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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

The Joys and Challenges of Parkinson's Advocacy

 

There are good days and bad days when you are a PD Advocate, like anything else.

Linda and I got in the car at 8 am to drive up to Greeley to fulfill a commitment to speak at the PD support group there.  After stop and go traffic on I-25 through the Tech Center and construction slowdowns/bumpy roads, we arrived in Greeley with time to spare (or so we thought).  I was riding shotgun (as always) and was in charge of navigating us to our destination with the help (?) of mapquest.  This created two problems; mapquest directions often are convoluted and I get confused/flustered very easily.  Within minutes, we were pretty much totally lost.  Then we thought we were back on track but the road ended at a reservoir and we were lost again.  Linda asked a nice lady who was walking her dog for help, and she was more than happy to give it.  Unfortunately, in spite of her enthusiasm for the challenge, she knew less than we did.  We pulled over and Linda quickly came up with a new game plan, a key part of which was to put me on the bench.

When we rounded a corner and heard beagles barking in the distance (this part may not be 100% factually correct), we knew we were on the right track.  We arrived at our destination ten minutes late.  Now all of this may sound like “no big deal” to most people, but I was a basket case.  Stress and PD don’t mix.

I went inside and asked a nice young lady if she could direct me to the PD support group meeting and was met with a blank stare and the sound of crickets.  Another lady joined her, but she didn’t know either.  Just as I was about to give up another lady came along who knew where I should go (I know what you are thinking and you should be ashamed!). 

We entered the room as people were talking about the possible role of the gut as a starting point for PD (we knew this wasn’t a group of rookies).  We were introduced and found a place to sit. 

At that point, I actually did something smart (or at least Linda told me it was later).  I admitted that I was stressed out from the trip and asked for a few moments to “collect myself”.  Since I was surrounded by PwPs and care partners, everyone understood totally.  The meeting went very well.  They were very interested in our palliative care research study at University of Colorado Hospital (we are members of the patient/caregiver advisory council).  We talked about many other subjects, notably the importance of working with a movement disorder neurologist (MDN).  Predictably, not everyone was doing that for a variety of reasons, the main one being that there are no full time MDNs in that area.  We were able to share with them the idea of working with a local neurologist and a Denver-area MDN as a team as well as the growing trend toward telemedicine.

As I was closing (there was applause which is always good), I mentioned that I had brought a few copies of my Window of Opportunity and Shaky Paws Grampa children’s books in case anyone was interested.  At that point, a caregiver stood up holding a copy of the “Window” book.  She told the group that the book had great value to everyone with PD and that it has been very helpful to her (plus more nice stuff I can’t remember).

Anyone who has put their heart and soul into writing a book that they hope will “make a difference” in the lives of people they care about so much (in this case, all my PD brothers and sisters) will tell you that a comment like this makes it all worthwhile.  As you can imagine, it was difficult to get the words out to thank her adequately.

We were impressed by the group's leader, Ann Rich, and asked her how she got involved.  She lost her father to Parkinson's a few years ago and feels committed to helping others with PD to honor his memory.  She also shared how she wished that palliative care had been available for him as there had been avoidable problems.  It was obvious that she had a real connection with her group.  At that point, everyone in the room expressed their gratitude for her caring and service.

In spite of the challenges we experienced on our journey, the joy we experienced in our interaction way more than made up for it.  It was a good day. 

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Kirk Hall

What is neuro-physiology?

Neuro-physiology combines the use of a neurofeedback device that records brain frequency with a mobile app that guides the user through an exercise program.

Neuro-physiology enhances exercise helping fend off Parkinson’s symptoms. Here's how:
Reducing brain frequency during exercise makes exercise more effective. Exercise prolongs the good effects of the dopamine that remains in your body (or is taken orally).


Using the FocusBand neurofeedback device, you train your brain to be in a better state during exercise. This makes the effect of the exercise on your body better, allowing the existing dopamine to be more effective. This has the effect of increasing a Parkinson's patient's "on time,"reducing or abating some of the symptoms of Parkinson's.
 
