Posts Tagged ‘advocate’
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 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:
Blog post #2 of 3 in this series:
Blog post #1 of 3 in this series:
For other posts in my blog, please go to: https://lovemadeofheart.com/blog
If you’re looking for my blog posts pertaining to our Beautiful Brains and Neuroplasticity… https://lovemadeofheart.com/blog look at right side of screen, you’ll see the category “Beautiful Brains Neuroplasticity”. Please click on that category to get those posts.
by Teresa LeYung-Ryan
This is 2 of 4 of my blog posts entitled “Parkinson’s Disease, My Chinese Papa, and My practicing The Four Agreements”
I didn’t know that I would be enjoying my new part-time job as my father’s exercise coach, appointment escort, and advocate OR that I would be practicing The Four Agreements (from Don Miguel Ruiz’s timeless book).
Agreement #2 – Don’t Take Anything Personally
Would you say that I ” took it personally” (in Blog Post 1 of 4)?
Well, here’s what happened this time… I escort Papa to his quarterly appointment with his podiatrist; Papa’s feet have diabetic nerve damage. The doctor’s assistant is named Geri; I tell her “What a lovely name, I know another Geri.”
I meet the podiatrist (male doctor) and give him a copy of the “After Visit Report” from Papa’s neurologist; I see him (podiatrist) reading the neurologist’s report that includes the recommendation to continue Carbidopa/Levodopa (the drug that helps alleviate some of the Parkinson’s symptoms)
A minute later, the podiatrist is asking Papa: “You’re taking what I prescribed? Gabapentin. No side effects?”
Papa looks confused. The doctor writes a prescription refill and hands it to me. Then he proceeds with clipping my papa’s thick and discolored toe nails.
Later in the lobby while waiting for SF Yellow Cab, I tell Papa and his sweetheart Mary that I would gladly go to Target Pharmacy for him, to fill this prescription. Mary says in Cantonese “Don’t bother, he already takes too many pills.” Papa is nodding in agreement.
“Okay,” I say and I start for the elevator. “I’ll give back this prescription.”
“Don’t!” Mary leaps to her feet. Papa looks agitated.
I’m raising my voice. “I told the doctor that I would fill the prescription. If I’m not going to, then I want to let him know that.”
Papa speaks in Cantonese: “He won’t like me if he knows I’m not taking his medicine.”
“You’re worried about being liked,” I snap. “Okay, it’s your life, not my business.”
Later, at my own home, I realized that I was taking it personally (not practicing Agreement #2) and getting upset with my father (not practicing Agreement #1). Oh, Angel Mom, please give me strength.
The researcher in me wanted to know what the heck is Gabapentin. So, I go to Mayo Clinic’s website. According to:
http://www.mayoclinic.org/search/search-results?q=gabapentin
Gabapentin (Oral Route) is used to help control partial seizures (convulsions) in the treatment of epilepsy. This medicine cannot cure epilepsy and will only work to control seizures for as long as you continue to take it.
Gabapentin is also used in adults to manage a condition called postherpetic neuralgia, which is pain that occurs after shingles.
Gabapentin works in the brain to prevent seizures and relieve pain for certain conditions in the nervous system. It is not used for routine pain caused by minor injuries or arthritis. Gabapentin is an anticonvulsant.
This medicine is available only with your doctor’s prescription.
Once a medicine has been approved for marketing for a certain use, experience may show that it is also useful for other medical problems. Although this use is not included in product labeling, gabapentin is used in certain patients with the following medical condition:
- Diabetic peripheral neuropathy.
WHY IS A PODIATRIST PRESCRIBING THIS DRUG WHEN PAPA’S DIABETES DOCTOR AND NEUROLOGIST ARE ALREADY PRESCRIBING OTHER DRUGS?
The next time I saw Papa, I apologized. Also, I composed a letter to his primary care physician and diabetes doctor, asking them for guidance.
Gee, practicing the four agreements is hard work.
To share your comments, please click on the blue title box on top of this blog post, then scroll down . . . Thank you so much!
For other posts in my blog, please go to: https://lovemadeofheart.com/blog
If you’re looking for my blog posts pertaining to our Beautiful Brains and Neuroplasticity… https://lovemadeofheart.com/blog look at right side of screen, you’ll see the category “Beautiful Brains Neuroplasticity”. Please click on that category to get those posts.
Author & Fanbase-Building Coach Teresa LeYung-Ryan says: “Reach out, not stress out. Enjoy your writer’s journey.”
http://WritingCoachTeresa.com
http://lovemadeofheart.com/blog/
https://www.youtube.com/user/teresaleyung
Teresa LeYung-Ryan is the 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’s Journey Through Self-Forgiveness, Sparked by 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 (which attracts tens of thousands of writers) at http://WritingCoachTeresa.com helps writers build their platforms before and after publication
Dear Writers/Caregivers/Advocates for Loved Ones,
Coach Teresa LeYung-Ryan here . . . I see how helping a loved one/being an advocate is so much like writing a book.
My papa has been diagnosed with Parkinsonism by his neurologist. If Papa is telling his story, he would be the first-person narrator; if I’m telling the story about him, then I would be the third-person narrator.
A book (story) consists of one main character (also known as “hero” or “protagonist”) or multiple main characters and other characters (other archetypes), a subject matter that is discussed repeatedly (“theme”) and at least one plotline (“what happened?”). The merging of these elements helps the writer show the hero’s journey.
Helping a loved one/being an advocate consists of at least 2 protagonists (YOU and the loved one) and other archetypes (physicians, healthcare and social service providers, other family members and friends, neighbors, coworkers, vendors, . . . the stranger who gives up her/his seat on the train for you), themes (the cause for help and advocacy and the related issues), and plotlines (the interconnected events associated with all the characters). Who will be the most transformed in the story? The loved one? You the caregiver/advocate? The person who is most transformed would be the main character/hero/protagonist. Perhaps both people will go through great transformation. Two protagonists!
I am writing – I keep a notebook for whenever I visit my papa or when I do something on his behalf- gosh, there are so many little “subplots” to keep track of! (Is this Papa’s third or last session with the physical therapist? Mary and I need to witness the exercises so that when the P.T. closes the case, we would be able to coach Papa. Did he say he wanted another heating pad? Oh my, there are at least 18 model to choose from. Gotta review friends’ advice about what is a comfortable bed and also Consumer Reports. Then Papa has to “test drive” some beds. You just can’t shop for a mattress the way you shop for a pair of shoes.
MATTRESS SHOPPING TIPS (from Sealy’s website)
- Plan to spend at least one hour in the store.
- Wear loose clothing and easily removable shoes.
- Test out mattresses in groups of three for easier comparison.
- Lie on each mattress for 5 to 15 minutes to let it fully adapt to your body.
- Don’t feel rushed. It’s ok to ask for privacy.
I would add: Bring your own pillow so that your neck is supported while trying out mattresses; maybe bring an extra pillow case too.
And, I am reading the book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D. Chapter 2 is titled “A Man Walks Off His Parkinsonian Symptoms” . . . how John Pepper has been able to reverse the major symptoms, the ones that Parkinson’s patients dread most, those that lead to immobility. He’s done so with an exercise program he devised and with a special kind of concentration . . .
All the “characters” in Dr. Doidge’s books (The Brain’s Way of Healing and The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science) and in Dr. Victoria Sweet‘s book (God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine) are guiding me on my journey as an advocate for my father. And, I just know that my mom plays a huge role in helping me.
I thank everyone who has given me her/his time, energy, and prayers.
Here are links to websites I’ve relied on lately:
https://franceskakugawa.wordpress.com/category/caregiving/ Frances Kakugawa
http://www.writeradvice.com/ywmtdw.html B. Lynn Goodwin
http://www.normandoidge.com/ Norman Doidge, M.D.
https://www.michaeljfox.org/ Michael J. Fox Foundation
Special thanks to Margie Yee Webb, Frances Kakugawa, Penny Manson, Debbie Ramos and her daughter Melanie who went out of their way to help me research specific items and to Mary, my sister Maria Leung, Linda Harris, Sue, Janet, and Elaine for being there in person.
Sincerely,
Writing Coach Teresa LeYung-Ryan
Author & Fanbase-Building Coach Teresa LeYung-Ryan says: “Reach out, not stress out. Enjoy your writer’s journey.”
http://WritingCoachTeresa.com
http://lovemadeofheart.com/blog/
https://www.youtube.com/user/teresaleyung
My client Jodi O’Donnell-Ames checks in every Wednesday via email. She’s in New Jersey; I’m in California. Whenever a client misses a check-in, I send them a thought: “Wherever you are today, whatever you’re doing, I send you joyful wishes.” If I don’t hear from the client after a couple of days (unless I know that she/he is on vacation), I email her/him: “How are you doing?” Last week when Jodi didn’t check in on Wednesday, I thought about her. The next day, she let me know about her personal protagonist’s challenges.
Jodi sent me the link to her blog post Doing Time with LYME (what a memorable title!). In her post, she provided a link to her article “Lyme Time” for NJ Monthly magazine.
Spring is upon us. That means an increase in activity for the black-legged tick—more commonly known as the deer tick. This grotesque little creature carries the bacterium (Borrelia burgdorferi) that causes Lyme disease.
Lyme disease is on the rise in New Jersey, where dense forests and vegetation provide a veritable paradise for the deer tick.
So, I submitted my comment to her blog post:
Hi, Jodi,
You are an engaging writer. And thank you for “Prevention Pointers” in your wonderful article “Lyme Time” for NJ Monthly magazine.
As the weather heats up, so does the risk of Lyme disease—and the controversy surrounding diagnosis and treatment.
I’d like to share other links with your fans. In California . . . http://www.cdph.ca.gov/healthinfo/discond/Pages/LymeDisease.aspx (this site offers information for Spanish readers too)
http://www.ipm.ucdavis.edu/PMG/PESTNOTES/pn7485.html
According to this site–Risk Map of California–http://www.lymedisease.org/california/california_map.html the ticks that carry Lyme disease have been found in all but two counties in California.
Jodi, thanks again for helping others by writing about your experiences and offering resources.
Sincerely,
Writing Career Coach Teresa LeYung-Ryan
author of Build Your Writer’s Platform & Fanbase In 22 Days
Jodi had used these tags in her post; so will I; that way I can help spread these tags on what I call the “Fabulous Cyberspace Index” Also, I’ll add the tags “New Jersey” and “California”
health, ticks, information, advocate, illness, lyme disease
Next, I blog about Jodi O’Donnell-Ames with this post.
Then I remember that Jodi was referred to me by my colleague Judith Marshall, the author of Husbands May Come and Go but Friends are Forever (Judith’s book is recently optioned for the big screen!), through She Writes. So, this evening, I invested an hour to join this exciting writing community. Thank you, Judith & Jodi! Thank you, Monica Medina of She Writes, for the nice welcome. Also, I commented on Monica’s page by thanking her and linking this post so that she can see Judith’s and Jodi’s names again.
Cheers to She Writes!
http://www.shewrites.com/profile/TeresaLeYungRyan
Sincerely,
Coach Teresa
Teresa LeYung-Ryan says: “Reach out, not stress out, when pursuing your dreams!”
Love Made of Heart inspiring adult children of mentally ill parents to speak openly about the stigmas and find resources for their families.