Archive for the ‘Parkinson’s Disease & My Chinese Father’ Category

published December  14, 2019

Reading Victoria Sweet, M.D.’s new book SLOW MEDICINE The Way to Healing https://www.victoriasweet.com/ and watching/listening to Carole King (“A Conversation with Carole King” – Veteran journalist Mike Barnicle talks to Ms. King about her memoir A NATURAL  WOMAN at John F. Kennedy Presidential Library and Museum on April 12, 2012) https://www.jfklibrary.org/events-and-awards/forums/2012-04-12-a-conversation-with-carole-king motivated my completing Part 2 of Author Teresa Jade LeYung’s New Monologue “What The Man In 17-B Wanted”

In my blog post http://lovemadeofheart.com/blog/blog-post-3-of-3-papa-makes-decision-while-in-nursing-home-again-by-teresa-jade-leyung/  my father was coping with his circumstances – as a reluctant resident at a nursing home.

This is what happened in November and December 2018.

Remember that piece of paper that I needed to fill out for the nursing home staff? The one about naming a mortuary.  Every resident must fill out that form http://lovemadeofheart.com/blog/author-teresa-jade-leyungs-new-monologue-what-the-man-in-17-b-wanted-part-1/

Well, there is another form to deal with – “Notice to Terminate Lease” -  the agreement between my father and the apartment building property management – that a tenant must give up his lease after six months of absence and vacate his apartment.

I waited for a “good” day to show this second document to my father.  Only his signature would be accepted by the property manager.  That day, Papa appeared to be cheerful, the sun was shining. I said to him: “Papa, remember you went to the hospital in July? You’re safe here with nurses and CNAs who care about you. Your Social Security money is paying for you to be here. There is no money to pay for your apartment too. Also, the lease says that you have to give up the apartment by end of December. I will help you. Don’t worry. I’ll take care of everything. You just have to sign this paper.  Okay?”

He signed.  I don’t know what happened after I said “Goodnight” to him. He probably cried when no one was watching.

What I didn’t have the heart to tell him was that every object which represented his life had to go away – to a storage unit , to a recycling center, or to the dump. If not for my brother’s first wife and four other precious friends, I wouldn’t have been strong enough to take on this job.

What irony for a writer – I (narrator) wanted to give my father (protagonist) what he wanted (to be able to return to the place he called “home”) but he was a fall risk and could no longer live alone.  Because he was relying on me to be his advocate, and,  because he didn’t get what he wanted most, he probably viewed me as an obstacle as well.

Like the son in the movie Garbo Speaks (written by Larry Grusin), I was the daughter who was worn out chasing after something that seemed impossible to obtain.

Back to that first piece of paper that I needed to fill out for the nursing home staff.

I need to do the right thing when Papa dies. Mrs. Chu, the oldest resident at the nursing home, is 107! My father is only 85. He has a long way to go.

Does my father want to be buried or cremated? He won’t talk about illness, certainly not about funeral.  I cannot read his mind.

Thanks to Amy Grace Lam who said to me “Teresa, you will get your answer not by asking your father but by finding the right person to ask your father.”

The right person would be someone who speaks fluent Cantonese and is the archetype to ask such a question.

On the day when all three Cantonese-speaking team members (nurse, social worker, chaplain) showed up at the nursing home to meet my father and me, Amy Grace Lam’s words replayed in my head.

I showed Chaplain Yuen the piece of paper  and told him: “I want to honor my father’s body and need to know what he wants.”

I did not need to explain any further; the chaplain nodded, and took the paper from my hand.

While he was chatting with my father, I stepped aside to talk to the nurse and social worker.

Fifteen minutes later, I hear Chaplain Yuen telling my father that he would visit again.  As though a director was in the room and we were all rehearsing a scene, a CNA comes into the room to distract my father. The chaplain says to me: “Your father wants burial, not cremation.”  The social worker tells me that she’ll get me a list of mortuaries which will include those catering to families of Chinese heritage.

I got what I wanted – the answer to my question. What more can a daughter ask for.

photo by Teresa Jade LeYung 2018 November 20

I wish you, dear Reader, excellent health.

