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.
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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