Posts Tagged ‘Parkinson’s Disease’

Blog Post 3 of 3 “Papa Makes Decision While In Nursing Home Again” by Teresa Jade LeYung

As writing coach and theme consultant Teresa Jade LeYung, I ask my clients: “What does your main character want?”

Sometimes, the client’s response is: “I’m  not sure.”  Other times, the reply is: “Nothing.”

If the protagonist in a story wants nothing, then, what is the story?

There is always something!  Could it be that your Hero cannot accept what is happening to her/him?  Does he/she want life the way it was, not the way it is?

That is my father’s dilemma. He has lost control over his day-to-day activities. Ever since the hospitalization for Aspiration Pneumonia and urinary tract infection in July 2018. Ever since he could no longer live by himself.

No more going to the hallway or balcony with his walker to exercise or taking the elevator to go to the mailroom whenever he wants to. No more watching his Cantonese television programs with his girlfriend who lives in the building. No more telling his caregiver to stop by the grocery store and bring him a particular fruit or a Chinese pastry he is craving.  No more quarterly appointments with his UCSF neurologist or UCSF hi-tech physical therapy for movement-disorder.  What irony – the appointments he had labeled “unnecessary” and “there’s nothing wrong with me” are now out of reach and “Why can’t I go?”

When nursing home staff members ask him “Do you want anything? Do you need anything?” he raises his left hand to gesture “No” and smiles.

When I am with him, occasionally he will tell me in Cantonese: “I don’t want to stay here.” (I think to myself Oh, Papa, of course. You were independent, in spite of Parkinson’s Disease, in your studio apartment.  Aspiration Pneumonia and urinary tract infection created your decline and now you are in a nursing home, in a room with 2 other residents, no furniture of your own. I am sad for you. But, I know that you are safe and well cared for by dedicated staff.  You are a lucky guy.)

I do not lie to him. I say: “This is your home now. Nurses and CNAs take excellent care of you. You are safe here. You have friends here. If you exercise and get strong to the point that you can live on your own again, then, I will help you find another one.”  I reinforce my words by taking out a green exercise band from the top drawer of the nightstand.

I had bought the green band when I was getting physical therapy for my plantar fasciitis. Last month, I found the band, and used a thick permanent marker to write my father’s name on it.  [ If you don't put your name, room and bed number on an item, that item is likely to disappear.  Even if everything were labeled, staff and residents would still experience "missing items."]

Papa is in good hands with the nursing home staff. And, since November, he’s been receiving visits from a nurse, a chaplain and a social worker from Hospice By The Bay.  Also, he gets visits from former caregivers (with help from my sister, I can afford to pay them to visit), his daughter-in-law, his grandson, his girlfriend, a few other people, and me (his representative and advocate).

Who else feels loss of control?  Me.  When I see Papa not practicing safe eating behavior.

What is safe?

- Papa sits upright and is fully awake (should not be putting food or drink into his mouth if he is slouching or sleepy).

- Eat slowly.  He uses a teaspoon to put food or thickened liquid into mouth.  Chew.  Swallow. Swallow again.  Say “AAH” twice.  If you don’t hear a clear AAH, that means food/drink has not cleared past the throat.

-  Do NOT tilt head backward when swallowing (head-tilting increases risk of choking and aspiration)

Oh, how I get exasperated when I find out that someone gave him food that hasn’t been pureed by dietician or liquid that hasn’t been properly thickened by his nurse.  Last month, two other residents gave him something to chew (Chinese chew); the nurses explained to the two nice people that my father cannot just chew, that he has a swallowing problem, that he could accidentally swallow the food. The residents don’t understand that another episode of aspiration-pneumonia could be fatal. They can’t empathize.

That’s another question I ask my writing-clients – “Which characters are sympathized and which ones are empathized by your narrator?

I am indeed grateful that my father likes the staff at the nursing home, and the meals served to him, and that he gets to walk with his walker about 5 times a week with the CNAs who are especially trained.  I am indeed grateful to everyone in his life and mine.

HAPPY LUNAR NEW YEAR 2019!

I wish everyone safety, abundant joy, and excellent health.

Sincerely,

Teresa Jade LeYung

 Teresa Jade LeYung – founder of Love Made of Heart (aka Teresa LeYung-Ryan) says: “When I’m in Paris, I know I have come home.”  Teresa speaks openly through her writing and advocacy, her immigrant experience, and her knowing beauty.  As author, publisher, theme consultant, and a found-object artist, she empowers women to transform dreams into lifestyle. http://lovemadeofheart.com/blog

***

Beautiful brain produces DOPAMINE

Dopamine helps us move with ease.

Parkinson’s Disease depletes Dopamine levels.

