Ann Treacy is a 45 year old married mom of two living on Cape Cod. Diagnosed with Parkinson's disease a year ago, she hasn't let it slow her down. She is a product designer with 20+ years experience and an enthusiastic mom blogger who shares nature observations, creative crafts, and book lists at Doodles and Jots.
I wake up and reach for my phone. It’s almost seven. I turn over and feel my right arm vibrating. I want to look at it and see if there is a visible tremor or just the feeling, but my eyes are closed and my arm is under my pillow. I turn my awareness to the nerve pain in my legs, like ocean waves that swell and crest deep in my shins. It feels a lot like toothache pain or a sinus infection. Then the strings in my feet begin to pull and my toes start to curl ever so slightly and I wonder if this will turn into the painful foot cramps so many of my Facebook YOPD friends suffer with.
“Good morning Eamon, did you go to the bathroom?”
Eamon returns from the bathroom and cuddles with me in bed for a moment and I try and break out of my overnight blackout.
So begins my morning as a mom with Parkinson’s disease. Time to get up. I have no problem getting up. I make the coffee, make my bed, pick school outfits, fix breakfast, take my pills, pack snacks and lunch, make sure homework is finished and packed. Then I sit and sip my coffee while I catch my breath and verbally prod my kids along with their morning responsibilities. I try not to rush in the kitchen. The adrenaline causes my symptoms to worsen and things start jumping out of my two left hands.
My daughter usually fixes her own hair but today I am helping her. Thankfully she brushed out the tangles. That is the hardest part for me since my left hand won’t grasp the hair to prevent pulling. I spritzed her hair, part it, and give her a ponytail. Getting the ponytail just right is a challenge but I can do it.
Time for school
We get to school but where are all the cars! I panic a little. What time is it? Oh, okay I am just a little early. (I sometimes get these anxiety producing moments of disorientation.) On the way home I call to reschedule a Movement Disorder Specialist appointment in Boston for insurance reasons and out of the blue it hits me. I have Parkinson’s Disease?! It still hits me like that sometimes even after a year of knowing.
Later, I pick my kids up from school and we get lunch, egg sandwiches, green tea and milk at Dunkin’ Donuts. The kids want to take our lunch down to the food court. I agree so they can watch the carousel, even though I will pay for carrying two teas across the mall. I have almost no stamina. It is hard to explain but carrying those teas across the mall is the equivalent of stacking logs for a couple hours. We find a table.
Sometimes I wonder if I look different. I don’t think I do but I do some weird things that are hard to control like holding my left arm and hand in a strange flexed position. But I don’t worry about that today. Today I happily eat my egg sandwich with jelly-arms while my kids watch the little kids go round and round.
We head back to the school for my daughter’s conference at which I made sure to keep my hands in my lap so they don’t go thump, thump, thump on the table like they did last time. I don’t have a visible tremor when (I am relaxed but if I have a little anxiety I shake.) The conference was great. Annabelle makes me so proud! I tell her teacher I won’t be able to volunteer for the upcoming field trips. I went on one last spring and it did me in. I couldn’t move at all after. I keep thinking about it for the rest of the day though. I’m disappointed. I want to go. Maybe I should push myself. We say goodbye to Annabelle’s teacher and I give her a big exaggerated smile because I know it will just look like a regular smile due to my face masking.
Getting ready for bed
That night, I am so out of energy when we get into my bed to read together. I make sure I have water on my side table for when I wake up choking which happens at least once a night. I am not complaining though. I usually sleep pretty well compared to many others with PD. I help Eamon with his take-home reading while Annabelle reads her book, and then we read a couple library books together. Too many words though and I’m starting to slur and my mouth and jaw are so tired. My eyelids are heavy but my kids are wide awake. I put a movie on for them so I can dose.
“Want me to rub your hand?”
Eamon will massage my hand if it feels crampy. I don’t need it but I let him do it anyway.
Not even the funny feeling in my legs will keep me awake right now.