Hello AndNo…1
Welcome to the forum. You wrote that you are ‘…absolutely terrified of dyskinesia as it feels like the end of (your) career’ but you didn’t say what you do.
I cannot comment on Rasagiline as I have never used it but I have lived with dyskinesia for some time probably because of long term use of medication; I was diagnosed 15 years ago. As, it seems to me, anything and everything about Parkinson’s varies from person to person it is very difficult to give a cut and dried response to posts such as yours, however I will try to give you something that may enable you to view your own circumstances with a bit more clarity.
First of all I would be looking to find out a little more about what you have written re your career, because on the one hand it could read as if it is likely to be the end of your careeer, on the other hand it might just be what you think might happen - a maybe not a given. There is a subtle difference between these two aspects and being clear about which is most likely to be the case (if you can, it may be quite hard) may help reduce the absolute terror you have of developing dyskinesia. Even if you think the most likely outcome is the worst possible scenario - it will end your career - once you have had time to process that it can make a positive difference. Knowing what you are up against is often half the battle. Once you know you can begin to look forward and make plans re what you need to do to manage your career; or indeed lead you to think of other options if continuing in your current career doesn’t seem tenable
Second, again it depends on your circumatances but if you are in paid employment, you are entitled to a workplace assessment and adjustments made to enable you to continue to work. Obviously they need to be aware that you have some health problems in order to set the process going but you are not obliged to tell them you have Parkinson’s unless you choose to. The point is you would be entitled to support from your employer, so developing dyskinesia should not of itself end your career.
(As an aside, just to make the point not to suggest it is right for you at the moment, I no longer work and that does make a difference. When working Parkinson’s doesn’t always fit in very easily with the demands and responsibilities of your work role and when the work role is ended, Parkinson’s can be accommodated much more easily.)
Like most things when it comes to Parkinson’s dyskinesia varies from person to person, but personally I pay it little heed. Some days it is worse than others, some days I can catch myself almost constantly moving and am able to stop it - for a little while at least. I treat it exactly the same as I have from beginning of my so called Parkinson’s journey - I’ve been dealt these cards, there is no cure and it has taken me on a different turn in the road. Not one I have chosed that is true and if I could get shot of it of course I would but I have no intention of spending the rest of my life saying ‘why me?’ and being angry, frustrated etc at what fate has decided for me. The question is really why not me? I’m nothing special that gives me immunity to such things it’s just life. You won’t need to read many of my posts to see that the ‘positive mindset’ is the single most important thing to me in managing my symptoms. It’s not everyone’s way but it has stood me in good stead so far. It may not last but I will cross that bridge if and when it happens. In a nutshell therefore I just get on with my life and if people have a problem with my dyskinesia, the problem is theirs not mine. I am happy to explain if needs be, sometimes I will say up front that my dyskinesia is bad that day but mostly I just get on with it and don’t feel a need to mention it at all.
Maybe you don’t need to spend time working out a treatment plan to avoid taking Resagiline for as long as possible/ever. Maybe it’s worth considering, if it gives you a better quality of life. Maybe you won’t develop dyskinesia - not everyone does - and even if you do, it is possible to meet the challenge of living with it and it not be the end of the world. The fact is there are no certainties in Parkinson’s really. Neurologists and others can make recommendations and suggestions as to things that may help but ultimately the individual has to decide for him or herself and maybe, just maybe that includes an occasional leap of faith that something may be worth trying. You can spend your life being terrified of developing dyskinesia if you choose to, but Parkinson’s does not stop throwing curved balls into your path - this one is dyskinesia, there will be others and if fear is going to stop you at every turn, Parkinson’s will be the winner.
As I so often write, I am not sure how much sense some of what I have written will make sense to you as some of it is quite abstract and difficult to write; but I hope if nothing else, it has made you think about what you were really asking in your post and maybe see your circumstances from a different perspectiive.
I wish you well. Do not hesitate to come back to me if something is not clear and please bear in mind it is only my view based soley on what you have chosen to disclose. It may not be accurate but, as always, I have tried to write an honest reply.
Best wishes
Tot
So I will try to avoid C/L as long as possible