To My Family,
Now that I have officially been diagnosed for 5 years, I am coming to the disheartening reality that my Parkinson’s disease is progressing. I can see the deterioration in my physical health and the medications that I have used to keep symptoms under control are now becoming unpredictable. I find myself unsure what each day will bring. I know that you only want to support and love me, but you might not know exactly how to help. So I have written you a letter to give you some helpful hints as we travel this bumpy, dusty Parkie road together.
Mom, you know that I say I got Parkinson’s because you didn’t buy me all the Coach Handbags I wanted in high school (although there’s never been formal research to support my theory, it could be true). But the reality is there’s nothing that you could have done to prevent me from getting sick. In fact, I know that if it were possible to take away my pain and struggles, you would be first in line to take on this burden.
Dad, can only imagine the agony you have experienced watching your only daughter struggle with declining health. When every time the phone rings, you wonder if it’s me calling to say that I am having a rough day, or worse, that I am in the hospital again. But the one of the many gifts that Parkinson’s has given me, is the deep understanding at a young age, just how important family is. Thank you for always being my cheerleader and right by my side when things get dark. In know that you will be ready to zip over to California at the drop of a hat, with the Daddy ambulance and insulated, vacuumed-sealed Frozen Yogurt canister in hand.
To my brother, I know that as children we used to fight like cats and dogs, or how I like to think of it, Yetis and Chupacabras… just sounds more exciting. But as we get older, I realize that I have never said how proud I am of you. Up against your own health issues, you finished Optometry school, opened your own practice, married an amazing woman and had 2 beautiful children. I have to say, I’m a little jealous. And although I am scared for the future, I know that I will always have my family to fall back on if needed… assuming that I provide child-care for my niece and nephew.
Now let’s get into the list of helpful hints that you, my family, might find useful:
Perky Parkie’s Pieces of Advice:
-No, I am not being lazy when I fall asleep or need a nap in the afternoon. I fight fatigue everyday, which prevents me from having the energy that I once had.
-I may not show as much emotion as you have become used to, that doesn’t mean that I am not having fun, or that I am not happy.
-Everyday my mood could be different. I might be snippy, or I might be goofy. I don’t mean to be so emotional. It’s just me fighting an internal battle with the loss of the person who I used to be and I don’t mean to take it out on you.
-Even though I may not express it, I love you and appreciate everything that you do for me.
-Regardless of how many times you deny it, sometimes I feel like a burden.
-Push me to exercise everyday… even if I say I don’t want to. I may have apathy and will think of every excuse not to go to that Yoga class I used to love. Don’t let me sit on the couch doing nothing. Movement is life.
-If I seem unable to make a decision about what to eat for dinner, what movie I want to see, or what candy I want to shove down my face… limit my choices. Trust me, it’s way easier with 3 types of food compared to “What do you want for dinner?”.
-I know that I can move slow, but be patient with me. I have learned to accept that many of my vacations will be spent looking at your backside as you stay 2 hops in front of me.
-When you try to make plans or appointments and I don’t sound excited about the event, don’t take it personal. I don’t know how I will be feeling when it’s time to go to lunch, so making a set schedule can be challenging. I don’t want to commit to something and not be able to keep my promise.
-Don’t imply that I am making a bigger deal out of my Parkinson’s disease than necessary. Would you tell someone who has lost their arm in a violent shark attack that it’s not as bad as they say? You aren’t experiencing my pain and while sometimes my Parkinson’s can’t be seen from the outside…I can feel like I am losing my mind on the inside.
– Don’t question my Fro Yo addiction. The inability of practicing self-control can become an issue with Parkinson’s and let’s just say… they’re way worse addictions!
-Sometimes I like to have conversations that have nothing to do with Parkinson’s or the fact that it controls many aspects of my life.
-Just because I buy cool gifts for my family, like Marshmallow Launchers, or Nerf Footballs… it’s not necessary to shoot them at my head, a simple “Thank you” will suffice.
-Don’t let me become a recluse. Sometimes when I am feeling bad, it seems that being alone is better, but I need my PD Wolfpack to keep me strong.
-I am sorry if I run late, sometimes I’m feeling good, but when I get ready to leave the house, I realize that I am moving at a snail’s pace.
I am hoping that this letter has offered some clarity into my wacky and confusing world, but more importantly I hope that you know how much your love and support means to me. Without it, I wouldn’t be able to face these challenges with a smile on my face. Thank you.