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TRANSLATE
Saturday, October 14, 2017
How cats and dogs are helping doctors predict dementia in people with Parkinson’s
Friends are high priority
NY City Bar Leader Prepares for Race of a Lifetime
Bret Parker
Bret Parker, executive director of the New York City Bar
Association, is preparing for a competition unlike any other: running seven
marathons on seven continents in seven days.
It’s called the World Marathon Challenge. While Parker, 49,
will be joined by up to 60 other participants in the race, he said he is the
only participant who has Parkinson's disease. His goal is to increase awareness
about the affliction and raise money for research.
Parker, who was an associate general counsel at cosmetics and
fragrance company Elizabeth Arden Inc. before moving
to the City Bar in 2013, sits on the Patient Council of
The Michael J. Fox Foundation for Parkinson's Research.
“Many people don’t understand that Parkinson’s is not just a
disease for older people. Many people can get Parkinson’s when they’re still
trying to work and raise families,” said Parker, a father to two teenage boys
who is married to Katharine
Parker, a former Proskauer Rose partner who left the firm a year ago to become a federal magistrate judge in the U.S. District Court for the
Southern District of New York.
Participants in the World
Marathon Challenge begin their first race in Antarctica in
January. They run the standard 26.2-mile distance on that frozen landscape
before heading
to six other continents.
Q: Where does the money
from your fundraising effort go? What does it support?
A: My efforts support The Michael J. Fox
Foundation, an organization focused on finding a cure for Parkinson's disease.
Parkinson’s is a chronic, degenerative neurological disorder that affects one
in 100 people over 60, but people have been diagnosed as young as 18. I was
diagnosed over 10 years ago at 38. Approximately one million people in the
U.S., and more than five million worldwide, have Parkinson's disease.
My fundraising is part of
the grassroots community fundraising effort called Team Fox. Each year, thousands of Team Fox
members raise money and awareness for the foundation through various events and
athletic feats. I’ve done a triathlon, marathons, a mountain climb and even a
skydive. The best part is that every penny donated for Team Fox members like me
goes straight to the foundation’s research programs to help find a cure for
Parkinson's disease, as well as better treatments for symptoms of Parkinson's
disease.
Q: Why are you running
the World Marathon Challenge? Is it only for fundraising?
A: For fun of course. Doesn’t everyone want to
run seven marathons on seven continents in seven straight days starting in
Antarctica and ending in Miami? But seriously, I’m attempting this challenge
for a number of reasons beyond just raising money for research. My
website contains more information about my goals. I’m trying to
raise awareness about the disease, the lack of a cure and the fact that
Parkinson’s is not just a condition that impacts older people. It’s also
important for me to keep living life to the fullest as long as I can. Tackling
a challenge like this is a reminder to me and others that I may have
Parkinson’s, but for now it doesn’t have me or define me.
Q: What do your doctors
think about your plans to run the race?
A: They think I’m a bit crazy to be trying
this, but exercise has been demonstrated to help with Parkinson’s symptoms, so
if this is what it takes to get me to work out, they are OK with it. I do have
to be careful about calibrating my medications during big runs, and the
symptoms of Parkinson’s make training tougher than “normal” at
times. Fortunately, my doctors don’t have any health concerns that are
directly tied to Parkinson’s.
Q: What have you been
doing to prepare?
A: Last year I ran the New York City Marathon to
make sure I could still complete one marathon. I had completed it four other
times. Once I finished that, I started training again to run the Chicago
Marathon, which I just completed. To increase my endurance, I’m running the
Marine Corps Marathon just two weeks after the Chicago Marathon. Starting in
November, the mileage and back-to-back long runs get more intense; plus I’m
trying to add diet and cross-training to my regimen. The toughest training week
before the World Marathon Challenge covers 71 miles, including a four-day
stretch of 10-, 15-, 18- and 20-mile runs in a row.
Q: Do you have to do
anything different compared with other participants during the race?