WALKING promotes production of DOPAMINE

Chapter 2 “The Man Who Walked Off His Parkinsonian Symptoms” in Dr. Norman Doidge’s book The Brain’s Way of Healing

Walking With Intention/For Safety:  [Cantonese]  Man Dee Ho Dee (Slower is Better), [Cantonese] Gurk Go Dee Ho Dee  (Pick Up Foot, Higher is Better)

and

Youtube “Sit and Be Fit” series by Mary Ann Wilson RN (recommended by our papa’s primary care physician)

Papa wins. Parkinson’s loses. Papa wins.

 

Sincerely,

Teresa Jade LeYung

aka Teresa LeYung-Ryan, Story Theme Consultant

http://lovemadeofheart.com/blog

 

 

 

Teresa LeYung-Ryan’s Blog Post 3 of 3

How Dr. Norman Doidge’s Books Help Me and My Chinese Papa Who Has Parkinson’s

 

I am not fluent in Cantonese.

When I was a new immigrant from Hong Kong in the 1960s, San Francisco public schools did not have ESL (English as a Second Language) classes.  Classmate’s snickering compelled me to learn my new language with urgency. By fourth grade, you couldn’t shut me up.  Then our parents (actually, probably just our father) insisted that my siblings and I go to Chinese School (classes in Chinatown everyday after regular school was let out).  One year of misery. Thank goodness our mother spoke up to our father (in Cantonese) – “Let our children succeed in English school first.”

Fast forward to 2017. Parkinson’s Disease has caused what Papa would say with his Cantonese accent “a lot of problem.”

[ According to http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/ Parkinson’s disease (PD) is a neurodegenerative brain disorder that progresses slowly in most people … a person’s brain slowly stops producing a neurotransmitter called dopamine. With less and less dopamine, a person has less and less ability to regulate their movements, body and emotions.]

Papa and Teresa chuckle at the last part of speech exercises taught by Terri Snyder from Self Help for the Elderly - photo by Wen Hsu, translator extraordinaire

While I lack the vocabulary to tell my father that I sympathize, I do know how to encourage and praise with sincerity.  When he frowns at my prompting to do the exercises (taught by the dear professionals from Self Help for the Elderly) or Sit and Be Fit™  (recommended by NP Heloise Lim), or to pick up his feet when those darn rubber mats at grocery stores and restaurants seem to ambush him and his walker… I say to him: “You win! Do NOT let Parkinson’s win. You win!”

**********************************************

Through the engaging stories in this book – The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D. – I have learned that our wonderful brains are forever changing, growing and healing. That knowledge gives me the vocabulary to ask the right questions as an advocate for my father. Dear friend Wen Hsu ordered the traditional Chinese edition of Dr. Doidge’s book through a bookseller in Taiwan. Papa has the book near his dining table; next to the Chinese edition is the English edition; both books are there for Papa’s helpers and friends to read.

As for my being an advocate/daughter who is not fluent in her parent’s native tongue, I know how to find people who excel in their work. In the past three weeks, Wen Hsu (translator extraordinaire) has translated my multiple letters (written in English) into Chinese for Papa’s Caregivers/Helpers.

I salute Papa’s caregivers/helpers, his caring friends, my caring friends, wise mentors, supportive spouse, dear sister, MaMah, Papa’s spunk, the doctors, nurses, administration staffs, physical therapists, occupational therapists, speech therapists, interpreters, dear folks at Self Help for the Elderly, South Market Senior Health Clinic, UCSF Movement Disorder and Neuromodulation Center, E.R. staffs, staffs at U.C. Medical Center and St. Mary’s Hospital, SFGH Orthotics and Prosthetic Center, the dear staff members at the building where my papa lives, and Dr. Norman Doidge for writing his book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity.

Mr. Leung with traditional Chinese edition, Teresa LeYung-Ryan with English edition of the book THE BRAIN'S WAY OF HEALING: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D. - photo by Wen Hsu, translator extraordinaire

 

Special thanks to the dear folks at Self Help for the Elderly – Nurse Valerie Chan, Nurse Chiu Li, Physical Therapist Jenny Chiu, Occupational Therapist Tom Wong, Speech Therapist Terri Snyder, Translator Albie Wong, and of course the administrative staff, and all the nurses and therapists who have helped my father in the past and shall in the future.

 

Knowledge that leads to health and wellness – this is my wish for everyone.

