Tomorrow is Christmas Day. Although my family won’t be having a traditional holiday, like many families across the world due to the fear of COVID, I find myself reflecting on past holidays that I had the pleasure of spending with my nephew and niece. Ethan is 13 years and Maddie 11. I’ve been known as the long-distance Aunt Ally who lives in Anaheim at Disney’s Cinderella Castle. They live in Arizona, so my visits revolve around holidays or summer vacations when they come to my palace in Southern California.
Watching them grow into the young adults they are becoming. I’ve had a little peek into how their minds work around the knowledge of Aunt Ally having Parkinson’s disease. I’ve tried to explain in language that they would understand, saying things like, “my brain doesn’t work as yours does… something is not right with my brain… it doesn’t make the normal chemicals that a healthy brain should.” I was about to see what they thought of Aunt Ally’s messed up brain.
Like Christmas 7 years ago, when I realized that every gift I would give them would find a way to be launched directly at my noggin, whether it be a foam football or a Nerf Elite Rhino Fire Blaster… ok, so that was asking to be pelleted by foam bullets straight to the head.
I got smarter with my gift selection. One year I got them a marshmallow launcher. I mean, how could that become a weapon of destruction? Death by sugar… sign me up. Within minutes of opening the bag of marshmallows, Ethan had loaded the firearm and lined up the shot. I brace for the mushy missile to hit its target, but at the last moment, Maddie jumped in line of fire and yelled, “STOP! AUNT ALLY’S BRAIN IS BROKEN”. I couldn’t help but laugh.
A few years later, we were all getting seated for Christmas dinner, and Ethan puts dibs on who is sitting next to Aunt Ally. As he gets to his seat, he notices the stack of pills next to my drink and asks, “Do you have to take those every day?” I respond, “Yes, I do.” Without missing a beat, he questioned, “Forever?”. I say, “Unfortunately, my brain isn’t healthy, so I have to take these pills to help.” He responds, “Will I have to take them?” I say, “I don’t think so. Your brain works perfectly.” One thing came out of his mouth… “Oh.” Then he looked down at his mashed potatoes. It was like seeing the gears grinding his head as he was trying to unpack what I just said.
Today, we had a proper gathering… following the CDC guidelines, of course… to celebrate the holiday. My Dad and I had a chance to ask my niece and nephew if, in school, they have learned about the brain and how it controls the whole body. They enthusiastically said yes in their science class. We asked them if they knew what Parkinson’s disease was. Ethan glanced over at me. Maddie says, “yeah… you get all shaky (demonstrated with a hop and shaking her arms wildly in the air).” I mean, hey, you got to give the girl credit for the very realistic visuals. I asked if they knew what chemical your brain creates that helps your body to move. Maddie yells, “Dompamite!” I told her, “close, but it’s called Dopamine.” Ethan chimed in that I could take pills to fix the shakiness. Maddie added, “yeah, but it will make you look drunk.”
What impressed me was that they were describing the Dyskinesia that I experience after taking my Sinemet. I don’t have kids unless you count my dog Crash, but he has a totally different view of what Barkinson’s looks like. I wonder what you all tell the young people in your life about what Parkinson’s is and what it means to be a Parkie. It may be your own children, grandchildren, or maybe a friend’s kids. What do you say to the growing minds?
I hope this blog finds you and your family healthy, happy, and safe. Happy Holidays.
Thank you!!1
Allison, I’m counting on you to be a leader at http://www.weTalkPD.com
The support group meeting that never really ends.
http://www.weTalkPD.com (Parkinson’s
http://www.weTalkMD,com(on call doctor)
http://www.weTalkAZ.com (Alzheimer’s
http://www.weTalkMS.com (Multiple Sclerosis
http://www.weTalkRA.com (Rheumatoid
http://www.weTalkFP.com (Family Practice
http://www.weTalkD2.com (Diabetes type2) and more….
It is interesting – some young people I know have reacted to my condition, and asked questions about it, in a much more thoughtful and meaningful way than some of the adults in my life.
