Feeling small, walking along with you, Dia de los Muertos

Sunset from the deck. Photo not altered in any way – this is what we saw!

It’s been a full few months since the last post with visits from Anne and Keith, Marika, and David and Charles; trip to Vashon Island near Seattle in part to test the effects of an oxygen concentrator on flying and changes in oxygen concentration; another trip to Dallas with 3-day visits from Jeff both times; Jean and I made a guidebook for pure autonomic failure and it’s available on Amazon; I put together a trauma and emergency pack; dinners out and at home with and without others; good harvest this year (Sour Diesel, Godfather OG, White Widow); making the shrine described below; countless lovely mo

Walking in Berkeley. This is actually in an industrial area.

rnings; cozy bedtimes; life. Photos don’t always track words in this post.

Driving to SFO, out of the hominess of Berkeley past the jammed bang and clang of freeways past huge mutestructures and indecipherable signs pimping AI and through the airport with ease and then a lounge with dry scrambled eggs and not bad coffee and finally (on-time!) flying to DFW, easy flight and then the vastness of DFW and in a car through Irving and then Dallas with all the big buildings unreeling outside the window canyons of condos and apartments and what is it like to live in these places and on to riding past endless gigantic structures wondering at the idea of working in these places and not for the first time feeling small and out of touch, insignificant, the world gone past me and finally

John, me, Jeff, 2015

to my house in Old East Dallas for slow, full days seeing friends and family then back to DFW and flying back to SFO and not quite third-world chaos at the Uber pick-up and the driver taking us past more buildings endlessly and taking a short-cut through The City and there is a couple walking with a friend and suddenly the world not so overwhelming because these are people just like people everywhere living their lives with all the ups and down and Uber taking us into Berkeley and I’m looking into the windows of houses along the way and those people, too, living their lives as are we.

—————

In Berkeley. Walking along Milvia on this street of trees and old houses and green, gardens, flowers, herbs in the morning

Living room, Dallas. Light from crystal

sun on a warm day. See the old people, slow, bodies changed over the years, bent, canes, walkers; and the young people, strong, yoga pants, no clue of what’s to come and babies, beautiful beyond their dreams.

I was listening to Darling Belle, a beautiful song by the Incredible String Band. A-Cha! I figured out how to play this song to my wife – lyrics printed in sections and each section on a separate page

—————

2026 morning

We went to an art show in Dallas at the White Rock Lake Bathhouse. The show was about Dia de los Muertos (Day of the Dead). I wasn’t eager to go because I’ve seen enough psychedelic skulls and dancing skeletons. This was

Walking in Berkeley

different though – there were 12-15 actual family altars which were beautiful to us both. I felt like I got it about Dia de los Muertos. It’s honoring our loved ones who have passed away, our loved ones who are dead, as we will be too one day sooner than later. I’m on the way!

Afterward Jean suggested we make an altar

for our deceased spouses. Yes! This is what we made for David Leach and Leslie Kemp.

Walking through the neighborhood where refugees lived

Praying at New Year celebration

In reading over this to look at themes that might have emerged I see there’s a lot of bad things here. Lot of problems, lot of pain. But that’s what we were about: solving problems, lifting up the afflicted, trying to do the spirit.

————–

We were in Dallas a few weeks ago. I went for a walk in the old neighborhood where refugees used to live and I used to work. One building after another each one filled with memories of struggles, of desperation, of beauty, of loneliness, of hard, hard work, of endurance, of strength, of triumph lost in the desperation, but triumph nonetheless.

Where the old couple lived with their deaf and mute granddaughter who may not have really been related. After a few years the husband had a stroke and ended up in a nursing home on Bryan and the wife walked to the place, her conical hat, every day to take care of her husband. At his funeral home the family was holding a vigil and the funeral home guy brought a customer into the room to look at the casket the husband was actually in. The granddaughter went to work for Fiesta Mart. She and I had lunch together a few times over the years.

Strong family

In one of the downstairs apartments a man was murdered, stabbed to death and his wife slashed and assaulted. I found out about it when Leslie called me to come to her office and the woman was sitting on her floor under a table with what looked to me like primitive stitching to close the wounds and there was a Baptist minister huddled mute in a chair. I went to the apartment to get something and there was blood literally everywhere – floors, walls, ceilings. One of the detectives asked me some questions in a friendly manner = to assess whether I should be interrogated.

Where two brothers argued over a bowl of rice and one stabbed the other, killing him. I always thought their mother had the most beautiful eyes.

4320 San Jacinto – the pretty Mexican woman with mutilated genitalia.

Broken glass, family, Baylor student

The children capering around a 5-gallon bucket and a mouse inside they were killing with sticks.

Where the old American woman lived with her son. She was a hoarder and eventually burned her apartment out.

4400 – where the old thin woman with lung disease lived sharing a one bedroom apartment with a woman who had been crippled from a Khmer Rouge injection. The old woman lived in the tiny living room and the disabled woman lived in the equally tiny bedroom. The two women hated one another. Chuck, in my bible study group bought the old woman a window air conditioner.

Traditional dancers at elementary school

In a corner apartment lived a family in which the husband had liver cancer and the daughter ended up killing herself. In another one-bedroom corner apartment there was a family of 6 – husband, wife and four sons. The husband went to work for in a hospital food service and stayed in that job for 30 years. The wife opened a little liquor store and parlayed that into several large stores.

Winter in the apartments

Upstairs a man was dying from a rare cancer. His wife and teen son and daughter took care of him. I took him to the Parkland ER where they parked him on a gurney in a hallway. I offered him a stick of gum and he refused. He died there later that day. When I called his sponsor he said, “I can go maybe $200” for the funeral. A few years after he died his son had a GI bleed and suffered brain damage as a result. His daughter was doing well the last I saw of her when she helped a friend who was dying of breast cancer.

Where “The Mansion” was is now a vacant lot. It was a large two-story house where in room after room refugee families made their homes. For a few months when he was an infant my son stayed part of every weekday with an old Cambodian woman in that house. She would hold him when he was awake and rock him in a hammock when he was asleep. In the old days the apartments next door was where the woman who took care of my son lived with her daughter and granddaughter. The granddaughter’s story is here: https://ckjournal.com/keo

It was in this apartment that General William Westmoreland, commander of all the U.S. troops in Vietnam visited with us to have an orange soda and a cookie and hear about the work we had been doing in the refugee community.

Carroll Street in back of apartments

Outside of many apartments people were growing lemon grass and basil and other produce.

Upstairs there were two sisters. Martin and I were talking with them one day and the next day they went swimming in a lake and one drowned and the other was in ICU for some days. I remember how small she looked in the bed in Children’s Medical Center.

