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…
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.
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.
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.
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
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.
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.
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.
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.
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!
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.
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!
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.
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.
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!