Thursday, October 30, 2008

Can We Ignore Parkinson's?

Don't we all wish we could ignore Parkinson's? Wouldn't it be nice if we could simply pretend that it doesn't exist? How difficult or easy would it be?

I am usually up to my neck in PD - research, support groups, conferences, fundraising, blogging. Sometimes I get tired of dealing with it all, so I just stop. I stop blogging for awhile. I don't read PD related emails. I ignore all the invitations to PD events. When it becomes too much I simply pretend like it doesn't exist. I drop it at the door like a muddy pair of boots. But as much as I would like to simply turn it off, I never can. I have spent a lot of time online recently doing pretty much every thing I can think of except anything having to do with PD. (well, okay - I have exchanged a few emails with PD friends and my partner working on the charity ball) I made a point to see how long I could go ignoring PD. I wanted to find out how stressful all my extra curricular PD activities actually are, and if ignoring them would somehow, in some way, return my life to "normal," the way if was before PD. Turns out, you can't ignore PD.

While I may have been able to temporarily turn my back on blogging, support groups, etc., I can never turn my back on my husband. It is virtually impossible to ignore what PD is doing to Keith. I can not ignore his exhaustion, the tremors, the stiffness, the reminders to take his medication on time. I certainly could not ignore the guilt I felt over my little experiment. Who am I to turn my back on PD when Keith will never be able to? If anything, he will have to devote more and more time to it as the disease progesses. Trying to reconcile that difference has been more stressful and more painful than actually facing PD head-on.Since Keith's diagnosis, always in the back of mind are two words repeated over and over - do something. I hear it constantly. Do something, do something, do something, do something, do something. While I can't stop the progession of PD in Keith and I certainly can't make it all go away, much as I'd like, I CAN do something. I can do a lot of something. Through blogging and activism, I can reach out to others in similar positions. I can educate those that may know very little about PD, or help their loved ones and caregivers understand that they are not alone. I can help raise awareness and put together events to fund more research for a cure. I can (I hope) inspire others to continue living their lives, PD and all, to the fullest, never taking one day, one moment, for granted. If I ignore PD then I put an end to what Keith and I feel is our mission - to educate, advocate and inspire, and that just won't do.

I realized that I genuinely enjoy all that I do in the PD community. It has become such a part of me that to ignore it would be attempting to ignore a large part of who I am. To turn my back on PD is to turn my back on Keith, because every single thing I do related to PD is ultimately for him. So to answer my own question - no, I can not ignore Parkinson's, nor do I want to.

1 comment:

Carol D. O'Dell said...

I understand the consistency that comes with Parkinson's. I consider myself an "artsy" type, and so being chained to a daily regime of PD meds and treatments--and how very structured my mom's life needed to be in order not to throw her off kelter--I learned to not resent routine.
Like you, I had to give my mind a break--garden a little, paint, call a friend...but I was always on a short leash and my thoughts, my heart, and my mom's needs would call me back.
Being a spousal caregiver creates a deeper emotional bond, and I can read your love and devotion even in between your words.
~Carol O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir