Thursday, April 11, 2019

World Parkinson's Day, Parkinson's Disease Awareness Month & The Danish Consulate


Today, April 11th, is World Parkinson's Day & the month of April is Parkinson's Disease Awareness Month. With this in mind, the Parkinson's Foundation has requested that we share our KeyToPD with the community. These are essentially life hacks, I made the video below encouraging people to adapt.


Here are some additional life hacks:

  • If you cannot button your cuffs or that annoying little button on your sleeve, roll up your sleeves. This is a completely acceptable fashion statement, especially since the chances are that you have worked hard all your life and probably have nothing to prove to anyone. (Thanks Jori E. Fleisher, MD, MSCE).
  • What if you like the look of a button-down shirt, but do not want to deal with all of those buttons? Why not try a popover shirt? You can further disguise the shirt by wearing a tie or a sweater vest.
  • I used to be able to hold my coffee & shoulder bag while simultaneously opening my office door. Sadly, those days are over. If you find yourself in the same situation, simply install (or have someone else do it) a cheap wall shelf from the dollar store or Home Depot. Put all your stuff on the shelf, unlock the door, hold it open with your hip and then grab all your stuff. If you have Parkinson's disease this is much easier than having to place all of your belongings on the floor prior to opening the door. With PD, bending over can be a challenge.
Here are some more facts that you may not be aware of from the Parkinson's Foundation:

Sadly, I am one of those 70 to 90%. Good thing that my wife reminds me when it is time to change the litter box! While this seems like a minor annoyance, food does not taste as well, which explains why so many PD patients lose weight!

The above image is a nice segue into:


 
I was proud to represent the Parkinson's Foundation at Danish Science in the City 2019. After an introduction from, Consul General in New York, Ambassador Anne Dorte Riggelsen, I was part of the patient panel conducted in an effort to explain to pharmaceutical companies, investors and researchers the experiences of patients with clinical trials.

One of the big takeaways from this day was that while there may be many gene therapies in the pipeline for the treatment and/or cure of PD, these may not be developed unless health insurance companies are willing to pay for them. While cures for orphan diseases may be developed, neurological conditions, such as PD, may affect far too many people (1 in a 100) & therefore, insurance companies may not pay for these treatments. Organizations like the Parkinson's foundation are working on this, so more news to follow.

How Am I Doing?
I have been asked repeatedly to make this blog more personal. Everyone has been so kind to me and not a day goes by without someone asking, "How are you doing?” The answer is okay. While I really have not progressed on the Parkinson's scale, it seems as though I have developed some dyskinesias. One of these makes my right foot turn in when I walk & this makes it much more difficult to pretend to walk, "normally." In addition, I have developed a neck tremor or dyskinesia which makes it look as though I am shaking my head no. So if you think that I am disagreeing with everything that you have said, it is probably just my tremor!

I am busy enjoying my life and I am about to leave for Paris with my wife to celebrate her 50th birthday and our 10th wedding anniversary. You are okay Kate Lynch! I love you more today than ever. Kate is busy with her blog, podcasts, website,and planning a yoga retreat. She is promoting yoga for everyone & contributing to a more inclusive yoga community.

Our son Ocean is eight years old and we are very proud of him. He is busy with school, soccer and learning all about outer space. Ocean, I am very proud to be your Daddy!

That is all for now. Thank you for reading and please, consider joining my blog.
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3 comments:

  1. i was diagnosed of parkinson disease 5 years ago,i started azilect,then mirapex as the disease progressed in february last year,and i started on parkinson disease Herbal medicine from ultimate herbal home,few months into the treatment i made a significant recovery,almost all my symptoms are gone,great improvement with my movement and balance,it been a year and life has been so good for me,contact them at ultimatehealthhome@gmail.com

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  3. my dad was diagnosed with Parkinson’s disease.his symptoms were shuffling of feet,slurred speech,degradation of hand writing, horrible driving skills, right arm held at 46 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he was having trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who also needs help.

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