What's the point of making an effort? To add to your struggle by staying positive, keeping busy and pretending it's ok. But no everyday on with a big smile and pat on the back 'arent we doing well' . It's so politically correct to be a patient that 'inspires' someone who says 'I'm a better person' now. Does it help the world to level illness by spot lighting those who are excemplorary patients?
......... But, maybe we miss the point .....
What you choose to do, roll over or stare down disease is not about your condition and how well you cope it's about life. Your life. I personally subscribe to the notion that I only have this one. One chance. So I choose to make it the best it can be, the very best. If I don't who looses out? Well me. So, give in, well go ahead, don't bother no don't if that's how you feel, be utterly miserable it's not compulsory to smile. It's just you won't find me doing any of that. PD or no PD I LOVE LIFE.... I find joy in The Clangers, I lick raw cake mix from the bowl, I adore cheesy disco, I grab everyday and run it hard and fast. I continue to find solutions, plan, stay ahead. I guess I'm pretty selfish, but I never want to say I wish I had or if only.., I want to say wow one hellofa ride. That's in my opinion in my hands.
I totally agree with your positive attitude Colleen but for me the main obstacles are fatigue and lack of drive. Dopamine is responsible for drive and motivation and I don't think I have enough! Plus I'm a single parent of very full on twin boys which takes up most of my energy. I always intend to make the most of my time off from them but half the time I'm too exhausted and just need to gather my energy again. I wonder if I have something else apart from PD as many people don't seem to share this problem. Having said all that I do lead an active and inspiring life, just not as much as I would wish! Thanks for the kick up the arse!
I have fatigue and sometimes feel I could so easily just not bother especially if you think what you are doing is unappreciated. But you know I think like this, one day I won't be able to do it, possibly so heck I'd better haul my ass out the door and get it done. I combat fatigue by changing what I am doing quite frequently i.e have several things on the go! The thought of twin's exhausts me so you must be doing brilliantly! x
Did you get my email? I had no reply. I think we alll get tired and down some days are worse thann others. Vit b complex might be good and i find my co enzyme q10 and vit c kick start me everyday,
Im trying gemmotherapy as well ....between homeopathy and herbalism. It takes the roots and shoots from young plants and you take drops in water every day. i am recommended ginkcogen and figuier from Herbal gem. I suppose fig and ginkco.
Twin boys must be tiring. No answer there except to try to be grateful for them everyday and appreciate them as time flies by,
Eat broad beans and avocadoes for extra dopamine when feeling it is low.
Yes I got your message but my brain is completely fried after 6 weeks of school holidays. Completely crashed today, can't even get out of bed to look after my kids. Will reply when I get my brain cells firing again x
Thanks for the kick up the backside. You always hit the nail on the head. We can never go back. we can only live in the present and go forwards. On bad days, I always think - well tomorrow is another day! My 8 year old grandaughter is staying tonight and it is about 2.30am here. I have just looked in on her and realise what makes me tick. Hopefully, I will manage to keep up with her tomorrow as I know she wants to do quite a lot before going back to school on Wednesday. Just hope it is a fine day. Thanks again.
I agree. and you have stated it so well. Every day is different so I try to see what energy I have and get the most out of every min. LIfe is short and I want to look at the good Lord when I reach the pearly gates and be able to tell Him, " I used every talent you gave me and I have no regrets."
I don't know why but this post reminded me of when I was in primary school and a teacher suggested that everyone was good at something.
In my contorted view of the world, which I notice is not solely a possession of the young, I took this to mean that everyone was sufficiently good at something so as to be the best throughout the world at that one thing.
Now ignoring the obvious impossibility of everybody being top dog at something, I recall feeling really quite a large degree disappointment upon failing to find that one thing that I could do that nobody else could or at least not as well. I always found someone who was better, more able, at that thing than I could ever be.
I didn’t realise to the full extent how stupid it was to rely upon an idea based upon a false premise and more importantly how this understanding, or rather lack of same left me feeling inadequate and much less capable than I might otherwise have felt, Such an effect from a simple and correct statement by the teacher that they could not possibly have expected to engender such a warped perspective in me. The child’s view of reality cannot be predicted in any reliable sense.
Another strange thing from the mind of a child (i.e. me again). In the early days of Harold Wilson being PM I remember seeing him on the telly and being told he was the prime minister or boss of Britain. My own conclusion at seeing a man dressed in very fancy robes and a strange type of pointy hat was that he must have been the prime minister of the world. Now, I think the gentleman with the apparent keenness for pointy hats must have been the pope. Not such a crazy assumption (regarding him being the worlds' PM) that time I suppose. Anyway it certainly seemed to me inconceivable that the world did not have a prime minister too.
I am pleased to report that for the most part, having left childhood behind quite some time ago, I am less prone to such distorted perceptions. Well I hope so but people would probably be wise to be very careful what they say (and how they` say it) to me for fear of me sending myself on another journey to nowhere.
I am feeling like a clumsy "oaf" these days as everything seems to take more and more effort. Reading your positive words was just what I needed! Thanks for sharing.
I don't know about anyone else on here, but after reading some of these posts today,I am more confused, disoriented, fatigued, depressed and anxious, and all the other issues I have already forgotten! There are great positive posts and there are some that are not! Well, that's what this is for! And I can take what I want and ditch whatever I want! So now I think I will just go back to bed and cover my head for the rest of the day! JUST KIDDING! But this really has been a mixed bag today! But guess what people? That's PD!
PD sucks but life is good and I intend on staying on the ride----chocolate in one hand & beverage of choice in the other (probably a 'shake' of some sort.....teehee) and when I come sliding in disheveled , tired as hell I'll be yelling WOOOOOHOOOO what a ride!!! Anyone up to joining me??? Have a good day.....at least it will be after I take my AM meds.
Love your post, H-H. Makes me think! We always have a choice--roll over and give in or put on a happy face or somewhere in between! I was in a senior yoga class with a woman who told me how she "admired " me for getting out and about with PD because her husband is one of the roll overs for whatever reason. I almost gave up last year but now I'm battling who knows how long.
Coleen,I have been trawling through your blog posts for the ideal place to put the following comments. I think i've failed but I don't suppose it matters very much.
Coleen, you are very keen to promote the concept of positive thinking and I have wanted for a while to, not so much disagree but more to augment or alter the language or focus on this topic.
The reason is twofold.
The simplest of these two points is exemplified by those occasions when I am feeling less positive than I could and I happen to read one of your rousing, “all hands on deck” type of posts, and I am left feeling slightly scolded.
Perhaps another example and anyone out there with training in counselling will have been made aware of this, is when a counsellor feeling very ebullient, on top of the world, sees a client who feels dreadful. Now to greet such a client with that positive front when they feel like shit is very likely to make them feel even worse. What is required of the counsellor is to be congruent, that is to present a “sympathetic or better an empathic” front. This congruence is vital to allow a meeting of minds and to make the client feel he is being heard.
The second reason I’m not a devoted positive thinker is that a positive thought of whatever flavour presented to someone who at that particular moment would be more able to run a marathon than to accept an entreaty to be positive because every ounce of their being is focused upon some minor point of reality. What I’m trying to say is that if there is too big a disparity between a suggestion of positivity and reality then that positivity might be taken with irritation and certainly not in the spirit that that suggestion was meant.
Positive thinking does have its place for sure and one could introduce that master of positive thinking “Emile Coue” who “on every day in every way was getting better and better”. Emile Coue was the inventer of the “affirmation”. His famous example above is in fact a rather poor example of an affirmation as its focus is too wide and general purpose.
No, what I like better than positive thinking and its not so very different really to positive thinking, is enthusiasm. Now to me that is a way of infusing positive ness without being incongruent and hopefully you can take people with you rather than risk making them feel scolded.
I hope that you understand my view and feel at least a little enthusiasm for enthusiasm as my intention is wholly and enthusiastically to build rather than destroy and in any case Coleen you do in fact often already include statements that are full of enthusiasm.. As I said in the beginning it is really a modification, an augmentation of the idea of positive thinking that I’m after. What do you think?
I know where you are coming from and yes I am totally inexperienced and naive. People kick back at my posts, and that is right that they should. My only request is this that one considers that I am trying, and in a sea of black, sometimes a tiny blue wave might just be a good thing. I do not have your intellect, I simply share your condition. Like my posts I feel suitably scolded.
Please don't feel scolded, I only wanted an alternative or changed emphasis, I was seeking to more fully understand what it really means to be positive. So often we use language without really understanding what a phrase means in a more literally sense.
Apparently, the words we we use only constitute about 30% of the understanding that passes between two people in conversation. The other 70% is picked up from body language, voice tone and volume and body odours too.
Because of this one can say something to someone but mean the precise opposite of what the words mean and the recipient knows what is really meant. In this way it is possible to be apparently quite nice to someone while really being rather unpleasant. However, although I can see why you felt scolded. I only wanted to inform you that sometimes I do. To make you feel scolded would probably have the opposite effect to enthusiasm which I hope would take you with me, if you see what I mean. I'm not sure I have expressed that in a very clear way.
That just one person feeling scolded as a result of my posts is not good enough, in my book. I understand about tone and visuals and of course when one writes a blog, one does hope to do their best. I hope that remains the over-riding impression. Being positive is an individual thing, I just don't want people to think that all options are taken away, that there are choices, but that we must also help ourselves. I could walk away from this site being dismayed and paranoid about my interactions but I have always had a level of disagreement, you voice your opinions you have to take that. Your points are all completely valid, I am not sure however I have the answer other than to shut up! I will ponder on it and see if I can indeed 'speak' with a different tone. I am sure you will be quick to tell me if I once more miss the mark.
I concur except that you mustn't shut-up, many people on this site value your posts greatly it seems. As for me, I admire your approach, your "positivity" if there is such a word, your confidence and your abilities in motivating, in having a go etc.
You seem able to do things that I never could and in truth I am at least a little envious of your get up and go. Needless to say my get up and go went - if it was ever there.
No, I am only saying that enthusiasm is preferable as it is "infectious" and can motivate well. I see positivity as the stick and enthusiasm as the carrot.
Yes, don't miss any more marks otherwise you'll be in for it.
I was just wondering if your last post on the "little blue wave blog" could alternatively have been placed in this blog?
Anyway I am a little disappointed that you have not posted here today as I was hoping for some indication, explicit or otherwise that I had not said too much out of turn or been annoying. I generally dislike confrontation or disharmony in relationships and would not relish the thought of you being upset or worse, discouraged. And in any case I would like to add that I count myself in your number of those who prefer positive thinking. Incidentally it occurs to me that the better term for this attitude to life is optimism. That is more specific and less prone to misinterpretation.
So, if you find the time a quick note to reassure me and anyone "watching" that all is well would be good,
ah busy busy day no t'internet time ..... herewith
In this sea of blackness of pain, hurt, chaos and often despair, I try and keep a little spirited blue wave of words. Granted I am very English which for me distills down to being a tad 'Mary Poppins' esq, goody two shoes, thinks she knows what's best, can be deemed as patronizing. I am marmite, love or hate. But what I also am is totally genuine, write from the heart, and trying to give support in the best way I know how. No not everyone is glass half full, and no that is not a weakness nor a criticism its just human we are all different. The reason I am so passionate about being eternally optimistic and like an annoying bouncing Tigger who you wish the batteries would die before you throttle it, is this. I remain so well, and I don't believe its a fluke. I truly believe its my attitude, So if I can replace one black wave with a tiny blue one, I would like to think it helps. Please note that I have no professional status in this arena and can only comment about my own status. If I have ever made you feel like a small boy infront of the Headmaster I apologise, my life is what it is and not some yardstick of success.
Sincerely CHH
All is always well and good, I banged drums like a demon and had a chaotic radio show .... played Elvis Costello Watching the Detectives ..... what a track! Optimistic is an OK word, it at least is not 'hope' my pet hate ..... I will ponder more on something more suitable
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Why consider Ambroxol for PD?
Director of DBS Clinical Research Development.. Department of Neurosurgery, Anatomy and Neurobiolology, University of Kentucky.
