Raising PD awareness ONE shuffling Step at a time. By Dr. De Leon

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As we approach Parkinson’s Day on the 11TH of this month, I am reminded how far I and others have come in this journey with PD.  I am more determined than ever to continue the fight against Parkinson’s disease both on a personal level as well as a collective effort. As a physician, and patient I have been privy to many extraordinary advances in the understanding of this complex illness over the last decade. In 2016, I saw a rise of a new movement towards better understanding the gender differences; in an attempt to to find a unifying link that will lead us one step closer to a cure- if not for all with PD perhaps for various distinct sub-types. I have been privy to be part of Women in PD and the first guidelines and recommendations were recently published by the Parkinson’s Foundation on this subject.

Many new advances have also been taking place in the genetic realm with studies like Large PD, supported by Parkinson’s Foundation, which aims to unveil genetic characteristics particularly among Hispanics which could be the culprits in the development of PD. Other genetic projects which are equally fascinating to me, particularly since I am a LRRK2 carrier, is the ongoing Nasa project (funded by MJFOX Foundation) to grow LRRK2 proteins in space to a larger size since on earth they are too small and too compact to study properly.  The discovery of GBA1 (glucocerobrosidase) gene mutation in 2004, the most common of all gene mutations presenting up to 10% of all PD patients, has open the door to even more  possibilities requiring further investigations. The question remains as to why this gene which directs the production of glucocerebrosidase protein, which plays a major role in the waste disposal of the brain malfunctions? More importantly, why does it only develop enough build- up of waste in the form of clumped misfolded alpha- synuclein leading to formation of Lewy bodies in a very low percentage of those with gene mutation?   I believe that finding these answers will lead us one step closer to finding a cure.

However, being a clinician, I believe that the biggest answers lie within the clinical realm. If we understand the physiology and disease progression being able to tackle it earlier I believe we can halt the progression. One step in the right direction is recognizing the importance of non-motor symptoms presentation years before the motor key features upon which diagnosis still relies. I use myself as a prime example of how criteria need to be revised and non-motor symptoms incorporated to better treat and diagnose patients. Because of the high suspicion having a family history of PD and also of essential tremors with a genetic mutation although I did not by any means qualify as a “typical idiopathic Parkinson’s” patient I began treatment couple of years after my onset of symptoms still in my late 30’s. To my amazement many of the symptoms which had never occurred to me a specialist of PD to be related to be subsided with treatment. I have done well overall nearly 13 years out and remain for the most part independent and fully active. Yet, if I would have waited to develop all 4 key features (tremors, bradykinesia, rigidity and postural imbalance) I would not have been diagnosed till 10 years later. Not only altering the disease progression and my life style and quality of life significantly but I would be considered borderline for early PD. I believe that this happening around the world very often especially with young women who seem to have more pronounced non-motor symptoms.

In light of this, how do we then begin to raise awareness along with the standard of care for the families and nearly 10 million people who live with Parkinson’s worldwide? 

Start by educating each other along with your physicians. Begin by opening up about the things that are embarrassing, frustrating, and down right infuriating, as well as the things that matter most to you and your family as you battling this illness, leaving aside the shame which only serves in my experience to make diagnosis and treatment more difficult.

You may prefer starting these personal conversations in a more intimate setting like a support group.  As many of you know from personal experience, support groups are in essence the life line to living well with PD and bringing insight back to the health care professionals.

Yet, the reality is that not everyone has access to a support group because of distance, economics, place of residence, etc.  Thus, how does one have access to this? Of course there is always social media which can bridge any socio-economic or distance. Another option is starting your own group if you prefer something more intimate, personal and face to face which affords the benefit of having closer people in the same community to lean on when times get tough, because we all know it takes a village to make PD work for us.

Look around at your community to see if there are some groups already established. Ask your friends, your health care communities, the various Parkinson’s organizations, go online. If there are multiple groups in which you are interested attend a few or all to get a feel of the vibes…

Become a mentor- you have a story to share…

Send letters to your government leaders for more research money, more access to health care and treatments. Funding for projects like art therapy, music therapy, aquatic therapy etc.

For instance if you are young person with PD, you might prefer to join a young support group, a women’s group (because gender issues are different especially if child rearing), or single people with PD, or even one based on PD status like already had DBS (deep brain stimulation) and such. I, myself, truly enjoy meeting with other women with and without PD because independently of our health status most of us women share the same goals and life challenges like working and having kids, being a mother, a wife etc.  Sometimes we simply feel more comfortable in expressing ourselves or talking about sensitive issues if we are surrounded by similar minded individuals. But, above all choose wisely. Stay open to others ideas. 

Whatever you choose to do remember to make the shuffle a part of your dance by embracing PD without letting it define you.

Keep going even if its one shuffle at a time ….

@copyright2019

All rights reserved by Maria De Leon

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