November 30, 2015

Giving Thanks for My Five F's: Number One – My Families

On Thanksgiving Day, I went through the usual drill of thinking about the major things I'm thankful for. Then I began comparing each of these things as they are now with how they were in my earlier years. This exercise made me even more grateful for where I am today.

I'm sure my kids and close friends shuddered when they saw the reference to "My Five F's" in the title and thought "Jeez, what crazy thing is he going to say this time?" But it just so happens that the major factors that contribute to the quality of my life can be labeled with an F word:
  1. My families.
  2. My friends.
  3. My fun.
  4. My finances.
  5. My final days.
So let's start with my families and compare today with my early days.

My Family of Origin
Last year I posted  a family history  that was much too long. Now, I'll just make some some brief comments about family photos. Every picture of my mother shows the same blank, unsmiling look you see her. And I'm doing what I learned to do then -- and continued doing with most of my problems until age 50 -- looking away and pretending to be happy.


Here I am with my sister Carol and my brother Rog. Carol and I shared the same inner turmoil. She was an alcoholic and a lesbian. I was an alcoholic and a gay man. We were both deep into denial. Carol took her own life in 1971 at age 36.

Rog was -- and remains -- an incredibly normal, happy man surrounded by good friends who love him.


My dad, like Rog, was a kind and decent man. But unlike Roger, he was a lonely man without close friends. Rog was married to the wonderful, funny, feisty Gail. Dad was married to the elephant in the room.

I

The five of us lived together as five separate silos. Like too many families, we could talk only about "news, weather and sports." We never shared feelings. The elephant in the room was never discussed.

November 20, 2015

Tasigna: The First Drug to Reverse Symptoms of Parkinson's Disease?

Image result for nilotinib

At their best, drugs and treatments for Parkinson's disease (PD) only slow the progression of the disease. But now a small clinical trial has shown that a cancer drug already approved by the FDA may have the potential to reverse PD symptoms, both motor and non-motor.

The new hope was announced at the recent meeting of the Society for Neuroscience by researchers at the Georgetown University Medical Center. Using a drug developed for leukemia patients, the scientists cut the dose, and gave it to 12 patients who had either advanced PD with dementia or the related Lewy body dementia.

See yesterday's post for a discussion of these two types of dementia.

The drug is nilotinib, marketed as Tasigna by Novartis. It works to stimulate the cellular clearance system, or "garbage disposal." In leukemia, it helps clear out cancer cells. In Parkinson's, the researchers thought it might also work in smaller doses to tame the neurotoxic proteins found in patients with Parkinson's, Alzheimer's, and related illnesses.

A Very Unexpected Surprise
The researchers found that one small dose a day -- instead of the two heftier doses given cancer patients -- would do the job.

Initially, the goal of this study was to check for safety and rule out the danger of serious side effects from the drug. For its cancer application, nilotinib wasn’t designed to enter the brain. This new study aimed to see if the drug could cross the blood-brain barrier in amounts that were both safe and effective.

The researchers soon realized that this experimental treatment was yielding unexpected -- and very positive -- results.

Dr. Fernando Pagan, director of the Movement Disorders Program at Georgetown, explained his team’s surprise: study subjects began displaying significant improvements in both cognitive and motor functions… a result unheard of in advanced cases of Parkinson's Typically, treatments to improve one set of those symptoms only exacerbated the other.

November 19, 2015

Parkinson's Disease Dementia and Lewy Body Dementia

Let's start by taking a look at this video., which opens with an interview with Susan Schneider, the widow of Robin Williams, and then moves on to an excellent interview with Dr. Rahul Jandial. In this relatively short  video clip, Dr.Jandial provides one of the best and most helpful explanations of dementia, Alzheimer's and Lewy body dementia that I've come across.

Robin William's death put Lewy body dementia (LBD) in the spotlight. Schneider recently said the coroner found signs of LBD in Robin's brain. She also said that the doctors who analyzed the report told her that Robin’s was one of the most severe cases of this disease they had seen.

Williams took his own life in August, 2014. This past month, Schneider has participated in a series of media interviews to raise awareness about this relatively unknown form of dementia.

LBD is the second most common neurological dementia after Alzheimer's. Even so, most people have never heard of it. According to Dr. James Galvin, neurology professor at Florida Atlantic University, "It is the most common disease you have never heard of."

Now that I've l learned more about LBD, I have a better understanding of my own Parkinson's disease (PD)… and that of others. For example, I now recognize that my PD support group actually has two sub-groups: those members with LBD and the rest of us.

