Friday, February 27, 2015

PD ExpertBriefing: Vision Symptoms of PD

I am reprinting the following from PDF to help extend it's reach.  I think this will be interesting to many of my readers.  Use this link to registerhttp://event.netbriefings.com/event/pdeb/Live/vision/register.html

Parkinson's Disease Foundation Logo Click here to RSVP
Dear Friend of PDF:
How does Parkinson's disease affect vision? Find out by joining PDF and Dr. Daniel Gold for a one-hour PD ExpertBriefing on Tuesday, March 3 at 1:00 PM ET.
More Than Meets the Eye: Vision Symptoms of PD
Who: Daniel Gold, D.O., is Assistant Professor of Neurology, Ophthalmology, Otolaryngology – Head & Neck Surgery, and Neurosurgery at The Johns Hopkins School of Medicine in Baltimore, MD.
How to Attend: Sign up here to join online or by phone. Please keep your confirmation email, which has instructions for joining the day of the live seminar. Phone participants will receive seminar slides by mail, with a unique toll-free number to use the day of the seminar.
CEUs: Are you a health care professional seeking continuing education units? CEUs are managed through PDF's sponsorship of the American Society on Aging. You will receive a link to apply for CEUs within several days of the LIVE seminar and will have up until 30 days to view and apply (a recording will be posted one week after the live event). An additional 30 days will be needed to process your application.
This series has been made possible by an educational grant from AbbVie, Inc.
    Event Info

When: Tuesday, March 3, 1:00 PM - 2:00 PM ET
Where: Online or by Phone
Will you attend?
PD EpertBriefing logo with image of Daniel Gold.
Dr. Gold is a neurologist specializing in neuro-ophthalmology. In his clinical practice, he cares for individuals who experience vision symptoms related to brain diseases such as Parkinson’s disease.

Thursday, February 19, 2015

Change of Direction Progress Report 2

Image result for weight loss pictures

Since I made a commitment to the world (what was I thinking?) to follow through with this lifestyle & wellness program, here is an update on my progress.  

It has been about 3 weeks since my first progress report and 5 weeks since I started.  I have lost 18 pounds including 13 pounds of FAT (yuck!).  On the not so positive side, I have lost about 2.5 pounds of muscle mass, so I need to work on reversing that trend, as muscle consumes calories even at rest.  Also important is water % which has risen 2.5% from the start.

I think it is worth noting that we were on vacation in Florida for 12 days of the last 3 weeks.  In the past, I would have used this opportunity to forget about the diet and "run amok" (a term we use in our family for eating whatever we feel like).  This time, I had a plan and Linda to help me make it happen.  She packed the shake powder in plastic bags and we took our smoothie machine to make them.  I did go off the wagon a couple times in restaurants, but was able to "stay the course" overall.  Bike rides and walks on the beach provided the exercise I needed.

I am 10 pounds from the goal I set to reach after 90 days and I have not reached the halfway point.  Since it is not a good idea to lose too much too fast, I may make some minor adjustments.  However, if, strike that WHEN I reach my goal I will set a new one.

It is an oversight that I have not mentioned all the associated health benefits that I hope to realize from these changes, besides feeling better and having more energy.  I have been taking blood pressure and anti-cholesterol meds for over 30 years.  I would like to get off these altogether.  Statins (for cholesterol reduction) in particular have come under heavy fire in recent years.  Additionally, I started using a CPAP to avoid sleep apnea (which, left untreated, can kill you) about 15 years ago.  So I go to bed looking like a deep sea diver and sounding like Darth Vader (just ask my grandkids).  I have a realistic chance to leave that behind as well.

I went into this hoping to put a dent in my cognitive/memory problems.  So far, I have not seen improvement but hope that will change over time.

Monday, February 2, 2015

Parkinson's Research Will Find A Cure

  •                         Living Proof

Linda and I watched a wonderful dvd movie from our library called Living Proof (http://blog.nola.com/davewalker/2008/06/harry_connick_blog_take_w_audi.html) about Dr. Denny Slamon (played by Harry Connick, Jr.), a real life UCLA cancer researcher.  Dr. Slamon's amazing commitment and persistence against all odds resulted in a revolutionary drug called Herceptin that has saved the lives of thousands of women with breast cancer.  His story is extremely inspirational and a source of hope for patients with life-threatening diseases.

But how frustrating it was to witness what Dr. Slamon had to go through to get support for his drug, pay for clinical trials, and, finally (after many years during which lives were tragically lost that could have been saved).  This reminded me that PWPs have to do everything we can to support the research process at EVERY stage, including the political work that lays the groundwork for the actual research (a BIG thank you goes to all PAN members!) and financial support to speed new drugs to market (thanks of all organizations who contribute, particularly the Michael J. Fox Foundation), as well as the actual research!


I am excited about and have registered to investigate participation in phase 2 research being planned by Dr. Charbel Moussa at Georgetown University to study the effects of a drug (nilotinib) used to treat leukemia patients . Preliminary research using animal models has shown that this drug "provides a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others." (http://www.georgetown.edu/news/cancer-drug-parkinsons-study.html)


Linda read an article in a magazine inserted into the Sunday Denver Post about this study the day after we watched Living Proof, made the connection, and showed it to me.  I googled information about it and emailed Dr. Moussa.  He replied the next day, telling me I could register to participate, which I did.  If you watch the movie, you will see that a variety of people learned about the Herceptin trials in ways that defy explanation.  Some of those initial participants went on to have their conditions improved, sometimes substantially, and at least one experienced total remission of her cancer.


I am daring to hope that I might be included in this study.  If so, I might benefit with regard to PD and/or mild cognitive impairment and/or help develop treatments that will make a difference in the lives of others.  Hope is a good thing.

Update: It appears that I do not meet one of the inclusion requirements (https://foxtrialfinder.michaeljfox.org/trial/3974/)