Perils of Fast & Furious – Life with PD: by Maria De Leon

In life some people trip and some fall but some take that trip and make a beautiful dance out of it.Sometimes, I feel like everything is just going too fast with my daughter nearly finishing high school and my only nephew applying for master’s program while my oldest niece heads off to college. I remember holding all these babies in my hands thinking I could hold them forever in my arms. Now, although I am happy and proud, I just want time to stop and enjoy all of it. Why can’t time have Parkinson’s? Wish it would crawl like molasses as my body often seems to do when I want so much to move faster. Wish time would have a bit of memory loss, as  I often do after taking my amantadine, when it comes to the bad days and freezes during the moments of  sheer joy like when I listen to my daughter play the piano and marvel at her talent as she plays one of my favorite melodies-Nocturne. But, alas as much as I would like time to develop PD it would have none of it. However, it has become my friend showing me the beauty around even as my disease progresses and seasons change – there is always something new to behold,  and learn from.

So has been my life this last month,  I thought that once my practiced closed I would feel a void in my life. But, rather I have discovered new activities, skills, talents, and friends I never imagined that I would have all thanks to living with PD.

In my role as ambassador of PF and activist for all people with Parkinson’s, I got the opportunity to have several interviews nationally to raise awareness in the Hispanic community as we celebrate 200 year anniversary of the “Shaking palsy” publication.

No more fast paced times have I had than during these days of interviewing sitting by my phone starting way too early for me and my meds to kick in- fortunately I did not have to go further than my bedroom. one talk after another and another- feeling my words begin to slur as my mouth became thick and dry and hypophonic (low voice) as the effect of  the medication wore off quicker than usual due to the high mental activity. The days went by in a blur compounded by other responsibilities and activities, I as a mother have. Two of my favorite stories which will live in my memory bank forever that occurred during this crazy period are as follow.. which will forever cause a big smile.

My daughter was to sing in the choir at church, I was spent from all the awareness activities and radio show talks that I could barely move and my neck was in a state of complete spasm from talking on the phone for hours. The cervical dystonia invariably triggers a wave of migraines which usually I can abort but not this week when I needed most because the insurance had refused to cover my Maxalt which I have taken for years and the medicine I was given to replace only caused my head to hurt more. There I was with severe migraine throwing up and stiff as a board trying to get dress in a hurry. No can do my body protested. But, I must get ready and attend my daughter’s performance I insisted despite by husbands better judgment, of course I should have listened because by the time we arrived we only saw her leaving the stage.

The second scenario-came about in the middle of the week in the midst of a hectic schedule which include teaching. A friend associated with a group of women I teach left me a voice mail saying there would be a get together and would love for me to attend the following day at noon. No more details or at least I did not hear. The following day  after completing all my morning activities, I realized it was almost noon. I did not want to let my friend down since she insisted I come. But, having been on the computer and phone since 6:30 in the am I was in no way ready to socialize. The dilemma was go all grungy an hope to get there on time or make effort to look presentable knowing full well I would be late. Realizing lunch was being held at a place usually considered a bit more upscale I opted for the latter – thinking this was an informal get together. I arrived late of course and entered a room full of  well- dressed women seated at tables with fine china and cutlery. I nearly retreated but the host caught a glimpse of me and said: ” I am so glad you made it. let me show you to your seat which had my name inscribed on a card.” this was an etiquette luncheon! First faux pas – do not show up late! but, thank God at least I was presentable! after a very enjoyable lunch and fellowship which extended way longer than I hoped for (and could not leave early since I was already late too begin with) I had to sit getting stiffer and more antsy since I had another meeting to attend and the time for this to start was beginning to draw near.   I am still not sure as far as etiquette if would have been better to not look good but be on time or arrive late looking fabulous!  This week back to my slow crawl pace – till next adventure. In the meantime will try to catch up on some reading curled in my favorite diva couch!

Happy Week to everyone!

Art By Ross Webb

Letting go of perfect: by Maria De Leon

“if you are interested in happy endings, you would be better off reading some other book .” Lemony Sniket, A Series of UNFORTUNATE Events

These last few days, although terribly exciting have been spent in a hurried frenzy. Partially, due to my daughter’s hectic schedule, planning activities for Parkinson’s awareness month, and Easter weekend around the corner. Plus not to mention pulling all night-ers while attempting to finish writing my Spanish book on top of all my OTHER responsibilities.

Yet,  when I was invited to be spokesperson for Parkinson’s foundation for Hispanic community, I jumped at the opportunity to raise awareness and encourage further participation in clinical research.

As I am KNOWN to do when I have a task to complete, I become hyper focused with  tunnel vision. However, I am learning to let go of perfect. This profound revelations has not happened over night and in no way fully mastered. If it were the case, I would get myself and family to church more often. Instead of wasting precious time fighting to get into my nice dresses and figure out a way to keep make-up from running down my face because sweaty decided to pay me a visit; which he seems to time perfectly when I want to look my best. Imagine My wild MANE not so proudly dripping like an open faucet. Of course, the beautiful Spanish fan my dear friend Alex gave me a year ago is nearly falling apart from the speed with which I furiously attempt to cool myself off and send my little friend packing. Unfortunately, he always finds his way home no matter how far I send him. Needless to say I feel, I have become like Martha in the Bible. Instead of worrying about having a perfect appearance for God, I should concentrate only on enjoying my time with Him and with those that matter most. He along with those closest to have seen me at my worst. So a few fashion faux pas from a nauseated, stiff, slow shuffling, extremely overheated women attempting to look graceful as she ascends the stairs to the sanctuary might not be such a big deal to God or anyone else for that matter.Image result for images of imperfect things

Having 7 radio talk shows in a single day, you can imagined triggered-my alter ego-control freak to go on super high alert. Even though, I managed to suppress these urges, a bit reared its head. First, I withheld my amantadine and sleeping pill so that I would be able to function better than usual so early in the am. Plus, forming cohesive sentences during my interview was critical which meant more dopamine. Then I tried 4 outfits to make sure I looked my best for national radio live streaming of face to face interview with Dra. Isabella -“The angel of the radio.” Funny thing, you could not tell what I was wearing and I wore myself out even more. Had I not try to control how I looked as much or worried about how embarrassed I would feel if I stumbled speaking do to short-term memory loss from anticholinergic. I would not have had this morning’s episode. Trying to do it all with little or no sleep in last 48hours led to me experiencing a full array of emotions in the most inappropriate of ways.

I had been craving waffles drenched [usually drizzled but I like my sugar] in caramel layered with praline covered nuts. The sugar craving only increases with extended brain activity. Since, both my husband and I been so busy this morning was our chance to connect over sugar treats which made me almost giddy. But my exuberant mood rapidly came tumbling down when the server said they did not have what I was looking for. Did they not understand that it not me but my BRAIN needing it’s  sugar fix to feel normal and only the caramel, praline nuts would suffice! Sure, I was disappointed. But, when the tears began to roll down my check, I knew my brain had enough. Of course, my husband was dumbfounded by my obvious emotional reaction to breakfast food.

I could have let it ruin my breakfast along with entire day. Instead I shushed away Mr. insane and told my brain to please send Mr.. happy down with the clowns because what we had was a BIG circus in the making.  Then, I pulled up my chair, leaving perfect behind, for a better view and brought my family for a ride in the merry go-round.

Remember not to sweat the small stuff for is in these rare moments where memories are created and bonding occurs. SO, next time you stumble make it part of the dance; but whatever you do- don’t stop dancing!

 

OH, the places you will Go!: By Maria De Leon

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go.” Dr. Seuss, Oh the places You’ll Go!Image result for pd tulip logo

I love this time of year, not just because the weather is beginning to change although living in Texas sometimes it seems like we just have hot, hotter, drenching sweat or can’t move humidity. Nevertheless, we have gorgeous days like today where there is a clear blue sky with a gentle breeze and perfect 66 degrees. Suddenly, your mood is uplifted and all seems right with the world. But, also because this is the time of year when we raise awareness for PD which means not only do I get to spend more time pursing my passion;  but I get to travel to meet wonderful people who share my same passion and illness. When I travel as I did just last week, to Lubbock to the Southwestern Parkinson’s Society conference, I am always impressed by my agility and ability to flutter along unencumbered by my usual companions (symptoms of  Parkinson’s). At least temporarily until they catch up with me, hard as I try to lose them.

