Wanna Give Parkinson’s the Middle Finger? Celebrate Your Life NOW with a “Selfabration!” (Part 2)

This story is the second installment of a member-submitted 3-part series. Part 1 of Jackie's story can be found here.

Tips for Organizing a Selfabration

First recommendation: ENLIST HELP!! This is supposed to be fun, but it won’t be, if you try to do everything yourself. Besides, allowing people to help you is a way to let them show that they love you (without them having to say it). Ideally, you would have a “committee” of 3 or 4 key people to deal with Invitations/Promotion, Refreshments, Decorations, and Logistics. Each person on your committee may recruit additional helpers as needed.

Make your guest list. I suggest doing this first, because everything will flow from there. I have had Parkinson’s for more than 26 years, and my work as a National Environmental Health Activist had made it natural for me to become a National Parkinson’s Advocate; thus, my invitation list was over 150. It is perfectly fine to have an invitation list of 5, or even 2; obviously, much cheaper, as well.

Choose a date. If your guest list is small, you have a lot more flexibility. If the number is likely to be 10 or more, I humbly suggest that you allow at least 3 weeks of preparation. This will allow you time to get your invitations sent, figure out food and drinks, plan what you want to say, and leave ample time for you to rest. If your invitation list is 50 or more, I would recommend at least 6 weeks of preparation time.

Choose a time of day for the Selfabration when you are usually “on.” I realize how tricky this can be, but you’ll get through this. Schedule the Selfabration for two to three hours.

Choose a location. Choose a place where you will be comfortable, and one that is Parkinson’s-friendly (no steps or has a ramp or lift to enter, wide doorways, handicapped-accessible bathroom, plenty of armchairs, handicapped parking) and ideally, free. If your own home or that of a friend is large enough to accommodate your guests, by all means, use it, But I urge you to ask yourself whether or not it is worth it to have to clean before and after. Places that are free or at least, inexpensive include church halls, picnic shelters at public parks, and community rooms at public libraries and other municipal buildings.

If cost is not an issue, many restaurants have party rooms. You can also book space in a hotel. Again, make sure it’s Parkie-friendly.

Invitations/promotion

For groups of 10 or less, you could go with the “Old School” paper invitations and postal mail, but if your handwriting is anything like mine, I would definitely delegate this project. Or you can use an online invitation service (such as Punchbowl, or Paperless Post). Ask your guests to please respond to you whether or not they are attending, and how many people will be joining them.

If your list of invitees is more than 10, I would really recommend using the online invitation services.

If you live in a small town or neighborhood, contact your local weekly newspaper editor (or if you are feeling shy, have your Invitations/Promotion person do it) and tell them you have a great “feel-good” feature story, then explain the plan. Invite them to the Selfabration. Encourage them to bring a photographer. If they won’t do a story, request that they put a notice in the Community Calendar section of the paper. If you live in a bigger city (population 50,000+) still try pitching your story, but be aware there will be many more issues vying for that ink.

Refreshments

You aren’t required to have any food or beverages. But I’m from Minnesota, and here, when folks get together to tell stories, they will generally want a cup of coffee and a cookie or two. We call it “a little lunch.”

One easy way to provide food for your event if you are expecting fewer than 50 guests is to have a potluck. This is where using an online invitation site comes in handy, because as each attendee indicates that they will be there, they can also add what dish they intend to bring. That way, you won’t end up with 5 pans of lasagna. For example, you could ask people whose last names begin with A-E to bring an entree that would serve 8-10; F-J to bring a side dish for 8-10; K-O to bring a dessert for 8-10; P-T to bring non-alcoholic beverages for 12 (soda or fizzy water usually comes in 12-packs); and U-Z to bring disposable flatware, paper plates, napkins, paper cups for 60; it’s always good to have extra. Encourage your guests to write the name of their dish, along with a list of ingredients, on a 3” x 5” card (have a supply of them on hand- another Dollar Store find) and tape it to the container. This will help folks with food allergies or special diets. Also, please encourage folks to use containers that don’t need to be returned to them. Have reusable or composable drinking straws and plenty of napkins on hand.

For larger groups, your Refreshments Coordinator can buy everything you will need at a Costco or Sam’s Club. If you don’t live near either of those, you can contact your local merchants to get what you need.

Choose foods that are Parkinson’s-friendly: having tapas (Spanish for “small bites”) or finger food means not having to mess with silverware. Mini muffins or cupcakes. No popcorn! I know it’s yummy, but it is a choking hazard -- unless you get the kind with the hulls removed.

In an ideal world, you would recruit some folks to serve as waiters, passing through the seats with the food. This would allow your guests with PD or mobility issues to remain seated and not have to mess with tongs. (I hate going to potlucks or buffets because inevitably there will be tongs. For me, attempting to pick up something with tongs is like playing that old arcade game where you are supposed to pick up a stuffed animal by operating a crane with a joystick).

Decorations

Create a large sign or banner that says “Celebrating [Your Name Here].” This can be placed over the entrance to your Selfabration. If you are doing poster boards of your photos, or you have a table with awards that you have won or crafts that you have made, use it there.

Identify a couple of folks (tech-savvy adult children or grandchildren) to make a slideshow. You can ask them to scan pictures from the pre-digital era. If they have time, add captions to provide names, dates and locations; maybe they can even add music. Be mindful that this can take dozens of hours, if you let it. If this project is becoming too stressful, consider bringing photo albums, or putting duplicates of photos onto poster boards. If your family didn’t take a lot of photos, ask friends and extended family members if you can borrow their pictures, scan or copy, then promptly return them.

For Selfabrations being held in a potentially unfamiliar location, consider making small (8-½” x 11” or so) cardboard signs (multi-packs of poster board in neon colors can usually be found at any Dollar Store), mount them on sticks 18”-24” high, and place them at intervals, along the roadway to direct guests to the Selfabration site. Please remember to take down all of the signs after the event.

If you or someone you know are “craft-y,” make a papier-mache bottle of Sinemet pinata. Fill it with whatever you like. Let everyone take whacks at it with a plastic t-ball bat, but you and your family get first crack at it.