Stand in the light

Stand in the light

I read so much about the hurt, pain, anguish, despair, destruction and darkness of this illness. Its seems that many allow a blackness to creep slowly over them consuming who they are and smothering any joy. I know its hard, I am right in the heart of those who are in pain, frustration and chaos. I couldn't survive a life filled with the grief of some slow loss. Its not what I want, and I won't succumb to it. I stand in the light, I get inspired, and I get going. What stops anyone of us doing that is generally ourselves.... so today a little encouragement...

First ... go bang something blooming loud, wooden spoons and pans if needed

Second ... decide today to change something, something that you've been tolerating and putting up with..... well no more! Fix it, nicely of course but fix it

Lastly ... you know you so can.... a radio show, drumming, dancing, drawing.... its all possible. I need you to do it. Come stand in the light, the more that do the brighter we become x

23 Replies

  • 200 watts in agreement

    And ....

    Ask ourself "what have we done for Parkinson's lately?

    We must be part of the solution.

    Bravo to the folks who created this space for us to explore our ideas and emotions.

  • I am finding it extremely difficult to be positive,i have an aggressive tremor which is getting worse,i cant even sit down and have a meal without it flying all over the place,i am avoiding contact with other people and i get told by a neurologist that i have to forget about the tremor and live with it because i,v had most meds for tremor and its hard to treat,where is the hope in that.

  • Heck I don't blame you, it must wear you down like crazy. Is it like dancing?? meaning you can distract it by doing something else does it for that moment 'kinda behave' ..... I know it sounds crazy but have you tried drumming and I'm not being ridiculous I am curious to know. I don't subscribe to 'hope' .... it would seem pretty hopeless to hang our futures on a mental desire. Personally I like doing, there must be some solutions for you to get some positive vibes.... another dumb question and back to the point made above do you dance?? I know men hate it but have you tried, even a pogo to the Sex Pistols...... I'm still thinking......

  • Try medical marijuana

  • I'm with you on this... my lowest point (so far) was going to dinner w/a friend and having to be fed b/c I couldn't handle utensils. I became a recluse after that. However, I was fortunate enough to have DBS in 2010.... and it gave me most of my life back. If you're interested in my DBS experience I wrote a looooong blog about it a few days ago. Happy to answer any questions you might have about it.

  • i,m now starting to get face tremors,it seems to be spreading and is very downhearting,never danced in my life,but i,v no problem in making my self look silly the tremor does that anyway.

  • Hey I can appreciate :-( truly I can. But lets not sink into some black abyss.... its a long way down and lonely. You don't need that on top of everything else. I don't know if you are a trekkie, I sadly am and I find PD like the Borg, it will assimilate you in 3 moves, so you have to learn a new move, eventually it will catch up again, but hey there are no shortage of moves!! It stops you going forward you go backwards, it catches you up, go sideways, it overtakes, you hop. All I mean is keep putting it in its place, somewhere where it is not top dog, you are. What happens when you swim?? or go in water? try the drumming, try the dancing, get someone to dance with, always easier..... what happens if you try a yoyo?? ...... distraction techniques.......

  • With you all the way. I don't subscribe to 'if you can't beat it join it'. I have to believe that even though I can't beat it, I can at least give it a good run for its money and that is what I intend to keep on doing.

    I try to fill my days so I don't have time to get bogged down by this nasty monster. After all, I didn't invite it into my life and my home. It lives with me, I don't live with it and it could get evicted at any time. HOPE if what I cling to.


  • Thanks for the comments,i,v tried swimming but the tremor is worse in the water,i tried a long walk in the cheviots yesterday,enjoyed it except for my uninvited companion,tried not to argue with him and accept that he was there,rather seized up this morning pity the tremor wasnt.

  • Keep inspired, keep motivated..... Next time you walk take a camera, yes I know and how are you going to take a picture with a windmill arm, well with a tripod, or balanced on a wall..... seeing as you enjoy the outside so much make us all here a 2013 Calendar?? If you come over to Dun's you can try drumming!