There was a very nice family upstairs with sons and daughters working. They had a celebratory feast for my students. I wish I remembered their names. One of the daughters and her family and I were friendly for years.

The man with no face.

The “youth counselor” according to his business card who tried to take a teen boy from his family. They thought they had to agree to him taking the boy. We ended that deal.

A teen’s art. Memories of death

People barging into refugee’s apartments and taking whatever they wanted. We had a grass-roots spear-making project. Jam them through the door when the robbers rattled the doorknob and the problem went away. Cool.

Someone called Leslie’s friend, Alison to report some children being molested. Leslie and Alison called police who said “we’ll take a report.” I knew someone who worked in the sex crimes against children unit and I called him and the molester was arrested in the next day or so. They (L & A) went together to the trial to mind the children while waiting for them to be called to testify. They went back for the sentencing: Life, because he’d been convicted twice before for similar crimes.

There was a police storefront housed in what used to be an unsavory bar (I was driving past one day and a women standing there lifted her skirt). My students operated out of that storefront for several years. For a while a derelict man named W—— would come to the storefront for a student to do a weekly(!) dressing change on a chronically infected leg that had maggots in it.

We were evicted from the police after the commander over the Central Patrol District came by to see the sergeant in charge and neither the sergeant nor any other police officers were in the building – just Baylor students, volunteers, and refugees – including a Roma (gypsy) girl who stood up on a desk and did a sexy dance for the commander who deeply did not appreciate it.

Dressing change behind police storefront

A Chinese woman sold soft drinks and snack foods out of her apartment. Her daughter had a large nevus (mole) on her cheek. The mother told the daughter that the nevus was punishment for wasting her husband’s money in a previous life. The little girl was set for surgery to remove the nevus and I was going to take them. The girl came out of the apartment and got into the truck, then her mother came out and said something and the daughter says, “My mother says there is a man with a gun in there.” And then she says, “There he is.” And I was pulling the mother and the little brother into the pickup and there was a man with a revolver stuck in his pants and he was walking fast looking kind of intense and I was driving backwards across a couple of parking lots. At Children’s hospital they gave the girl a fentanyl sucker and pretty soon she was all happy and relaxed and on the way to surgery.

A woman died and the preacher didn’t show up for the funeral so it ended up with two Mormon missionaries and me holding the service. They didn’t know what to do and neither did I, but we did the best we could.

Friends and relatives

In one of the buildings there was an apartment that had rooms that seemed like a labyrinth. One day I was in that apartment with a student, Olivia, who I liked a lot. We were talking with a Cambodian woman and Olivia said, “Mr. Kemp, there’s a fire in the closet.” Sure enough the woman’s 4-year-old son had set a fire in the closet. I threw the burning clothes out of the apartment and got a burn from a melted tennis shoe. A few years later a Mexican girl named E——- was in the apartment and it caught fire. She ran the wrong way and was trapped and died. I have candle from one of the novena services.

There was a woman with tuberculosis upstairs. The TB nurse doing direct observed therapy (DOT) was a friend of mine and I would see her every week or so. DOT is where a health professional of some kind directly observes the patient taking their medicine every day. The woman’s daughter and I were friends on Facebook for several years.

Also upstairs was a woman with cervical cancer who I and my students took care of for 2-3 years (cervical cancer is a slow grower) who ultimately died curled up on a worn-out loveseat in the living room at the very moment I walked into the room after a trip to Boston. Her daughter had been her main caregiver and she and I and a cute little gangster

Health education student and patient

from downstairs washed the lady’s wasted body and dressed her in a sarong and a pink T-shirt. Somewhere along the way her son went to prison for robbery. He had committed some violent crimes and was sentenced as an adult. When he got out of prison about 10 years later he was deported to Cambodia. I saw him between release and deportation and he thanked me for caring for his mother. The last time I talked with his sister was six years ago.

In the parking lot on Carroll

Two former prostitutes lived downstairs. They liked to fix me lunches. One of them had a daughter with a severe seizure disorder.

In the corner apartment lived a Latino family with a 50 year-old son who had congestive heart failure. His mother was a terror, but she tolerated the students and me. I believe we made a difference in the CHF and extended his life by a few years.

An American man used to walk around the neighborhood with his head encircled by tape (to keep his thoughts inside). When someone would get too close to him he would start shadow boxing in a threatening way so everyone would cross the street when he was coming along with his head taped up, ready to fight.

Sewage and children

Never to forget the American woman who was obese and bedfast and who, when the students turned her over roaches scattered from beneath her back. We saw her for several years and then Alison took over – eventually she died from cancer in that little apartment where I would sit at the table with her partner Mr. E while he smoked cigarettes. So long, Tressia.

There was a new man living across the street. I took him to the Parkland ER for buboes (enormously enlarged lymph nodes in his groin) and somewhere along the line a doctor brought me into a dark room with glowing monitors in the middle and along the walls and people sitting facing the monitors making notes and the doctor showed me the image from the man I’d brought in and I could see he had markedly enlarged nodes all through his chest. AIDS, TB.

Family, hunger

Across the street I was in an apartment one evening and Cambodian people were watching TV. There was white car driving along highways somewhere filmed from a helicopter and I asked what was going on and someone said, “OJ” and I felt like there was some kind of a lesson in someone who had everything driving along like that and people who had nothing watching.

A woman was standing on the sidewalk on Carroll Street holding her limp baby. I stopped, she got in and we drove to Children’s Medical Center where someone in the business office said we should skip the registration and she took us straight to the ER. The baby had pneumonia and she lived.

4500 San Jacinto

1604 Annex was a large two-story building sometimes with gangsters at front and back. This is where my students came across two teenage girls living in an empty apartment with some blankets in the corner. They were runaways from their molester father. The students set the girls up with some furniture and clothes. I would see them around for a long time after that. One went to prison and the other became a manager at Walmart.

There was a Guatemalan woman living there who was prostituting. She offered me sex, but I said no thank you. She was a nice person.

There were a lot of nice people in that neighborhood.

It was good to walk through there again.

A world on fire – Picnic

We were reading last night from A Vast Horizon about Lee Miller’s 1937 photograph, Picnic (photo below – click to see it – it’s worth a look. I think the photo is copyrighted and I didn’t want to copy it myself). We read…

“That year everything was in flux, febrile. Life felt provisional and urgent. There was a sense of living on borrowed time… and then the Second World War smashed into their lives.”

For many years I’ve wondered what people felt and thought and did in those perilous times of the Great Depression, the dustbowl, the rise of Hitler and fascism, wars and rumors of wars, Kristallnacht. Around the world people were on the move, often with nowhere to go. Those were desperate times and then World War Two smashed into their lives.

