Monday, June 7, 2021

Covid 19 'The Story Listening Study' by end-of-life doula research team at University of Vermont

 The Story Listening Study


Social distancing and visitor restrictions during the COVID pandemic place substantial strain on clinicians and families caring for people who are ill and dying. These experiences can be isolating and distressing for clinicians and families who are grieving.

Storytelling: Previous research demonstrates that telling the story about one’s experience helping to care for a cherished person who died can improve the quality of life for the person who is grieving. The StoryListening Study is based upon this previous work.

Research Questions: This study focuses on evaluating the acceptability of the TeleVideo StoryListening visit and understanding the aspects of the storytelling experience that are most beneficial to quality-of-life.

Research Methods: If you choose to participate in this study you would complete a brief telephone interview consisting of 18 short questions, schedule and complete a recorded TeleVideo Story Listening visit, and complete a brief telephone interview in two weeks consisting of 15 short questions


Who are end-of-life doulas?

-Doulas are nonmedical caregivers who are trained to be neutral and interested listeners at times of intensity, such as death and grief. 






Sunday, June 6, 2021

The iBot: A mission to revolutionize the wheelchair

 



Inventor Dean Kamen and the iBOT at Mobius Mobility headquarters in Manchester, N.H. 


The fact that Kamen and his team succeeded in doing just that should come as no surprise to anyone who’s followed his multi-decade career. The iBOT, introduced in 1999, can, in fact, “walk” up and down stairs by rotating its two sets of powered wheels around each other like gears. It can be controlled remotely for loading or parking. It can keep its balance while scaling obstacles such as curbs or traveling through sand, gravel and shallow water. It can even raise its user from sitting to standing level by lifting one pair of wheels above the other.

But the story of the iBOT doesn’t end there. Instead, Kamen’s creativity and persistence are still being tested today, decades later, as he continues to search for innovative ways to overcome cost barriers and bring the next-generation iBOT, introduced in 2019, to as many people with disabilities as possible.

“It’s not incremental; it is transformative,” Kamen says. “There is nothing even trying to compete with the iBOT. We’ve now seen hundreds of people have their lives changed by it. It would almost be immoral to give up now.”


Saturday, June 5, 2021

Thursday, June 3, 2021

'Mem, mem, mem.' Excerpt from Paul West and wife Diane Ackerman's account of experiencing aphasia

 


Writer, Paul West

I looked this up when an episode of The Waltons he wrote came on tv:


“You know, dear,” I said to him one day, about two months after the stroke, when he was feeling mighty low, “maybe you want to write the first aphasic memoir.” He smiled broadly, said, “Good idea! Mem, mem, mem.” And so he began dictating, sometimes with mountain-moving effort, and at others sailing along at a good clip, an account of what he’d just gone through, what the mental world of aphasia felt and looked like. Writing the book was the best speech therapy anyone could have prescribed. For three exhausting hours each day, he forced his brain to recruit cells, build new connections, find the right sounds to go with words, and piece together whole sentences. Going over the text the next day helped refine his thoughts and showed him some of aphasia’s fingerprints in the prose.

Now, three years later, he has just finished writing his first novel since the stroke, one with Westian characters and themes. During a three-hour window of heightened fluency in the middle of the day, he can write in longhand, make phone calls, lunch with friends. He has reloomed vibrant carpets of vocabulary, and happily, despite the left hemisphere stroke, he seems happier than before, and I think his life feels richer in a score of ways.

What follows is an excerpt from The Shadow Factory, the aphasic memoir Paul dictated with such struggle and resolve, “forcing language back on itself.” In it, he recalls life in the hospital’s rehab unit, what he felt and thought, and explores some of the all-too-real tricks the mind plays to save itself from the tomb of lost words.

— DIANE ACKERMAN


FLEET

The difference between my own refracted gaze of the world and Diane’s is that she sees the world in all its detail, squirming into the needlepoint alleyways that leopards reject, and mine is to look on the offered scene as a species of broadcloth identified mainly through its ribbons and Tam-o’-Shanters. This sharing the load usually means that between us we cover the waterfront, missing a few mouse holes and locked jaws here and there, but getting the plurality right.

It may not happen that the skills of either of us would often be brought into play, cutting us off in different ways from the charming scene about us, but when you are dealing with something that neither of us has ever seen before, not in bulk, anyway, the situation is profoundly different and likely to fall off the universe for not trying hard enough.

One way of trying extra hard is to imagine one dimension of the universe coated in either black velvet or a blue that no one has reported outside the province of Baffinland. This same needling eye one imagines as bringing reports of blancmange, mince pies, jam tarts, cream pies, chocolate éclairs, Odwalla bars, chocolate chip cookies, ice cream, and all manner of other delicacies to the invalid’s bed.

However you spell the word invalid, you are either invalid because not valid, or invalided out. Or you disentangle the least bit of wiry fluff that has been haunting your tongue for half an hour, and assign it to the unwilling project of the human mess. These rank as contributions in some way or other, but the assorted confectioneries are too massive to eat, and the strand of henpecked fluff is too narrow, which makes them both second-rate substitutes and sees them out. What I’m trying to say, in language ever more oblique, is that the human psyche can sometimes see evidence of what is not present to the senses. 

— PAUL WEST

Continues at

https://theamericanscholar.org/mem-mem-mem/

Saturday, May 29, 2021

excerpt from 'Creating Moments of Joy Along the Alzheimer's Journey' by Jolene Brackey

 Illusion of Choice

If you open the closet door and ask, "What would you like to wear today?" they can't decide because there are too many choices. Instead pull out two outfits: "Which one would you like to wear- the blue one or the red one?" They still may not be able to make the decision, so give them a reason to choose one of the outfits: "I like the blue dress. It brings out your beautiful blue eyes." Another way to give them the choice is to say, "How about I choose today, you choose tomorrow?" When you are offering them something: "Would you like a piece of pie?" instead of putting it in front of them without choice, although no one is likely to refuse pie. Ask, "Would you like to sit by the window?" instead of telling them, "Sit here." If you're rearranging a room, ask their opinion: "Barb, does the rug look better over here?"

Say their name before you ask a question to help them focus: "Jim, do I part your hair on this side?" "Jean, would you like to wear these shoes?"

When staff told Ray it was time to eat, he would usually refuse. But if they left the plate of food on the table next to him and walked away, the food would be gone when they came back.

Frank didn't usually want to go to bed at night. So, staff guided him by saying, "I wonder where your room is? Frank, can you help me find it? Is this your door? No? Is it this door? Hey, we found it." For some reason, once he was in his room, he was easy to get into bed. The hard part was getting him there.

No one likes to be bossed around, no matter what their age.

Never laugh at your wife's choices. You are one of them. - MINIONS

Newfound choice.



( page 81 Fifth edition )

https://www.enhancedmoments.com/


 

 

 

 

 

Friday, May 28, 2021

return of The Music Lady!

 


The Covid 19 pandemic has subsided so I can return to work providing music, entertainment and engagement programs for senior living facilities, churches and not-for-profits in the Greater Houston area!