March 25, 2011

Highlights of March Postings

 Here's  are some highlights of the March 2011 postings that follow:
  • Some ramblings from me about staying active by being willing to go out alone.
  • A terrific guest posting from my pal Loene about her cancer support group.
  •  An inspiring video posting by my new online friend Margie on her experiences thus far while in a clinical trial on using her own stem cells to treat her Parkinson's
  • A very hopeful report on what neuroscientists at Duke University are doing  in brain-computer-motion experiments that could lead to dramatic break throughs in treating Parkinson's and other movement disorders. Check out the video of the rhesus monkey operating a robotic arm just by thinking about the movements!!
Please feel free to comment on any of these posts to get a discussion going.

Coming attractions: I plan to take a look at the ever-scary issue of dementia next week.

Keeping active: Willingness to go it alone

I've had a great couple of weeks, partly because of the signs of spring ready to be sprung.  But also because I've seen some terrific theatre.  Washington's Arena Stage is having an Edward Albee Festival and I've seen two of the major productions -- Who's Afraid of Virginia Wolfe and Home at the Zoo (Albee's recent two-act adaptation of the one-act Zoo Story). I also saw  Aaron Posner's The Chosen, which was produced by Theatre J, Washington's Jewish theatre, but staged at Arena.  

I thoroughly enjoyed all three productions.  But I probably would not have seen them had I not gotten over my former rejection of any thought of going to a theater or movie by myself.   I used to think that if I did that others who saw me there would think, "Gee, that poor guy doesn't have any friends."  That was back in the days when I was hyper concerned about what others thought of me.

My wife died and my kids left home over 30 years ago.  Since then,  I've been living on my own.  Fortunately at about the same time, I came to terms with both my alcoholism and my sexual orientation; as a consequence, I acquired  a strong support network of good friends from both communities.

But it still took me several years to be comfortable with showing up alone at public places like the theater, movies, art galleries, etc.  I was helped in getting over this hurdle by the example set by my long-time friend Lili. She is 10 years older than me and has always been my role model on dealing with life in general and aging in particular. She is a vibrant person who has always attracted a large group of friends.  Yet she often goes to movies and the theater by herself..   This is hard enough for anyone to do but it's particularly difficult and unusual for a woman, regadless of age.  But this 92-year-old woman still does it.

When I asked her for the secret of how she's handled aging with such vitality, she replied that her maxim was to get out and do something every single day. If that means doing it alone, so be it.

So, thanks to Lili, I've seen great theater the past two weeks.


Cancer survivors "living beyond limits"

Following is a guest posting by my good pal Loene on how she and others stay positive while fighting cancer. It’s another example of the resiliency of the human spirit.

John, I'm remembering what you said in an earlier posting about people meeting disruptive challenges with courage and, more often than not, a smile on their faces. How we “regular folk” arrive at such a positive place is one of the questions I'm exploring in my memoir, which focuses on the last five years, which have been full of cancer diagnoses and treatment. I've been asking the same question of participants in my “Living Beyond Limits” support group for women with recurrent and metastatic cancer. I’m amazed at how they maintain such positive attitudes when many of them have been fighting this disease for seven, ten, and even more years.

I was stunned when two of them said that the cancer itself is what makes them positive. They said it freed them from duties and obligations that used to weigh on them. If they don't want to do something these days, they simply say no. Instead, they feel able to do what appeals to them in the moment, even if that's simply watching TV or reading a novel. They experience no guilt. They have stopped listening to inner censors. They don’t need to do good works or keep a neat house or do anything else they don’t want to do. The point is to enjoy the lives they have now, in the best way that joy comes to them. For some, that includes an opportunity for the first time to make art or write or otherwise be creative.

I know this may be more of a female than a male thing, but I was struck by the freedom these women now feel to be themselves. They no longer have to try to live up to someone else's idea of whom they should be. This freedom makes it possible for them to enjoy every day they have, doing what most makes them feel good, and so they are able to be positive in the face of diagnoses that would otherwise seem likely to bring on depression and thoughts of suicide. We meet for 90 minutes a week, which usually extends another 15-20 minutes because there’s so much to say to each other, and there's a lot of laughter as well as information sharing and advocacy.

Women in my cancer support group have learned to live one day at a time. They may become anxious when another test is due or an old chemo agent loses its efficacy, but by and large they don't spend their days worrying about tomorrow. Rather, they've learned to live in the present and enjoy everything that makes their lives worth living today.

March 21, 2011

An inspiring report from a Parkinson's activist on her clinical trial involving stem cell research

Here's a video made by a woman who is a world-class example of sharing one's "experience, strength and hope" in an effort to help others.  I first came to know Margie as one of the moderators of my favorite Yahoo group on Parkinson's -- People Living With Parkinson's (  She has backed off from this while she focuses on the clinical trial she's now undergoing. She's embargoed from disclosing details of  the experimental treatment pending the outcome of the trial, but it apparently involves the use of her own stem cells.

This video speaks for itself in showing what a remarkable woman she is.  Our hopes and prayers are with her.

Fascinating report on how our brains could be reprogrammed to remedy Parkinson's and other motor difficulties

A pal in my Parkinson's support group alerted me to a fascinating interview conducted last week by Diane Rehm's on her National Public Radio show with a neuroscientist, Miguel Nicolelis, who heads Duke University's Center for Neuroengineering. Dr. Nicolelis has, NPR says, "uncovered a new and controversial method for capturing brain function. It is paving the way for a cure for Parkinson’s disease, new ways of treating paralysis, and using brain waves to control everything from transportation to manufacturing."

He has just published a book,  Beyond Boundaries: The New Neuroscience of Connecting Brains with Machines—and How It Will Change Our Lives, which is what prompted the interview. In the research being done at Duke, brain signals are coded and recorded on a computer and are then transmitted to operate robotic devices (my layman's take on the study).  So far the research has involved mice and rhesus monkeys.  But human trials may start as early as next year.