I’ve wondered. And now it seems to me that we are in similar times. These times are not exactly like those times; but they aren’t that different either. The rich are getting grotesquely richer while many all over the world struggle to no avail, the (re)rise of antisemitism, wars and rumors of wars, artificial intelligence, totalitarianism and pre-fascism. These are desperate times.

I have sat and talked with refugees from around the world, people who have been tortured, who have been starved, who have been displaced, who have been hunted and bombed and shot at, who have lost everything. I never thought to ask, what was it like before the shit really went down? I never thought to ask, when did you know? What was it like, what were you thinking before Srebrenica? Before the fall? Before Year Zero? Before the famine? Did you know? Did you actively pretend like it’s okay or was it just like, maybe things will work out? Was it just like fate?

Did anyone imagine in 1937 that 60 – 75 million people were about to die?

——-

Last night you went to sleep first. I was thinking about these troubled times and I wanted to wake you and tell you that I’m glad we’re together now, but then you awoke and said, “What’s going on?” I tried to tell you, but I felt inarticulate. I still feel that way.

Goodnight, I love you.

Picnic, Ile Sainte Marguerite, France (1937) by Lee Miller

August 2026

At Costanoa near Pescadero

We needed to make a short flight to test a portable oxygen concentrator that would make flying feasible for us. We took Southwest Oakland to Seattle (the oxygen worked!), rented a car, drove to a ferry, took the ferry to Vashon Island, checked in to a nice cabin, and had a very nice few days in a place with very little to do.

——–

Shortly after Vashon, I flew to Dallas to get car registered with state. Similarly to the same trip last year, the flight was delayed and the next day was a marathon of Toyota dealership, Texas Department of Public safety office closed, a second office where they don’t do what I needed done, and then a third office where the entire process, including waiting took less than 20 minutes!

I saw John, David O, Chuck, and Jeff, my mate from the Marine Corps came for a three day visit. Jeff and I talked endlessly. One of the things we talked about at length was Gunnery Sergeants (E-7), a rank unique to the Marine Corps. We had had two Gunnys, one, Gunny Evans (the company Gunny) we feared and the other, Gunny White (commander of weapons platoon) we loved. When I was at Love Field, waiting for the flight home I fell into a conversation with another old veteran sitting next to me in the wheelchairs by the gate. It turns out he was a Gunnery Sergeant AND he had been exactly where we had been operating near Hill 55! He was in 2nd Battalion, 5th Marine Regiment which relieved us, 1stBattalion, 26th Marines! He seemed about my age and I guess he would have been a corporal or sergeant back then. Wow! Wow! Wow!

View from Costanoa

——-

We went to a party at Bill and Lisa’s in LaHonda, where some of Ken Kesey’s and the Merry Prankster’s shenanigans took place. Good times, good fellowship. Jean was with her art tribe and I had a good time talking with an IDF veteran and some of the old hippies that were there.

The plan after the party was to go south and toward Pescadero on the coast rather than make the long drive home tired and late. We had a plan for how we were going to drive to Pescadero, but before we got to the highway there was a sign for a road to Pescadero, so we turned down Alpine Road and drove through the coastal range on the hairpiniest roads either of us had ever driven on and both of us have spent a lot of time in the mountains of Colorado, Wyoming, New Mexico, and elsewhere. There were very few houses or other signs of people for about 25 miles. Finally we got to a little town called Loma Mar (pop. 114) and a few miles further on, Pescadero (pop. 1600), and from there on to Costanoa, where we were going to spend a couple of days with Janet and Larry and Peter and Nancy. The

!!!

y were “glamping” while we had reserved a room in the lodge.

The next day we all had breakfast together at a picnic table and then Janet, et al. went to see some sea lions and Jean and I drove back to Loma Mar – there was something about that town that called to us. We got a sandwich and some deviled eggs in Loma Mar and drove back toward Pescadero. We saw a turn-off for Pescadero State Beach and went there for a picnic lunch in the back of the van and a nap on the low headlands. As we were finishing lunch there was a rumbling roar and a highway patrol motorcycle officer pulled up next to us, then another, and another, and another, until there were 16 motorcycles and highway patrolmen parked next to us! They were

Home

there just to hang out, though the two guys sitting on the beach right below us passing a joint back and forth may have had a few moments of anxiety. After lunch we split to find a quieter part of the park so we could nap with just the sounds of the surf. In the evening very nice dinner with Janet, Larry, Peter, and Nancy. Back to Berkeley the next morning.

——–

A few weeks ago I was having coffee with a friend and told him about challenges I was having uploading the pure autonomic failure (PAF) booklet Jean and I created. He had recently self-published a memoir and he introduced me via email to the typographer who worked on his book. I wrote to her and told her what we’re doing. She wrote back and said, what we’re doing is a good thing and she would like to help at no charge! She and I have been sending files back and forth and we’re allllmost done!

——–

First Aid: Compression bandages, hemostatic bandages, tourniquet, etc.

Standing in line at Monterey Market and a woman asked me if my go-bag is ready. Yes, it is. What times we live in when a conversation like this happens! I just finished updating the go-bag to include improved first aid supplies. We have sufficient supplies. House: 2 months food, medicine, water. Van: one week food, medicine, water.

——-

Other than this it’s the magical life of Berkeley: Mornings in bed drinking Peet’s coffee and enjoying the today show of the SF Bay, fruit for breakfast, going to Monterey Market for fruit and vegetables, Berkeley Bowl for other food, Cheeseboard for bread and cheese, walking the Berkeley Hills…

When the Dalai Lama visited

I was asked to recollect the Dalai Lama’s visit to Grace United Methodist Church to speak to Cambodian refugees in Dallas. Here is what I remember (with a little help from David Overton):

Bill Bryan, the pastor at Grace told me that the Dalai Lama was coming to Dallas to speak at Thanksgiving Square. Bill and I talked about it and thought it would be a good thing if His Holiness spoke to the Cambodian refugees who were in Dallas and didn’t have much in the way of Buddhist spiritual support.

Bill and I worked together to write a letter asking His Holiness to come and speak to the Cambodians. We got the address in Dharamsala from David Overton, a hospice social worker. I recall we said that the Khmer Rouge had killed most of the monks in Cambodia and at that time the Khmer temple in Dallas had not been built. I think there were a couple of novice monks in the Dallas area.

Initially the visit was turned down by one of the Dalai lama’s assistants. David Overton wrote another letter and a few weeks later the Dalai Lama heard

about the request and okayed it. I was not surprised at any part of these events. I think the decision went the way it did because we told him the truth about the situation in Dallas and the Dalai Lama has great empathy for refugees and is himself a refugee.