On the way to whatever destination I am bound for, I am always ecstatic by the possibilities especially when I travel with friends or schedule to meet friends along the way. However, inevitably my old friend shows up with its entourage of little dwarfs for the party: jerky, sleepy, clumsy, Reggie rigid, sweaty, and sometimes plain dumb. Once they arrive uninvited without party streamers, confetti or balloons, I am transported back to my cell without as much as a gift  or slice of birthday cake. As the scent of freedom and the image of a woman who is Parkinson free lingers in the air like an afterthought, I begin to choke on my lunch. In the commotion of it all my  inner Diva    pulls out  a song which has become sort of an anthem for me,”It’s my party and I’ll cry if I want to, cry if I want to….You would cry too if it happened to you.”  Invariably, listening to this sound track play over and over (because of OCD) in my head, puts me  in a happy mood realizing the triviality of it all taking into account how lucky I really am to be     allowed to be a part of so many great people.  At times although, It  may feel like we are inside a prison, the truth Is that the cell doors to the jail are WIDE-OPEN, there are no chains and no one is holding us back! we are just as free as ever to do what we want with our  lives.

However, we must remember that in order to be productive and effective advocates, mom’s, wives, friends, exercising  our  freedom with enough energy to bolt out of  our prison cells and comfort zones ( to live a fuller life despite chronic illness – ), we must find time to recharge. We all recharge differently. Despite being an extrovert which thrives on having friends and family near by, I need my quiet time and rest.  Traveling although exhilarating can be terribly exhausting especially when I have to deal with ill behaved companions who show up at the most inopportune times. Thus, when I return I need down time- usually in form of undisturbed sleep away from uninvited guest who   have over stayed their welcome. No matter your method to recharge; it is imperative that you do so. I know that is never easy to carve time away from your responsibilities to step back and pamper yourself. For me it requires depending on others to fill in the gap when resting and rebooting. I would love to be the ‘super’ woman who can master it all with a single bound. However, it is impossible to act independently even when you are  100% healthy much less when you live with a chronic neurodegenerative disease (i.e. PD).  If I should try to go at it alone, I am sure to make many mistakes along the way and make my symptoms worse. Thus,  sleeping 10 hours when possible is not a bad compromise to allow me to sharpen my skills to be better at what I do- writer, advocate, teacher, mentor, mom, wife, sister, and friend. As  I lie down to  sleep,  I think this is in preparation for continuing to dream, travel, and inspire others to become all they are meant to be despite their PD busting the cell doors of their prison wide open to see beyond themselves to help others in their journey as I strive to do as well.

So, in the end knowing that my life has a purpose and I am free to go out whenever I choose out of my own cell to travel and encourage others in their walk with Parkinson’s –  even when I have to  frequently face and deal with my pesky companions who are always at the door looking to crash my party. I will still gladly sing “it’s my party and I’ll cry if I want to..” But, instead of tears of defeat, frustration, sadness, or regret I will happily shed tears of joy and gratitude for the people I have met along the way and the places I will go thanks to my PD. You too would cry if it happened to you!

 

Remember to #uniteforparkinsons

#together4PD  on this April Month

Perils of Parkinson’s disease : By Maria De Leon

“When you face the perils of weariness, carelessness, and confusion; don’t pray for an easier life. Pray instead to be a strong man or woman of God.” ~Luis Palau

The longer I live this illness and work with people who have this disease in their lives whether be a patient or caregiver, the more I realize that when you wage war (in our case against PD) there will always be casualties and unfortunate collateral damage.

The last couple of weeks have been particularly hectic for me trying to juggle family, friends, teaching responsibilities, writing my second book, my mom’s sudden illness, being in a small collision accident, repairing car, and to top it all off- MY OWN ILLNESS!

Any given day can be terribly exhausting requiring some flexibility on our parts in allowing ourselves the time needed to reenergize to keep on tracking. However, there are days and even weeks where life comes at you from all directions and there is no rest for the weary making the recovery when things finally let up that much longer and painful at times.

