I was first aware of “something wrong” when aged 57 I noticed a tremor in my left ankle in Feb '17. 3 mo later GP referred me to neurologist who saw me in Oct. Halfway through 15 min appointment I said I feared I might have Parkinsons, which got the reply “I rather think you do - I knew before you sat down”. Direct, but I’d rather that than wasting time. He sent me for blood tests and MRI to exclude other things.
Seen again in Feb this year, the MRI apparently shows lots of dots on my brain, which he said nobody knows what these are, other than interruptions in normal blood flow - sounds alarming. However he said my case is mild and he can control it with tablets for 25 years - sounds encouraging. Anyone else know about these dots?
He sent me back to the GP to start on Ropinirole which I started in March. Three weeks each so far on 2mg, then 4mg, and now 6mg modified release nightly. Had nausea to start with though that seems better now, though taking it after a glass of wine that evening is just horrible next day - headache, nausea, congested lower abdominal feeling.
I feel brighter and less brain fuddled - maybe psychological, or spring time, but I’m less tired and my affected foot drags on the floor less. However tremor is not better, and does seem to be spreading from left leg to left and right hands.
Is night time the right time? GP had no suggestion, pharmacist said not morning because it can make you drowsy. But forum users seem to be taking it in the morning.
I’m in the 3rd week of 6mg a night. How do I know what is the right amount to stop at? What am I looking for? GP, normally excellent, doesn’t seem to know and asked me what neurologist suggested. Meanwhile neuro has said he doesn’t need to see me again. I seem to be in a care gap - too trivial for a consultant, too specialist for a GP.
I know from reading the forum today there are Parkinson’s nurses here at PUK, but is that the only way to access such a service? Maybe I should just ask my GP, as I’d want such care integrated into my medical records. Anyway I will call the helpline tomorrow to see when I can arrange a call back.
I have a busy, stressy, highly mentally demanding job as a department manager and subject expert - most of which I love and am extremely keen not to give up. I have told my CEO who has made all the supportive noises I’d hoped for, but I have no idea whether I can keep up the pace - last autumn after the diagnosis was pretty tough.
I know this is a journey and all the meds can do is slow the decline. Also that depression and dementia are more common in PD sufferers. I guess I just need to take it a day at a time - though some of the days seem long…
So that’s a sample of me. What can we do for each other?