Sincerely,

Teresa Jade LeYung

Teresa Jade LeYung - photo by Sharon Leong 2019 May 10

As a story theme consultant, award-winning writer, and platform-building coach for pre-published and published authors, Writing Coach TERESA JADE LEYUNG empowers her clients to identify their core themes in their manuscripts and career mapping.
http://lovemadeofheart.com/blog

TERESA JADE LEYUNG (formerly Teresa LeYung-Ryan) is the author of:

Love Made Of Heart

Build Your Writer’s Platform & Fanbase In 22 Days: Attract Agents, Editors, Publishers, Readers, and Media Attention NOW

Talking to My Dead Mom monologues

October 28, 2019 , 00:13, 18:50, 20:34  Paris times

November 5, 2019, 12:00pm; November 6, 2019, 4:33am California time

To Everyone Who Has Helped Me or Someone I Care About,

Acts of kindness come in countless forms, oftentimes given anonymously.

I thank all of you from the bottom of my heart.

This blog post containing images of Parc Monceau, 8th arrondissement, Paris, France is to Thank You, the benevolent angels in all realms.

Today, October 28, 2019, my plan was to walk through Parc Monceau (enter at the grand gate at Avenue Van Dyck, exit at the grand gate at Avenue Velasquez). Well, Beauty distracted me. Twenty-eight minutes later, I realized I had walked a circle.

That is what I wish for you – may Beauty be with you always – may She lead you to where you need to go or come back to.

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http://www.mariechristinecornet.com/ Marie-Christine Cornet says: "I offer a body-based approach for healing and wellness. I believe that any step towards healing is a step towards evolution." photo by Teresa Jade LeYung

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All photographs taken by Teresa Jade LeYung on October 19,  24, 28, 2019, Parc Monceau, Paris, France

“Merci beaucoup to You,” says Story Theme Consultant Teresa Jade LeYung

(formerly known as Teresa LeYung-Ryan).

Teresa_Jade_LeYung_in_Paris_photo_by_Sasa_et_Nan

As a story theme consultant, award-winning writer, and platform-building coach for pre-published and published authors, Writing Coach Teresa Jade LeYung empowers her clients to transform their dearest dreams into reality. Whether Teresa is in Paris, France or California USA, she helps writers identify their core themes.

http://lovemadeofheart.com/blog

Author Teresa Jade LeYung’s New Monologue

“What The Man In 17-B Wanted”  Part 1

When my papa was admitted to the nursing home, the folks in Social Services asked me to complete a half-inch-thick packet. A lot of it was reading material. There was this sheet of paper asking for name of mortuary.

Why? In straight language, when a resident “expires” (dies), the nursing home must remove “the remains” (the dead body) out of the facilities within four hours of death.

Since there are three residents in a room, you just can’t leave a deceased person in his bed as though he were in a private home.

I remember the night when my papa called me, to tell me that his roommate died, that he was afraid to sleep in the room and wanted me to go over there and take him to a hotel. I explained that he himself is a fall risk, I couldn’t just put him in a taxi and send him to a hotel. I suggested that he stay near the nurse’s station. Later that evening when I called his nurse, she said that he was in the hallway, fell asleep in his wheelchair. Later after his deceased roommate had been taken away, his CNA helped him back to bed.

Back to this sheet of paper … If this document isn’t filled out, then, at time of death, the dead body would be transported to the mortuary that the nursing home has a contract with. If that mortuary is not the one that the deceased or the deceased’s representative wanted, then, the representative would have to pay the “transfer” cost (moving dead body from first mortuary to second mortuary) in addition to the transport cost (the original ride from nursing home to the first mortuary).

The dollar amount of the transportation cost would come close to about 50 taxi rides to go half-way across town in San Francisco; double that if a “transfer” fee is incurred.

Every three or four months, the kindhearted staff would remind me about “that” sheet of paper.

Truthfully, I would like to know what my father wants. Does he want to be cremated or buried?  I can’t ask him.  The look on his face – when I dare to utter any word related to the subject of death – says: “Aah, daughter, so, that is why you are leaving me here.”

Most days, I say to myself: He’s so afraid of dying, he’ll be around another 15 years. I’ll probably die before he does.

[ Separate matter – regarding “Arbitration Agreement”  Thanks to two friends and the honesty of a staff member at the nursing home who spoke frankly…”If you don’t want to sign this…just write ‘decline to sign’ and date it.” http://www.canhr.org/arbitration/index.html  California Advocates for Nursing Home Reform (CANHR) says: “Don’t sign Arbitration Agreements in nursing homes and residential care facilities” ]

Sincerely,

Teresa_Jade_LeYung_in_Paris_photo_by_Sasa_or_Nan

Teresa Jade LeYung

an alumna of A Place of Her Own 2018

Teresa Jade LeYung of Love Made Of Heart says: “When I’m in Paris, I know I have come home.”

