told me they were concerned for him as he seemed to be disoriented and unfamiliar with his surroundings. We went back to the GP and I insisted that he has another CT scan, we were sent straight to urgent care where he was seen by a stroke specialist the CT scan showed no abnormalities or bleeds on the brain, he was kept in as the specialist wanted him to have an MRi scan too. This too showed no abnormalities or lesions.
My husband was put on garden leave from his employer, as they were concerned, they paid for him to see a neurologist privately, within minutes of looking at the CT scan he advised that my husband had CBD, its strange how he couldn't see it on the MRi scan though.
Now 3 weeks in to his diagnosis I have been looking for any drug trials that are available at the moment, my husband is very keen to embark on these.
Any advise would be much appreciated.
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Birdie04
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Hi Birdie04, please ring the PSP Association's Helpline (pspassociation.org.uk) they have a newly diagnosed group to support you. Also their Health Care Navigator for your area can further lend assistance. All my very best wishes to you at this difficult time.
Hi, research in CBD is being carried out by Dr Timothy Rittman at Addenbrookes. Not sure where you are or if you can travel to Cambridge? Google him and drop him an email- I did this and he put mum on his clinic list. They do the most recent treatments as far as I am aware, at least in UK
Hi, my husband would have been very keen to get on Dr Rittman's clinic list but unfortunately we are 85 miles away.
In the meantime he has tried Vitamin B1 after seeing a podcast presented by Daphne Bryan and buying her book she has written on Parkinson's and the B1 Therapy.
However after taking them from early last year it hasn't slowed down his regression in mobility.
With there still being ongoing research into finding a cure for Parkinson's (or what might actually be the cause of getting it) I think that sadly even controlling CBD is going to be a long way off into the future.
A neurologist diagnosis is normally just confirming their opinion with the CT/MRI scan for CBD/PSP. My Mums neurologist knew what he suspected before her scan and just said to me that it was just so he knew for certain it wasn’t anything else.
I would look to contact PSPA ( pspassociation.org.uk )they will be able to provide a load of information and know about trials available if any.
Please do ring the PSP Association for help and support at this time. They have local support groups which are so helpful. There are also different research opportunities available for various aspects of CBD, from diagnosis to treatments to coordinating care. They can tell you what is going on.
It is great that you and your husband want to take part in research.
Wishing you all the best at this challenging time.
You're at the start of a hard journey, lots of good advice from fellow travellers here.
I can amplify the suggestions about contacting the PSPA - and getting in touch with Dr Rittman's clinic in Cambridge. I'm not sure which trials are suitable for CBD as my husband had PSP, but we benefitted from the NORAPS trial.
I can also echo the comment about trying B1 supplements as it can be useful, inexpensive and you can start straight away. There are others supplements like Q10 that might also help - please read CurePSP's summary article for details.
While waiting to find out about trials, please take steps to improve general fitness & strength, and try to get access to Neurophysio. There is an app "clock yourself" that can help with balance training and brain-body coordination. Maintaining abilities is far easier than regaining them later.
Please also think about speech - voice banking, make recordings, take time to have important conversations and get in touch with speech and language therapist. Many exercises can be put in place now to maintain speech and swallow.
I happen to believe that Cambridge (and Southampton for that matter) are fully aware of PSP / CBD, and a round-trip of 170 .miles would be well worth it IMHO if Dr Rittman is prepared to accept patients from outside the Addenbrookes normal catchment area - PSPA will advise.
We are Essex - our GP said they wouldn’t take us so I emailed directly and they would. I just needed to get a referral letter from my GP which I emailed on to them.
My dad was diagnosed in Dec 2019 with Parkinson’s … he had MRIs etc it became apparent with left side weakness, TIAs and a slight tremor.
Only once he had a DaT scan was he diagnosed with CBD by his neurologist Dr Alusi at the Walton Center in Liverpool - from what I know it is the only scan that is definitive.
She specialises in movement disorders and has multiple patients with CBD.
I suggest if possible find a neurologist who has CBD patients in their care.
My dad is still with us, I won’t share my experiences here unless you ask. As a family we have been through the journey to this point.
This forum has been a god send for me, literally …. These are rare neurological diseases yet finding a place to connect with people who understand and are on the journey has been very important to me.
Thankyou for your reply and the information that you've given me. We are all on this journey together, its comforting to know there are people out there going through the same or similar and that we can all help each other come to terms with and face this awful disease. The support is a god send to me and I really do appreciate it 🙏
This is the fantastic group that nobody wants to be part of but it has proven invaluable for many, including myself and my family. Great advice already provided, make the most of PSPA and everything they provide/share. Everyone’s journey and coping mechanisms are different but the wealth of sharing on here has supported mental and emotional preparation for me and in turn my family. There has also been some fantastic practical tried and tested things that have been of huge help to us. My mum was diagnosed with CBD in late 2020/early 2021 after ‘odd’ things happening and after much miss diagnosis over the previous 2 years. My posts and profile may be of some support. Thinking of you.
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