  • Hear Hear!! we cant beat this hideous thing called parkinsons but like court said we sure as hell can give it a run for its money........PMA Positive Mental I`ve said before parkinsons WILL NOT rule my life.....I WILL rule it......I WILL NOT BE ASSIMILATED.....Phasers to kill Mr Worf! ( there u go I`m a Trekkie too )

    I will stay one step ahead of it at all times......Nil Bastardo Carborundum....dont let the bastard grind you down! :-)

    Anyways, I hear theres a party going down on Sat 3rd March....I`ll see you all there! who wants the first dance? ;-)

    Keep strong


  • Thanks to you all for the positive comments,i wouldnt know where to start making a calendar colleen but what a positive idea all the same,i,v discovered there is one thing i can do that i couldnt before the tremor,i can do that thing where you pat your head and rub your tummy at the same time if i use my pd hand for the head patting as there is no lateral movement in that hand,obscure or what lol.

  • well, that hand tummy thing means you can drum!!!! get the pans and a wooden spoon!!! yip yip.... as for the calendar I expect one on my wall Jan 2013 .... no pressure.... la la la

  • Just got a drum, learning guitar, golf, starting to paint, doing tai chi, writing poetry, when i can't write I tape myself. love my family, going to a big fundraiser for Neuro Challenge Foundation, (PD support group) tonight, modeling on the catwalk with my 4 y.o grand daughter.. trying to enjoy without thinking/worrying @ $$$. Good luck alanrob, prayer to you

    Thanks HH, well put!

  • Heck are we on some parallel life or just crazy! I do catwalks all the time, despite my 'funny walk' !!!! Respect back atcha x

  • Hi H-H, Like you. I'm A LIGHT person, if your walking down a street, and you have the choice of walking on the warm, bright sunny side of the street, or the dark cold shaded side. give me the light every time. P.D. is like the street, you can choose to be morbid, down, beaten.or would you rather be thankful even happy. I made my choice, and trust me it works, we all have bad times, but don't dwell on them, since I got P.D. in 1999 I was 44. i have a grocery list of things wrong with me, and by the year something else pops up.I take enough drugs to supply a small hospital. But you have to shake your self, doom and gloom doesn't do anything but take you down, laugh out loud, it helps but make-sure you are by yourself or your other-half will have you committed. You don't have to kid yourself. P.D. is the pits. but you have to be smarter than it, you have a brain, use it. Always look on the bright side of life, just sing it , you can beat anything with your head working for you. be positive. Rocky wins again. be a winner. bye


  • always look on the bright side of life da da , dadadadadada.

  • Hello HH

    I too prefer to seek the light even though my PD is progressing.

    Friedrich Nietzsche, said : "Battle not with monsters lest ye become a monster; and if you gaze into the abyss the abyss gazes into you."

    It warns us against becoming the very thing that we fight.

    We are all more than our disease.I know that my value is not determined by my symptoms but by my own self worth and by the love of those who are my friends and family. We are all more than our physical self.

    One lesson PD has taught me is to not care what others think. Who cares if some stranger is staring at me? I don't. My worth is not diminished by that stare and my life is not changed or enriched by people who lack sensitivity.

    I sometime despair but feeling bad does not help me live my life. Being positive does.Being negative does not draw people to me, Being positive does.

    We all can mourn our losses, and we need to so we can move on but getting caught in grief only holds us back.It's not what happens to us, but how we react to it that matters,

  • I never feel energized any more due to PD. I just hate it!!!!!!!!!

  • Don't we all. But a life of hate, seemingly it will have won twice then. Don't like that, don't like it at all. Energy comes from excitement, remember being aged 7 and getting new shoes, aged 11 and finding Santa has been, aged 16 and getting a valentine, aged 20 and driving your first car. So at age 48 I discovered radio, age 49 I find drums. It wont find you, you have to find it.

  • Thanks for the positive thoughts, Henderson, I was just venting at that particular moment. The fact is I did so well for about 9 years. My PD was totally under control. But, then it changed. I'm a young 73, but I'm draggging my butt most of the time. I'm also plagued with extreme sweats, a bad back and sore knees. I live in a fabulous over 55 community and have wonderful friends and all kinds of activities,not to mention a great husband. So, I really have nothing to complain about. I apologize for being a sad sack.

  • So very thankful for this positive feedback and also knowing what to possibly expect down the road - it's not a one-man show - it belongs to so many ...

  • As in most circumstances, the negs get the most noise.. The feeling positive are busy living.

    Having said that I am not belittling us for bemoaning our situations. I argue for finding something each day that delights, tickles or entertains you and visit that place throughout the day!

    My other way of dealing is to have a bitch session.

    HEY now there's an idea, perhaps I will post a moan blog all contributors wlcome!! Watch for This place for complaining, whining, bitching, and even a pity party !

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