As an award-winning author,  theme consultant and writing coach, Teresa empowers writers to transform their dearest dreams into reality.

http://lovemadeofheart.com/blog

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

photo by Elley Chu

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

The following blog post (number 2 of 3 in this series) was written during the latter half of September 2018 and I am just now publishing it today January 7, 2019.

In my August 7, 2018 Blog Post entitled: Papa Makes Decision “Where Do I Go Now?”  After Hospitalization. While In Skilled Nursing Rehab … I had  declared that I (Teresa Jade LeYung) was writing to you not as a novelist, theme consultant or found-object artist but as a memoirist, older daughter of Mr. Leung. Well, I was wrong.  All my note-taking, reporting and advocacy skills are fueled by all my roles, including being a story/theme consultant, writing coach, and lover of cohesive scripts.

Story Question:   Will my father lose his Medi-Cal Bed in the nursing home?

Setting of this scene:

First floor of this establishment is mainly reserved for “patients” who have been referred by physicians to receive post-acute care after hospitalization. The first floor is where you’ll find the Skilled Nursing Facility staff (short-term care covered by Medicare); first floor is also where you’ll find the Rehab staff, the friendly faces at the reception area/front desk, and the offices of Director of Nursing and the Administrator.

The second and third floors are strictly for “residents” (receiving long-term care – some are private pay, others through Medi-Cal) and other administrative offices including Social Services.

Basement floor you’ll find Business Office, Maintenance, Food Service, Laundry Service, and staff lounge.

So, what happened after August 7, 2018?

Papa had difficulty living as a “resident” in one room with 2 roommates. His space included the hospital bed, a  20-inch by 24-inch bulletin board on the wall, an aisle wide enough for wheelchair, a nightstand  (for grooming and bathing paraphernalia), and a closet the size of a school locker.

On September  7, 2018, Nurse D. had called me that morning, telling me that my father had a fever of 105 degrees, that staff brought it down to 101.5, that they were sending him back to UCSF Hospital.

UCSF ER team reported to me that my father had another urinary tract infection – that explained the fever.  And, they saw a pressure ulcer in my father’s inner thigh, near the groin.  But why couldn’t he raise his right arm?  The team had a difficult time communicating with him because …  1) Parkinson’s Disease had impaired his speech  2) English is not his primary language  3) Later, they would find out that he had a stroke in the Pons part of his brain.

One long week in the 5-star Adult Acute Care Unit at UCSF.  Already burdened with Parkinson’s (swallowing difficulty) and now with a new stroke, my father was getting his medicine and nutrients through a tube that was inserted into his right nostril and lowered into his stomach.

A nurse checked on him every hour (including the hours between midnight and seven in the morning); every two hours the nurse and a PCA (patient care assistant) would “reposition” him so that he would not develop more pressure ulcers and bed sores.

I slept on the bed (big chair pulls out into a single-sized mattress) on two occasions.

* the first night after he was admitted, and

* the night he looked at me with moist eyes and whispered in Cantonese: “Don’t leave me.”

The attending physician (who was young, wise and gentle) called a family meeting.  In Papa’s room were my father, the doctor, a Cantonese-speaking interpreter, my husband and me.  The doctor reiterated what Papa was being treated for. Then the doctor said: “Mr. Leung. There is another matter. Do you want me to tell you?” Mr. father nodded yes.

“In the CT-Scan for the urinary tract infection, we saw masses in your kidney. In order to know if it is cancer, we would need to operate.  Based on your age, your current health . . . ” Papa had already closed his eyes (he does that whenever he doesn’t want to hear what is being said).  The doctor asked: “What do you want, Mr. Leung?” Papa did respond in slurred speech, repeatedly: “I do not want to return to the hospital ever again.”

Then the doctor explained to him that the tube could not be a permanent solution, that it would be used for an additional 4 weeks only (to deliver medicine), and, that he would be given food (pureed) by someone hand-feeding him.  The day before discharge, nurse-on-duty taught me how to safely feed someone who has Dysphagia.

Two major concerns -  Aspiration Pneumonia Risk and Fall Risk

1.  Dysphagia is a swallowing disorder.  Dysphagia can lead to malnutrition, aspiration, and pneumonia. For swallowing-safety . . .

