I am 65 yrs & live on the Wirral (close to Liverpool). I was formally diagnosed with PD in August 2009 although I 'self diagnosed' approx. 1 year before this date. My initial symptoms were tremor to my right hand for which I chose not to take any medication offered. Since my initial diagnosis my PD has progressed considerably and my current status is as follows;
Tremor to both hands but very severe to my right hand. This results in painful wrist & elbow joints and great difficulty getting to & staying asleep, primarily due to the tremor on my right hand. I've also had dystonia (painful !) to my right foot over the past 5yrs. Both of my legs have tremor although this is currently manageable. I am steady on my feet although beginning to shuffle & lean forward. Have general fatigue & my speech becomes impaired when tired or stressed. I have 'tired / limp' facial features and have become a little socially withdrawn mainly due to very bad tremor.
My PD has progressed considerably since my initial diagnosis & have been taking medication over the past 6 or 7 years. This has included trying Selegine, Rozagiline, Riponrole, Pramipexole & Co-Beneldopa. I am currently taking Rozagiline 1mg & a low dose (100/25mg) Co-Beneldopa. I have had no positive benefits from this medication & believe that the Co-Beneldopa has brought on Postoral hypertension and day time sleep disorder.
Over the past couple of years I've looked into DBS believing this to be the only realistic treatment to reduce my tremor. I have found on the internet what I believe to be the criteria for DBS eligibility which is quite detailed which broadly distills down to having tried various medications & quantitive measures of PD symptoms. I have serious reservations about increasing my dosage of Levadopa in order to satisfy this DBS eligibility, especially because the Co-Beneldopa I currently take is responsible for the onset of day time sleep disorder & postoral hypertension. Also the increased risk of developing Dyskenesia when taken over an increasing period of time.
MY QUESTION - has anyone had any experience or advice about asking for DBS eligibility, treatment locations etc
Thanks for reading my post, regards John (alias Marcantony)