As I have learned, life does not stop just because we do. Two, just because we have energy and are ready to go does not mean that the people who are close to us are ready to do the same. this can create some resentment on both parts. dealing with these mixed emotions and feelings can be a bit tricky. Sometimes we have to learn to do and go alone although we would prefer some company. We must utilize the little energy we have to accomplish the things we must like caring for our families and then if we have left over energy if someone else wants to come for the ride greeeaat!  if not perhaps next time. We must convey this sentiment to those around us so there will be no hard feelings. In this case, communication is of the utmost importance.

However, there may be times when you find yourself at a loss and having important people walk away from your life because they don’t get your illness. They make undue demands on your time without allowing you flexibility to still maintain a healthy relationship. For instance, one of the biggest problems my PD has caused is being unable to commit to things very often. I do so very hesitantly and when I do I allow myself maximum time as possible to rest before and effort to gather strength to accomplish task. But, life does not care about our commitments, unexpected things will happen which will push us over the edge and sometimes the greatest of intentions go out the window.

Those that are closest to me, have understood this and know I am not always able to keep up so if for whatever reason, I cancel or cant make a commitment they are ok with it without judgement. plus, we all know that sometimes our dystonia’s act up, our voices fade, and our fatigue levels  maybe through the roof and all we want to do is hide under the covers. All these things can fluctuate hour to hour, one of the things I absolutely hate the most! I can be all perky one hour and feel crappy the next so when I say I will call you or hang out later I may not be able to because of illness plus unexpected family drama comes into play as it invariably does in any one.

How do I compensate? I text friends a lot to let them know I am still there for them. with my family I use the same approach as when I travel rest well before I travel to see them and boost my doses of medications to have enough energy to give them my undivided attention whenever possible. (For my husband an daughter since they are home in the evenings I try to make sure I rest well especially if I know my daughter has events afterschool or my husband is working long hours and I have to take care of things longer). When I can, I call or visit; but sometimes this is not enough and issues surge because the other person feels neglected and unloved and may even choose to walk away from your life. This is what I call unfortunate collateral damage because all I was trying to do is fight this disease to keep going while minimizing outside contact at times in order to ensure my survival and ultimate victory.

So sometimes marriages end, long friendships die, and people you thought would be there forever move away. This unfortunately, is the price we have to pay sometimes in order to keep breathing and fighting. As long as you have tried and done all in your power to show those you love how important they are to you, there should not be any regret. May still have feel heart ache so Leave the door open …in case they decide they did want to be part of your life after all and stand side to side with you in the fight against PD. So don’t be afraid of losing something good because you may gain something better! Your inner peace…

 

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We stand today on the edge of a new frontier …
a frontier of unknown opportunities and perils –
a frontier of unfulfilled hopes and threats.
– John F. Kennedy

 

Capitol Hill Preparation: By Maria de Leon

I feel very blessed to be part of a greatly empowered group of individuals from all around the country, brought together by the generosity  and  leadership of MjFox foundation. We all came collectively to D.C. committed to advancing the cause of Parkinson’s disease which affects nearly 2 million people nationally.  Myself and others are thrilled to speak to congress to ensure a better future for our families and for all those of us who live with PD. We are all advocating for a chance to have the best quality of life possible and to remain productive members of society.

I, personally, have been extremely lucky to have started treatment early in my disease by way of my profession and have access to excellent physicians and colleagues who have helped me remain active for the past decade despite my illness. However many in our communities have not been as fortunate to have access to healthcare, physicians /MDS (since many states lack neurologists), or even be able to afford the latest and newest medications and treatments available making living with PD that much more difficult. Hence, I along with others have descended upon Capitol Hill to make our voices heard on behalf of those who are unable to stand with us physically and the thousands of patients in each of our communities back home.

The goal of our visit is encourage increase funding ($36.6 billion) to the NIH to help biomedical research in all neurological areas but mainly in Parkinson’s disease. We are fast losing ground as a leading medical research country with China fast on our heels; if we don’t secure these funds not only will we lose our status but more importantly human lives will be at stake with loss of employments (we have the brightest minds in the neurological sciences and without money will be forced to move on to something else) and loss of quality of living . This money also helps fund our neurologists/MDS in training without it we will face and even greater shortage. We also know that the more minds working on an issue can potentially increase our odds of arriving to better treatments and a possible cure of any given illness i.e. PD.