Kids may have fewer life experiences to draw on, and in some ways that is good. They have a way of getting to the heart of the matter sooner.
Season’s greetings to all.
My granddaughter is 7 now, and ad I was only diagnosed 3 years ago and the medication is working well, all we’ve talked about is that I have to take so many pills at just the same time every day. And that it’s a disease that makes you shake and when it eventually gets bad enough , I’ll have to leave my apartment and live where people can help me more.
Allison, Merry Christmas and a prosperous New Year’s. As I always do, I enjoyed your creative and informative writing style.
Our RSB group is well and strong; masking, social distancing and limiting in numbers. We frequently have young interns coming in working with our community and it serves multiple purposes, to include giving young folks needed visibility to PD. In addition to RSB, we also have high intensity exercise which the staff choreographs in the most innovative ways. Thanks again for sharing your meaningful experiences. And by the way, your hair looks great as usual.
Merry Christmas!! Hope Santa and 2021 are good to you!! Keep writing the good stuff.
Dan,
I will keep writing as long as you keep reading! Happy New Year.
Alison, I have had the pleasure of having to describe this illness few times in the past few weeks. I
I came up with a different approach to do a 2 minute description each time.
Everything we feel and do is expressed in a recipe of brain chemicals, one of which is dopamine, which when combined with other the right chemicals makes one happy, sad, secure, afraid…etc,
Parkinson’s is a disease, with over 40 symptoms that prevents one from moving the body smoothly and without great effort, feeling like one is walking in cement shoes, and causes one to be off balance a lot, increasing the tendency to fall and break bones. The most visible symptom is hand tremoring.
That covered a lot of ground, I hope isn’t too much for the young’ins.
I would be glad to run them through a presentation I have created in PowerPoint if you can get them to sit in front of a computer. Some of the animations are fun. I can test them along the way. We could do it over zoom.
Pete,
I was wondering if there is a book with funny pictures to make it not so scary and confusing.
Happy Holidays Perky – thanks for this story.. Peace, comfort and inspiration today and always.
My niece is 9 and I hate her. She said “Uncle Cray Cray, you walk funny.” I told her that her mom and dad weren’t her real mom and dad. She made a mean face and shuffled away. How Ironic. My nephew is a baby and I like babies. He laughs at all of my jokes so I know he’s going places unlike no mom and dad McGee over there.
My son is super chill like his old man. He’s asked questions, but one thing I’ve learned as a dad is you do whatever it takes to protect your kid… even if it means lying. Dad is fine and he’ll get better. Plus if anyone should be worried, it’s me. The boy walks around in his underwear all day. Parkinson’s is the least of my problems. Getting my future 35 year old son out of my house is more of a challenge than holding a fork. Mark this down Smitty. I’m telling you right now. This kid is going to try and have his future wife move into my house. He’ll put her on the top bunk of his bunk bed.
I’ve been trying harder to distance myself from my Parkinson’s. It’s not you, it’s me. Maybe I’ll pull a Ross and say we were on a break. Christmas, Valentines, a Tuesday are all extraordinary even when the day is ordinary. Will Parkinson’s get better, no. Life doesn’t have to get worse. I may be kidding myself, but at least I have a nephew who will laugh at my joke.
Happy holidays, Smitty. 🧡
My uncle would’ve never said a swear word in front of my very proper aunt, his wife.
After Parkinson’s he’d say whatever popped into his head.
This makes me wonder if there is a way to illustrate PD effects with visual aids for the kids. It’s all about education, right?
Dad,
You’re so right! I feel a new project coming on.
Sounds like a great idea however maybe it could be done by showing younger people with Parkinson’s instead of the older grandmother or grandpa. My support group in Toronto is looking at bringing more awareness to Young onset through Parkinson’s Canada.
I am from good ole’ T O. My family is spread around in Orillia, Belleville, and Toronto.
If Allison gives her permission perhaps we could talk. I was trying to get the Cobourg group to join with us, the South Orange County Parkinson’s Support Group http://www.socpsg.com, but they are so organized there.
ParkinsonPete