I am enjoying writing this blog although I have no idea how long I will keep it going; it will depend on the flow of ideas and usefulness in documenting my life with PD. I feel like I have more to say than I ever imagined when I started writing, I hope it is useful for others. Hopefully, I can find some interesting angles or perspectives, and a mix of light and shade most probably. I might also have to get a little creative, there are after all limited things to talk about with PD!
As I write , it is 9 days now in starting treatment – 1mg of Rasagiline per day. I feel significantly better but for my leg dragging and rigidity & tremor (although that is minimal so doesn’t need a fix right now). The majority of benefit is a feeling of being less ‘down’ or low in mood. I still feel it at times as I am sure the dopamine ebbs and flows throughout the day. Interestingly I am less worried about PD now which is probably the drugs helping. Of course it could also be a placebo effect, or just my human instinct to fight this thing,
I still can’t get to sleep until late but once asleep I have a good sleep. Temperature regulation is also a bit up in the air. Strangely my right hand can be cold and my left warm. I will continue to assess & review at the end of February with my Neurologist.
I have also now had my 3rd visit to my movement disorder specialist. We discussed again the pros and cons of DAs vs Levodopa & he spoke in a way about prognosis and timeframes of 3-5 years before needing Levodopa, 5 to 7 for on/off & dyskinesia to become part of my life. 7 to 10 to perhaps think about DBS. I say ‘in a way’ because he is very careful about how he puts things and the words he chooses; which I have to give credit for (despite my wish for more direct and candid information), after all he doesn’t really know me yet, and dealing with a chronic disease is a very human thing,
What I need is Dopamine in a perfectly controlled form, that is released through the blood/ brain barrier in the right amount at the right time. But in the last 50 years there have been limited developments in treatment towards improving this. There are some new ones coming out in 2018 though which I need to research further.
Rasagiline update – at one month (6 days before my next appointment).
I take my tablet when I get washed in the morning, I think it takes a bit of time to boost me up but my symptoms are still quite mild. There has definitely been an accumulative effect over the month. It now pretty much lasts all day. There is a bit of gait issue, some rigidity which all comes and goes. My mood is still much better and I can cope better at work. I am sleeping better but go to sleep between 10.30 and 12.00, but with a lot less thinking about PD. Time since diagnosis obviously is a factor here, you can only feel sorry for yourself for so long. I am at risk though of falling into too much of a carry on as usual mode, especially with work. I need to keep reminding myself the best time I will have with PD is now , it is today, so Carpe Diem! Rasagiline doesn’t fix everything for me but enough for now & that is what I will say to my Neurologist when I see him next.
You have to see the funny side of things, with these serious side effects I have been warned about 2 or 3 times now- the risk of developing compulsive behaviour disorders (shopping, gambling, eating & sex). I know the one I want to have although my wife reckons eating is the no brainier ! 😀). Still when you tell people about these sorts of issues, generally the response is one of being not sure what to say, again I think this is because to most people unless you’re shaking, then they don’t know what Parkinson’s means. Having something start to miss-fire in your head and then take drugs which are altering your brain chemistry feels all a little weird to me as a person going through this but it is all largely invisible to the outside world. Articulating how it feels is also challenging.
So Dopamine please! But not too much too fast! I want Rasagiline to last me a good year or two, although I reckon based on how I am feeling I will need to move on to the next stage of Dopamine therapy sooner. We’ll see, time will tell,
YOPD A New Normal 