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

- Eat slowly.  Use 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.

2. Because he is a fall-risk patient and prone to get pressure ulcers, transferring from bed to chair and vice versa requires the presence of two PCAs (Patient Care Assistants); so does repositioning him in bed.

September 13, 2018 when UCSF doctor informed me that they would discharge Papa the following day (Sept 14) , I requested that they discharge him on September 15.  I pointed out: “My father had not eaten any food by mouth.  You tell me that tonight is when a nurse will hand-feed him. Please let him have at least one full day experiencing being fed by another person.”

Here we go again!  Facts: Skilled Nursing IS post-acute care (short-term care) and IS covered by Medicare.  After Skilled Nursing discharges Papa, he would be returned to long-term care; long-term care is NOT covered  by Medicare.

Medi-Cal can hold a bed for a resident up to 7 days only. What should I do?

I talked to the case manager at the hospital; I talked to the director of social services at the facilities where Papa came from right before they sent him to the hospital; I talked to friends who had resources for me.

Then I asked myself this question:

What does Papa need right now?  Not next week, not next month . . . what does he need today and the next few weeks?

Answer:  Papa needs transition – a bed where he would receive get post-acute care – where he would receive rehabilitation.  Give up his long-term bed for now?  YES! 

If Papa is sent back to the third floor (where he was as a “resident”), even though, according to hospital discharge papers, he is supposed to receive post-acute care, how would that be possible at the facility where post-acute care is on the first floor? How would they be able to send 3 shifts of nurse and .CNA to the third floor for just one patient (my father)?

September 16, 2018 Where is Papa now? 

On the first floor of the nursing home – the Skilled Nursing Facility floor, receiving excellent care from saintly nurses and angelic CNAs and wondrous rehabilitation from the super team of physical therapists, occupational atherapists, and speech/swallowing therapist as well as Activities team. The folks who are in all the other departments also make this facility remarkable. After Papa completes rehab, he will be bounced back to resident-status.

And, I give thanks to the building, standing 3-story tall (4 stories when counting the basement level). Oh, if this building could talk! How many patients, residents, and employees has she housed over the decades?

I will publish blog post #3 of 3 of this series soon.

I wish everyone safety, excellent health and abundant joy.

Sincerely,

Teresa Jade LeYung

Teresa Jade LeYung – founder of Love Made of Heart (aka Teresa LeYung-Ryan) speaks openly through her writing and advocacy, her immigrant experience, and her knowing beauty.  As an author, a story consultant, and a found-object artist, she empowers women to transform their own stories and is often quoted as saying: “You think beauty,  You are beauty.”

August 7, 2018

Dear Readers,

I (Teresa Jade LeYung) write to you not as a novelist, theme consultant or found-object artist but as a memoirist, daughter of Mr. Leung, and a witness to joy and despair and a whole lot of kindness.

Papa was doing fine, as fine as a 84-year-old fellow with Parkinson’s Disease (and Diabetes and hypertension) could do. Just four months ago, he was using his walker several times a day … to go from his apartment to the balcony on his floor and to the courtyard in the senior building he lived in.  To show off in the hallway, whenever a caregiver was nearby (and I have photos to prove this), he would abandon the walker and use the handrail to traverse the seventeen feet to the door of his apartment.

On July 19, around 5:00pm while I was away on a writing retreat with two dear friends/colleagues, my sister (who was here for the summer) called me to say that paramedics were taking our father to an E.R.

A few days prior to this one, his caregivers had been reporting (in Cantonese) that our papa  was “looking sad”.  That morning of July 19, caregiver Mrs. G. had reported to my sister that Papa was feeling dizzy.  When my sister called me, my advice to her was to ask questions: “Had Papa eaten breakfast?  Had he been drinking water everyday? What was he doing before feeling dizzy?” He would be seeing his primary care physician that afternoon at 4:00pm … Well, our papa was in no condition to go to the appointment.  His primary care physician instructed my sister to call 9-1-1.

In E.R. and the hospital, our papa was being treated for pneumonia and urinary tract infection.

Pneumonia. When two friends heard the word “pneumonia” they gently prepared me for the worst case scenario. Well, Papa has beat the odds before.

He had aspiration pneumonia (probably caused by food or water going down the windpipe which led to bacteria infection).

And, he was fighting a urinary tract infection.