Bill felt it was inappropriate for a person of a religion other than Christianity to speak from the pulpit and so another site was set up at the front of the sanctuary for the Dalai Lama to speak from.

The visit was publicized word of mouth. At the time I was working in the refugee community seven days a week and I talked to a lot of people every day and I told everyone that a famous monk was going to come to Grace and speak to the people there. Few if any Cambodians had any sense of who the Dalai Lama was, but they understood the idea of a famous monk.

There were over 100 people in the sanctuary. There were many Cambodians, some Tibetans, and some American refugee workers and others. I don’t know how the Tibetans found out about it. At one point I asked some of the Americans to sit toward the back so the Cambodians could come up closer to the His Holiness. Then someone told me I had to sit in front, so that was a little awkward.

Pa Nous Pan did the introduction and I think he did the translation of what the Dalai Lama talked about. His Holiness was speaking English. What he talked about was similar to others of his homilies: being kind to one another was a dominant theme that I recall. He also said that we are all refugees in the Buddha.

When he was through speaking he was surrounded by people from the audience, mostly Tibetans and he was giving people a blessing by draping a white scarf (khata*) around their necks.

I was standing back behind that circle of people and he reached through the people and took my hands which I was holding in a prayerful posture of devotion and he took my hands between his. His hands were very soft. He said, “Keep doing this work.” I thought it was amazing because I hadn’t been introduced to him and as far as I know nobody pointed out to him what I was doing with refugees.

The Dalai Lama gave me a thanka after it was all over. I didn’t want the karma of having it and so a few months later gave it to the Cambodian Buddhist temple that was just then being completed. A few months after that the temple burned to the ground and everything in it was gone. Another lesson in impermanence.

*In Khmer “khata” means an amulet

Pure Autonomic Failure/PAF 1: Self-Care Summary

Warrior, Jean Cacicedo, 2024. Paper, printed, stitched. 15″x15″x1/2″

DAILY MANAGEMENT (HABITS)

  • Rise slowly: pause sitting on the bed edge before standing; pause again before walking
  • Sodium: 6–10 g daily helps retain fluid and support blood pressure (follow your doctor’s target, cardiovascular disease is affected by salt)
  • Medications: Use a pill organizer vs taking meds from bottles so that you never lose track of what you’re taking. See medications below
  • Fluids: 2–2.5 liters of water daily; drinking 500 mL quickly before standing can raise BP acutely; many people take electrolytes with this first water of the day
  • Compression: waist-high compression stockings or abdominal binder are best, thigh-high next best, knee high better than nothing — put on before getting up if possible
  • Meals: small, frequent meals; limit simple carbohydrates to reduce post-meal BP drops
  • Heat: avoid hot showers, baths, and prolonged outdoor heat; use cool water; plan outdoor activity for cooler times of day
  • Sleep position: elevate head of bed 10–20 degrees to reduce overnight BP fluctuation, particularly supine hypertension. Note that elevation is for entire torso vs. just an extra pillow (see photo in complete patient guide (3).
  • Quick fixes: if you feel faint, cross your legs, tense your leg muscles, or squat — these temporarily raise BP
  • BP monitoring: Upper arm, validated device. Measure after 5 minutes supine, after 1-2 minutes sitting, 3 minutes after standing. Log everything (time, position, symptoms. Patterns are of utmost importance
  • Exercise: Regular exercise is important in the overall management of PAF. Exercise in the presence of PAF is a real challenge. Do what you are able. Anything is better than nothing. Water-walking in diaphragm to waist deep water is a great way to extend how long you are able to exert yourself
  • Safety: When feeling unsteady or likely to feel unsteady, use a walker or rollator. Make a personal commitment to sit down, even on a sidewalk when feeling faint. Don’t worry about appearances.

Note: PAF management requires balancing low standing BP against high lying-down BP. Medication changes should always involve your physician. See medication and blood pressure monitoring section in separate post.

🚨  RED FLAGS — Seek Emergency Care Immediately

●     Loss of consciousness or fainting with injury

●     Sudden severe headache (may signal hypertensive crisis)

●     Chest pain or pressure

●     Confusion, slurred speech, facial drooping, or one-sided weakness

●     Fall with possible head injury or fracture

●     Inability to urinate for more than 8 hours
For the ER: PAF patients may present with very low blood pressure on standing and very high blood pressure when supine. Both are features of the disease, not separate emergencies. Tilt the patient slowly. Avoid aggressive IV fluid boluses without monitoring. Contact the patient’s neurologist or autonomic specialist if possible. We made a laminated PAF and medication card to carry and show ER staff if necessary

This guide is for general educational purposes only and is not a substitute for professional medical advice. Always consult your physician regarding your specific condition, medications, or treatment. Medical information changes frequently; verify drug names, dosages, and current guidance independently. The authors disclaim liability for any injury or damage arising from use of this information.

Pure Autonomic Failure/PAF 2: Definitions, medications, BP measurement

Crazy Heart, Jean Cacicedo, 2024. Paper, printed, stitched, 15″x15″x1/2″

What Is Pure Autonomic Failure?

The autonomic nervous system (ANS) runs the body’s automatic functions — the ones you never have to think about: blood pressure, heart rate, breathing regulation, digestion, bladder control, sweating, and the adjustment of blood flow when you move from lying down to standing. In a healthy person, this system operates continuously in the background, making hundreds of fine adjustments every hour.

In Pure Autonomic Failure (PAF), this system breaks down. The nerve cells responsible for autonomic signaling degenerate, and the body loses the ability to regulate these functions automatically. PAF is caused by the abnormal accumulation of a protein called alpha-synuclein in autonomic nerve cells — the same protein implicated in Parkinson’s disease and a related condition called Multiple System Atrophy (MSA). Unlike those diseases, PAF affects the autonomic nervous system almost exclusively, sparing the parts of the brain that control movement and cognition.

PAF is rare — precise prevalence is unknown, but it is significantly less common than Parkinson’s disease. It typically appears in middle to older age and affects men and women roughly equally. The cause is not fully understood, and there is currently no treatment that slows or reverses the underlying degeneration. Management focuses entirely on controlling symptoms.

PAF and MSA: an important distinction

Patients and families are often told, or read online, that PAF can “convert” to MSA — a more serious and rapidly progressive disease. While this does occur in a subset of patients, current research suggests it is around 30%, less common than once believed. PAF tends to follow a slow course over many years. If you develop new neurological symptoms — changes in movement, balance, speech, or cognition — report them to your physician. These may warrant re-evaluation of your diagnosis.

