Caregiving Webinar with John Burhoe – Notes

Today, CurePSP ( hosted a wonderful webinar on caregiving with John Burhoe.  The presentation was a personal view of dealing with progressive supranuclear palsy (PSP) through the eyes of a veteran caregiver, John Burhoe.  John and his wife (Mary) Lou were married almost 45 years, “with the last five under the cloud of PSP.” He shared his story today because he wants to help prepare others going down this path.

Here are my notes.



John had two “advantages” not all have:
* ability to generate income while being home 24/7
* he is 6’3″, 225 lbs while Lou was 5’5″, 130 lbs.

The PSP journey began with Lou falling in the bathroom in 2002. They visited an MD at Scripps in San Diego. The MD’s diagnosis was “Parkinson’s Plus.” An MD at Mass General in Boston saw Lou three times; on the third visit, the diagnosis of PSP was given.

“The journey is much like a flight of stairs as opposed to a declining ramp with periods of relative stability punctuated by sudden and permanent drops.”

Example: In January 2007, Lou lost the ability to speak literally overnight. This ability never returned.

Lesson learned: Find multiple sources of support. These may not necessarily be where you would expect them.
* SSI (Sports, Spine & Industrial) is a facility in Greer, SC providing a combo of sports training, workout, and PT. Lou went twice a week. John could also work out at the same time.
* Church.
* Hospice.

Great aids:
* Portable aspirator ($250) – useful for choking spells
* Writing board is a great help in communicating. Also, ask yes/no questions (thumb up/down, or squeeze the finger).

Lesson learned: Educate yourself.
* This website is being revised later this year and will be even better.
* Find other websites for info
* Support groups are a great source of info and comfort. Often caregivers get more out of these groups.

Lesson learned: Maintain the relationship.
* Look for and share the humor, albeit sometimes dark. John told the story of the “toilet tango” – dancing to the bathroom.

Lesson learned: Make sure others know the person behind the mask that you know. Introduce them to that person. NEVER let anyone refer to your loved one in the third person when he or she is sitting right there. (eg, “Does she want this?”) Nothing is more dehumanizing or degrading than that.

Lesson learned: Look out for “compassion stress and fatigue” and do something about it if this occurs.
* Short temper
* Depression
* Feeling sorry for yourself
* Social withdrawal
* Resentment towards your loved one
* Tears

Lesson learned: Take action.
* Ask for help. People want to help but you MUST tell them how.

Lesson learned: Take a “breather” to get away from the situation. And give your loved one a breather from you!
* You will lose your temper and say things you regret. You’re human – forgive yourself. Sounds easy, but it’s not.

Lesson learned: Don’t wait – do it now and for as long as you can. Examples: put a porch on the back of their house. Took car trips. Took airplane trips to visit grandchildren. The airlines are very helpful with wheelchair-bound passengers. Every day up until December 2007, John and Lou were in a car. They went to church up to the week Lou died.

Lesson learned: find a good local neurologist with whom you are both compatible.

Lesson learned: Allow yourself to have diversions.
* Three businesses with partners
* Promoting the concept of hospice
* Building awareness of PSP
* Reaching out to sister organizations for ALS, AD, and PD.

Lesson learned: Don’t feel sorry for yourself. What good will that do?
* Count your blessings and treasure the times you’ve had and still have together. John had a kitchen table filled with pictures of Lou and family and friends. Every time John walked by the table, he’d pause, look, and count his blessings.
* Right now focus on your loved one’s happiness.

Lesson learned: Be willing to fail. Whatever it is, try it. If it doesn’t work, and some won’t, at least you gave it a shot.

Issues you need to decide for yourself:
* whether to stay at home or utilize an extended care facility. This is often decided based on the physical size of the care giver and care recipient.
* whether to insert a feeding tube or not. Thoroughly research this, including having discussions with your MD. He recommended this website for some info on this decision:

Lesson learned: Don’t wait to get hospice involved! Get them involved early! John and Lou had hospice for 18 months.
* visit your local hospice organization and discuss the certification criteria
* major source of information, support, compassion, and experience
* Medicare covers this
* provides medical info, personal care, caregiver support, spiritual support
* you need an MD’s prescription

One day, Lou said: “I want to go home. Are you OK?” She said this after not having spoken for a year. The family gathered. Once the family was gathered, Lou died peacefully. (In 2008.)

