June 4

It’s raining outside. Yesterday it was raining inside, outside and down my face. But today is a new day and hopefully, a better day. When others are staring and laughing at those of us who can’t control their movements – I suppose I can even offer a smile. But the fact is, those of us with PD stare it in the face day after day and on a bad day, moment after moment. It is not a joke. It is real. We don’t laugh when we shake uncontrollably; we’re focused on getting it stopped. We don’t make light of our loss of memory; we’re trying to figure out if we can and how to – get it back.

Don’t get me wrong – we’re not a serious, pessimistic sort. Why, even the other day I was asked to ‘bring it down a couple notches’ because I was happy – full of joy. (Why would you want to tell someone that?) At any rate, PD’ers are still quite full of life, but it’s a different life. It has some bumps in the road that are sometimes quite literally a struggle stepping over. But, bumps, potholes, downed trees or whatever, we are a determined bunch. We will shake our way through the obstacles in our way and persevere. And if we forget where we’re headed, we’ll ask someone.

It’s raining outside but today, the sun is shining inside and no, I will not bring it down a couple notches. I will live today as if it is my last and hope that I can do the same tomorrow and in the meantime I would ask just one thing… find something else to laugh at. We’re not shaking for your amusement.

This comment came in this morning and goes well with Sharon’s contribution a few days ago. I felt it needed to be part of the submission itself:

Flash – a PD caregiver wrote:

Living as the partner of someone with PD is a daily challenge as well, not for the same reasons as if having PD ourselves, but for a whole host of other reasons such as: Are you getting the correct dose of your 7 drugs ? Did you remember to take your meds? Are you feeling down, or are you just not showing as much expression in your face as you used to (a symptom of PD)? Is this current mood really you or is it your anti-depressent? Do you want me to help you or do you need to feel the satisfaction of doing it yourself?

I am not complaining, as all of these questions flow out of my desire to be a great caregiver, but each day has its own unique challenges.

So in answer to:” Why, even the other day I was asked to ‘bring it down a couple notches’ because I was happy – full of joy. (Why would you want to tell someone that?!)” – it might just be that someone who loves their PD person very much is trying to answer one of those questions and figure out how to help them through today.

Flash

Thanks Flash for reminding us (me!) that the caregivers have their struggles, too, and that we really are ALL in this TOGETHER

June 8

Oh my gosh – it’s my father in-laws birthday and I didn’t send his card. Oh wait. My daughter’s flying down there tomorrow and taking it with her. I forgot. Again. Oh well – Happy Birthday, Nano!

Forgetting… It is a common occurrence in my life anymore. Just the other day my son was telling me something (I can’t remember what) and said, “Could you please just try and remember this?!” I did. I did try. Really I did. And I think I remembered for as long as I had to. I just can’t remember for certain.

What gets to me is that I know this woman who is 97 and she can remember more than I can. It’s frustrating to sit at the table at dinner when all the kids are over and they get to reminiscing and say, “Remember when…?” I look at them dumbfounded. “Uh no, can’t remember that one.” Sometimes though I act like I do remember, as all eyes are once again questioning in my direction as to whether or not I have anything left in the crevices of my brain. Some days I’m sure I can hear it rattle when I move. Well, at least there’s something in there… somewhere.

Don’t you wish we could just pull into a ‘Doc in the Box’ for an oil change? After all, my neurologist likened having PD to losing the oil in your engine. That’s what all the meds are supposed to do – replace the oil (aka dopamine). After all, if that’s what the meds are supposed to do (which we know full well they don’t work the same on all PD’ers and they may not even work at all for some), shouldn’t we be able to leave the doctor’s office with an oil change and run better for awhile? I know that’s my neurologist’s goal. However, reality often clashes with goals and goals are often not realized.

Anyhow, I think when I go in for my next oil change, I’ll ask him to see if there’s a way he can adjust my memory bank. Check and see if maybe he can make a deposit or find one that wasn’t posted. If I remember.