The initial focus is on helping people with Parkinson’s movement disorders but the researchers also see lots of potential in other arenas, such as the possibility of creating a prosthetic body suit that a quadriplegic could wear and, using just his own thoughts, get to walk.

The Duke researchers knew from earlier neuroscientific studies that when before a body movement occurs,  there is a half-second or so window in the brain where it stores the information needed to initiate that movement. Here's how Dr. Nicolelis explains the Duke research:

"The brain is about the future. It plans the future of our motion and during that window, half a second or so, we discovered in the last 10 years that we could record this electrical signals that encode a motor behavior, decode this message, translate this message into digital commands and send these digital commands to a robotic arm, a robotic leg, virtual body or a computation or two so that that subject, a monkey in this case, could control just by thinking the movements of these devices, these artificial devices. So basically, the monkey could enact its voluntary motor will just by thinking."

Here's a video clip of a monkey on a tread mill sending signals to  a walking robot:

But here's the one that is the most intriguing.  It shows Aurora, the rhesus monkey, using a control stick to move a cursor to get a fruit juice reward while her mind/machine coding simultaneously moves a robotic arm in another room, and THEN, with the control stick removed, Aurora just thinks about moving the cursor and the robotic arm goes through the motions:

Aurora performing the task during hand control. from Ilsa Brink on Vimeo.

Aurora performing the task during brain control. from Ilsa Brink on Vimeo.

Here's the transcript of the interview:

March 17, 2011

I'm back and hopefully wiser about dosage of 5-HTP

I haven't posted for the past month while I tried to figure out what was causing the blood pressure spiking that had me in the hospital emergency room twice.  In my last post, written after the first visit to the ER, I speculated that the incident was caused by overdoing it in working on this blog.  Wrong!

After the ER visit, I began monitoring my blood pressure on a regular basis. (I have an Omnon home blood pressure monitor.) I found it was spiking and then subsiding throughout the day with no clear pattern as to when the spikes would occur. I tested out a theory that, since the  ER incident coincided with opening a new bottle of my Sinemet generic, a contaminated batch of the med might be causing the problem.  So I began splitting my Extended Release pills and using half of each pill for my regular doses.  Wrong again.

Meanwhile, my daughter who had always been dubious about my use of 5-HTP was insisting that I look at that as the possible culprit.  I was resistant to that idea since I was enjoying the highs I was getting from 5-HTP but I did reduce my bedtime dosage to 50 mg  rather than 100 (while still taking another 50 mg with the Sinemet generic at 11a.m.)

After a few days on this regimen, I went back to the 100 mg at bedtime.  Three days later (March 1), I got up at 4 a.m. for my  bathroom visit and my usual meditation.  I found I was back to the having the feelings of euphoria combined with a bombardment of new ideas that I'd often experienced with 5-HTP.  I was feeling so good that I decided to check my blood pressure. I was surprised to find that the systolic number was 180.  I continued to monitor the bp and when it got to 205/101, I once again called 911. When the emergency crew arrived they got similar readings.

At the hospital, they decided against doing any tests since the appropriate tests already had been done in my first visit two weeks earlier.  The high bp readings began to subside.

The ER doctor was very reassuring about the spikes in blood pressure.  She said that when stressed her systolic reading sometimes jumped to nearly 200.   Here's the advice they gave me in the discharge papers:


Given the fairly clear connection between extra dosage of 5-HTP and this incident, I very belatedly took a look at the medications I was taking.  I'm embarrassed to admit that I somehow had been conned into ordering online and taking a weight-loss pill.  I should know better than to fool around with this junk, but I did.  Looking at the label, I found that  it contained, among many other things, 5-HTP with the amount not listed.  This could have contributed to the overdose of 5-HTP.

Serotonin  syndrome is recognized as a possible side effect of a build-up too much serotonin in the body.  High blood pressure is listed as one of the possible results of serotonin syndrome.  See

Given all of this, I cut back to just taking 50 mg of 5-HTP at bedtime. After two weeks on this regimen, the blood pressure spikes subsided.  I'm having no trouble sleeping, in fact I often log in nearly 8 hours contrasted with the more common 7 hours when taking the higher doses.  Go figure!  And my daytime mood is fine.  But, given my addictive tendencies, I miss the euphoria and idea-bombardment that I got from the higher intake.:-)

This experience is yet another reminder that  individual reactions to Parkinson's and to medications are very idiosyncratic. I know many people, particularly those who take 5-HTP for weight control and other issues, often take several hundred milligrams of 5-HTP a day without serious side effects. But I'm different.  Age no doubt is a factor in how one reacts to most medications.  I've found that in my 70's and now 80's I'm well advised to take half the recommended dosage on most medications.

I'm glad the minimal dose of 5-HTP works for me without any discernible side effects.  I would not like to have to experiment with prescription meds to deal with insomnia and/or depression.

Several years ago I experienced what I labeled  "The Summer from Hell" when I was prescribed a half dozen different meds in an effort to deal with a sudden onset of insomnia, depression and anxiety attacks, none of which helped and most of which just made things worse.  I told the doctors and other health care professionals that I dealt with that I suspected the problems I was having stemmed from abusing ambien and Tylenol PM while on an extended trip to Nepal.  But everyone I dealt with got out their prescription pads when they heard "insomnia, depression, and panic attacks."  Fortunately the primary psychiatrist I was seeing finally suggested that I give up on the prescribed meds and try holistic approaches.  This finally worked.

So, given this experience with prescribed meds, I'm delighted that the combination of 5-HTP (taken in moderation!) and meditation works for me on both sleep and mood without the need to experiment again with prescription meds.