I've attended meetings of this support group for six years, and I've always been puzzled that several members seemed to have symptoms that are very different from the symptoms the rest of us exhibit. Those in this small group are more troubled by falls. They joke about their hallucinations. I now understand that they probably have LBD.

I don't appear to have the major symptoms that signal Lewy body dementia. But that doesn't mean I don't have to worry about dementia. Those of us with PD can have either Lewy body dementia or Parkinson's disease dementia.

Parkinson's and Dementia
Two forms of dementia are associated with Parkinson's:
  • Parkinson's disease dementia is diagnosed when someone already has the movement (motor) symptoms of Parkinson's and has had them for some time before showing signs of dementia.
  • Lewy body dementia is diagnosed when someone has the symptoms of dementia either before or at the same time they develop Parkinson's. But in some cases of LBD, no motor symptoms may appear at all.
Parkinson's Disease Dementia
Symptoms can include forgetfulness, slow thought processes, and difficulty concentrating. These symptoms can make finding words and names – and following conversations – difficult.

November 18, 2015

Parkinson's Disease and Dementia: An Overview

My effort to recap the connection between Parkinson’s disease (PD) and dementia -- including Alzheimer’s disease (AD) -- encountered one main complication: different writers define important key terms in different, sometimes inaccurate, ways. I’ve done my best here to untangle those complications.  

Mild Cognitive Impairment (MCI) 
Mild cognitive deficits that do not impair one's ability to carry out routine daily activities have been labeled "mild cognitive impairment." Estimates on the prevalence of cognitive changes in people with Parkinson's disease (PD) vary greatly, mainly because reviewers have used different means to identify and define impairments. They’ve also selected study participants at different stages of the disease.

Estimates suggests that one quarter to one third of all people with PD will suffer some mild cognitive impairment. Attention, working memory, executive function, and visuospatial function are the most frequently affected cognitive domains for those of us with the disease.

Doctors used to believe that cognitive changes did not develop until mid- to late-stage Parkinson's, but recent research suggests that mild changes may be present as early as the time of diagnosis.

recent study reported that nearly half of all PD patients develop cognitive impairment within about a decade, and progress rapidly to dementia.

Dementia
Dementia isn’t a specific disease; instead, it’s a general term for a decline in mental ability severe enough to interfere with daily life. It indicates problems with brain functions like memory, judgment or language. It can also make some regular daily activities – like paying bills or driving – impossible.

Although memory loss generally occurs in dementia, memory loss alone doesn't mean you have dementia. To a certain extent, memory loss is a normal part of aging.

November 17, 2015

Microbubbles and Ultrasound: An Innovative, Non-Invasive Technique to Penetrate the Blood-Brain Barrier and Treat Brain Tumors, Alzheimer’s, and Parkinson’s.

Last week, a headline on the site Independent.ie caught my attention: “New hope for Alzheimer's, Parkinson's and brain cancer patients as scientists break blood-brain barrier.”

This new hope was reported by neuroscientists at Sunnybrook Health Sciences Centre in Toronto, Canada, where they have developed an innovative, non-invasive technique to deliver medication more effectively to previously “unreachable” parts of the brain. How? By managing to more successfully cross the “blood-brain barrier” (BBB).

Occasional visitors to this blog will have heard me talk about the BBB before. It’s the ingenious, protective “blockade” designed to prevent harmful or toxic substances from entering the brain via the bloodstream. It’s there for an excellent reason: the BBB keeps us safe.

But the BBB also presents a formidable obstacle to introducing potentially beneficial chemical therapies to the brain. I’ve mentioned this BBB “complication” in reference to prescription drugs and also to dietary supplements, like the curcumin I take.

In the case of curcumin, manufacturers found that the introduction of pepperine – the active ingredient in black pepper – enhanced their curcumin product’s “bioavailabilty,” i.e., its ability to successfully cross the BBB and “work its magic.”

The most common medication for Parkinson's disease is carbidopa levodopa. The levodopa is the key ingredient because it helps replace the dopamine destroyed by Parkinson's. Carbidopa enables more levodopa to cross the BBB, and reduces some of levodopa's side effects, like nausea.