 The Just Do Something Every Day mobile app provides a custom exercise program that, when used in conjunction with FocusBand, guides the user through a carefully designed exercise program. Each exercise is chair, wall, or floor supported so balance issues are reduced. The program was designed by Tom House, PhD. Tom is a former major league pitcher and is currently one of the world's most renowned throwing coaches, working with Tom Brady, Drew Brees, Matt Ryan, and scores of major league baseball pitchers.


T Together, FocusBand and the mobile app will retrain your brain during a short daily exercise program to get the best possible benefit from the exercises. Just Do Something Every Day is setting up a "crowd trial" to collect more scientific data on neuro-physiology.

More information on the complete program and crowd trialing can be found at www.justdosomethingeveryday.com.

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Kirk Hall

Confessions of a Hobbit-wannabe

I used to really love reading.  I think I really got hooked when I first read The Lord of the Rings by J.R.R. Tolkien my senior year at Ohio State.  Not for a class, but for pleasure.  I don’t remember for sure who “turned me on” to that book, but it may have been someone I knew at a campus men’s wear store where I worked part-time, College Classics.  I tried working at McDonald’s and walked out after a few hours.  I guess it wasn’t meeting my career goals.

I probably read all three books five or six times over the next ten years.  I do believe that on at least one occasion, I started the first book (Fellowship of the Ring) immediately after finishing the last book (Return of the King).  I wasn’t just reading those books, when I picked them up I was in Middle Earth.  If by doing this, I was “escaping” the real world for a time, that’s OK with me.  That is one of the things a good book is for.  I have gradually become aware over the years that, whether it’s a personally engaging book or movie, when it’s over I feel like I was there.  Sometimes it takes me a while to recover afterward, because of the impact the book or movie has had on me.  These feelings have been amplified the last couple years, I am sure due to PD.

As I got older, I would read at night before going to sleep.  Another favorite reading time was on long airplane trips for business.  During my “free time” when I wasn’t working I was busy going to watch our son’s games, running (I jogged wherever we lived and on trips-I can remember jogging in Tokyo, Las Vegas, Los Angeles, Detroit, Buffalo and lot’s more), playing tennis or golf, or doing yardwork (with the help of my reluctant staff-our boys).

For example, I remember getting into James Clavell’s Noble House books about Hong Kong on several flights back and forth to that great city.  I was a big fan and ardent reader of Stephen King for many years until I read Pet Semetary (I don’t think I have fully recovered from that one to this day).  I can remember reading the Agony and the Ecstasy (if I remember correctly, it was about the life of Leonardo DaVinci).  One book that had a big impact on me in the early 1990’s was The World Is Flat. It helped me to understand the “big picture” of how the world was changing at an accelerating pace and the challenges we would face as a result.

Fast forward to the more recent past when I became a fan of Tom Clancy and John Grisham, in particular.  I read very little in the few years after my PD diagnosis.  I tired easily and basically gave up on it.  As time has gone by, I have “re-engaged” in many ways including reading.  I started reading on a much more regular basis the last couple years.  Books that I found to be particularly memorable included A Man Called Ove which was made into a memorable movie (mostly shown at small “art” theaters). 

My son gave Linda and me their children’s used Kindle Fires for Christmas last year.  After getting over the initial intimidation factor I experience with any new technology, I found that a fabulous door had been opened for me.  I learned how to up or download (I can’t keep straight which is which) ebooks from the library to my Kindle Fire using Overdrive.com.  It still takes me a long time to navigate the system, locate a book that I would like to read and actually get it sent to my Kindle, but I have persevered.  I have really enjoyed Bill O’Reilly’s Killing books and found more good Grisham books.

I just started a fascinating (and controversial) book that was loaned to me by my younger son’s father-in-law (and good personal friend), 1421: The Year China Discovered America, that makes a convincing case that China became a major force in world exploration in the early 1400’s before the time of the famous European explorers.

If you have PD and have “given up on reading” like I did, you might want to give it another shot.  I am glad that I did.

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Kirk Hall

Important Paid PD Research Opportunity

I receive quite a few contacts through my website related to PD.  I did some research on this one and it seems quite legitimate and credible.  It seems worth checking out if it appeals to you.  The company is Video Chat Network (http://videochatnetwork.net/pharma-redo/).  They are an agency that uses innovative technology to gather information for the pharmaceutical industry for product and services development.  To be clear, I can't endorse this company personally but it looks good.

