Here goes with my first post on a Forum of any sort. No doubt someone will direct me to somewhere where this has been asked before, so sorry if it has?
I was diagnosed with PD in Sept 12. I have a tremor in my left hand which has now progressed to my left leg as well. I tried Propanelol last year but this had no effect on the tremor and just slowed me down & made me feel fatigued, so I came off them. I have since been offered meds twice by my Specialist but declined on the basis that the longer I can do without the better? I'm wondering now if that is the right approach? Should I been taking what I'm offered to stop the tremor and make the most of the time I have, or should I wait till I really need assistance? The Specialist I saw last said there was no conclusive evidence that one way or the other was better, the first Specialist said staying off meds as long as possible was a good decision.
You make a good point. I was diagnosed in Oct last year and put on slow release patches - starting at 2mg and working up to 8mg per day. I didn't get on with the patches; they didn't stick very well and you have to find fresh skin every day. So in Feb I changed onto Ropinirole slow release tablets, starting at 8mg (where I left off with the patches) and increased to 10mg after a week. So far I haven't noticed any benefit from the meds. I'm waiting to be given the go ahead to increase the dosage again.
The point is, up to now I would have been no worse off not having any meds at all. Do I keep on going up 2mg till I reach the max of 24mg to see if they are of any use? Who knows I might hit 12mg and all my symptoms go away - wishful thinking!
I get to see the Neuro once every three months, hardly ongoing dialogue, and my GP seems to be "lets do as the Neurologist says". What I could do with is one of these Parkinson nurses, that other people refer to, as someone to talk to as issues arise. I have also heard of someone having been given a "Parkinson Pack".
Sorry to be rambling, but I find getting specific information very difficult.
As I see it, as long as you can do without the meds so much the better.
when to start meds does tend to differ with neurologists some say sooner some say later, if i am correct ropinerole is what is called a dopamine agonist and on the other hand you have the levodopa preparations ie Sinemet and Madopar, at the point of diagnosis my neuro prescribded me Rasagiline (azilect ) when i went back to see him 3 months later i said i was not getting much relief from the azilect i was offered either a dopamine agonist or levodopa ,i was told that a dopamine agonist would not work as well as levodopa if i wanted maximum relief from my symptoms then levodopa would be the best option , i did opt for levodopa in preference to a dopamine agonist
Do you not have access to a parkinson's nurse in your area GTB ?
Can't say i have heard of a parkinson's pack
Aylesbury
when to start medication would be a personal choice ,my neuro is under the impression that there is no reason to delay medication , personally i agree why suffer the symptoms when there are plenty of medication options out there ,i still take Azilect as well as the levodopa as most neuros believe it be a neuroprotective
My experience is similar to Shelly's but with some differences. I have been on Azilect approximately ten years. It has never had any effect on my symptoms but may well be responsible for slowing the progression of PD. Although I have had the disease nearly 17 years now, people I meet do not suspect it; my symptoms are still that subtle.
When first diagnosed, I delayed taking medication until the symptoms became bothersome to me: shrinking handwriting, right hand tremor, impaired balance, inability to swim (legs a problem) or play the piano (hand coordination). At this point, I took the reverse of the course Shelly took. My PD doctor started me on Mirapex (a dopamine agonist) and exactly like your "wishful thinking," GTB, all my symptoms disappeared within a short time! It seemed miraculous and lasted quite a while. But eventually, as symptoms emerged over the years, I took higher doses of Mirapex and then added a small dose of Sinemet. That's where I stand today.
I know that cases of PD vary widely. I merely offer my own experience as one more to consider. Optimism, exercise, and the right balance of medications (when you're ready for them) make the best way I know to fight PD.
The approach seems to vary from person to person. When I was diagnosed I was told nothing. I read about the PN on the Internet and arranged my own appointment, now every 6 months. I was given a P Pack (booklets & leaflets) only after a nurse heard me say to my wife that the Specialist had told me nothing other than 'you have PD'. On my last 6 monthly visit to the specialist he asked me if I wanted to continue coming every 6 months?? Perhaps he thinks its going to go away?
I intend to discuss the medication with the PN when I go next month. My GP knows nothing about PD, he told me twice I hadn't got it in the 12 months before it was diagnosed.
There seems to be quite a number of different medications that are used so I'll see what she says. I guess it's a case of 'suck it (or swallow) and see'. It just seems to be whatever suits you best as an individual?
You have given me hope that by slowly increasing the meds I'll get to the point where the symptoms are alleviated.
Shelly,
No-one has mentioned a PN so far. I'll raise it with my GP next time I visit. It would be good to have someone to call up to discuss things, my GP, like Aylesbury's doesn't seem to know much about PD.