What Exactly IS the BBB?
Before we take a look at this new technique, it might help to understand more clearly just what the BBB really is. Here’s the way the November 8, 2015 press release from Sunnybrook Health Sciences Centre described it:
Each person has a protective blood barrier lining the blood vessels in the brain to restrict the passage of large toxic substances from the bloodstream into the brain. 
You can imagine the barrier acting like saran wrap around the small blood vessels. In most areas of the body, there is no saran wrap and whatever is in the bloodstream can get into the various tissues of the body, such as muscle, etc. 
In the brain, all of the blood vessels have this “saran wrap” around them that only allows very select molecules to get through.
That “saran wrap” does an excellent job blocking potentially valuable substances which are created to treat brain diseases like tumors, Alzheimer’s, and Parkinson’s. For example, estimates suggest that certain chemotherapies designed to treat brain tumors have only a 20% chance of reaching those parts of the brain they need to reach… all because of the properly operating BBB.

November 15, 2015

Paris 11/14/2015 -- New York 9/11/2001



I searched for this video after getting this poignant email from by pal Terry:
I just wanted to tell you how events tonight brought back vivid memories of our trip to New York City in September 2001, when we walked around Wall Street and downtown near to the World Trade Center and saw all the names and posters and groups of people searching not just for those lost but for some comradeship, togetherness, human support. And there were you and I in the midst of it, trying to sense something out of an event that had no real sense to it at all
Prav and I and some friends went to La Boheme tonight at English National Opera at the wonderful Coliseum theatre just above Trafalgar Square. As we crossed the square the National Gallery was lit in Red White and Blue of the French tricolour, as were the fountains in the square; and just before the opera began the full orchestra and chorus struck up a rousing and profoundly moving performance of the Marseillaise, with the words in French above us in surtitles so we could all join in at the top of our voices and emotions.
It was terribly moving and marvelously unifying. And it took me back 14 years to our time in New York City. It was also ironic in that the ENO perform opera always in English. I had never before seen the words in the surtitles in a foreign language.
Here's  the concluding stanzas of La Marseillaise:
Children, let Honour and Fatherland
be the object of all our wishes!
Let us always have souls nourished
With fires that might inspire both
Let us be united! Anything is possible;
Our vile enemies will fall,
Then the French will cease
To sing this fierce refrain:

To arms, citizens,
Form your battalions,
Let's march, let's march!
Let the impure blood
Water our furrows

November 12, 2015

Happy Tihar




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Last night we had a nice just-family celebration of Tihar at home. Last year, we celebrated with Bhawana's parents who were visiting:

November 5, 2015

Yousef Bashir: A New Friend with an Interesting History and Point of View

With each passing year, family and friends become increasingly valuable to me. I'm very fortunate with both.

What I particularly enjoy about my friends is the diversity -- young and old, gay and straight, single and partnered, many different nationalities. The gay and AA communities I belatedly joined in my 1977-78 turnaround have blessed me with many good friends. Another gold mine for friendships was BNA, where I worked for 40 years. BNA specialized in hiring people who were smart, talented and quirky. My kind of friends. D.C.'s Palisades neighborhood -- where I've lived for the past 65 years -- has generated many friendships.

And that's where I met my new pal Yousef Bashir. He lives on Sherier Place, the street where we had our first house.

Yousef was born in the Gaza Strip. A few months ago, he got his master's degree from Brandeis University. What happened in between those two events is a fascinating, moving and inspiring story, particularly an event that took place in 2004.

But first some background information


Yousef's Family History
Yousef is from Gaza, specifically Deir el-Ralah. Unlike many residents of Gaza today who are newcomers, Yousef's family has been in Gaza for generations. The family owns a three-story house. Behind the house is farm land where for years his family has raised fruits and vegetables for the market.

His father was headmaster in a high school where he also taught English. He had a special fondness for Victorian literature.

Yousef, his parents, and four siblings lived in the house, which was next to the Israeli settlement of Kfar Darom which, in turn, was next to a military base. In 2000. the Israeli Army seized the house and used it as a sentry post. Other houses in the neighborhood had been destroyed after the army ordered the residents out. Yousef's father refused to evacuate his family.

In a strange compromise, Israeli soldiers took over the house except for the living room, where the seven-member Bashir family lived from 2000 to 2005. They were permitted to buy groceries once a week. They had to ask permission to go to the bathroom, had to be accompanied there by an escort, and were told not to close the bathroom door.

Improved Posture for Better Health


Reviewing the archives, I found an article I’d saved from NextAvenue.org titled “Posture Tips to Help You Feel Younger: Pay attention to your body's alignment to avoid serious health problems.”

