Hello all just like to share something with you that is concerning me more than letting on to anyone
I was diagnosed with Parkinson just over 4 years ago and I am taking Madopar 4 times a day I had a letter last November from my doctor asking me to make an appointment for my Dementia check up which was such a shock to me, anyway got to see him and he is telling me that he wanted to see me because of my lewy body dementia showed me the letter from the hospital which headed Parkinson with lewy dementia I am so confused about all this has anyone had the same or can anyone shred a little light on this, have I got Parkinson or dementia or both, sorry bit late but happy New year to everyone
As Confucius say: man who go to bed with itchy bum wake up with smelly finger
Peter
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HI Peter. Thats a terrible way to be told such news. I really feel for you. My PD diagnosis was upgraded to P with D last year but only after a lot of tests, scans etc.
Like you I was thoroughly confused by the terminology - Pwith D, LBD, D with LB etc. and I kept asking “Well which one have I got?”
As far as I can tell after lots of reading and conversations they are essentially all the same thing. The only difference between DwithLB and PwithD is which order the symptoms arrive in. The impact and the treatment are exactly the same. LBD is kust an umbrella term for both of them. i.e. Both DWLB and PWD are Lewy Body Dementias.
There is a great PUK info sheet that covers all this and I also highly reccommend getting in touch with the Rare Dementia Support Service https://www.raredementiasupport.org/
A lot of the info you will be given on Dementia only applies to Alzeihmers. LBD is a very different condition.
Good luck
Martin
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Thanks Martin that is very helpful I will check it out