What PAF affects

  • Blood pressure regulation: the most prominent problem; blood pressure falls when standing (orthostatic hypotension) and often rises dangerously when lying down (supine hypertension)
  • Heart rate: the normal increase in heart rate that compensates for a BP drop is absent or blunted in PAF
  • Temperature regulation: sweating is reduced or absent (anhidrosis), impairing the body’s ability to cool itself; heat intolerance can be severe
  • Bladder and bowel: urinary urgency, incomplete emptying, constipation, and less commonly fecal incontinence
  • Sexual function: erectile dysfunction in men; reduced sensation in women
  • Pupillary response: slower adjustment to changes in light

Prognosis

PAF is a chronic, slowly progressive condition. Most patients live with it for many years and, with good symptom management, maintain meaningful quality of life. The disease does not directly cause death, but its complications — falls, injuries from fainting, cardiovascular stress from BP swings — require active management. A small percentage of PAF patients do eventually develop features of MSA or Parkinson’s disease; regular follow-up with a neurologist or autonomic specialist is important.

Where to get help

  • Dysautonomia International: dysautonomiainternational.org — patient advocacy, physician directory, research updates
  • Facebook: there is a PAF group with a collective wealth of information. This group also serves as a portal to biweekly Zoom meetings with Dr. Goldstein usually present.
  • Autonomic specialty centers: academic medical centers with dedicated autonomic programs (Stanford, Mayo Clinic, Vanderbilt, NYU, and others) offer the most experienced evaluation and management
  • Your care team: a neurologist with autonomic expertise should lead your care; your primary care physician plays a key role in day-to-day management and coordination
  • See references for additional resources

Medications commonly used in PAF

Medications for PAF almost always require adjustment, or “titrating to effect,” when starting a new one. The central issue is what effect a medication has on BP and how you feel through the day. PAF management requires balancing low standing BP against high lying-down BP. Medication changes should always involve your physician.

Medication Purpose / Key notes
Droxidopa (Northera) Raises standing BP; first-line for OH in PAF
Midodrine Vasopressor; waking hours only — do not take within 4 hrs of lying down
Fludrocortisone Helps body retain sodium and fluid; raises blood volume
Pyridostigmine Mild BP support with less effect on supine hypertension
Melatonin / clonidine Sometimes used at night to reduce supine hypertension — discuss with physician

BP monitoring at home

  • BP cuff: upper arm, validated device
  • Positions: measure after 5 min supine, after 1–2 min sitting, immediately on standing, and again at 3 min standing
  • Log everything: time of day, position, symptoms, meals, activity — patterns are what matter
  • Pre/post meal: check BP before and 30–45 min after eating to identify postprandial drops

This guide is for general educational purposes only and is not a substitute for professional medical advice. Always consult your physician regarding your specific condition, medications, or treatment. Medical information changes frequently; verify drug names, dosages, and current guidance independently. The authors disclaim liability for any injury or damage arising from use of this information.

Pure Autonomic Failure/PAF 3: A Complete Patient Guide to Management

Dysautonomia Offering. Jean Cacicedo, 2024. Paper, cloth, stitched. 15″x15″x1/2″

PAF is rare, and many clinicians — including in emergency settings — have limited experience with it. This guide is designed to help you understand each aspect of your condition, monitor it at home, and take informed action. Bring it to appointments. The section on each problem includes what to tell clinicians who are unfamiliar with PAF.

1. Orthostatic Hypotension (OH)

Orthostatic hypotension — a drop in blood pressure upon standing — is the cardinal sign of PAF. It is present in virtually every patient and is usually the most disabling problem.

The problem

When you stand, gravity pulls blood into the legs and abdomen. A healthy autonomic system instantly tightens blood vessels and slightly raises heart rate to maintain pressure to the brain. In PAF, this reflex is absent or severely impaired. Blood pressure falls, sometimes dramatically, within seconds to minutes of standing. In some cases there is “impaired Valsalva maneuver,” i.e., a rapid and profound drop in BP after straining at stool or having a bowel movement.

What it feels like

  • Lightheadedness, dizziness, or a sensation of “going gray” when standing
  • Generalized weakness or heaviness in the legs
  • Feeling vaguely unwell, foggy, or drained — especially after meals or in heat
  • Blurred or tunneled vision
  • Neck or shoulder ache (the “coat hanger” pattern) from poor perfusion to neck and shoulder muscles
  • Symptoms that improve promptly when lying down

What can go wrong

  • Fainting (syncope) and falls — with risk of injury
  • Reduced blood flow to the brain over time, with potential for cognitive effects
  • Supine hypertension: the same regulatory failure that causes low standing BP often causes dangerously high BP when lying down — treatment, including self-care, must balance both
  • Labile BP: wide swings between high and low stress blood vessels and organs
  • Post-meal (postprandial) hypotension: BP drops further after eating as blood shifts to the digestive tract
  • Exercise intolerance: it is not just the heart and brain that are affected by OH. Muscles also need blood to function optimally.

Testing

Medical:

  • Orthostatic vitals: BP and heart rate measured in three positions
    • Protocol A (autonomic lab standard): 5 min supine → 1 min standing → 3 min standing
    • Protocol B (some clinical settings): supine → seated 1–2 min → standing 1 min → standing 3 min
    • A drop of ≥20 mmHg systolic or ≥10 mmHg diastolic confirms OH
    • In PAF, heart rate does NOT rise significantly when BP drops — this distinguishes PAF from most other causes of OH and is an important clinical clue
  • Tilt-table test: clinic-based; controlled reproduction of positional BP changes
  • 24-hour ambulatory BP monitor: captures full day/night BP profile including supine hypertension

Home monitoring:

  • Upper-arm validated BP cuff (not wrist)
  • Measure after 5 min supine; after 1–2 min sitting; immediately on standing; at 3 min standing
  • Keep a log: time, position, symptoms, meals, recent activity
  • Morning pre-rising readings often capture the highest supine BP

Bring your log to appointments. Clinicians unfamiliar with PAF may not order orthostatic vitals routinely. A home log over days or weeks gives a far richer picture than a single office reading.