A: I take a lot of pills for my Parkinson’s
during long training runs and throughout the race. Because sleep and stress
make my symptoms worse, I need to take care of myself, including getting rest
and massages when possible. Unfortunately, lack of sleep is also a symptom of
Parkinson’s, so I’m still trying to find a solution for that. Occasionally,
some of the worst symptoms are painful cramps in my feet or legs, which can
stop me in my tracks and cause me to wait for the pain to subside. The symptoms
can be unpredictable and there are times when you would have no idea that I
have Parkinson’s, while other times I may look like I’m walking with a limp.
Q: What do you do on the
Fox Foundation’s Patient Council and have you met Michael J. Fox?
A: The Patient Council is a way for the
foundation to solicit input from Parkinson’s disease patients and the broader
Parkinson's community. We advise the foundation on programming for patients and
caregivers and patient priorities for research. We also are involved in patient
education, advocacy and outreach relevant to the foundation’s mission to find a
cure. I met Michael several years ago and see him every so often, including
giving him a sweaty hug on the route of the New York City Marathon last year.
He’s as nice and genuine as you would think from watching him in movies and TV
shows.
Q: How does Parkinson’s
affect you today, physically and day-to-day?
A: The main symptoms are stiffness and rigidity
in my legs and arms on my right side. I have a tremor at times in my right
hand, as well as cramps in both legs and feet. Lesser-known symptoms include
difficulty with fine motor skills, making my handwriting completely illegible,
even to me. I sleep horribly—some nights only three hours—and I have occasional
fatigue, not just from not sleeping, an extremely diminished sense of smell and
sometimes I feel like my memory for certain things is not as strong as it used
to be. For example, a name or word is on the tip of my tongue and I just can’t
pull it out, although some of that comes with age.
Q: How do you think
Parkinson’s has affected your work, first as an in-house lawyer and then as
executive director of the City Bar?
A: So far, knock on wood, my Parkinson’s has
not impacted my ability to work. By the end of the week, I’m fairly fatigued
and I use the weekends to recharge my batteries. But facing a serious disease
like this also caused me to think about my role in the world and making a
difference with a greater sense of urgency and purpose, making my work at the
City Bar even more rewarding.
Q: Have you gained any
unique experience or perspective?
A: I think having a disease like this has made
me more empathetic to the various personal issues we all grapple with and
appreciative of the differences that we all have. I’m also more keenly aware of
the challenges people face when trying to maintain work-life balance.
Q: Do you ever imagine a
time that Parkinson’s will interfere with your work at the City Bar or
generally your legal career?
A: Unless we find a cure and treatments to
reverse the disease, by definition my Parkinson’s will continue to progress and
eventually I won’t be able to continue working in the same kind of positions.
When I was diagnosed, I worried that the deterioration would be quick and I
would have to stop working quickly, but it turns out that my disease is
progressing relatively slowly and staying engaged with work probably helps.
Q: When you were first
diagnosed with the disease, why did you stay silent and what made you
ultimately speak openly about it?
A: When I was first diagnosed, my symptoms were
so minor that most people couldn’t even notice. I didn’t want to over-worry
people, at work or among friends, or have my career impacted by the stigma of
the disease. So I didn’t disclose my illness to most people for about five
years. Then, as my symptoms started to progress and I knew people would notice
and wonder, I wrote a blog for the Forbes website and told
people to go read it. I decided that it was time to reveal it because the
stress of the secrecy actually made me feel worse and being open about it
allowed me to publicly work toward raising awareness and fundraising for a
cure. Sharing the news was incredibly liberating.
Q: How would you describe
the state of Parkinson’s medication and research now?
A: They are making progress, but Parkinson’s is
a complicated disease of the brain and the same drugs used by patients 40 years
ago are still the most common medications. There is a ton of unfunded research,
as well as studies that require participants—not just Parkinson’s patients, but
also “healthy” control subjects.
All interviews are
condensed and edited for style, grammar and clarity.
http://www.newyorklawjournal.com/id=1202800411904/NY-City-Bar-Leader-Prepares-for-Race-of-a-Lifetime?slreturn=20170914174704
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