 

My name is David Mechlin and my company is Video Chat Network (https://videochatnetwork.net/). We are an independent research firm engaged in a project for an agency who helps Pharmaceutical companies improve how their patients understand and use their treatments for best results. We would like to speak to patients in the US who have suffered with Parkinson’s Disease for at least 4 years and who have received treatment for at least part of that time. The purpose of the project is to learn more about the various treatments you have received for Parkinson’s and how well you have been served by them. Additionally we want to hear your opinions and points of view on living with Parkinson’s in order to better address the overall treatment and lives of PD patients everywhere. If you are a patient meeting these criteria and are interested participating in a 30 minute video chat interview in your own home, we will compensate you $75 for your time and opinions. If you can refer us someone qualified we will compensate you $25 for every interview performed that your referral provides. All you will need is access to a strong internet connection along with a device with a camera such as computer, a tablet, or smartphone. We would be asking you for an appointment to perform the interview at a time convenient for you over the next few weeks. If you are more comfortable doing the Interview together with your caregiver we welcome them as well. Please know we have extensive experience conducting health care/pharmaceutical research which you can check out on our site (http://videochatnetwork.net/pharma-redo/). We are always respectful of patients and their condition. Please send me an email or call me at 646-772-7016 if you are interested in helping us out. Thank you for your interest and help. David Mechlin Video Chat Networkdmechlin@videochatnetwork.net(M) 646-772-7016 

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Kirk Hall

PARKINSON’S & GENETIC ENGINEERING

 

I am a PwP (person with Parkinson’s) who is very interested in the topic of genetic engineering in general, but specifically with regard to neurodegenerative diseases and especially Parkinson’s. I am going to provide a number of links from the internet related to this topic and also discuss new developments.

1.  Gene therapy breaking ground in treating Parkinson’s disease

https://www.geneticliteracyproject.org/2016/08/23/gene-therapy-breaking-ground-treating-parkinsons-disease/

           
           

Parkinson’s patients who take the drug levodopa, or L-Dopa, are inevitably disappointed…[when,] over time[,] the drug becomes less effective…

A biotech company called Voyager Therapeutics now thinks it can extend the effects of L-Dopa by using a surprising approach: gene therapy. The company…is testing the idea in Parkinson’s patients who’ve agreed to undergo brain surgery and an injection of new DNA.

Voyager’s strategy…is to inject viruses carrying the gene for AADC into the brain, an approach it thinks can “turn back the clock” so that L-Dopa starts working again in advanced Parkinson’s patients as it did in their honeymoon periods.

[There is] one edge [that] Voyager’s approach has over others. It is possible to tag AADC with a marker chemical, so doctors can actually see it working inside patients’ brains…[In] past studies of gene therapy, by contrast, doctors had to wait until patients died to find out whether the treatment had been delivered correctly.

“I believe that previous failure of gene-therapy trials in Parkinson’s was due to suboptimal delivery,” says [Krystof] Bankiewicz.

Complete article: https://www.technologyreview.com/s/602193/manufacturing-dopamine-in-the-brain-with-gene-therapy/

2.Scientists genetically engineer world’s first monkey with Parkinson’s disease

http://parkinsonslife.eu/scientists-genetically-engineer-worlds-first-monkey-with-parkinsons-disease/

Controversial research hopes to “predict the onset of symptoms”


It might sound all a bit Frankenstein. But it’s true – researchers have genetically modified the world’s first monkey to have Parkinson’s disease. The controversial development will provide unique insight for scientists and could lead to major breakthroughs for people living with the disease.

The research team from Japan presented their marmoset model of Parkinson’s at the State of the Brain meeting in Austria last month. Led by Professor Hideyuki Okano of the Keio University School of Medicine in Tokyo, the researchers developed the marmosets to have mutated copies of a human gene called SNCA that is linked to Parkinson’s, according to The New Scientist.

When the SNCA gene becomes ‘faulty’, alpha-synuclein – the protein that kills the dopamine-making cells – builds up in the brain. It’s this lack of dopamine that causes the motor symptoms experienced by Parkinson’s patients.