Secondly, we are requesting allocating $5 billion to CDC to help put the surveillance act in effect. although bill was passed to start a registry of who and where PD is most prevalent it has not been instituted formally due to lack of funding. if we are to make ways in understanding the causes of Parkinson’s in various subpopulations such as young vs. old or understanding the significance of PD pockets as the one that exists in my neck of the woods in EAST Texas a.k.a. ‘East Texas PD belt.’  Without a national registry we can only estimate the number of people affected, which most of us believe is grossly underrepresented, thus we cannot begin to address the needs of the PD community in its entirety and allocate appropriate resources if we don’t know who and where these people are. Plus, we already know and estimate that the number of PD is on the rise and expected to double by year 2040, so chances are everyone will know someone affected by this illness at some point in their lives and may even have to be a caretaker or a patient themselves.  The DoD (department of defense) also needs money to evaluate PD in military with an increasing number of its soldiers returning with Parkinson’s and Parkinson’s like diseases after serving overseas. 

Thirdly, we also want to encourage health care reform that will continue to put the needs of patients first allowing them access to care (this includes physicians and other treatment modalities), to therapies (e.g. PT, OT, and ST) without caps. more importantly, to due away with the donut hole since 80% of PD patients are Medicare recipients on a fixed income and don’t have $8000 in the bank to cover medical expenses like drug therapies. As I have said many times, I firmly believe that patients could do so much better and have greater quality of life if doctors were able to treat their patients without restrictions from the government and allow us as doctors to choose the best treatments available and deemed necessary not what the insurances or government allow.  Having affordable access to the newest treatments would allow millions of people like me to continue the work we do and even continue to have jobs without burdening the system keeping us out of Medicare and institutions.

Finally, the thing to remember is that we patients don’t exist in a vacuum. We could not make it through our days without the help and support of our spouses, families, loved ones and our team of physicians and other healthcare providers. Some have suggested that for every PD person afflicted with this disease 7 other people are affected by it including the immediate family. Thus, fourthly, we would like to support the Raise Act (recognize, assist, include support and engage family caregivers act). Being a full time caregiver puts people who are caregivers at financial disability because they are forced to leave the work force early. this is especially devastating since the majority of caregivers are women who already are at a financial disadvantage compared to men when they stop working not only is their income diminished  but the lose number of credits / earnings eligible for social security upon age of retirement.  since women usually live longer then the burden on society increases. (40 million caregivers who provide 470 billion dollars of unpaid care. 1/4 are millenniums )- thus by supporting this act and making it law we can provide assistance to those of us who have diminished the cost of the government by giving of our time and resources to care for the chronically ill (i.e. PD). this especially important because often times the caregivers themselves (especially as we get older) can also be affected by illness as well.

If you could not join us at the forum this year, you can still do your part by contacting your State Senators and Representatives from your district and ask for the above issues to be considered when voting. Ask your representatives to join the Parkinson’s caucus if not already part of it.

thank you for allowing me to be a representative ….. and let’s bring the  21st century cure act to fruition!  this acts promotes and funds the acceleration of research into preventing and curing serious illnesses.

thank you also for Parkinson’s foundation, Parkinson’s alliance support, and Parkinson’s unity walk.

 

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The Road to Capitol Hill: By Maria De Leon

The count down to PD forum has begun and I have begun to feel a stir in my belly for the chance to meet with members of congress to discuss salient matters regarding the needs of all people with Parkinson’s. (on the side perhaps catch a cherry tree blossoming)

Who would have thought that one summer internship, as a high school student learning the ways of the state legislature, role playing a congressional woman would be of great benefit lo this many years later? Since that time, I have had to rely and recall my experiences in law making as I have become an active advocate for Parkinson’s disease and neurological issues in general at Capitol Hill. I am well known in the office of my State Representative Louie Ghomert  due to my many letters and phone calls. Plus, I have had the pleasure of meeting him in my home town once or twice. I still remember with fondness meeting Tip O’Neill Speaker of the House back when I was just a freshmen at college. I have also had the pleasure of serving as Assistant State Representative  for Texas for Parkinson’s Action Network for a number of years, now merged with MJFox. As Fox volunteer, I continue to serve in that function and looking forward to my upcoming trip.

