Parkinson’s is difficult in many ways. From walking difficulties, to frequently feeling fatigued, speaking difficulties and….the list just goes on and on. But you know, it’s one thing when the un-invited guest tries to make a mess of my own life. But, I really hate it when the little bastard messes with those with whom I have a close personal relationship. Particularly the relationship I have with my family.
My kids are currently at their grandparents house. To take advantage of the extra free-time, my wife and I went to a garden center and picked up some plants, soil, and other supplies to spruce up the garden in the front yard. Upon returning home, I helped get her setup for the yardwork by placing the heavier items where they needed to be before I headed off to take care of some other things that needed to get done. While doing the work I needed to get done, I started to get really really fatigued, and absolutely freezing cold. If you haven’t had the pleasure of experiencing Parky fatigue, count yourself as fortunate as it’s the most absolutely drained feeling I have had. When I get it, It’s hard to even speak as it’s tiring to move the muscles in my face. It’s particularly bad when I’m also having trouble regulating my temperature, and I’m chilled as I was in this particular case. So I went in the house to lay down for a bit on the couch. This is when the trouble started.
As I lay on the couch I knew there were a lot of things that needed to get done: dirty dishes in the sink, vacuuming, pick up the clothes that I tend to leave everywhere, help my wife with moving heavy things outside, to name a few. But I was so absolutely drained it didn’t matter how much there was to get done, I could barely move and needed to recharge. When my wife came in the house and asked me, “are you going to do anything?” I knew by the tone of her voice that she was not pleased.
Thanks to modern medicine, exercise, and a good diet, I’m able to thrive much of the time. I have periods of such great symptom control, I can occasionally almost forget I even have Parkinson’s. For those around me, it’s even easier for them to get used to having a highly functional father or husband….and come to expect that all of the time. Even though my wife knows I have Parkinson’s, I had been having such phenomenal symptom control for quite a few days, that she got used to that. Besides, even when I am having experiencing symptoms, most of them while obvious to me, can often be missed by everyone else. So when I’m feeling absolutely drained of energy to the point I’m about to fall over, I could be the only one who knows it. When I’ve had on overload of activity and the only thing I want to do is go hide for an hour to recharge my battery, I’m likely the only one who can tell. When I’m in pain, achy, am having trouble regulating my temperature, having trouble walking, or whatever fresh hell Parkinson’s has decided to unleash at that particular time, oftentimes all that my family can see is a Dad who seems to be a bit lazy, aloof, and reluctant to join in the family activities.
In this way, Parkinson’s may be the only chronic disease where you are actually in a way punished for how well you manage the disease. Because no matter how awesome you do doing at mitigating symptoms, sooner or later Parkinson’s is going to catch up to you. The unpredictable nature of Parkinson’s is such that I can experience one, two, or many consecutive great days of minimal symptoms before I have a few hours or even an entire “off” day. And it seems the more successfully I’ve been able to control the symptoms, the more blindsided and disappointed I, and those who are close to me are by the “off” episode.
This is where communication is key. “You forget I have Parkinson’s”. I tell my wife. I don’t like to pull the Parky card. I’m not really excited about having to make excuses for myself. But on the other hand, I’ve come to realize that I, and those around me are just going to have to accept Parkinson’s as an unfortunate reality. There’s nothing I can do about it. I already have Parkinson’s disease. I shouldn’t have to also feel bad about the effect it has on me. The initial annoyance that my wife had for the lack of progress being made on the many chores that needed to get done quickly dissolved as I told her how I felt. I could tell she was still disappointed, but I reminded her that I would be back in action fairly soon. And I was.
So you can see how Parkinson’s can, over time be hard on relationships. Again, the key is good communication. Not being afraid to let people know how you feel. But also, on the other hand, the Person with Parkinson’s (PwP) does, I believe have some responsibility to fight. Be willing to accept that there are going to be times that they need to push through, get things done, despite this wretched disease making it more challenging for us than non-Parkies can possibly understand. Not just lay over and use Parkinson’s as an excuse. But to truly fight that monster. To quietly do battle with our personal enemy, without hope of anyone truly appreciating the struggle, is the Noble task of the Parkinson’s warrior.