What you can do

Daily habits:

  • Rise slowly: sit on the bed edge before standing; pause again before walking
  • Avoid constipation and straining to have a bowel movement; allow for recovery after bowel movement
  • Sodium: 6–10 g daily (your physician may set a different target)
  • Fluids: 2–2.5 liters daily; 500 mL drunk rapidly before standing or arising from bed gives an acute BP boost
  • Compression: waist-high stockings or abdominal binder — on before getting up
  • Meals: small and frequent; limit simple carbohydrates
  • Heat: avoid hot showers, baths, outdoor heat — all worsen OH
  • Bed elevation: raise head of bed 10–20 degrees to reduce overnight fluid loss and moderate supine hypertension. Note that elevation is for entire torso vs. just an extra pillow

    One means of elevating torso: 4×4 supporting piece of 3/4″ plywood at an angle. There are also mechanical head-elevators available from mattress retailers

  • Physical countermeasures: leg crossing, tensing leg muscles, or squatting can temporarily raise BP when symptoms start
  • When feeling unsteady or likely to feel unsteady, use a walker or rollator. Make a personal commitment to immediately sit down, even on a sidewalk, when feeling faint. Don’t worry about appearances.

Medications:

  • Droxidopa (Northera): norepinephrine precursor; raises standing BP; first-line for PAF
  • Midodrine: vasopressor; waking hours only — do not take within 4 hours of lying down
  • Fludrocortisone: promotes sodium and fluid retention, raising blood volume
  • Pyridostigmine: modest BP support with relatively less effect on supine hypertension

Note: medication changes should always involve your physician. The OH–supine hypertension balance is delicate.

Important note: maintaining optimal physical condition is helpful in maintaining maximum physical and mental well-being. This is true for anyone, and especially for people with PAF. A significant challenge in regular exercise is that decreased blood pressure means decreased blood perfusion into muscle tissue, i.e., the muscle machine of the body is running on less fuel. Water walking (walking in midriff/diaphragm or waist deep water) is a great way to exercise. I can walk for 45 minutes nonstop in water, but only for 10–15 minutes out of the water before falling BP exhausts me. Why does water walking work? There is just enough pressure from the water to prevent pooling of blood.

2. Supine Hypertension

Supine hypertension — high blood pressure when lying flat — occurs in the majority of PAF patients and is the flip side of orthostatic hypotension. The same failure to regulate vascular tone that causes BP to fall when standing allows it to rise unchecked when the body is horizontal.

The problem

When lying flat, blood no longer has to fight gravity to reach the brain. Without autonomic regulation to keep vessels appropriately relaxed, pressure builds. BP while supine can reach 160–200+ mmHg systolic in PAF patients — even patients whose standing BP is dangerously low.

What it feels like

  • Often no obvious symptoms — supine hypertension can be silent
  • Headache, especially at the back of the head, when lying down
  • Nausea or a sense of pressure or fullness
  • Nocturia (waking to urinate frequently) — the kidneys excrete excess fluid in response to high overnight BP
  • Worsened morning OH: overnight pressure natriuresis (fluid loss through urine) reduces blood volume, making the standing BP drop worse the next morning

What can go wrong

  • End-organ damage over time: heart, kidneys, and blood vessels are stressed by chronically elevated overnight BP
  • Hypertensive crisis: very high BP (typically >180/120) can cause stroke, heart attack, or acute kidney injury
  • The treatment paradox: medications that raise standing BP can worsen supine hypertension; this is the central management challenge in PAF

Testing

  • 24-hour ambulatory BP monitoring is the most informative test — captures the full night/day profile
  • Home BP check before bed and immediately upon waking (before rising) reveals the overnight pattern
  • Keep a log alongside OH readings — the relationship between morning supine BP, overnight nocturia, and morning OH severity is diagnostically useful

What you can do

Daily habits:

  • Elevate the head of the bed 10–20 degrees — reduces venous return to the heart and moderates supine BP
  • Avoid lying flat during the day; use a recliner or wedge pillow for rest
  • Time medications carefully: midodrine and fludrocortisone should not be taken close to bedtime
  • Limit fluid intake in the evening

Medications:

  • Short-acting antihypertensives at bedtime are sometimes used (e.g., losartan, melatonin in higher doses, nitroglycerin patch) — but only under physician supervision; these can cause dangerous morning OH if they act too long
  • The goal is to reduce nighttime BP without depleting blood volume or causing excessive morning hypotension

3. Temperature Dysregulation and Anhidrosis

PAF impairs the body’s ability to regulate temperature. The primary mechanism is anhidrosis — reduced or absent sweating. Sweating is the body’s main cooling system, and without it, body temperature can rise rapidly in warm conditions.

What it feels like

  • Little or no sweating even during exercise or in heat
  • Feeling overheated or flushed in warm environments
  • Heat intolerance: fatigue, weakness, and worsened OH symptoms in warm weather
  • In some patients, excessive or abnormal sweating in isolated areas (compensatory hyperhidrosis)

What can go wrong

  • Heat exhaustion or heat stroke — both are genuine medical emergencies for PAF patients
  • Heat dramatically worsens orthostatic hypotension — hot environments are doubly dangerous
  • Exercise in heat is high-risk; even a warm shower can trigger a significant BP drop

Testing

  • Quantitative Sudomotor Axon Reflex Test (QSART): a specialist test measuring sweat gland function at multiple sites — available at autonomic centers
  • Thermoregulatory sweat test (TST): maps the pattern of anhidrosis across the body
  • Home observation: note sweating (or its absence) during exercise, warm environments, or mild exertion

What you can do

  • Avoid heat: hot showers, saunas, outdoor exertion in warm weather, heated car interiors
  • Cool proactively: cool water, cooling vests, air conditioning, damp towels on the neck and wrists
  • Exercise with caution: water-based exercise (swimming, water aerobics) is often better tolerated because the water assists cooling and exerts pressure on limbs
  • Time outdoor activity: early morning or evening when temperatures are lower
  • Alert others: people around you should know you cannot cool yourself normally and recognize signs of overheating
  • Emergency: if body temperature rises above 104°F / 40°C, this is a medical emergency — call 911

4. Bladder and Bowel Dysfunction

The autonomic nervous system controls bladder and bowel function. In PAF, both can be significantly affected, though severity varies widely among patients.

