Sunday, August 08, 2010

knee contractures / newly diagnosed MS

We were out and about the other night enjoying a summer evening, due in large part to the ongoing success of Patti’s daily therapy for Multiple Sclerosis knee contractures
Easier and safer one person transfers equal more outings plus prolonging my back is in both our best interests. When Patti can extend her legs during a transfer everything just comes together.

For whatever reason care facility staff and Patti have been into a groove about putting on the softpro static gel knee orthosis when Patti settles down for her afternoon nap. Sounds so simple yet like anything involving team work you can assemble a team but that does not mean they will accomplish anything.

Certified nursing assistants (CNA) assist Patti into bed. The licensed practical nurse (LPN) needs to put on the knee orthosis as it is ‘prescribed’ therapy.  And of course Patti who can have rather strong feelings about the knee orthosis as a royal pain in the ass. … for whatever reason they are clicking.

We encountered a young woman we knew, out with her two young children. Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis.

Time just stopped.

“Couldn’t it be something else?” “Couldn’t they be wrong?”

We listened. We cared. We shared our time and ourselves.

Likely we were a better audience than most since we had no questions about ‘what is’ MS.

With Patti’s own MS diagnosis in long term memory, she participated in the conversation, even helping with the refreshing sound of laughter as they shared a laugh over “neurologists suck!” and the absence of social skills in rocking someone’s world with a diagnosis of MS then reminding them to make sure to stop at the receptionist to make your next appointment.  

As a MS caregiver for 20+ years my focus evolves with Patti’s MS progression. Yet for 200 people a week in the US the journey is just beginning.

Caregivingly Yours, Patrick Leer 
musings: patrick ponder


  1. "Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis."

    What an excellent description of that moment, which I have also lived either in communicating my diagnosis or in hearing from someone newly diagnosed. Especially when the person is young, my heart seems to stop for a moment as I process what that person might be in for. It is an interesting society to be a part of; one, that if nothing else, has taught me about compassion.

  2. because I don't believe in coincidence, I am sure it was not a chance encounter that you/Patti met this lady with her two young children on your evening outing. I think it was what she probably needed to be able to talk with someone who could emphatize with her and her diagnosis rather than sympathize with it. I'm sorry all of you though have to be impacted by such a diagnosis, past, present and unfortunately future :(

    (but as a caregiver, Patrick, you do "rock" indeed; very diligent, caring, loving, and especially kind in your role, I find myself comparing it as I watch others try to care give - and your way outshines them all......)

    (thanks for your concern :)



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