Friday, June 19, 2009

Jubilee Day 2009 / Multiple Sclerosis

After 60+ nights of cluster headaches I personally felt more like a mole in a whack a mole game, but Thursday was Jubilee Day, the largest one-day street fair in the eastern United States.

Living with MS and pushing a wheelchair through this human slalom in summer sun, heat, and humidity must by default be some kind of greatest one day MS challenge in the eastern United States, or something like that. Whatever … Patti looks forward to it and come hell or high water we go for it.

Sometimes a story is best told through the random strangers you not only encounter but who care.

While helping Patti with her lunch and related MS symptoms of dsyphagia, a security guard wandered over and asked if he could join us. NO ONE ever anywhere asks to join us. Turns out he also helps to care for a man with Multiple Sclerosis.

Street fairs are not
only optimum for the logistics of shopping from a wheel chair but for the human interaction with artists.

Following lu
nch we were enjoying harpist Shawn Ruby at the Community Stage on East Main. Bringing her harp down off the stage, she offered to let people try playing it. I rolled Patti up to take a whack at it. Shawn could not have been nicer working to position the harp for Patti’s wheelchair and ‘helping/joining’ Patti because of her MS visual and physical symptoms to strum away.

Patti’s new necklace was purchased from Harmony in Design. They create ‘born again’ art from antique silver forks and spoons. Meeting and visiting with Jim and Lisa Harmon was a treat. Not only did they give Patti respect and the additional time her MS symptoms require to try and ‘see’ and ‘choose’ jewelry, their Samoyed, “Glacier”, is ‘in training’ to be a service dog and became a fast buddy to Patti.

The picture of Patti was taken three hours into what should have been wilting conditions for MS. Her smile says it all. Caring people can often
trump nature and make challenges worth trying.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...


  1. ((Patrick)) so sorry that its still going on (the headaches). What a trooper you are to take Patti to Jubilee Day; I love her necklace; so very pretty and what a beautiful smile on Patti!

    I think it was neat that people along the way aided in making it a very special day for Patti!!

    take care of yourself........

    and Happy Father's Day!


  2. Since you suffer from cluster headaches, I would suggest you get an MRI to rule out Arnold Chiari Brain Malformation. My son was diagnosed with cluster headaches for years until they found the Chiari. You can check out my groups web page for more info at ChiariPeople of PA.

    Hope you had a good weekend. Sounds like you did!

  3. Hi Patrick,

    Came by to say hello,Jubilee Day sounds good.

    Nice necklace and gorgeous smile.



  4. Hi Patrick!
    I just wanted to stop in and say that the Jubilee Day sounds like a lot of fun and I can see why Patti loves to go to it. I think it is amazing that the security guard came and offered his assistance. That doesn't happen very often.

    Your necklace is beautiful and that is a wonderful picture of you.


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