The first signs of Parkinson’s symptoms began to manifest in the monkeys three years after birth. First they displayed signs of sleep disturbance, and later their brain stems began to display instances of protein globules composed of alpha-synuclein called Lewy bodies – a strong indicator of Parkinson’s. This was followed by characteristic tremors associated with the condition.

The brains of primates are a lot more similar to ours than those of mice, which currently dominate the neurological field of research. Okano’s team showed that when treated with levodopa, the tremors in the monkeys were alleviated in the same way humans react to the drug.

The scientists hope that this research using brains similar to our own will lead to new treatments. “With these diseases, it’s very difficult to investigate what’s happening in living people, so knowledge of the brain circuits responsible are mostly unidentified,” says Okano. “We hope to find ways to predict the onset of each symptom, and develop drugs to slow down disease progression.”

While primate research is generally met with public disapproval in Europe and the US, opposition in Japan and China is less prevalent where breeding colonies house thousands of primates for scientific research.

3.  Discovery of genetic 'switch' could help to prevent symptoms of Parkinson's disease. https://www.sciencedaily.com/releases/2017/02/170217100054.htm

In a paper published in the journal Cell Death and Differentiation, the team discovered that a gene called ATF4 plays a key role in Parkinson's disease, acting as a 'switch' for genes that control mitochondrial metabolism for neuron health.

Dr Miguel Martins from the MRC Toxicology Unit at the University of Leicester, who led the research, explained: "When the expression of ATF4 is reduced in flies, expression of these mitochondrial genes drops. This drop results in dramatic locomotor defects, decreased lifespan, and dysfunctional mitochondria in the brain.

"Interestingly, when we overexpressed these mitochondrial genes in fly models of Parkinson's, mitochondrial function was reestablished, and neuron loss was avoided."

By discovering the gene networks that orchestrate this process, the researchers have singled out new therapeutic targets that could prevent neuron loss.

Some forms of Parkinson's are caused by mutations in the genes PINK1 and PARKIN, which are instrumental in mitochondrial quality control.

Fruit flies with mutations in these genes accumulate defective mitochondria and exhibit Parkinson's-like changes, including loss of neurons.

The researchers used PINK1 and PARKIN mutant flies to search for other critical Parkinson's genes -- and using a bioinformatics approach discovered that the ATF4 gene plays a key role.

Dr Martins added: "Studying the roles of these genes in human neurons could lead to tailored interventions that could one day prevent or delay the neuronal loss seen in Parkinson's."

The findings build upon recent research by the University of Leicester team, which recently discovered several genes that protect neurons in Parkinson's disease, creating possibilities for new treatment options.

Two of the genes -- PINK1 and PARKIN -- affect how mitochondria break down amino acids to generate nucleotides -- the metabolism of these molecules generates the energy that cells need to live.

Thoughts

I am not a doctor or scientist, so any comments I make are from an (interested and at least somewhat informed) layman perspective.

These three articles cover different topics but seem to be related to what is, ultimately, genetic engineering. The first involves introduction of a virus containing a healthy gene with the goal of having it replace the patient’s defective gene with one that will enhance the effectiveness of dopamine they are taking, thus reducing symptoms to a level associated with a much earlier stage of the disease. It is not clear to what degree this would be a “long term fix”, but the process includes a “marker” that would make it possible to evaluate changes.

The second article is one example of potential ethical issues connected to genetic engineering. The topic is marmosets that are genetically engineered to have PD for the purpose of research.

The third article discusses genetic manipulation of fruit flies and the discovery of a gene called ATF4 that has been altered in studies that result in a decrease in PD symptoms in the flies.

To be clear, gene therapy is not new news. There have been studies that have shown mixed results. Researchers have told me that, based on results to date, they don’t it as holding much promise.

In the last six months or so there has been a great deal of news surrounding a genetic engineering technology called CRISPR that seems extremely promising. I recommend reading this article (http://sitn.hms.harvard.edu/flash/2016/crispr-in-neuroscience-how-precision-gene-editing-may-unravel-how-the-brain-works-and-why-it-sometimes-doesnt/) for a detailed discussion about what it is, how it works, and the dramatic implications it holds for neuroscience

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