[paula_w]

This is a true story of an experience I had in Peoria. It does no good to be impatient in times like this; thankfully the 3 people involved all have that same attitude. This explains, imho, why they have been advocates for so long.

Laugh, Cry, Die {Pd version of Eat Love Pray only we don't need to find ourselves, we would rather get lost.]


Sometimes situations are so difficult and frustratingly tedious that you have to either laugh, cry, or just give up. This is a story of one such situation at author, advocate, and fundraiser Joan Snyder’s last ‘Shake Rattle and Roll fundraiser in March 2011. she has reitred from this long running event due to advanced health issues.


Several of us were staying at a hotel near Peoria. The fundraiser went beautifully the previous evening with some of the performers on Joan’s latest project, a CD featuring music, poetry, and even rap related to Parkinson disease.Called Voices from the dreams we share, it features Mark Solomon, a former sitcom writer and a great rap from pwp named Collins. This was held on Friday night. We danced to a band - my favorite thing to do.

On Saturday we were scheduled to visit the stem cell lab of Dr. Craig Cady at Bradley University as he is the recipient of Joan’s fundraising. We gathered at the hotel lobby for breakfast but where was Joan?


Then Gary, an indispensable assistant for Joan, very tall and strong when “on” received a call from Joan asking us for help in getting there. So off Gary and I went in the rental car three of us rented to fetch Joan with a pretty good idea that more than a little effort would be involved . Joan has had two pallidotomies, but during the second one she stroked on the table and ended up much worse than just having PD. She is now multiply handicapped, with PD advancing and confined to a wheelchair.

When we arrived she was in the bathroom with her wheelchair and handled the shower herself. I had to pull her chair out of the bathroom and off we went to her dressing room. Joan has a caregiver that comes in to help during the week so she is very organized. To dress her, I just needed to follow her specific directions and found everything she needed . It took strength and agility, both of which I sorely lack. Nevertheless, we got her clothing on slowly and laboriously.

Gary couldn’t really help here but we realized he was going to have to help with pulling her stylish black pants up. Joan had just about everything else on , instructing me to her jewelry via specific drawers and requesting particular sunglasses for her outfit, which were on the table to the immediate right in her office down the hall. There they were, exactly where she had explained. I was getting tired from all the muscle strain and work involved here, but was hanging in there until she slowly tried to pull herself forward, didn’t make the grab and slowly slid out of the chair and onto the floor.

Now we needed Gary as Joan has multiple problems and is what we call “dead weight” due to lack of muscle strength in her legs. Therefore she can do very little to help herself up without grab bars.

I summoned Gary to come as Joan was on the floor, but Gary was “off” and incapable of helping till his meds kicked in. So after various contortions, Joan ended up face down on a wood floor with two helpless pwp unable to lift her until his med worked. At least we managed to get her pants up. Gary had, however, moved to the hallway just outside Joan’s dressing room to do some exercises to speed up his system. This was comical from the beginning but with Gary added to the picture it became downright hysterical.

The phone rang. I had learned at previous events at Joan’s that she accepted phone calls from any location or position. Knowing this I answered and gave it to Joan, whom I heard say in her slow, soft voice and belaboured speech to the caller, Dana, “If I ever ask you to do this for me again, just shoot me.” Funny thing too, that’s what April, my roommate at the hotel, had said after mumbling unintelligibly that very morning….”just shoot me.”


Meanwhile Gary was still trying to get on and asked if he had a plumbers crack when he rolled his legs up. I assured him he didn’t. Finally, Gary was half on and ready to move Joan out to the hallway, where there were grab bars with which Joan could hopefully pull herself up enough to get in the chair, or rather, we would bring the chair to her derierre (sp?). Joan had to be in pain and when I mentioned that as she lay face down on the floor, she brushed it of as something that meant nothing she was so used to it.

Joan was laying in talcum powder that she had poured into her shoes. It was all over the floor and ended up helping us- no- saving us! Even together we couldn’t get her up so we got her rolled over, pushed her torso up and then Gary pushed her back and I pulled her feet with her legs straight out. Just as one must do when moving furniture, we angled her through the door and finally got her to the grab bars. Success!!
Brushing all the kinetically useful powder off our clothes, we headed for the car.

By the time we got back to the hotel, another group had rented a car, but we made it to the stem cell lab.

Patience and laughter…..or cry and die. We chose to ignore the physical pain and laugh.

next story: the restaurant....a notable exit featuring three pwp who are "off".

[lindylanka]

Paula, I am waiting for the next episode

[Sasha]

Originally Posted by lindylanka

Paula, I am waiting for the next episode

where is the restaurant episode? This is wonderfully written!