Ok, I'm fairly recently diagnosed ( early this year) and determined not to give in to this bastard disease.
to this end, I've refused to rest up. I play keyboards in a fab couple of bands, and last week played the the O2 academy islington , ( which meant getting in at four in the morning.). I have singing lessons, to try to keep my vocal volume and improve breathing. I also exercise where possible, and am also a part time pro photographer.
I take all types of vitamins, and fish oil, etc, and work full time also. But this week I feel as though I've lost the battle, feeling totally exhausted and not at all on the ball mentally. I'm feeling pretty depressed in spite of all the great things that I'm achieving right now.
Is this really what I must come to expect? I confess, I've taken my meds ( sinemet) up to two hours late, or probably missed the odd dose. How important is this?
Im 55 , and have been extremely active till now, and I really don't want to just roll over to this bloody thing.
im 57 diagnosed a year . work full time,am always busy like you . i find i have good week then couple of tired days wen need to slow down and recover then off i go again . def if meds taken late it catches up with me in that the next dose doesnt work so well.
what has floored me this month is insomnia so i sleep 3 hrs and then wake ....but drs upped night dose and its improving
the latest thinking is the more active you stay the longer youll stay mobile so i intend to keep busy !
Nothing to do with PD but I've always had spells of exhaustion when the seasons change.
Oh yes, normal (well it is for me). Not all the time - and for me the worst (well, a worst) bit is that it seems to be random. Yes, obvs taking your meds is quite a good idea - but I too miss doeses without difficulty, then get clobbred when i've been really good.
Like you Fingers I have a busy life which I can't just switch on or off or even pause; my PD nurse calls my work hours insane - but the thing is, I used to work these hours no problem, now I can't and that's a problem. If it were "being a bit tired" it would be one thing - but someone once said there is no tiredness like Parkinson's tiredness, and now I know why.
couple of practica lthings: some things may not be PD (as it goes) so get thyroid etc checked out. Depression may well yield to anti-depressants. Try to recognise your symptoms of incipient tirdness and stop in advance (easy t osay I know: I seem to take a perverse line of trying to do mre the more tired I am.)
Typing shot tonight, too tired to correct it . ..
Completely exhausted..........I call it 'wipe out'
The inability to function on any level. The only thing to do is sleep.
I make light of it and say "I could sleep for Wales!"
At other times, I can't sleep. So it can be said that in my experience my sleep pattern is non existent as it is so inconsistent. It is one of the ways PD affects my life.
I have to pace myself
It's almost as though I am dealt a certain amount of energy each week. Use it up too soon in the week and I pay the consequence.
Totally exhausted 24/7.
I admire you folks who work, I don't know how you do that. I can't write, typing is really tricky, I seem constantly to shake and twitch like a leaf in Autumn, so how you work is beyond me, but jolly well done!
lol This post has taken me about 6 or 7 minutes to type, with over 20 corrections to do!
But I have only just started with meds, so maybe things will improve.
im finding the difference since I started my meds quite incredible. As a keyboard player I was all to aware of the slowing down of my left hand, but it's now almost back to where it was ( after six months or so meds. )
i only hope that you can find the same effect with your meds. Best of luck with it all, stay positive !
That's good news indeed, Fingers. Thanks for the encouragement
Unless you can get your own road crew / groupies to help your gigging days are over matey
I certainly hope not Leyther! We do have roadies with one band, not with the other. I fully intend to carry on with both for as long as I'm able, and have learned now to pace myself , especially when we have a cluster of gigs in a short space of time.
If I just chose to give in with it all then I'm sure the disease would progress more rapidly, and I'm not about to do so anytime soon. Added to which the musicians I work with are by and large much younger than myself, and their optimistic and wonderfully upbeat outlook also helps to keep me positive. They have come to realise that I have my down days, and have been incredibly supportive and helpful when it happens.
Feeling completely exhausted is a direct result of your loss of Dopamine producing brain cells. The Dopamine affects your adrenaline levels hence the lack of Go when you're running low. Fight or Flight becomes, make it a quick death please. You'll learn to see Depression as more Pi**ed Off with the whole thing but once the Sinemet/Levadopa kicks in it helps remind you
Life is for Living
We're a long time resting in the end
Do put a quiet alarm on your mobile to make missing meds a thing of t he past. Regular timing and avoiding taking just before or after protein is also important.
Thanks Kendo, hadn't really thought about the protein thing. I set an alarm, but often don't have it to hand. :)