Long before I was a neurologist or PD patient, I was already an activist of human rights and patient’s advocate. I am just glad that I now get to have a stronger voice and hopefully greater influence than in my youth as to the well- being of those with chronic neurological diseases particularly Parkinson’s disease.

We all have a long list of issues we would like to see addressed and changed in order to better the quality of life of those living with and caring for people with PD.

One of my biggest frustrations and dissapointments in caring and treating patients with PD is the lack of access to neurologists followed by restrictions/ limitations in access to medications neeeded. This last point, in my opinion, is the cause why so many with PD do so poorly. There are many states in the U.S. devoid of neurologists much less movement disorder specialists. One of the things, I would like congress to address is the expansion of teleneurology along with passing a law which allows patients to receive the treatment deemed necessary by their treating physicians not a third party who knows nothing of medicine!

Since 1999, Telemedicine has been used for evaluating and diagnosing acute strokes with moderate success across the country; yet despite its many benefits it is still NOT universally used.  (which by the way as an intern at UT -Houston working in the stroke unit I was involved with the inception of this technological way of evaluating remote stroke patients as well as in the stroke scale development). Of course teleradiology (extremely familiar with thanks to my husband’s profession)  has been in practice for years with great success but still with limitations due to credentialing issues across state lines.

However, in regards to this much debated subject the tide maybe beginning to turn as some who have been on the fence regarding this issue  are slowly conceiding its potential benefits. although much work still remains to be done regarding the rules of credentialing, liscencing, liability, and above all reimbursement which is fair to physicians. Nevertheless, 29 states have already passed laws requiering private insurances to pay for telemedicine delivered services same as they would for in patient care.

But, since the majority of neurological patients especially those with chronic disabilities /illnesses are primarily Medicare recipients, the federal government remains the biggest barrier to its implementation. The government has always had back wards thinking when it comes to the rules of medicine …they pay for nursing homes but won’t pay to prevent patients from getting services, treatments and medications to avoid worsening of symptoms or becoming recluse while becoming a burden of  the state and family. they refuse vital ancillary services like PT, OT, ST but instead they are willing to pay thousands more for a hip replacement which many times in the case of PD patients signifies the beginning of the end. yet, they won’t pay for the medications needed to keep these same people from freezing which cause the falls to begin with or the therapy to keep mobile. Rather than valuing the individual care of those suffering with chronic neurodegenerative disease like Parkinson’s to improve their quality of life, and increase  or continue to benefit from their contribution to society  thus diminishing the burden on society and families; currently, Medicare pays nothing for having a physician care for them remotely via telemedicine but rewards those that visit hospital/ university based clinics as well as costly hospitalizations.This type of care serves only to polorize and increase the disparity between urban and rural as well as solvent and financially needy individuals. It’s no wonder we have few or no specialists in rural communities where the majority of patients reside when the physicians time is not deemed as valuable as one practicing in urban setting.

What about thinking about our patients first ? We could unburden some of our caregivers by reducing their drive time and frequent visits to specialists for instance. What about unburdening the care partners by making patients self sufficient and independent because they are on the correct doses of the appropriate medicines not the one the insurance or government thinks we should take because it is cheaper.

An example, I like many of you am a walking pharmacy. As all of you who live with a chronic illness know that a single change can throw a wrench in the whole well oiled machine causing the whole system to come to a complete hault. This is because not only are we experiencing all the systemic effects of our illness but also deal with the myriad of drug to drug interactions thus finding a balance the more meds we take is a true art. Now when everything is fine tuned, you can breath and go about your life without having to give too much thought to the ever present PD. But what happens when every time you go to the pharmacy to get a refill you have to fight to get your meds? not only is this  extremely stressful but worse if suddenly “the insurance” or “Medicare” decide that it’s too expensive and you don’t need this medication but rather something ‘similar’ because its cheaper. They are essentially saying we don’t care about you as an individual, your illness, nor do we care if you fall, get psychotic, or end up dyskenetic or hospitalized all of which will cost insurance 10x more; never mind the emotional and financial anguish incurred by patient and family of patient as long as they same a buck on the front end. either take what they give you and suffer above consequences or like me many times end up paying a heavy price to keep my health in check and out of hospital. there has got to be a better way.

