Blog Archives

Parkinson’s Essay Turns 200!

Tomorrow,  James Parkinson‘s essay will be 200 years old. Since his discovery, modern  medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day,  since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.

I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.

On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease.  Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!

Five or More with Todd Sherer, CEO of The Michael J. Fox Foundation

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Five or More…

My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not.

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Italian – See next answer

 

What do you like on your pizza?

I’m a New Yorker.  Plain cheese, bent with the oil dripping onto the plate

 

Of the four seasons, which is your favorite time of the year?

Spring because baseball season starts. Go Mets!

 

How many World Parkinson Congress events have you attended?

3 – DC, Scotland, and Montreal

 

What are you looking forward to most in Portland, site of the WPC 2016?

Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team.  I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.

 

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

I’m extremely scared of heights.

 

Where would you like to go, that you have never been before?

Hawaii – how about they have the next WPC there so I can go?

 

What is the Michel J. Fox Foundation working on that you would like to tell us?

We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) .  These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease.  I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.

 

 

Friday nature photo!

Awareness.

Awareness.

Shoes, Coffee, Advocacy, and WPC 2016

First thing:

I am NOT a paid sponsor nor have I been compensated for these comments:

I guess you could call this a “footnote”–okay, bad joke, but I think some of you with foot problems and balance issues, might just find benefit in trying these shoes. They are the cost of a good running shoe and they have a return policy if the shoes don’t work out: My only mention of these shoes here is because I have found them to be so comfortable–period. My wife and I recently discovered these

Comfort and Stability

Comfort and Stability

running shoes made to accommodate for more space for a wider foot. We each got a pair–she loves that her heel doesn’t hurt and I love the comfort and flexibility that it allows my toes. I can say that these are the most comfortable shoes that I own!  I just think this product should be known. I haven’t sold out and I won’t sell out. I will only share products that I use, find great benefit, and feel that they may have a positive impact on your life. The shoes came from altrarunning.com.

Second Thing:

I want  to commend my friend, Sonia Gow on organizing her first Parkinson’s Cafe! Her event was a smashing success as over 50 people in the Fairfax, VA,  area attended. The event was like a free-flowing support group and a great opportunity to share and catch up with friends. We are so lucky to have Sonia’s passion and vision for helping the Parkinson’s community so close by. Check out her site at  www.parkinsoncafenetwork.org. to learn more.

Third Thing:

My friend Jean Burns is bringing awareness to some very important concerns involving clinical trial participant and hospital policies. After you have read this, share it with friends and family. This is an eye-opener. Here is the article in US News World Report.

Fourth Thing:

The 2016 World Parkinson Congress registration deadline for discount is nearing (July 5), so register soon. Don’t forget about visiting the author Book Nook and Wellness Way while you are in Portland, Oregon. This event only happens every 3 years and as an international event in North America, this is a great opportunity to learn from doctors, researchers, practitioners, and patients across the globe. This is a wonderful opportunity to meet and learn  from neurological experts from all over the world. Go to WPC2016.org to learn more.

A Twenty Year Old Speech Rings True

I was going through my files of paperwork and came across years of documents that I considered to be motivational, inspirational, and truly worth being read and reread. You might even remember it.

Although this following post is not specifically Parkinson’s disease related, I find it to be sound and practical advice for everyone. I hope that you enjoy it, find at least 1 of the 10 pieces of advice to be a morsel to take away, and may even share once again with others:

Palo Alto High School Speech by Guy Kawasaki 6/11/95

10. Live off of your parents as long as possible.
9. Pursue joy—not happiness.
8. Challenge the known and embrace the unknown.
7. Learn to speak a foreign language, play a musical instrument, and play no contact sports.
6. Continue to learn.
5. Learn to like yourself or change yourself until you can like yourself.
4. Don’t get married too young.
3. Play to win and win to play.
2. Obey the absolutes.
1. Enjoy your family and friends before they are gone.

If I were to add to this thoughtful list, I might add – Tell the people in your life and those you care about, just how much they mean to you, while you still can!

