If PD doesn't own you, what does.... - Cure Parkinson's

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If PD doesn't own you, what does....

17 Replies

A lovely note posted by Hamish, I have just read. He cites a much used phrase 'PD doesn't own me' one I hear a lot .... doesn't define me, I may have it but it doesn't have me, etc etc.

And I agree PD doesn't have me either. But it could, very easily. So I am wondering as I sit in the same spotty pajamas's as last night, feet cold and full of biscuits, how do you stop it from 'owning you' and are you sure it doesn't?

I can only be sure about me, and these are my thoughts...

I think about my illness and how it affects me personally about 10% of the time, mainly when I take my meds, and that is all. I think about those living with PD and my contribution to the patient community about 40% of my time, this includes a bit of work.

The other 50% (and this figure is increasing) I am involved with projects which are not connected with illness at all. This normal world, is the balance I need to keep the phrase 'it doesn't own me' true.

I have what I call a 'wellness' or 'living plan' which is simply a shift in thinking, it means I don't focus on PD I focus on my life. An example would be I recently took the decision to limit my driving as far as possible to day light time as I find the dark disorientating. So is my focus on what PD has done to restrict my life and remove flexibility. No, not at all. It simply means that in the evenings I am generally home, and that's nice! So I have added to my activities an extra new home based project, which I know I have time for after 4pm.

This is simply how I deal with things. Having ideas, things to do, filling your time is crucial. Crucial to me.

17 Replies
hopet profile image
hopet

Thanks for your post. I shared your mindsets and thoughts with my brother. He has had PD for an year. God Bless!!

in reply tohopet

Please pass on my very best wishes and hope that he is able to find a good balance, it is very possible! :-) Merry Xmas!

Court profile image
Court

I also hope that PD doesn't own me but it does occupy my thoughts in a positive way. I try to find out ways in which I can stop it progressing, or at least stop it progressing quickly. I read articles and books and also find this site an enormous help. Unfortunately, I also have type 2 diabetes and possibly angina so have not been able to exercise as much, hence a weight gain. But I remain positive.

in reply toCourt

Well we all handle things in our own way, not one better than another simply the way we are. That is the joy of people. My point is I hope that people who say the words.... are truly not letting illness become a new career.... easy to slip down a slope I suspect. I make a big effort never too. As for progression well again it is a one on one thing, however nearing 10 years my consultant says I remain remarkable and I do. My view is PMA positive mental attitude, and all the good things I do. Everyday I wake up with a smile and then go and burst the day.... :-) Happy Monday :-)

Court profile image
Court in reply to

Quite agree with your comments. I look after two young grandchildren and also have two dogs so don't have a lot of time to wallow. Take each day as it comes. My consultant also seems chappy with my progress - or should I say lack of progress. Happy Monday, Tuesday etc.

alanrob profile image
alanrob

hi colleen, i agree about the driving in the dark comment,i also am finding this a lot more difficult lately so instead of thinking,this damn pd is restricting my driving options now,i need to replace it with something positive,i suppose its the same with all restrictions this thing puts on us,i wish i had your enthusiasm not to let it get the better of me i admire your resolve because i know how difficult it can be just to smile at times but the alternative is letting it drag me down and that cant be an option.(how is duns this cold morning!)

alan

kelso

in reply toalanrob

Chirnside! but yes near Dun's! It is frosty and cold which isn't good for us but great for photography. I do wonder sometimes where my endless bounce comes from..... to some it is rather annoying! But you know I seek it out, in truth. I surround myself with interesting things, people, projects all diverse all wonderful and they fuel the machine of me. If you feel lack luster go to a charity shop, buy an old record deck £5 and then spend your days buying old Vinyl !!!! its a peach! and won't bust the bank! I bought 1986 theme tunes the other day, played it whilst the decorator was here..... (a friend) "mastermind' came on and we were in stitches as I said 'you have 3 minutes and your chosen subject is paint!!!!' still giggling! Have we met?? btw

Hamish profile image
Hamish in reply to

Great Idea !! I'm off round the snowfilled streets of Aberdeen to find some LPs and introduce niece & nephew to some old technology and sounds :)

Your posts are insperational, thank you

in reply toHamish

you go kick ass and play a toooooooon LOUD !! teehee I have got 'Bad Manners' on at the mo! legend!

alanrob profile image
alanrob

we have met colleen,i met you at one of the branch meeting at the bgh a couple of years ago when you done a presentation and i was struggling to come to terms with my condition at the time,(whats new!),dont we all at sometime or other,your positive attitude is still shining through,i was also going through a custody battle at the time for my daughter molly which didnt help,that has calmed down to a large extent now although some bad feeling is always under the surface but i try and keep it there.

ah ha I recall now! glad to hear things are better for you! hope you have a wonderful Xmas :-)

alanrob profile image
alanrob

Thanks colleen,you too!

JanellenGrimaldi profile image
JanellenGrimaldi

Well, I fill my time with music and laughter and song, and other projects. I like your attitude, Henderson-Heywood. PD does not own me. I just feel the need to keep active and and I do things that keep the energy moving, such as playing my viola and devising new ways to do the things that PD has affected, such as discovering new ways of bowing on the viola.

I have officially had this illness for three years this coming January 2012. I went through a depression at one point, when I thought it was hopeless, but fortunately I recovered and made up my mind to have a LIFE, in spite of the thing. It does get in the way at times, but as long as I remain mobile and am able to stay off the poisonous PD medications, I will not be owed by the illness. I guess I am lucky to be blessed with a fairly strong constitution and a strong disposition. And yes, a PMA always helps, doesn't it?

Happy Holidaze! :-)

Marsha profile image
Marsha

I love reading the comments of those who remain positive and refuse to let PD define them. When I was a child my Dad would sing to me "you've got to accentuate the positive, eliminate the negative, latch on to the affirmative....."

I try to reflect that attitude every day. When I awaken I give thanks for all the possibilities of a new day. "This is the day that the Lord has made. We will rejoice and be glad in it."

While PD poses some inconveniences, it is so much easier to live with when we focus on what we can do rather than what we cannot.

NathansDad profile image
NathansDad

Thank you for sharing you perspective on dealing with PD. I have been bothered how PD is affecting my daily routines and how much it has affected my life. Thanks again!

Court profile image
Court

Hi Colleen

I have been reading some old posts and wondering where the people who responded to them are now. Your posts always did, and still do, draw in a large number of comments. Andy C always used to be a regular poster with his 'parties' and weekend posts. I know time and people move on, but I do miss the closeness of these times. The posts I have reread were from about 4 years ago and a lot of water has gone under the bridge since then.

Sue

in reply toCourt

My goodness has it really been so long !!

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