Bladder — what it feels like

  • Urgency: sudden, intense need to urinate with little warning
  • Frequency: urinating more often than normal, including at night (nocturia)
  • Incomplete emptying: the bladder does not fully empty, increasing infection risk
  • Urinary retention (less common): inability to urinate, requiring catheterization
  • Urinary incontinence in some patients

Bowel — what it feels like

  • Constipation is the most common bowel symptom in PAF — slowed gut motility
  • Bloating, early satiety, and nausea (gastroparesis — delayed stomach emptying)
  • Less commonly: fecal urgency or incontinence

What can go wrong

  • Urinary tract infections from incomplete bladder emptying — these can be serious and recurrent
  • Severe constipation leading to fecal impaction
  • Straining to have a bowel movement can cause syncope (passing out)
  • Gastroparesis can complicate nutrition and medication absorption
  • Nocturia from both supine hypertension (pressure natriuresis) and bladder dysfunction disrupts sleep significantly

Testing

  • Post-void residual (PVR) ultrasound: measures how much urine remains after voiding — simple, non-invasive
  • Urodynamic testing: specialist evaluation of bladder muscle and nerve function
  • Gastric emptying study: nuclear medicine test for gastroparesis
  • Home: keep a bladder diary (timing, volumes, urgency episodes)

What you can do

Bladder:

  • Take your time urinating, let it all out
  • Timed voiding: urinate on a schedule (e.g., every 2–3 hours) rather than waiting for urgency
  • Pelvic floor physical therapy like Kegels can improve urgency and incomplete emptying
  • Medications: anticholinergics (oxybutynin, tolterodine) reduce urgency; discuss with your physician as these can worsen cognition in older adults
  • If retention is significant: intermittent self-catheterization may be necessary
  • Stay well hydrated — counterintuitively, restricting fluids can worsen bladder irritability

Bowel:

  • High-fiber diet and adequate hydration are the first interventions for constipation
  • Do not stand up immediately after a bowel movement, to avoid a sudden BP drop
  • Regular scheduled toilet time (e.g., after breakfast) uses the body’s natural reflexes
  • Osmotic laxatives (polyethylene glycol / Miralax) are well tolerated for chronic constipation
  • For gastroparesis: smaller, more frequent meals; avoid high-fat foods; your physician may consider prokinetic medications

When to Seek Emergency Care

🚨 Call 911 or go to the ER immediately for:

  • Loss of consciousness or fainting with injury
  • Sudden severe headache — may indicate hypertensive crisis from supine hypertension
  • Chest pain or pressure
  • Signs of stroke: facial drooping, arm weakness, slurred speech, sudden confusion
  • Fall with possible head injury or fracture
  • Inability to urinate for more than 8 hours
  • Body temperature above 104°F / 40°C

For Emergency Clinicians: PAF patients present with very low blood pressure when upright and very high blood pressure when lying flat. Both are features of the disease. Tilt position changes slowly. Avoid aggressive IV fluid boluses without monitoring BP in multiple positions. Hypotension that responds to lying flat and recurs on standing is likely orthostatic, not hypovolemic. Consult the patient’s neurologist or an autonomic specialist when possible.

Resources and References

Researched and drafted by Charles Kemp and Jean Cacicedo with the assistance of Claude (Anthropic AI). This guide is for general educational purposes only and is not a substitute for professional medical advice. Always consult your physician regarding your specific condition, medications, or treatment. Medical information changes frequently; verify drug names, dosages, and current guidance independently. The authors disclaim liability for any injury or damage arising from use of this information.

Pure Autonomic Failure/PAF 4: Notes on the Lived Experience

Holding My Heart. Jean Cacicedo. Wool, dyed, stitched. 2026, 34”x38″

“It’s hard. The main thing,” Jean says, “is unpredictability.”

“The main thing is unpredictability — if and when you’re going to feel bad. Obviously after every meal, but there are other times as well. The lethargy. The physicality of it — kind of numb throughout the body. Exhausted. Balance issues when walking — I feel like I’m walking drunk, that’s why I have to sit a lot. I feel like I’m on display. Disconnected. Don’t feel right. Don’t feel sick. Not getting blood to your body — it feels like the walls closing in. It happens a lot. Feels like you’re going to faint even after getting ready for bed — but not every night.”

That description — precise, physical, disorienting — is what PAF actually feels like from the inside. No test captures it. No chart note records it.

The complexities of daily management (medications, fluid, sodium, activity, etc.) coupled with whatever other health problems one has can be overwhelming. For example, the effects of PAF on blood pressure and heart rate have, I believe, led to persistent atrial fibrillation (AF) and congestive heart failure (CHF).

Technical medical discussion paragraph: AF and CHF coupled with the exercise intolerance inherent in PAF create challenges in daily life and the work to improve physical conditioning. When CHF is paired with PAF there is a therapeutic conflict between the high sodium demands of PAF and the low sodium demands of CHF. There is also therapeutic conflict between the high fluid volumes needed in PAF and the lower fluid volumes needed in CHF. If this seems technical and complex, it is. The neurologist and cardiologist seem to find it so as well. In our “siloed” health care system the neurologist wants the cardiologist to deal with heart issues and the cardiologist wants the neurologist to deal with autonomic issues. However, these are inextricably bound together in the understanding pathophysiology of PAF. Teaching is minimal. The bottom line: I figure it all out.

The heat intolerance of PAF means that one literally cannot function in a hot climate or on a hot day in a cool climate.

Severe dry eyes require constant management.

The chronic constipation of PAF is complicated by occasional episodes of sudden, severe diarrhea.

When flying with PAF, respiratory distress may be experienced while the plane is ascending and descending. Thus flying is a fearful event. I just purchased an oxygen concentrator to use while flying and have exercises that may help. We will see.

As with other chronic illnesses, PAF affects the entire family; it is truly a family illness.

Invisible and unexplained

PAF is classified by the NIH as a rare or orphan disease. That rarity has consequences that go beyond statistics. Most physicians have little familiarity with it — and some seem to reason that if they haven’t heard of it, it probably isn’t serious. Emergency personnel are largely unaware. Some know something about the more common dysautonomia POTS (postural orthostatic tachycardia syndrome), but PAF is less common and less recognized. Friends and family don’t understand what’s wrong, and explaining it soon runs into blank looks.

The institutional consequences can be surreal. My HMO refuses to include PAF in my chart’s problem list, on the grounds that PAF does not appear in the ICD-10, the World Health Organization’s International Classification of Diseases. No code, no diagnosis. Never mind that the condition exists and requires active management. The problem list is precisely what emergency personnel read first when a patient comes in unable to speak for themselves.

I live with moral injury related to the injustice of medical dependence on a system and individual doctors that will not give me the diagnosis that I live with and the collaborative health care I need.

The work of it

Managing a complex, dynamic chronic illness is genuinely demanding. Symptoms shift hour to hour, day to day, week to week. Staying ahead of them requires attention, discipline, and knowledge that most patients have to acquire largely on their own.

I’ve been fortunate to see an out-of-network autonomic specialist once a year. The Facebook PAF group provides information and community, and coordinates a biweekly Zoom support meeting — often with a prominent autonomic specialist in attendance. These are the resources that actually help. My HMO provides neither education nor support for this condition.

The social calculus

PAF quietly reshapes ordinary life. The postprandial BP drop means that walking to the car after lunch out is an effort requiring calculation. Sitting around the table after dinner becomes difficult. A museum is best taken in small increments, with a rollator — a wheeled walker — as an essential tool. Socializing requires planning that healthy people never think about.

