If you’ve known me for any length of time, you know that I was never big on going to parties. I am typically shy – particularly if I don’t know too many people in the room. If I was brave enough to show up (assuming I was alone) after several minutes and some awkward introductions, I probably warmed up to at least one person, if not the crowd. But getting over the first hurdle – that is to say just getting in the car to go – was often difficult.
Now suppose you have Parkinson’s. The awkwardness isn’t just with the warming up to the crowd because you’re shy, but also because of the visual aspects of PD. Imagine you have a severe period of afternoon tremors, or a dyskinetic twitch as you pour yourself a drink, or your body is holding your muscles hostage and everything is tight and movement is difficult. That is where I’ve found myself lately
In most cases these days, if I have to go somewhere alone, I strongly consider the circumstances surrounding the event. For example, a few years ago I attended a potluck supper at the church. These are a long-time favorite event of mine given that it means delicious food made by some really good cooks. That said, when the majority of the people in attendance see you as being able to manage pretty well (and typically they’re right) and they’re engrossed in conversation while stuffing their faces, there’s a pretty good chance they’re not going to notice that you having difficulty traveling across the room with a cup of soup. It’s very much like a high-wire act as your mind plays tricks on you, and… well… let’s just say I’m pretty sure someone took a purse home with soup in it that night. (Whomever it was… sorry, but you really shouldn’t have left your ugly purse on the floor anyway!)
Additionally, the uncertainty of what PD is going to do that day makes being able to get to the event difficult. Trust me, if I say I want to be there, I want to be there. But sometimes the body tells me otherwise. Perhaps driving is out of the question at that time or maybe there is too much anxiety about being somewhere else other than my own comfy sofa or back yard.
How I manage
I usually won’t go anywhere – even if it is a doctor’s appointment – without a +1 or 2 – that is to say Annie and/or Lisa (about whom I still need to write a post officially introducing them!). Even if you know my situation – whether you are family or close friends, etc, they are both uber-aware of what to look for with me and what I may need. They know the medication regimen and will yell at me in surround sound if I forget my pill box. Their presence sets me at ease. Everyone who has met either one or both take an instant liking to them! (I’ll write the intro post soon!)
But I can’t ask Annie or Lisa to be at everything – they have their own lives to live and events to attend too!
Should I have to attend an event alone, I usually tell the host that I probably won’t be able to stay long and ask for a timeline of the key parts of the event. For instance, if the main part of the event is to eat a meal, I ask for the approximate time that will happen. If the host is able to give me an answer, then I tell that person that I will arrive shortly before and likely (but hopefully not) dash shortly thereafter. Most are accommodating and understanding! If you’re serving soup, you may want to ask your other guests to keep their purses in a closet.
“Should we even invite you?”
I am glad you asked! The answer is YES! People with chronic issues like PD, Anxiety, etc. still want to be included.
I remember many years ago when a loved one was recovering from a broken bone, someone close assumed that the person who was recovering “wouldn’t want to go on account of her recovery”. It took a call from someone else to find out the event was even happening and would she be interested in attending? “I wanted to make sure you got the invitation, but _________________ said you probably wouldn’t want to on a count of your recovery.” Needless to say my loved one was not only happy to go, but when the person who was supposed to ask was surprised by her presence at the event well… let’s just say they re-learned the syllable break-up of the word ASS/U/ME (“ass out of u in front of me”)!
I would love to attend your event, but…
- There is still a chance that I can’t be there due to other obligations.
- Please consider that “short notice” will likely not work.
- Let us plan in advance.
- BONUS: If you are a county or two away, you’ll definitely get to meet Annie and/or Lisa – assuming it works for them!
- Be understanding if I need to cancel at the last minute because I am having a bad day physically.
- Consider the weather – if it is extremely cold and windy or very hot and humid, tremors don’t like that.
- If getting together fails – let’s try again. But PLEASE don’t take it personally if it takes a few tries before it works.
If you are someone who easily gives up on someone because they frequently refuse or cancel, if the person is in good health, I don’t blame you for your decision. But I implore you to make an exception for those with chronic ailments, anxiety or otherwise. Let US tell you when to stop trying. We want to be a part of your life, too.
By the way, September 16, 2021 will mark 7 years since my official diagnosis with PD at Mayo Clinic in Rochester, MN. I have decided the Saturday (this year it’s September 18) closest to September 16 is “Eric’s Avengers Day”! It’s an opportunity to wear or drink from your gear from the Eric’s Avengers shop on Bonfire. It may seem a little bit selfish, but it would certainly put a smile on my face if you consider participating with your gear! If you haven’t ordered gear yet, check out the Bonfire site! (Yes, the PBRTV merch can be used that day too!)
(Proceeds from shirt and mug sales go to my home repairs fund. But if this takes off this year, perhaps we’ll see about making contributions to a PD-related agency or charity in the future.)
Much love to you!
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