July 22 (the day that my sister flies home), Papa is transferred to a skilled nursing facility.  He had bounced back before, twice last year – dehydration and falls.  This time is different.

My papa is not Mr. John Pepper (the hero in Chapter 2 “The Man Who Walks Off His Parkinsonian Symptoms” in the book The Brain’s Way of Healing by Norman Doidge, M.D.).  Papa is his own hero, winning smile, flaws and all.

Papa Makes Decision “Where Do I Go Now?”  After Hospitalization.  While In Skilled Nursing Rehabilitation.

August 7, I asked the Director of Social Services at the skilled nursing facility where Papa was at…

“Could we please have a meeting, with a Cantonese-speaking interpreter, so that my father can hear in his native language…what his choices are when he is discharged? I want him to make his own decision. He’s been asking me to help him go home. He needs to understand what is happening.”

Miracles involving my father also involves the ticking of a clock.

The meeting would take place that afternoon. I asked dear friend Sasa to go with me (I needed someone to witness my role).  The meeting would take place after Papa has his lunch and before my friend would need to leave at 2pm.

Staff members at this institution are pulled in various directions during a work day. The Director of Social Services was most accommodating.  Sasa and I arrived at 12:30, patients were waiting for lunch which was served later than usual today.  1:00pm  Papa’s puree and “controlled carbs” meal arrived (looks delicious, really).

At 1:40pm all the characters for the scene were in place – Papa; director of social services; interpreter who is also activities director; my friend Sasa; Papa’s caregiver Mrs. G who was visiting; and me.

What are the 3 options when skilled nursing facility discharges Papa?

• Go home? He was receiving 5 hours/day of care through IHSS. He now needs 24-hour care.  Who will pay for the 19 hours each day? His monthly income from Social Security is approximately $1,000; $300 of that goes to paying rent of a studio apartment in a senior housing; the balance pays for food, hygiene products, telephone, TV, SF Paratransit. My sister and I can contribute up to $700/month. Care-giving costs $35-$40/hour; most agencies want a 4-hour minimum each day; our $700/month would buy approximately 18 hours.
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• Go to an assisted living home or a board-and-care home (fewer residents in these types of homes) – in San Francisco Bay Area, minimum cost is over $3,000/month. According to https://www.senioradvisor.com/san-francisco-ca/how-much-does-san-francisco-assisted-living-cost  on average, a senior can expect to pay approximately $54,000 per year on these services.
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• Accept a Medi-Cal bed in a nursing home for long-term care. (If Papa were to private pay, the cost of nursing home care would be more than $300/day.)  Because he has Medi-Cal (thank God), he would authorize Social Security to transfer his monthly income to the nursing home. http://www.canhr.org/factsheets/medi-cal_fs/html/fs_medcal_overview.htm Medi-Cal is a combined federal and California State program designed to help pay for medical care for public assistance recipients and other low-income persons. There are 3 of these beds (vacancies) in the facility right now, on the nursing home floors.
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The Michael J. Fox Foundation  www.michaeljfox.org

https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease  In addition to the classic motor symptoms of Parkinson’s (tremor, slowness, stiffness, walking and/or balance problems), a person may develop changes in speech and/or swallowing.  Speech and swallowing therapy exercises, combined with Parkinson’s medication adjustment and, if necessary, dietary and/or behavioral modifications are the mainstays of management.

… to improve swallowing and lessen the risk of aspirating. These could include dietary modifications — such as thickening liquids — and/or behavioral strategies, such as avoiding drinking through straws, tucking the chin to the chest when swallowing or taking smaller bites at slower intervals.

To hear a webinar presented by Michael J. Fox Foundation on urinary problems and Parkinson’s… click here or look up any webinar by visiting at www.michaeljfox.org/webinars.

http://canhr.org

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http://canhr.org/factsheets/rcfe_fs/html/rcfe_evalchecklist_fs.htm

Since 1983, California Advocates for Nursing Home Reform (CANHR), a statewide nonprofit 501(c)(3) advocacy organization, has been dedicated to improving the choices, care and quality of life for California’s long term care consumers. Through direct advocacy, community education, legislation and litigation it has been CANHR’s goal to educate and support long term care consumers and advocates regarding the rights and remedies under the law, and to create a united voice for long term care reform and humane alternatives to institutionalization.

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Sincerely,

Teresa Jade LeYung

http://lovemadeofheart.com/blog/papa-wins-parkinsons-disease-loses-papa-wins/

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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: