It's down to me

Patient responsibility

I have a bee in my bonnet, that's a polite way of saying I'm about to rant. Now to be fair rant is not exactly right it's more to do with expression.

I spend as little time as I can in what I class the illness world. I define that as being any time my experience is controlled by my condition.

I want and need to operate in a normal as possible environment.

And to the greater extent I do.

Most importantly for me is my mind set to my condition. I believe it is my responsibility to help myself than to look to others to find solutions for me. This doesn't mean I don't need resources such as my Doctor and Neuro but it does mean that I am not expecting them to hold all the answers, nor to treat me whilst I remain unengaged.

I feel the biggest weapon I have is my attitude, my resourcefulness and my actions.

The buck stops with me.

I am determined, focused, strong. I make a point of never giving into moaning, being sad or sorry for myself.

I am lucky to have an upbeat personality and a creative brain. Both of these are fundamental to my continuing fulfilment.

My life including my illness is firmly in my hands. I am choosing to keep well. I am choosing to keep my life alight.

CHH

25 Replies

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  • again well said colleen

    lol JilL

    :-)

  • I agree with you 100%. We have to be in control of ourself and feelings.

    attitude and determination

  • Ummm are you sure. I mean really sure? Because it kinda sounds to me like your trying to convince yourself.

    Maybe you should go talk to an old friend or join a PD support group and get a little help anyway as kind of a backup. You don't have to do it alone.

  • Oh I am totally sure. I am fully aware of support groups, I have a good network however in the end it's the way I deal with it that matters. We are all different this isn't a better way it's just my way :-)

  • Oh I am totally sure. I am fully aware of support groups, I have a good network however in the end it's the way I deal with it that matters. We are all different this isn't a better way it's just my way :-)

  • I couldn't agree more!

  • Ok, just checking. You are of course correct that we must deal with it. We must also stand back once in a while and check our-selves and ensure that we are indeed dealing with it. Depression, the worst PD symptom of all, sneaks in the backdoor when we are not watching and is difficult to detect at the onset. It is the one thing my wife watches me for, probably because her mother suffered from it and now that I think about it you kind of sounded like her mother. Anyway sorry if I misread it and was a bother to you, be happy.

  • I too remain positive and no one ever knows I have Parkinson's Disease unless I tell them. My moans and groans are only heard by me.._when I wake up and try to hop out of bed pre-disease. I take my breakfast of meds, do my exercise video, and my day begins like it always has. The only difference is that I am now on total disability.

  • Henderson, I have always felt as you do. I must say, however, as the disease progresses, it gets harder. Not impossible, but harder. I've been in this for 27 yrs. I was very very independant in the beginning, but it gets to a point that you have no choice but to accept some help. But that's ok.

    I agree with your attitude. I have been very fortunate and choose to count my blessings rather than dwell on the negative.

  • I am always happy to read one of your posts. You inspire me to be more positive! Thank you. :)

  • Greetings CHH. On the one hand you sound realistic (e.g., “I spend as little time as I can” not, “I don’t spend any time” and “normal as possible” not “normal.”) On the other hand, you sound a bit audacious (e.g., “My life including my illness is firmly in my hands. I am choosing to keep well.” Really? Can you choose to produce more dopamine neurons to replace those which have expired prematurely? It seems to me that you are in good company when you imply that positive attitude can have a positive effect on your illness. Indeed, no less an authority than William James observed: “The greatest discovery of my generation is that a human being can alter his life by altering his attitudes.” But you take a step too far when you boast “My life including my illness is firmly in my hands.” It were, the folks at the NIH, CDC, MJFF, APDA, PDA, etc.,.could all close their doors and go home. I’m not holding my breath.

    Cordially,

  • Yes, I agree that we must stay positive and strong, because it does come "down to me". But, as with all issues in life - it's not that simple. Your initial statement about spending as little time as possible re Pd - is in itself a controversy. I find that in order to stay positive and fight a battle on a daily basis to stay ahead or at least on par with the battle, requires a great deal of time and effort on my part. It takes away from my time I can spend with other loved ones, and the viscious cycle means, I would be spending even less time with loved ones, if I don't spend time focused on my PD . Time spent on eating, exercising, medicating, sleeping, resting ( all which has to be managed with care and correctness ) takes up an enormous time and it's to do with dealing with my illness issue. Training your mind to stay positive is now used up quickly just to deal with the realities of what's left after the disease has already destroyed a major part of the person I used to be.

  • A positive attitude is great. At the same time, it's not necessary to be a martyr and suffer alone, I tell myself. I tell everyone I've got it, with a smile or a joke. A few people can't handle it. It's their problem. My determination: Move freely! Banish pain! one day at a time. I appreciate the amount of support I receive but I'm preparing for the day when I'll need more, just in case.

  • A martyr I am not :-)

  • Actually, I shouldn't leave my reply with the last statement of dealing with what's left of me after PD destruction. Because, it is again a controversy, since I do spend a great deal of TIME, trying to do whatever I can to reverse my PD, and firmly believe that I am on my way towards doing just that!!!

  • So impressed by what you say CHH. I hope you don't drive yourself too hard.

  • It's just my way of doing things. I am sharing in the spirit of support. You may agree or disagree that is what this is about discussion and ideas. My main point is I won't sit back

    Using my pet hate word ' hope '. It is too passive.

    I do everything I can, everything. In can't stop this condition but I can smile. My posts are genuinely how I feel and I remain in greatshape

  • The balance between being optimistic and realistic is difficult. Enjoy having control as long as you can. The first 15 years after the diagnose I was able to control my symptoms, so I did not need the company of fellow PWPs. Now I spend most of my time working for PWPs where I live. It is a relief to be with people who know what PD is about.

    vadehavet

  • Thanks

  • I will fight this Parkinsons, who I did not invite into my life, for as long as I can. I believe that I have Parkinsons, but it does not have me - at least not yet. Each day is different. Some days I think I may be winning, the next day I am not so sure. But still I fight on. What choice do I have? My grandchildren give me strength to carry on. They rely on me and their love has helped me to stay focussed. I push myself to exercise as much as I can. What more can I do?

  • I am a pdns with a thousand patients with some kind of movement disorder. Many very young onset.it is best that they become experts in their condition. When I am on leave or at conferences it shouldn't all grind to a halt. Shared care an agreed contract of care works so

    Much better. It won't work for everyone ir in all areas but you need to be the expert as parkinsons is do individual we can't kno all about your parkinsons. Your on and off periods. We can guide you but you need to under your symptoms because unless you do we cant

  • Must be nice to be in total control.

  • Must be nice to be in total control.

  • Very true and in my humble opinion the only way.

  • Very true and in my very humble opinion the only way

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