And then there is the gap between appearance and reality. People assume that if you look fine, you are fine. You may look great. You may not feel great. That gap — between the face you present and the body you’re managing — is one of the quiet costs of living with PAF.

Finally

Having PAF is hard, stressful. I’ve experienced almost everything we’ve written about in this guide, except for phenoconversion and some of the testing. I am grateful to my autonomic specialist consultant, to friends and family who have stayed with me, to doctors who have tried to understand and help, and to the PAF Facebook group.

We, Charles and Jean, are grateful for one another.

This guide is for general educational purposes only and is not a substitute for professional medical advice. Always consult your physician regarding your specific condition, medications, or treatment. Medical information changes frequently; verify drug names, dosages, and current guidance independently. The authors disclaim liability for any injury or damage arising from use of this information.

Cambodian refugees

 

New arrivals, Carroll Street

The Cambodians would come into Dallas-Fort Worth International Airport a few families at a time, clutching their papers, benumbed and exhausted. Their journey across the world had taken them through war, genocide, and refugee camps before it ended in Dallas.

For most, the journey began around 1975 (“Year Zero”) when Cambodia fell to the Khmer Rouge and the entire population of ~7 million people was forced into brutal agricultural labor in the countryside. By 1979-80, when the regime fell, around 2 million people had been murdered or starved to death. Many of the survivors fled to Thailand where they were put into primitive refugee camps. From there the lucky ones were sent to America or France beginning in 1980.

They were met at the airport by caseworkers from refugee agencies such as the International Rescue Committee, Catholic Charities, or by church groups. They would be taken to a slum apartment furnished usually with a few mattresses, a small table, two chairs, some pots and pans, dishes and utensils. There would be a 50-pound bag of rice, a chicken, some fish sauce, and

Apartment on Carroll Street

a few other staples. Welcome to America.

When sponsored by a church the circumstances were less dire as there was usually a committee of church members who would help in various ways. Most families came in expecting to go to work within a day or two of arrival. The lucky families would have someone in a job within a few weeks.

In some locales like Long Beach, California and Lowell, Massachusetts refugees were placed on welfare, food stamps, and Medicaid. In Dallas and Houston they received meager refugee assistance support for 6-12 months and then were on their own. Problems related to resource poverty were compounded by the third world rural background of many Cambodians and the myriad problems of genocide survival, grief, and PTSD. The fact that in Cambodia many of the leaders, intellectuals, businessmen, and clergy had been murdered was a problem in terms of community adaptation. Really, Cambodian refugees lived extraordinarily uncertain and stressful lives.

Inside apartment – family living here for several years

A few thousand Cambodians were resettled in the refugee neighborhood in Old East Dallas centered around Fitzhugh, Carroll, Bryan, Annex – an area with low rents and high vacancy rates. Apartment buildings had 20-40 mostly one-bedroom/one bath units less than 300 square feet/unit. Typical living situations would be families of 4-6 people in each apartment. In living rooms and bedrooms there would be mattresses on the floor with curtains around them if for adults; children would share mattresses, there would be a table, an altar of some kind, posters from a popular Cambodian movie. Window air-conditioning units might or might not work. They were hot in summers, cold and drafty in winter. (Placement in distressed urban areas or “hyperghettos” was the norm for Cambodian refugees across America.)

Language was an important issue among Cambodian and other refugees. Often it was children who were best able to speak English and translate for their family. This created stress within families as it placed children in a more powerful position than adults and it called upon children to be involved in adult and sometimes embarrassing or very personal matters. Few health care providers, police departments, or other official organizations had Cambodian language capabilities, so there were real problems in interactions.

War and radical

Dinner

communist rule had shattered many families. In some cases families had been recombined by the Khmer Rouge or by circumstances in the flight from Cambodia or in refugee camps. Many households were headed by widows. All of this created stress and hardship within families and within the community.

Recycling aluminum cans was always a way to make a little money

Infants and small children were cared for within families and if parents were working, children were cared for by older women. Breast-feeding was common and thanks to one dedicated volunteer, many women and infants were enrolled in WIC (Women Infants and Children nutritional program). School-age children were enrolled in area schools. One elementary school in a wealthy neighborhood was able to count Cambodian children toward their required minorities enrollment. In the early years, Cambodian children were seen by teachers as generally quiet and respectful students. There were several missionaries in the community focused on youth and two scouting groups led by volunteers. As time passed, some middle and high school students gravitated toward gang life – refugee children had hard, stressful lives, too.

Women and girls mostly wore colorful flowery sarongs with tops that were sewn by themselves or shirts from the second-hand store. Men wore checked sarongs at home and pants and shirts in public. (Within a few years of arrival community leaders, especially Christian preachers discouraged wearing sarongs as too foreign or something to be ashamed of.) Many older women chewed betelnut; men smoked cigarettes as soon as they could afford them.

At 1604 Annex

People shopped for food at one of several Vietnamese stores on Fitzhugh or Bryan. There was a larger Vietnamese store on Capital near Carroll. Those with transportation would shop at an open-air Saturday market in West Dallas where live chickens and fresh produce could be bought. As soon as possible people who could planted gardens with lemon grass, basil, mint, bitter melons, etc. Meals were taken with families sitting on the floor.

Jobs were difficult for Cambodians to find, even for the more educated. Language barriers, transportation, cultural dissonances, ways of interacting, lack of phones, poor physical and mental health status, and other factors made finding and holding a job challenging. In all cases, pay was poor. Exploitation sometimes occurred such as people working for a few weeks, then being fired with no pay.

Although many people needed healthcare and other assistance, often all they got was tuberculosis screening. Prenatal care was difficult to obtain, family planning was non-existent, sick care was almost impossible to obtain, medications were a mystery to get and understand how to take, and few Cambodians could take off the full day necessary to receive care. Health care providers had little, if any cultural awareness or even awareness of the unique health issues among Cambodians. Volunteers stepped up to fill the gaps as best they could.

The first patient at the East Dallas Health Coalition Clinic – the clinic was started in the Fannin Elementary school nurse’s office

One of the consequences of Buddhist clergy being murdered by the Khmer Rouge was that in many respects Cambodian refugees had few spiritual resources, especially in the early years. Evangelical Christian missionaries, Cambodian and American were quick to step in with answers to fundamental questions like, “Why has this happened?” After a few years a Buddhist temple was established for worship and important ceremonies.

That’s how Leslie and I and others found them in 1981. Struggling. Desperate. And still maintaining integrity and dignity.

Leslie at work in her office, the floor of someone’s apartment