Hi all and Heady in particular,
I am new to posting here...I have been reading all your posts learning and waiting in the wings until I could find something genuine to contribute and maybe help.
My husband Roy was diagnosed June 2013 with CBD after 2-3 years of extensive testing and re-testing!
From the beginning of his diagnosis one of the meds he was put on was Sinemet to see if it would help with the increasing stiffness in his limbs.it became difficult to know after a while if they had any or no effect ,especially as everything about his condition seemed to be deteriorating! After seeing a new Consultant at the end of last year, it was decided that we would decrease the Sinemet gradually over 6 weeks .(he was taking 3tablets 3 x per day). Unfortunately, Roy's mobility and stiffness have been worse since not taking Sinemet ,or so it seems! ( he has to rely on a wheelchair and it is so hard to move his limbs)and so now, I have been told to start again with the Sinemet bringing it back to 3tabs3xper day!
Sorry if this sounds a bit long-winded but I will let you know if there is any more improvement. All this is so tiring isn't it? But I suppose 'IMPROVEMENT' is all we can hope for( other than a cure!)
Hope this helps and perhaps I will join in a bit more now, letting you all know a bit more about us.xx