Today my mom blogger friend Valerie from Glittering Muffins and I are writing about our experiences with Parkinson’s Disease for Parkinson’s Disease Awareness Month in April. Read Valerie’s story here.
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 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.
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 my sister. She just got back from Florida and we catch up a bit. I’m home now and we end the call. I want to get a few things done before I pick my kids up from school. It’s a half day for parent/teacher conferences. I eat then work for a while at the computer. 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. Then it crosses my mind that I haven’t walked since all the snow and that I should walk on the treadmill but I don’t. My left hand struggles to keep pace with my right as I type. Half my words need correcting. My eyes twitch. Am I tired? No, I remind myself they just do that. I need to start getting ready. I cringe in pain as I push myself up and waddle to the bathroom. My muscles have locked into the sitting position. The longer I sit the harder it is for me to get up.
I take my shower, always holding on or leaning against the wall for balance and I move in slow motion so I don’t drop things. I also catch myself moving as little as possible. I do this a lot but I don’t know why. I blow dry hair with a big round brush so I can add some fullness to my thinning hair (even though it uses up way too much arm strength).
I take my pills again and I’m out the door.
I pick my kids up from school and we head to the mall to return my son’s boots. They are new this season and one has a crack in the sole letting moisture in. The sales woman doesn’t know how to take a returned but tries and tries and as I stand there my legs get shakier and shakier. Then I remembered to march in place, a technique I learned at physical therapy. And luckily there were several racks of costume jewelry to entertain my kids.
“Look at these interesting necklaces, mom. This one has a heart and a key. This one has a heart broken in half.”
“That’s for BFF’s”, says Annabelle.
Then we get lunch, eggs 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 is a strange flexed position. But I don’t worry about that today. Today I happily ate my egg sandwich with jelly-arms while my kids watched the little kids go round and round.
“Mom are you off your Grain Brain diet?” Annabelle asks. She is disappointed I haven’t been sticking with it.
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.
We go home. The kids play. They have such a great imagination. We do homework. The kids play Minecraft together and I work on my computer too. My husband Patrick stops home but doesn’t stay long. He is off to his second job. I can’t breathe and my left forearm is burning, oh yah, time to take my pills against. In a half hour I am breathing easier and my arm pain is going away.
It’s a la carte for dinner tonight and I reach for some leftover lentil soup. I shouldn’t, because I am having difficulty swallowing today. I grab it anyway. To heck with Parkinson’s Disease telling me what I can and can’t eat… Lentils are getting stuck in my throat. I can feel them caught and no mater how much I drink they stay put. A half hour later it burns a little but eventually gravity helps me out. Somehow my swallowing reflex pushes food up instead of down especially if my pills are wearing off.
More sitting as I read and drool a little (which no one will ever see because I wipe it away so fast!) followed by more painful standing and walking then more pills.
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 good 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 doze.
“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 anyways.
Not even the funny feeling in my legs will keep me awake right now.
* * *
My days revolves around my family, our activities and interests and Parkinson’s Disease which is my constant companion. It makes me cry sometimes especially when I am driving in my car alone. Despite the challenges I face I am still a happy person who loves life and I do get some relief from the Sinemet I take. There also seems to be a lot of optimism for new treatments and a cure. Here are some links if you’d like to learn more.
- A comprehensive summary about Parkinson’s Disease from the New York Times
- Helpful resources for people with Parkinson’s Disease can be found at Parkinson’s Disease Foundation and the American Parkinson’s Disease Foundation has a site specifically for young onset
- The is also the Parkinson’s Action Network, a volunteer organization that advocates for increased government spending on research for Parkinson’s and other neurological illnesses.
- And The Michael J. Fox Foundation that raises money for and oversees research.
Thanks for reading and don’t forget to check out Valerie’s post!