Thursday, June 15, 2006

Caregiving: Jubilee Day 2006

     Today was JUBILEE DAY in Mechanicsburg, “the largest one day street fair on the East Coast”. Normally just the June heat and humidity in the Cumberland Valley prevents Patti from attending. This picture (without our disembodied heads superimposed) was snapped a half hour “BEFORE” the fair actually even opened. You can imagine how challenging the street is to navigate in a wheelchair.

     For the second consecutive year Jubilee Day began with “Spring” weather and temps in the 60’s so we seized the opportunity. (Shhh! Don’t tell Al Gore it would ruin his day to hear that June is getting cooler. <grin>) For those living with MS a Spring Day in June is a Godsend!   

     Picking Patti up from her care facility at 9 AM she partied in the streets until after 2 PM! I was amazed. It must have been the pink cowgirl hat that kept her in constant shade. <grin> That is an extraordinary amount of time in the sun and outside for Patti. Plus the sheer volume of visual, audio, and cognitive stimuli was more than she processes in a month. Yet she handled it all in a good and festive spirit.

     Shopping for jewelry at vendor booths is something she enjoys but is obviously challenged by vision and difficulty in conversing with busy vendors who have no patience for shoppers with no memory. <grin> Though sooner or later she always finds the “right” person. Today that was a Native American booth and turquoise. Once the salesperson realized Patti could not really see nor handle a traditional exchange, he came out to her with a box of jewelry to try on. Soon they are chatting like old friends about the “energy” of jewelry and were off on tangents that lost me almost immediately. I was amazed that Patti ended up with two very nice bracelets for less than I expected to spend all total and now one wrist has Hopi energy and the other Navaho energy. Don’t ask me what any of it means. I was just impressed to watch Patti engage in that lengthy of a conversation and negotiation.

     Almost like hitting a brick wall, shortly after 2 PM Patti was suddenly ready for bed! <grin> I got her back and tucked into her room for a well deserved afternoon nap. Shifts were just changing and I convinced everyone to let her nap through to dinner.

     I had forgotten some stuff in Patti wheelchair back pack and had to return to her room about dinner time. She was still so exhausted that the staff had decided to bring her dinner in bed. She was propped up in bed being fed dinner … and “showing off” her new bracelets to the evening staff. <grin> Her after dinner plans were to immediately go back to bed for the night. 

     MS fatigue is exhausting but some days that can be a totally pleasant kind of exhaustion.



  1. i really do admire you:) Patti looks marvolous i am so glad you both enjoyed the day:)


  2. Thanks once again for giving Patti a day she will hopefully remember. She LOVES jewelry so I know she will be anxious to show off those bracelets to us this afternoon. Thanks a bunch, Gloria/Harold

  3. what a wonderful day! Pink hats off to you both for braving the crowds for an exciting adventure like that. How kind of that jeweler to take the extra time with Patti and not to shrug her off. I bet those bracelets will be the "talk of the town" where Patti lives.


  4. ....and I happen to know the energy that went into the day from your stand point......and it was worth all effort! <smiles>

  5. Your van is back in working order once more! sounds like you both had a good time. Glad it wasn't too hot for her. I paid more attention to folks in wheel chairs while we were at Disney this week... quite a few of them actually. I was amazed at how many walking people would just walk by someone standing in line with their wheelchair partner without stepping back and letting them get through a door way or gate way. When I came upon someone standing in line, I would step back and offer them to get in front of me. Seems like a common courtesy. In most cases, folks in wheelchairs were given first entry and great seats, but there were moments when I could see some difficulties faced by them and those with them. DisneyWorld has made almost all of their rides wheelchair accessible, and those that aren't are marked with a sign before you get in line saying "must be transferrable" that is, the person must be able to transfer from the wheelchair to the ride. Have you ever taken Patti to DisneyWorld? bea


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