Sincerely,

Teresa, advocate/daughter to my Chinese papa

P.S.  I am rereading Dr. Norman Doidge’s books

Teresa LeYung-Ryan, photo by Britt


Teresa LeYung-Ryan is

author of:

  • Build Your Writer’s Platform & Fanbase In 22 Days: Attract Agents, Editors, Publishers, Readers, and Media Attention NOW (workbook);
  • Love Made of Heart: a Daughter Finds Herself through Witnessing Her Mother’s Mental Illness (novel used in college classes, recommended by the California School Library Association and the California Reading Association, and archived at the San Francisco History Center);
  • “Talking to My Dead Mom” Monologues (the first monologue received an award from Redwood 10-Minute Play Contest and was staged at the 6th Street Playhouse in Santa Rosa, CA);
  • Coach Teresa’s Blog  http://lovemadeofheart.com/blog (which attracts thousands of writers) helps writers build their platforms before and after publication
  • “For Themes’ Sake” and “Heroes, Tricksters and Villains” and “Where Are You On Your Writer’s Journey?” and other workshop material

creator of “Immigrant Experience Writing Contest” and

owner of trademark

 and proponent of public libraries, public schools, and excellent public healthcare for ALL!

The link to this blog post #3 of 3 in this series:

http://lovemadeofheart.com/blog/teresa-leyung-ryans-blog-post-3-of-3-how-dr-norman-doidges-books-help-me-and-my-chinese-papa-who-has-parkinsons/

Blog post #2 of 3 in this series:

http://lovemadeofheart.com/blog/teresa-leyung-ryans-blog-post-2-of-3-how-dr-norman-doidges-books-help-me-help-my-papa/

Blog post #1 of 3 in this series:

http://lovemadeofheart.com/blog/theme-consultant-teresa-leyung-ryans-blog-post-1-of-3-what-i-learned-about-the-brain-from-dr-norman-doidges-2-books/

 

Dear Folks who have been, are, or will be advocates and/or caregivers to a family member who has Parkinson’s,

I salute YOU!  If I didn’t have caring friends, wise mentors, supportive spouse, dear sister, MaMah, and the information from Dr. Norman Doidge‘s book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, I would be in need of advocates and caregivers myself.

Last month, Papa fell again.  No broken bones. No kidney damage. He sure is a lucky fellow.  After his first fall earlier this year, the doctors and nurses explained to him (in Cantonese) and to me that when someone falls and cannot get up and is on the floor for hours, the muscles release a material into the bloodstream that could cause kidney damage. So, what did the doctor and interpreter at the hospital say this time?  “Your father was dehydrated and weak. He needs to eat well, eat more. Encourage him. To eat more. To drink plenty of water.”

Aah, the word “encourage” contains the word “courage”.

Parkinson’s Disease has discouraged Papa – the disease has made Papa’s movement “smaller” – small steps, small voice, small hand-writing.

Encourage my father to do this, to do that? Sounds simple enough.  Then why do I feel discouraged myself?  Whatever happens, I must take good care of my own brain.

I am not fluent in Cantonese, Papa is not fluent in English -

At least twice in the past month, he got upset when I said something about myself (he thought I was talking about him). “Teresa, keep your cool,” I tell myself. (Thank you, mentor Lynn!)

 I do not understand why Papa seems to be evasive when answering questions -

“Papa, when did you last eat?” I’d ask.

“I ate a lot,” he replies.

“What time?” I ask.

“A little while ago,” he says.

“What time?  Six o’clock? Ten o’clock? Two?  It’s two-thirty now. What time did you eat?”

“Eight.”

“Eight o’clock! That’s not a little while ago.” I can hear the irritation in my voice.

“Teresa, encourage him, not grill him.”  (Thank you, NP Lim!)

I cringe just thinking about entering his apartment and getting blasted by the television volume set at 84 or the thermostat set at 80 degrees -

What can I do?  I supposed . . . instead of asking (accusing) him “Is your hearing going?” and “Are you cold because you’re ill?” I could just turn down the two dials and engage him in conversation. (Thank you, dear Sasa!)

I, Teresa LeYung-Ryan, daughter of a father who has Parkinson’s, thank everyone who has helped my papa and Dr. Norman Doidge for writing his wonder-full book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity.

Thank you to all the doctors, nurses, administration staffs, physical therapists, occupational therapists, speech therapists, interpreters, everyone at Self Help for the Elderly, folks in UCSF Movement Disorder and Neuromodulation Center,  E.R. staffs, folks at St. Mary’s Hospital, SFGH Orthotics and Prosthetic Center, and the dear staff at the building where my papa lives.

Knowledge that leads to health and wellness – this is my wish for everyone.

Sincerely,

Teresa LeYung-Ryan

Teresa LeYung-Ryan, advocate for my Chinese papa

Please visit http://LoveMadeOfHeart.com/blog and http://WritingCoachTeresa.com  for resources.

If you’d like to read Blog Post 1 of 3 in this series: http://lovemadeofheart.com/blog/theme-consultant-teresa-leyung-ryans-blog-post-1-of-3-what-i-learned-about-the-brain-from-dr-norman-doidges-2-books/

Teresa’s trademark:

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