 

advice worth consideration

Advice worth consideration

FDA Reaches Out To Learn More On Those With Parkinson’s Disease

Yesterday, I had the honor and privilege of testifying in front of the United States Food and Drug Administration (FDA), about symptoms of Parkinson’s and how they impact daily living. The event brought out at least 20 or more of the FDA’s neurological specialists and decision makers. I watched as they listened to my fellow panelists testify about their struggles with Parkinson’s disease and many took copious notes about what was said.

A good day at the FDA!

A good day at the FDA!

I am confident that they were listening to the plights of those of us facing a variety of issues related to our illness. It is my sincere hope and plea that something positive, like an ongoing dialogue between FDA and patient, or even a rapid push for speedier development of therapies is implemented. It is encouraging and wonderful to see interest from the FDA and the Parkinson’s community. This can be nothing but positive and hopeful!

Why Did The Medication Stop Working So Fast–The Antibiotic Dilemma

When my medications turned off immediately for no apparent reason, I was befuddled and beyond worried. Not long ago a good friend experienced the same perplexing event with no medical forewarning. I saw an increase in balance issues, a reduction in drug benefit, and it took a longer time for to receive any benefit from my Parkinson’s disease medications.

Be aware of what might be interfering with your medications..

Be aware of what might be interfering with your medications.

It is a topic that I have seen no discussion on and yet to hear any doctor or patient bring to light. That most elusive of topics is the inclusion of antibiotics and the whirlwind of turmoil that can come with it.

Antibiotics disrupt the balance of our stomachs and the important enzymes for healthy digestion. They wipe out both the good and bad stuff in your gut, thus causing problems with the stability of your medications. As we all know, without absorption through the blood-brain barrier Levodopa and other medications lose their potency and overall efficacy.

So, the next time your physician wants to talk about putting you on an antibiotic for a toothache, infection, or anything that crops up, discuss with your doctor what the potential  side-effects might do to your Parkinson’s disease drugs and know what you may be facing. The antibiotics may be needed, just be prepared and consider a good probiotic to replace those digestive juices.

I am not a doctor and this is not medical advice. This is personal opinion and my events. Discuss this with your doctor before you make any changes. Share your stories with me and my readers, if you like. I will share your stories.

Dogs Give Us So Much!

Pure Sweetness!

Pure Sweetness!

 

Animals have healing properties all of their own. Look deep into these amazing and loving eyes and you can sense the intense power. She makes me laugh and smile and can frustrate me to no end. That’s my dog!

 

 

 

 

Alaska Awareness

The natural beauty of Alaska was so inspiring and uplifting!

The natural beauty of Alaska was so inspiring and uplifting!

Alaska Moon

Alaska Moonlight

I am fresh back from Alaska where I was treated to a bounty of natural wonders. Mountain vistas of snow-capped peaks, flowing waterfalls, soaring eagles, sun-soaking seals, and feasting humpbacks were just a few of the jaw-dropping trip highlights.

Nature has a way of putting us back into our place. It reminds us that we are but a tiny cog in a huge winding interwoven web of life which connects us all. Nature rejuvenates body, mind, and spirit. It reminds us what peace is meant to be.

As we seek answers and search for solutions to bettering ourselves, take the time to appreciate the beauty that is all around us. Find the calming energy that we all seek in the wonder of nature’s creatures and their surroundings. Everyone needs time with nature!  Sometimes it takes some reminding.

Mendenhall Glacier

Mendenhall Glacier

Alaska Waterfall

Alaska Waterfall

Who Are The Parkinson’s “Experts”?

Who are the experts?It has occurred to me that there are so many “experts” about Parkinson’s disease who don’t live with Parkinson’s on a daily basis. Why is there a deficit in recognizing that those living with Parkinson’s can be just as knowledgeable as those who study it? It’s a question that might sting a little, but who are the experts on living with Parkinson’s?

It’s wonderful to hear from psychologists, neurologists, and researchers, but overall, when the dust settles and the conferences end, who would you rather hear from? Who knows more about how to express their work of art, the artist or the critic? I think most of us would agree that the artist knows what they want to express while the critic is merely the interpreter who conveys their own perspective.

The newly diagnosed person with Parkinson’s and the one in denial are not yet experts, but that doesn’t mean that they can’t once be one. I don’t claim to be an expert but longevity with illness provides lessons whether you ask for them or not.

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