I have been having a little bit of a challenge with my Parkinson’s disease lately. It has been, shall we say frustrating… yes, I can think of more descriptive words to describe the current state of my health, but I will refrain. I used to be able to know my body and how my symptoms respond to my everyday agenda. But lately, my Diva Parkinson’s has been making unscheduled appearances and she is wearing out her welcome.
In the morning, I wake up and shuffle out of bed, brush my chompers and then pet my dog Crash (who is always appreciative that I brush my teeth first). I slowly move towards the kitchen, trying not to get distracted from my mission of getting drugs in my tummy so I can start my day. Pour a bowl of boring cold cereal and then I chug my cocktail of medication… then I wait. Within 30 minutes I start to feel my Sinemet kicking in. Ahhhh yes! Now I can tackle the day with the confidence of knowing that I am good to go until lunchtime.
But now the fluctuations of my “on/off” time have become unpredictable. It doesn’t matter if I take the exact same dose of medication, at the exact same time… each day has been different. Sometimes I will be so dyskinetic I can barely sit still. Although this has made my apple watch happy (which tracks my daily steps) thinking that I am hiking 7 miles a day, it can make for an exhausting afternoon. Or I can be “off” feeling rigid and slow as a sloth… an adorable sloth of course.
And if that wasn’t enough of a roller coaster ride, I don’t know how long my symptoms will last… could be an hour…. or last all night. This has made it difficult to fill my social calendar, seeing as I don’t know how I will be feeling at any given time. I am still optimistic about finding stable ground with my Deep Brain stimulation and the perfect combination of medications. But I am also realistic about the progression of Parkinson’s disease… Inconsistency is like the “free gift with purchase” when your buy the PD package.
Now you might be feeling sad to hear that I am having some trying times, but I don’t focus on the negative. I don’t let the fear of Parkinson’s take any space in my head. I don’t look at what I can’t do anymore. I don’t waste anytime worrying about the future “what if’s”. I stay in the present. I am grateful of what Parkinson’s has given me. My life is full of love from family and friends. My PD wolfpack is strong. So instead of stewing about the loss I am experiencing…. I focus on what I can do.
I can go hiking with my dog Crash in the Arizona desert…in the winter of course! Even though I may move slow, or may have to take breaks, I can still get on that trail and enjoy the cactus… I mean fresh air.
I can embrace the suck. I got the “fuzzy-end-of-the-lollipop” kind of life being diagnosed with Juvenile Rheumatoid Arthritis in my teen’s, Colon Cancer in my 20’s, and then Parkinson’s disease in my 30’s. But I can make a choice to be positive about the gift I can’t return and embrace the uniqueness of my life… hey, my mom always said I was special!
I can exercise everyday. Although some days are better than others, I still push through it. Being a PD ninja warrior princess is a hard job, but someone has to do it!
I can find Fro yo in all parts of the world, from Boston to Amsterdam. I swear they must put crack in it.
I can get involved in my Parkinson’s community and become an Ambassador for the World Parkinson’s Congress (WPC) 2016 in lovely Portland, Oregon. If you haven’t yet registered to attend, do it now…click here! If your on the fence about going this year, let me persuade you. Then Congress is a 3-day PD fiesta. You will be surrounded by professionals in the field, care-givers, and of course Parkies… lot of them! Last WPC held in Montreal had almost 3,500 attendees from around the world! Are you getting giddy yet? The WPC only happens every 3 years! And what even better? I am speaking at two of the events…you in?
I can be a dork… like really dorky.
I can go zip-lining over massive waterfalls in Hawaii without peeing my pants. Alright, so maybe I did… but it wasn’t a lot, just a squirt.
I can find inspiration and passion in things that have nothing to do with PD. Parkinson’s is a huge part of my life, but it’s not my whole life… it doesn’t define me.
I can still Ballroom dance. Yes, you can say it… I make Parkinson’s look good!
I can win awards like a boss! Hey, I can’t help it if I am a winner…
So I think that I have made my point here. Yes, things can be challenging, but I focus on the positive. The great people that I have met, the opportunities that have come my way, the friendships I have created and the Parkinson’s adventures I have had. I won’t focus on the what I can’t do, but what I can do… Like rocking this Yoga pose… what Parkinson’s?