Wednesday, July 04, 2012

when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4th of July for example. Yet unquestionably there are pressures.

Holidays like most things are biased toward able bodied able minded celebrations. When that is not your life we adapt.

First and foremost heat and humidity is synonymous with the 4th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4th of July more MS friendly by turning it into a morning holiday.

Parked in the shade of a weeping willow tree Patti was close enough to see and interact with crafts and contestants in Anything Floats race in Boiling Springs, PA … while the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec

In this care facility era we are blessed with teamwork getting ready. Having help with Patti who is not only non-ambulatory but unable to assist with any of her activities of daily living is a godsend. Arriving to find Patti up, changed, dressed, and transferred from her bed to her wheelchair is immeasurable in the effort and stress it saves me and empowers our outing.

Progression of MS symptoms has unquestionably affected outings over the years.

Duration for example is affected by bowel and bladder incontinence. With progression, it’s not about finding an accessible commode but about leaving to find a bed to transfer Patti to and change her Depends and clothing.

Even sitting upright in her wheelchair for long periods of time is ‘complicated’.

Dysphagia puts her at increased risk of choking. Holidays and the hospitality of food seem to go hand and hand. Large loud gatherings with food are not fun as my vigilance must be undivided.

Blend in heat and each and every symptom above only worsens.

Sooooo why even get out of bed? Simple to go where no one has gone before.  Some follow traditions, we create new ones.

Caregivingly Yours, Patrick Leer 


  1. That says something about you, Patrick, your flexibility and willingness to look for a new tradition to make, that you might even have to make next year, but still something to enjoy the day together exploring what is out there available to you guys. That race sounded like a cool thing to see in the cool of the day!

    We had to make our own new traditions, choosing to stay at home to comfort a silly corgi pup that hates loud noises like fireworks instead of going to see them in person. So I get to catch up on blog reading and we tried a new recipe or two for dinner and it all seemed to work for an enjoyable evening :)


    1. Interesting you mention staying at home for example I never even knew fireworks displays were televised. Caught a little of Macy's fireworks from NYC harbor featuring Katie Perry entertaining the fleet and Kenny Chesney singing from a roof top bar in Manhattan - something for everybody ... front row view and no traffic for me :)

  2. We're having to adapt too for different reasons than yours. Without Nicole, it's different.

    And this year no fireworks in our State allowed so it felt like another day at home. =(


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