Cherries On Your Sundae

I'm still in recovery mode from my vacay/staycay in St. Louis. I was way out of my normal eating mode, eating every snack mom had in the house, plus eating the Gooey Butter Cake that I cannot get anywhere except St. Louis. If you have never had it, fly immediately to St. Louis and get a piece. Maybe have another before you fly home. Maybe grab an extra piece for the plane ride.  Did I mention I also took home a pan of walnut squares in my carry-on? Thanks mom, they were gone within 24 hours of arriving home. :)

So here I sit, bloated and uncomfortable, trying to get back into my routine of work and exercise and being an annoying slightly-helicopter-end-of-school-year-parent to my seventeen year old son, and of course being a care partner. My thoughts today and the last few days have been about relationships, especially the ones that have been established and moving along for a long time before PD became part of the vocabulary. 

I think that many of the people reading this have established relationships, and PD came and probably dropped like a bomb into the center of your world. I think for all of us, for a while after the diagnosis, the PD is all there is. There is only concern and focus on how we will deal with the PD and who has what role. But, what about that relationship you had before PD? It’s like that saying, wherever you go, there you are. You are trying to cling on to anything solid in the middle of a PD tornado, but once the wind dies down a bit, even if the roof is gone you are still in the same house, on the same street. The relationship you had before is still there, and whatever issues you had with your partner are still there. No one with a long-term relationship is conflict free. We all had stuff, and the stuff doesn’t magically disappear because PD comes along and knocks the less-critical stuff into the background. 

There is a danger for all of us in this diagnosis. I don’t have any statistics (and not sure I would want to know) but a lot of couples don’t make it through this. It’s hard start to finish and top to bottom, and it exposes every crack in your relationship.  It peels back the veneer of you as a couple, and your individual shells as well. Maybe you were never sick or hurt before in your life, and you can’t deal with it gracefully. Maybe that loving care partner discovers that they don’t have the grit to get through some of the things required to take care of someone who is ill. 

Mo and I are not different than any other couple out there in this respect. For various reasons, we have had probably a little more non-PD health stress all along than most married couples. I had to make the choice long ago to accept that I would have to deal with those health issues forever if I chose to stay in the relationship, and we crafted a life together that was a balance of what we had been given and what we chose to make of it.  It took me a long time to learn that happiness can be a choice too.  You can let the stuff you are not getting eat your brain and make you sad every day.  Or, you can choose to accept at some point that you have made a tradeoff and gotten some really great things in return and mostly leave the other things behind.

Now we have the PD cherry on top of our ‘sundae’ lol.  Although we have been somewhat balanced for awhile with stress of other heath issues, this doesn’t mean those other issues have disappeared.  Many of you out there have experienced this same double whammy, whether it is previous health issues or just basic relationship stuff that can’t really handle one more chocolate sprinkle or marshmallow thrown on top.  

My point after all this wandering and steam of consciousness is that there is a point where we have to come OUT of the PD tornado and come back to ourselves and remember that we have a life and issues and relationships completely unrelated to this horrible thing.  After you spend a bit of time inside your head, you have to come out and play again.  There is a danger of getting sucked so far into dealing with PD and all it’s ramifications that we forget about the larger world.  

Care partners, your partner is more than a Parkie.  Parkies, your care partner needs your attention so they can be reminded that you still see them as a husband, a wife, a lover.  PD is awful and thinking about the years ahead is soul-crushing some days.  But what we are all required to do right now is make a choice to be happy today.  We are not our Parkinson’s.  It’s just another thing about us, but it is not the whole.  All those other things in our life that were good and bad before are still there, and we need to come back to them and pay attention and keep working on them.  If we ignore things because our PD is too much the focus, those other ignored issues may eventually tear a relationship to shreds.  

My advice to everyone is to make time, either daily or weekly, for a PD-FREE zone.  One hour, two hours, an entire day with no PD chatter.  Whatever you can manage.  It’s like those technology-free days I tried to do awhile back where I did a Sunday with no phone or computer.  It’s amazing what happens when you purposefully set aside time to let something go, even if it is a short time. The catch?  Your PD-FREE time has to be the two of you together.  It will get you focused on each other as people rather than as Parkie and Care Partner.  

My apologies for the rambliness of this post, but relationships and their workings are tough to pin down.  Hopefully you got something out of this.  Go forth and create your PD-FREE space!