Hi all, I have been newly diagnosed with a rare brain disease called Perry’s syndrome. Parkinson’s is one of the symptoms. Although medication has helped with my tremors and muscle rigidity on my right side, it only provides 2 hour periods of relief, I take the medication every 5 hours, i take co-careldopa 3 times a day.
When the medication wears off, I am completely exhausted and have to lie down for at least an hour and the medication takes an hour to start working. My specialist is impossible to get through to, and the secretarys line always rings out when I call. My appointment isn’t for another 2 months, my first appointment was in February.
My quality of life is really poor at the moment as I feel like I’m on a constant countdown until my meds wear off, and when they do I’m under a duvet waiting until I can take my next dose of meds. Just wondered if anybody else is experiencing difficulty with access to specialist treatment.
Welcome to our community forum. You should hear from our members soon with regard to their experiences with meds and exhaustion, but in the meantime please do make yourself aware of our support services, which you can find on our website here: https://localsupport.parkinsons.org.uk/. And also take note of the search function at the top right of the page, as this will bring up previous forum discussions on the topic you search.
We hope these tools can help, and with our warmest welcome,
Hello Emy … Seeing a neurologist every 4 months is pretty good. Do you have a Parkinson’s nurse? They deal with the day to day medication once we’ve had a diagnosis.
Why not give the help line here a ring & talk to one of the helpful PNs here.
Hi Steve, thanks for your reply. I’ve had some luck today in getting through to the secretary. They are sending my email detailing my concerns to both the specialist and the specialist nurse team. I wasn’t assigned a specialist nurse, however I’m hoping this gets the ball rolling with things.