John said that he felt relief in Lou’s passing. He pointed out that no one talks about this. Relief is “a natural phenomenon that everyone feels because a great load has been lifted from your shoulders and you now have your life back. No one talks about this but everyone experiences it.” After Lou died, for the first time in five years John had his own life back.

The five-year journey brought John closer to God.

Feelings and memories of his wife Lou are triggered by all sorts of things.

John established the “Mary Lou Burhue Scholarship Fund” to honor his wife and provide assistance to young people who mirror Lou’s core values of dignity, character, grace and humor in the face of adversity. Awards totaling over $20K have been made to 12 students.

John got married again about a year after his wife died. His new wife is Carolyn, Lou’s best friend of over 25 years. John responded to those who wondered about the “quick” re-marriage. John made two points. First, he had been grieving for Lou long before she died.

Second, John provided this quotation: “Your love for one person will never diminish your love for another. Love never divides, it always multiples.” — The late Dr. W.A. Criswell of Dallas

“Life goes on…honor your loved one by participating in it.”

Questions and Answers: (answers are by John Burhoe, unless indicated)

Q: Do PSP patients understand what is happening to them?
A: Yes – for Lou. This is not true for everyone.

A by Janet Edmunson: We need to act as if the loved one hears and understands everything.

Q: Since PSP and CBD are degenerative, what is the point of regular visits to the neurologist?
A: This is a dark view of things – saying “what’s the point?” Never give up. Never stop searching.

Q: Can you talk a little about your experience with sleep patterns and PSP/CBD?
A: John and Lou slept together throughout the disease. Neither John nor Lou had problems sleeping.

A by Janet Edmunson: Her late husband Charles (with pathologically-confirmed CBD; died at age 51) had terrible problems sleeping. Charles woke up hourly and he also moved around in bed a lot. The only medication that allowed him to sleep was Seroquel, an antipsychotic. Janet used TylenolPM for herself. Janet also slept on the floor next to the bed.

Q: Will you elaborate on your use of the portable aspirator?
A: It cost about $250. It took a long time to feed Lou. Liquids were thickened. Lou experienced one or two hour choking spells. These were more episodes of gagging, not coughing. The aspirator could be used to get some of the food out that had lodged in the throat.

Q: If you feel incompatible with your neurologist, what is the best way to find another one?
A: John did fire a neurologist from Duke. He found a local neurologist that both he and Lou liked.

A by Janet Edmunson: Use the PSP Forum to ask if anyone knows a neurologist.

A by Kate DeSantis, CurePSP: People can do a Google search on “movement disorder specialists.” Search on for MDs. Email Kate ([email protected]) for an MD referral. She has a list of MDs associated with the Movement Disorder Society.

A by participant: Referrals to local movement disorder specialists can be obtained through the APDA (American Parkinson Disease Association) Information & Referral Centers,

Q: Does/can hospice involve giving up therapies? PT, OT, speech? And meds?
A: Hospice doesn’t normally cover therapies. They

A by Janet Edmunson: If a therapy involves comfort or safety, hospice should cover it. You might get occupational therapy because they want to make sure the patient is safe in the home. Every hospice is different.

Q: Did Lou take antidepressants or other meds that you found helpful?

Q: What is the best way you found to prevent falls?
A: He’s not a good reference for this question. Lou’s first fall was her last fall. John is large enough that he was always able to prevent her falls.

A by Janet Edmunson: “Impulsivity” happens. Charles would get up on his own, despite being told that this was unsafe.

Q: What were your warning signs that Lou was nearing the end?
A: In Lou’s case, she decided when it was time to throw in the towel and she decided the time of her own death. In the last week, hospice put her on morphine. “People can very much pick the time and place of their death.” Lou “fought the good fight…and finished the course.”

