« Why Yoga Can Be Helpful to Those Living with Parkinson’s Disorder | Main | Caleb Interviews Kate about Parkinson's from the Insider's Perspective »

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

Valerie Graham

Right on, Kate!

Sometimes, due to the fact that I am doing as well as I am and often receive similar comments as you, I am tempted to believe that perhaps it is all one colossal mistake-- that somehow someone along the way simply made a diagnostic error and I really don't have Parkinson's after all. However, running a tad late on my meds, despite the reduction that DBS has afforded me, or being a little under the weather or enduring other routine stresses that afflict everyone, is all it takes to swiftly burst that bubble of illusion!

Still in all, I prefer not to allow myself to dwell on what I have lost or am no longer able to do, and instead concentrate on the happier aspects of my existence, as I know you do also.

It's the proverbial catch-22! Sometimes I am feeling and doing so well that I am too embarrassed to park in the handicapped parking spot, even though that little placard was hard-earned! Or if I do park there, I feel compelled to adopt some sort of weird gait and a grimaced countenance upon exiting my vehicle as evidence to the world that I am in fact disabled.

It's the same sort of feeling I get when others ask me if I have considered returning to the practice of law now that I am doing so well-- I feel as if I am trying to "put one over" on "them," shirking my adult responsibilities. Only those of us with the illness know just how quickly and unexpectedly the tide can change!

Paul Zeiger

I like looking as "normal" as possible, if only because it helps me to feel that way. If somebody is underestimating my Parkinson's, and I don't want them to, I can always give them a tidbit or two from my history to revise their thinking.

IndyMama

Kate! This is EXACTLY how I have felt lately. I tell my husband that it is a similar feeling as in very early pregnancy, when no one knows you're pregnant but you; You feel it, but no one sees it. It's very isolating.

I have received comments, especially when I am rested and I've remembered to take all my amantadine, that I don't look like I have Parkinson's Disease. (Of course my age doesn't help.) I tell them that I do, but they have to look closely. Or I simply say that right now the PD just makes life really difficult for someone of my age. My arms aren't flapping wildly, so I don't "look" like I have PD, so people always look at me funny when they say I do. (Or if they have made fun of my walk, they become pretty embarrassed.)

And as Valerie said, "Sometimes, due to the fact that I am doing as well as I am and often receive similar comments as you, I am tempted to believe that perhaps it is all one colossal mistake-- that somehow someone along the way simply made a diagnostic error and I really don't have Parkinson's after all."

I've thought the same thing before, on my good days. I can remember times where I've thought, 'Maybe it IS all in my head.' And then reality hits and the PD kicks my butt without my invitation, and I realize, once again, that the experience is all too real. :/

Good post, Kate. This is exactly what I've been thinking about.

The comments to this entry are closed.

My Photo
Top Health Blogger - Wellsphere

Categories