Spouse CBD Diagnosis

[Oumarusk]

My spouse was initially diagnosed as having Parkinson's Syndrome. In February a different Neurologist suspected that it might rather be CBD and this has just been confirmed.

I am currently the sole carer and hoping to find advice, etc from others on this site who are further along the line in order to be better prepared.

[LARWLSN]

Hi Oumarusk,

This site is a great resource.. you can search for almost any topic and there will be many posts/replies about it. As far as being prepared.. if you spend time reading a lot on this forum, you will see there is a wide variety of paths patients take, which makes it very hard to anticipate next steps or even know where someone is on their journey. I know that is likely not what you want to hear, sorry for that. Out of curiosity, how was CBD "confirmed"? My mom is "likely" to have CBD... as far as I am aware, there isn't a test or scan which can confirm this.

[Oumarusk in reply to LARWLSN]

We saw a Neurologist at the Neuro Sciences Department in Southampton Hospital. He did an in depth interview and physical examination, reviewed scans that had been done earlier etc. A lumbar punture is also being planned and we are waiting for the appointment date.

[Harshacceptance]

My dad was diagnosed with Parkinsons, Dec 2019 ... it was only once his consultant neurologist had completed a DAT scan was his CBD diagnosis given.

Make sure you open the lines of communication to the GP and that accurate diagnosis are on health records etc. It was only at the beginning of 2024 that we realised Dads palliative diagnosis was on his health records and he was placed on the Gold Standard Framework - this unlocked a lot more support.

This forum is incredible ... lots of great advice and wisdom.