Q: How did you communicate with Lou once she was unable to move her hands well?
A: John and Lou had been married a long time, he usually knew what she wanted. Lou was able to squeeze John’s finger up until the very end.

Q: What is your experience with vision problems?
A: Lou lost the ability to read very early. John and Lou got out a lot and attended many social events.

Q: What do you think is the best way that family members living away from the patient can be of help to the caregiver?
A: Visit, if you can. Sometimes giving money can be helpful. Let the caregiver and patient know that you care and you are there.

Q: A participant stated that a “transfer platter is helpful for moving patients between bed and chair, etc.” It was later described as a 12-14″ disc.
A: Neither John Burhoe nor Janet Edmunson were familiar with a “transfer platter.”

Q: Will you speak to how to handle inappropriate behavior in social situations?
A: Lou never behaved inappropriately. John feels blessed.

A by Janet Edmunson: Charles went through a stage of yelling, which was very uncharacteristic. He sometimes got agitated in public places. Humor might help. Sometimes they would just have to leave the restaurant or public place.

Janet told a story about Charles’s love for frozen yogurt. He would end up with frozen yogurt all over his face and clothes. They would just laugh about it. It was a special treat. So what if she had to wash his clothes after each outing?

Q: How did you explain the disease to your grandchildren?
A: His 5-year-old granddaughter didn’t require an explanation. The granddaughter just gave love to Lou, and Lou gave love back. Kids have wisdom and behavior beyond their years. Even the older grandkids didn’t require an explanation.

Any way to prevent father from getting up?

I received this email today:

“I’m sorry to mail you individually, but I created a topic and couldn’t get a reply from anyone, so I deleted it.

My father was diagnosed in 2002. The disease has progressed fast and led him almost to his final stage now. His situation is:

– Difficulty in swallowing (mom and I are still ignoring the feeding tube option, and feed him well in puree form..)
– Not even his one word is now understandable. (best way we have found is that he tries to write letter-by-letter on his palm with his finger. After first few letters, we guess what he tries to tell.. Funny, but works..)
– Breathing seems to be very difficult nowadays, mostly disordered.. He makes a sound like he’s whimpering. But when I ask him if he has a pain somewhere, he says no..

At this stage our biggest problem is that he wants to move very often. He can’t sit down even for a minute, and tries to get up (can’t) and go somewhere. Almost obsessed with some issues (like he wants to go see a friend etc..) The fact that he wants to get up very often is a very high risk for him, as he can’t stand or walk without help, and falls. We are walking with him most of the time, but sometimes it is extremely exhausting to follow him. I would be grateful if you have any ideas or solutions that could help.”

Here’s my reply:

I remember seeing your first post and I’m sorry neither I nor anyone else responded.

I think you only have one choice — be with him 7×24 and assist him when he does want to walk.

You can treat the obsessive impulses with an antidepressant or other medication. This may lead to drowsiness. You might give that route a try, in consultation of course with the MD, and see if that improves your father’s restlessness (akithisia) and obsessive thoughts.

Is there any way you could tire your father out through exercise? In the US, they have pedalers that can be placed on the floor. Sounds like he could also get on an exercise bike.

Or would taking your father outside in a wheelchair for some fresh air resolve his need to move around?

I wouldn’t consider your father to be in the final stages.


“Light in the Shadows: Meditations While Living with a Life-Threatening Illness”

Someone on one of the MSA-related online support groups today recommended this book:

Light in the Shadows:  Meditations While Living with a Life-Threatening Illness
by Hank Dunn
Second Edition, 2005

The author says “living with a life-threatening illness is more than just medical treatment decisions, so I felt this book was necessary to expand on the emotional and spiritual struggles brought on by disease.”

You can order the booklet ($7) online.  At the present time, the PDF of the entire 80-page is available at no charge for download.  See:

There are four parts to this book:
Part One — Living Each Day Fully
Part Two — Walking the Valley of the Shadow of Death
Part Three — The Heart and Soul of Medical Decisions
Part Four — The Journey to Letting Be

I’ve copied parts of the booklet’s introduction below.



