Parkinson's - The key is to have a routine and I am not a guy who likes routine. I had to learn the hard way that a routine that works is the way to go! It set me back last year quite a few months or more but I learned my damn lesson. Those of you that have it should know that doing nothing is your enemy, keep moving. Find things you like to do and do them, don't sit around as that's just pouring gas on the fire. If you have an off day that's when moving is even more important. Sitting around is your worst option but I do now that somedays are a total washout but just start again the next day. If you have it you'll understand this sentence - when I'm moving I'm like everyone else, I'm not sick and I don't have it. My routine includes the following - get up like a regular work day every day (some days that's not possible but try anyway), shave, shower go do something. If it's a nice day take a 30-45 minute walk around the neighborhood, if it's not go walk at the mall. They open early so people can do this. After that go volunteer at a charity once a week, mine is the Food Bank of SJ (I don't get there as much as I should but working on that). Winters can be tough but spring, summer & fall I work in my yard a few hours everyday, some days all day (my neighbors think I'm nuts, but that's nothing new LOL) I do a mixture of Tai Chi type stretching and the LSVT BIG program daily and after I do a lot of work, it helps. Most people don't want to do that after working in the yard or where ever you work but believe me, it works and more helpful than sitting down! if you fail to do some type of stretching on a daily basis you'll get all hunched over and stay that way. To beat this is impossible right now but you CAN keep it at bay if you stay active, I have. Right now I'm finishing and organizing my basement not fun at all (sucks really lol) but it's winter and I hate being cold, I've got to do something. When spring comes I'm in the gardens for hours every day which is always the best things for me mentally and physically. There are 3 things for me that make me feel normal - playing music, working in the yard and being on the water. Take the time to reflect on what makes you happy, what's fun, what keeps you moving and if you follow your heart and do it the results will astound you. Still take your meds, believe me I know first hand. Take advantage of the knowledge available - don't be stubborn like your kids and learn everything the hard way! Be an adult and realize you have some say in this incurable disease, not a cure, but you can slow the progression of it, I have no doubt because I know I have. Steve Emerson set me on the right path and a major reason I'm as healthy looking and feeling as I am. Mere words can never say enough but he knows how I feel and that's why he's perfect in his new role, he's the best! The rest of you - keep moving, think BIG! Stretch even when you don't want to, that's when it works the best! I would be remiss if I didn't say this - I don't really know how I'd get through this without my army of supporters, and when I say army I mean an army! That's one of the benefits of living & working here my entire life. I'd love to leave NJ just because of the ridiculous taxes but moving and losing my friends, doctors and support would be so counterproductive it would be a foolish move on my part. So THANKS to everyone for all of your help, the things you may do for me and my family may seem insignificant to you but not us....
more random thoughts....: Parkinson's - The... - Cure Parkinson's
more random thoughts....
Hello PatrickW
Why not just say get off your ass and do something it saves a lot of words. I agree with you 100% us it or lose it.
Crossfit (exercise program) , taking care of my 2 acre home site, helping my wife watch my 4 year old grand baby, helping my kids take care of their homes,picking up grand kids at school, going to their school functions, grocery shopping keep me busy.
The reason it has taken so long for the "experts" to discover the value of exercise is that it that the "use it or lose it" principle has just been too simple for the clever neuros to grasp! If you are not good at routines ,fighting Mr.P certainly gets you into good habits. My conversion was instantaneous on dx as I was so frightened of the alternative and it seemed obvious if you were going to fool your body into thinking it had normal dopamine the regime of pill taking had to be stuck t., As for exercise a little of what you fancy does you good, i.e. if you don't like it you wont do it. If you are a bit of a gymn bunny already, then that's the route to go but you don't have to do massive amounts of exercise to keep the insidious influence of Mr. P at bay but be as consistent as you can because Mr. P never sleeps.. If your PD afflicts you with apathy, make sure you have a full diary of things which you have to do.
Slightly contradicting the above I am in the UK and fortunate to have been prescribed the 24 hours rogotine patch (rather expensive I believe) and this allows me leeway in taking the first sinemet of the day and helps with my insomnia as I realised that after a sleepless night I was doing myself out of vital sleep by setting the alarm. So whenever possible I wake up as and when. Thereafter I am pretty strict with the timing of the subsequent four sinemet during the day. Even my neuro said I don't look as if I have PDseven years since dx
Are you med free?
as for me no i take 5 50/200 er , 5 25/100 sinemet a day plus 1 6 mg requip and 1 azilex
I am only newly diagnosed and still pretty active have decided on a no med plan at this stage.
What is sinemet and rewuip? All new to me
Requip (generic name: ROPINIROLE) is a dopamine agonist. A dopamine agonist is a compound that activates dopamine receptors in the absence of that receptor's physiological ligand, the neurotransmitter dopamine. Agonists have a bad reputation for causing obsessive/compulsive behaviours (mine was binge eating) but I have found this controllable by adjusting the quantity/strength. 12yrs from dx Requip is the only med I am still taking daily from the original script.
Thank you 
My understanding is that sinemet is l-dopa and Bailey describes its affect below. Requip (ropinirole) is a dopamine agonist and agonists mimic the affect of dopamine.
Due to a history of addiction in my youth, I was very reluctant to take an agonist. After much discussion with my medical team, I started on ropinirole around 8 weeks ago. I was prescribed 8mg but tirated up to 4mg and am staying there for now. I've been carefully monitored and so far, so good. A little nauseous on taking it, a bit itchy. But much more fluid in my movements, my balance is good (I ran downstairs tonight, previously I went down sideways like a crab), and sharper mentally. For me, the time for a little help had come.
I'd heard that was a possibility so when I tirated up, I did it over a few days when I didn't have to drive. I noticed I got a bit sleepy but didn't nod off. I'm being very wary but so far, so good. Glad you are ok again. My main issue was nausea which seems to be abating. I guess the body adjusts.
stevie3,
I'm so glad you are getting along with Ropinirole - do take care on the stairs! When I was first dxd & prescribed it I did as you have & slowly titrated up. I might have felt nauseous but I never experienced it as I was prescribed Omeprazole to take with it which I still do. I think this a UK initiative. However as we all too well what works for 1 PwP may well not do so for another. My PD nurse has an adage: "if it happens quickly it's probably not PD."
Thanks honeycombe. I'm also in the UK but wasn't prescribed anything for the nausea. It wasn't too bad though. I'm still a little nauseous from time to time but tolerable. I was prescribed 8mg but to be honest, I'm up to 4mg and I think I might stay there for a bit. Kind of gives me some headroom. I'm seeing my PD nurse next week and will discuss but to be honest, they've been very 'pushy' about the medication which may be why, being a contrary soul, I held out for so long! But I feel almost back to my old self.
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