In the past several weeks, the subject of posture has taken on a new significance for me since I’ve been experimenting with John Pepper’s “conscious walking.” Posture, of course, is a key element in Pepper’s recommendations. With any luck, maybe some measure of improved posture will result for me… if I can just create the time to get outside during these fine Indian summers days in Washington.

Why Posture Matters
According to Mary Ann Wilmarth, Chief of Physical Therapy for Harvard University Health Services, poor posture can create problems and exacerbate a variety of existing physical problems, including:
  • Osteoarthritis or compression issues, putting you at increased risk of fracture
  • Headaches
  • Diminished breathing ability
  • Back and neck pain
  • Fatigue
  • Heightened risk of athletic injury
What Does It Mean to “Stand Up Straight”?
There’s a common perception that good posture means “chest out, shoulders and head back.” The article is quick to correct that misimpression.

Good posture means that our three “postural curves” are balanced and in proper alignment, both front to back and side to side. What are those “curves”?
  1. cervical/neck
  2. thoracic/ribs
  3. lumbar/low back/sacrum into the coccyx
Harvard’s Wilmarth explained it this way: “If you look from the side, if your ear, shoulder, hip, knee and ankle are in a pretty straight line, give or take, then your curves are most likely in the right positions.”

November 4, 2015

The Two Most Important Dates for My Well-being:10/28/1977 (Coming Out) and 3/27/1978 (Getting Sober)

I'm glad recent events took me back to those life-changing months from the fall of 1977 to the spring of 1978. I get so caught up these days dealing with Parkinson's and aging that I don't spend enough time reflecting on the past.

Those six months included the two most positive actions I've ever taken for my well-being:

  1. Being open about my sexual orientation, which started by coming out to my family on October 28, 1977.
  2. Finally overcoming years of denial and recognizing that I am an alcoholic, a process which began by attending my first closed AA meeting on March 27, 1978.

But something very sad happened during those months, too. My wife Diana learned she had throat cancer in late November, 1977. She was in and out of Georgetown Hospital (more in than out during the last months) and she died there May 23, 1978.

As I noted last week in a post about my "coming out," Diana and I had agreed on a separation. She continued to live in our house, and I rented an apartment nearby. We reconciled after her cancer diagnosis, although I continued to finish out the year's lease on the apartment.

Ann was completing her senior year in high school. She lived in the house with her mother during the months when Diana was in and out of the hospital. My son Todd was already living on his own.

After Diana's death, Ann remained at the house for the next three months until she left for her freshman year at the Medill School of Journalism at Northwestern University. I continued living at the apartment but spent lots of weekend time back at the house. This living arrangement troubled some close family friends, but Ann and I agreed it worked for us.

As you might imagine, this time was tumultuous for everyone in the family. We all weathered the storm and have strong, loving relationships today.

November 3, 2015

Two Recent Events Trigger Memories of My Turnaround Six Months, 1977-78 (continued)

Event No. 2: The Palisades House Tour

My daughter and I took the Palisades House Tour a few weeks ago. I'm a member of the Palisades Village, which sponsors the event.

Daughter Ann and I agreed that the tour highlight was this Japanese-style house:


Many of us longtime Palisades residents refer to this house as the "McGovern House." I knew that the house had been built by Chief Judge David Bazelon of the U.S. Court of Appeals for DC. I didn't know until I read the tour guidebook that Judge Bazelon and his wife chose the Palisades because other local neighborhoods still maintained restrictive covenants that prohibited land sales to blacks and Jews.

Terry McGovern and Me
In 1968, the Bazelons sold the house to their friend George McGovern, then a young senator from South Dakota. The guidebook doesn't mention when the McGovern's sold the house. But I know it was after 1980. ?  I got sober in March, 1978 and began attending meetings of Alcoholics Anonymous almost every evening, In late 1978 or early 1979,  I became friends with Terry (Theresa) McGovern, the senator's daughter. She attended some of the same neighborhood AA meetings I did. She had a few dates with a young recovering alcoholic who was staying at my house at the time.

I'm not violating AA's anonymity precept by disclosing these details. Senator McGovern had already written a heartbreaking book, Terry, with the subtitle "My Daughter's Life-and–Death Struggle with Alcoholism." This photo gives you a sense of the Senator's love for Terry:

Teresa Jane Terry McGovern

Terry was intelligent, funny, generous, charismatic, tender. She also struggled with depression and alcoholism all her adult life.
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