What I am hoping is that some day people with chronic neurological illnesses like Parkinson’s can have better access to providers and the medications they need. Only then can there really be a true improvement and advance in the care of people with PD. What I am also hoping is that someday I can work side by side other great public policy makers like my friend Ted Thompson (Senior Vice-President of Public Policy for MJfox Foundation) as a Public Policy maker myself doing Public Health fellowship through Neurology once my daughter has left home.

So although sometimes our roads take many unforeseen detours, in the end its the passion within our souls which fuel our destinies allowing us to arrive at the exact destination at just the right time  for the greater good of others. I guess despite PD, I remain a dreamer…after all it is the dreamers who posses the exorbitant imagination that underlies the power to change the world. I like Mr. Smith Goes to Washington intend to prove that one voice can make a difference. Now imagine what we can accomplish together!

Keep you guys posted on my travels and interactions at the hill. for those going see you there and for those not able to, I hope you feel you and your needs will be well represented. 

 

Dopamine Makes the World go Round!: By Maria De Leon

 

 

As we are getting ready to celebrate another Valentine’s day here in America and in other parts of the world, I began to think about this subject of love more intently.

When I was young, I loved watching and reading romance movies and novels. since I am an avid reader and consider myself a movie buff I have a special place for all Nicholas Sparks books especially ‘The Notebook’  and the ‘Best of Me’ as some of you  might also. Ironically, I was reading ‘The Choice’ when I was first diagnosed with Parkinson’s and was having to do a lot of soul searching myself to find out what was best for my life.

However, nothing compares to the old classics like Pride and Prejudice  and Wuthering Heights. I dreamt of finding my own Darcy or Heath Cliff. But, interestingly at the same time as my symptoms of Parkinson’s began to surface I began to drift away from romance and switch my attention to mysteries and crime solving stories which had a much more satisfying ending than riding into the sunset-living happily ever after. I assume this was just a matter of growing older, becoming more centered on reality than fantasy and maturing as a woman.

So, I stopped reading romance novels and began a love affair with a crime solving duo-written by famous author Tess Gerritsen, a medical colleague whom I had the pleasure of meeting in person several years ago at Cape Cod when I first decided to begin my own writing career. But, my once avid interest in literature and ability to devour books in one sitting began to slowly wane without me knowing until my daughter pointed it out. This was the time I realized I needed higher doses of dopamine in my system. Lo and behold, once I began taking Rytary, my passion for  reading returned with a vengeance. I began again reading 2-3 books a week.  But, still not much interest in movies or books with romantic themes.

Yet, as the years with PD grow in number so have my needs and doses of dopamine gradually increased in order to feel like myself mentally once more. Suddenly, with the latest increases in medications has come about a new sense of passion for life  including my love of romance books and movies, making me think that perhaps it was not all about getting older causing changes in my likes and dislikes of things; but rather waning levels of a little chemical known as dopamine.

We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT!

I once again, feel like that love stricken young woman of days of old unable to sleep, eat, but with a profound clarity of mind I thought gone forever from me. I even helped my daughter with algebraic equations the other night and it felt absolutely awesome.  although, dopamine is the final ingredient to our well being, it is love the greatest catalyst responsible for the release of this powerful endogenous substance.  Although, it is absolutely clear that my dopamine levels have increased medically over the last decade, the biggest change in my well being has been in the increase endogenous dopamine. Learning to love myself (yourself) has been the greatest love second only to letting God’s love define me.

We have all heard the old saying : “Love makes the world go round.” But, perhaps it’s the copious release of dopamine and its effects on our love stricken- brains that is the real culprit and mastermind no matter where it comes from- be it a pill, a piece of scrumptious dark chocolate, the voice of a loved, or being in the presence of God.

This Valentine’s Day let your endogenous dopamine have free run by spending some quality time with someone you love.

HAPPY VALENTINE’s DAY everyone…Image result for images of heart shaped balloons