Excerpts from
Light in the Shadows:  Meditations While Living with a Life-Threatening Illness
by Hank Dunn

In my more than two decades of work with those living with a life-threatening illness I have learned some valuable lessons about living in the midst of difficult situations. I have served as a chaplain in a nursing home, with a hospice program and in as hospital as well as volunteer in a home for formerly homeless men with AIDS. As difficult as it is, what seems most important is to live each day as fully as possible. I have seen people live a life of meaning and purpose even while severely disabled and seriously ill.
In these few pages I have gathered the most helpful insights these patients have taught me. This book is about finding hope in hopeless situations; being grateful in the midst of great losses; experiencing a connection to things eternal; living a meaningful life while considering the possibility of death; and getting to the root issues in medical treatment decisions.

In my first book, ‘Hard Choices for Loving People,’ I outlined some of the medical treatment decisions we might face. But living with a life-threatening illness is more than just medical treatment decisions, so I felt this book was necessary to expand on the emotional and spiritual struggles brought on by disease.  …

Each of these selections is written as a meditation—some thoughts to be pondered. They are meant to be companions for those with a life-threatening illness and their families. At the end of each piece is a thought, indicated by a check mark, to carry with you through the day. My hope is that these words will help you live each day fully and that you can go into the future with courage and peace.


Nitrates – Possible Environmental Cause of AD, PD, etc

Here’s an article from yesterday’s MedicalNewsToday website about an association between nitrates (found in fertilizers) and Alzheimer’s Disease and Parkinson’s Disease.

Researchers Find Possible Environmental Causes For Alzheimer’s, Diabetes
07 Jul 2009

A new study by researchers at Rhode Island Hospital have found a substantial link between increased levels of nitrates in our environment and food, with increased deaths from diseases, including Alzheimer’s, diabetes mellitus and Parkinson’s. The study was published in the Journal of Alzheimer’s Disease (Volume 17:3 July 2009).

Led by Suzanne de la Monte, MD, MPH, of Rhode Island Hospital, researchers studied the trends in mortality rates due to diseases that are associated with aging, such as diabetes, Alzheimer’s, Parkinson’s, diabetes and cerebrovascular disease, as well as HIV. They found strong parallels between age adjusted increases in death rate from Alzheimer’s, Parkinson’s, and diabetes and the progressive increases in human exposure to nitrates, nitrites and nitrosamines through processed and preserved foods as well as fertilizers. Other diseases including HIV-AIDS, cerebrovascular disease, and leukemia did not exhibit those trends. De la Monte and the authors propose that the increase in exposure plays a critical role in the cause, development and effects of the pandemic of these insulin-resistant diseases.

De la Monte, who is also a professor of pathology and lab medicine at The Warren Alpert Medical School of Brown University, says, “We have become a ‘nitrosamine generation.’ In essence, we have moved to a diet that is rich in amines and nitrates, which lead to increased nitrosamine production. We receive increased exposure through the abundant use of nitrate-containing fertilizers for agriculture.” She continues, “Not only do we consume them in processed foods, but they get into our food supply by leeching from the soil and contaminating water supplies used for crop irrigation, food processing and drinking.”

Nitrites and nitrates belong to a class of chemical compounds that have been found to be harmful to humans and animals. More than 90 percent of these compounds that have been tested have been determined to be carcinogenic in various organs. They are found in many food products, including fried bacon, cured meats and cheese products as well as beer and water. Exposure also occurs through manufacturing and processing of rubber and latex products, as well as fertilizers, pesticides and cosmetics.

Nitrosamines are formed by a chemical reaction between nitrites or other proteins. Sodium nitrite is deliberately added to meat and fish to prevent toxin production; it is also used to preserve, color and flavor meats. Ground beef, cured meats and bacon in particular contain abundant amounts of amines due to their high protein content. Because of the significant levels of added nitrates and nitrites, nitrosamines are nearly always detectable in these foods. Nitrosamines are also easily generated under strong acid conditions, such as in the stomach, or at high temperatures associated with frying or flame broiling. Reducing sodium nitrite content reduces nitrosamine formation in foods.

