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Topic The Parkinson's way of Life Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2014.10.16 00:50
Reflecting these past few days the mantra of PWP everywhere has been popping up with regularity "get me through this" or "gotta get through this" it's all something of the same sort for all Us PWP. I don't care where you are in the disease, just diagnosed? "get me through this" Trying to get use to medication? "get me through this" going shopping? Get me through this" As We walk the Parkinson's path we just try to get through each step along the way. I don't know why but things like this aren't discussed enough. Maybe We have a sense of bravado We Parkies. We're stuck in a chair we don't want to admit it, we're going to get out but we need a minute "We gotta get through this"

Parkinson's changes our lives that way we really don't want go to thinking planning stuff not like pre-Parkinson's. When plans are made expectations are set after all it should go as planned right? Nope any and all plans become a serious of smaller "Let me get through this" steps. And it starts at the git go because we are all walking in Parkinson's upon untraveled ground for each of Us. We've never been at that exact point of our disease before. This can make traveling down Parkinson's Lane with us quite a trip. At times we're not much company and this isn't only physically but we may in mid discussion have a point to make but between our brain and mouth our thought took a detour! So we can shut up concentrate to get it back to "get through it" and it seems like we're shutting the others out which in our way of getting through it might in some way be shutting out we're really trying to get back and through what we were going to say. And when We're "getting through" something like shopping or such I imagine We can look quite the sight! A vacant stare or blank look as we are inside our bodies trying to will everything we have to make it through whatever.

Things like this are ripe for mis-communication I've at times read things where a caregiver gets rattled because they turn around and the PWP has a glare with furrowed brow caregivers think the PWP loathes them! Most times it isn't a look of pure hatred it is hard concentration to get through a spot we're having while your back is turned so you don't see we're in trouble and get all concerned and worked up over it. "We're getting through it" the startling you is just an added perk (I know I'm bad at times lol) Just some late night rambling for a parkie brain thanks for putting up with it. When it gets hard remember break it down to more manageable steps and "We'll get through this" take care, best of luck and hang in there

By jcoff012 On 2014.10.16 17:36
As always, food for thought, Al. Funny thing, we just have had a series of events that gave us pause, too. One, we were doing something simple...a deciding on a TV show...of course, he wanted an NCIS type and I wanted "The Voice"... He changed it to a station in between, and when I asked what he was doing, he said, "I have to SIMPLIFY this...I can't reason it out...No more multi tasking...I don't see both sides anymore...WHERE should I go...Which one?" It was a bit sad to see his honest confusion, as if making such a simple decision was a traumatic event....The next day, he said, "I wish things didn't get lost inside my head..I KNOW what I need or want to do, but sometimes I get so confused." All of this from a man who managed multimillion dollar projects and had to plan and carry out very detailed reports at multiple levels, often several at once...

As you said, Al, PD is often misunderstood by us caregivers. We need patience and love, but the frustration level for the PWP often is experienced by us as anger...We know in our hearts you are right, but the reality is that no one prepared us to deal with a PWP's loss of communication skills, so there are hurt feelings and misunderstandings. Trying to wade through all of the changes is difficult for all of us, but we will go on...Thanks for your perspective and experiences..and for sharing such valuable information for us all. Hugs, Jane

By olpilot On 2014.10.17 22:40
Al thank you thank you thank you. I have had so many of these discussions with my wife who is very informed but when it comes to me it's a bit different. The look on my face or the way that I say things is not as simple as someone would think. I reality we do not control much of the simple things like facial expression or verbal tones. . Those take a tremendous amount of energy and sometimes I just don't have it. Lately it is getting worse every move every thing just takes more effort.

I had to give up woodworking, I just started to do things that after I realized what I had just done at the table saw scared the hell out of me. Sometimes I find that I have been just staring off into another place, don't know where or why but I know at the time my mind goes blank and I can sit like that for a long time. My expression never changes and I should be able to say what's going on, but I don't know.

Anyway I thank you for your insites and information it does help to explain why I am me.

By LOHENGR1N On 2014.10.18 00:08
Steve what you are describing the sitting staring off blank is a form of freezing.I don't have any sage advice to give just the name to put to it. But that in of itself may help. I do the same sometimes, many of Us PWP do it. Knowing what it is and we're not alone experiencing it can help us a little, it won't stop it but at least it helps knowing we're not too weird for a Parkie. It's part of belonging to the club. Hope this helps a bit Steve, at least you can say what's going on now. Take care, best of luck and hang in there

By ResistanceFutil On 2014.10.18 18:00
Your original post reminds me of another wise man -

"You just keep pushing. You just keep pushing. I made every mistake that could be made. But I just kept pushing."

Rene Descartes

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