Nitrosamines basically become highly reactive at the cellular level, which then alters gene expression and causes DNA damage. The researchers note that the role of nitrosamines has been well-studied, and their role as a carcinogen has been fully documented. The investigators propose that the cellular alterations that occur as a result of nitrosamine exposure are fundamentally similar to those that occur with aging, as well as Alzheimer’s, Parkinson’s and Type 2 diabetes mellitus.

De la Monte comments, “All of these diseases are associated with increased insulin resistance and DNA damage. Their prevalence rates have all increased radically over the past several decades and show no sign of plateau. Because there has been a relatively short time interval associated with the dramatic shift in disease incidence and prevalence rates, we believe this is due to exposure-related rather than genetic etiologies.”

The researchers recognize that an increase in death rates is anticipated in higher age groups. Yet when the researchers compared mortality from Parkinson’s and Alzheimer’s disease among 75 to 84 year olds from 1968 to 2005, the death rates increased much more dramatically than for cerebrovascular and cardiovascular disease, which are also aging-associated. For example, in Alzheimer’s patients, the death rate increased 150-fold, from 0 deaths to more than 150 deaths per 100,000. Parkinson’s disease death rates also increased across all age groups. However, mortality rates from cerebrovascular disease in the same age group declined, even though this is a disease associated with aging as well.

De la Monte notes, “Because of the similar trending in nearly all age groups within each disease category, this indicates that these overall trends are not due to an aging population. This relatively short time interval for such dramatic increases in death rates associated with these diseases is more consistent with exposure-related causes rather than genetic changes.” She also comments, “Moreover, the strikingly higher and climbing mortality rates in older age brackets suggest that aging and/or longer durations of exposure have greater impacts on progression and severity of these diseases.”

The researchers graphed and analyzed mortality rates, and compared them with increasing age for each disease. They then studied United States population growth, annual use and consumption of nitrite-containing fertilizers, annual sales at popular fast food chains, and sales for a major meat processing company, as well as consumption of grain and consumption of watermelon and cantaloupe (the melons were used as a control since they are not typically associated with nitrate or nitrite exposure).

The findings indicate that while nitrogen-containing fertilizer consumption increased by 230 percent between 1955 and 2005, its usage doubled between 1960 and 1980, which just precedes the insulin-resistant epidemics the researchers found. They also found that sales from the fast food chain and the meat processing company increased more than 8-fold from 1970 to 2005, and grain consumption increased 5-fold.

The authors state that the time course of the increased prevalence rates of Alzheimer’s, Parkinson’s and diabetes cannot be explained on the basis of gene mutations. They instead mirror the classical trends of exposure-related disease. Because nitrosamines produce biochemical changes within cells and tissues, it is conceivable that chronic exposure to low levels of nitrites and nitrosamines through processed foods, water and fertilizers is responsible for the current epidemics of these diseases and the increasing mortality rates associated with them.

De la Monte states, “If this hypothesis is correct, potential solutions include eliminating the use of nitrites and nitrates in food processing, preservation and agriculture; taking steps to prevent the formation of nitrosamines and employing safe and effective measures to detoxify food and water before human consumption.”

Other researchers involved in the study with de la Monte include Alexander Neusner, Jennifer Chu and Margot Lawton, from the departments of pathology, neurology and medicine at Rhode Island Hospital and The Warren Alpert Medical School of Brown University.

The study was funded through grants from the National Institutes of Health. Two subsequent papers have been accepted for publication in the near future that demonstrate experimentally that low levels of nitrosamine exposure cause neurodegeneration, NASH and diabetes.

De la Monte, Suzanne M., Alexander Neusner, Jennifer Chu and Margot Lawton. “Epidemilogical Trends Strongly Suggest Exposures as Etiologic Agents in the Pathogenesis of Sporadic Alzheimer’s Disease, Diabetes Mellitus, and Non-Alcoholic Steatohepatitis.” Journal of Alzheimer’s Disease, 17:3 (July 2009) pp 519-529.

Nancy Cawley Jean