Category Archives: Parkinson’s Disease

Unraveling Complexity of Being a Chronically ill patient: by Maria De Leon

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A decade ago, I would have sworn I was the healthiest person; sure I had minor inconveniences like thyroid cancer at young age and migraines since childhood. But my life on the whole was great! Not that is not great now just different…I took one medication for my thyroid and every so often I needed a migraine abortive medication. I rarely set foot on the premises of a pharmacy. I would take my thyroid mediation like clock work without much fuzz. I NEVER heard from insurance, pharmacist, or other doctors regarding myself. of course, I spent countless hours dealing with all of these regarding my patients. each year, the number of hours I spent on phone and written letters on behalf of my patients steadily increased by now most doctors with a busy practice like mine spend a great deal more time trying to get around the bureaucracy and paper work involved just to get patients what they need to get better. the most frustrating thing besides arguing with insurances about approval of much needed medications was arguing with them about approving benefits to cover their care especially in terminal cases. Too often the help came too late.

Now, I am a walking, breathing, veritable pharmacy – my purse has grown over the years just to accommodate the ever growing number of medications I require to function; which invariably keeps expanding. Each time I think I have stabilized, there pops something new to throw a wrench in the system. Just the other day, I spent the morning at yet another unforeseen doctor’s visit due to acute labyrinthitis from an ear infection and guess what? More meds were thrown in the mix. Now, I have been assigned both a nurse and a pharmacy specialist to my case.

First, where were these people when I needed them to help out with my patients care? Secondly, in theory having a past medical illness or chronic disease  is not supposed to matter in the coverage of an individual by any insurance. Yet, in reality all of us who live with a chronic disease is being analyzed by some committee somewhere as to how much “resources” we are using. These resources which include medical, laboratory, ancillary, and pharmaceutical services are precious commodities which yearly are contracted to the lowest bidder. While, the premiums and out of pocket expenses continue to go higher as the coverage for those commodities continue to go lower for those of us who happen to have the misfortune of having a serious medical problem. Everyone who lives with PD and other chronic illness can testify to this fact.

After laughing out loud in disbelief for having NOT one BUT two specialized people dedicated to help with my care, I began to shake my head regarding the absurdity of our medical system. After speaking with these well meaning individuals who did not realized, I was a doctor, neither one had any answers to my REAL problems or concerns. No! I DON’T NEED SPECIAL EQUIPMENT, TRANSPORTATION, OR HOME SERVICES- ALL I NEED IS APPROVAL OF MY EXTREMELY EXPENSIVE MEDICATIONS AND TESTS so I don’t require ANY of the above and won’t end-up in the hospital as many of my patients have in the past due to poor coverage of medications and frequent changes dictated NOT by real medicine rather by pure economics!

So, after an hour each, they both politely stated they could NOT help with my problems. They could not convince the people they work for that these medicines are keeping me functioning and that perhaps might even help me return to gainful employment and at minimum are keeping me out of the hospital and getting worse medical problems if they were only able to approve the PET scan my physician ordered to make sure my cancer has not returned. But, to no avail. The answer was ALWAYS NO! But, will call you again next month at the same time. No wonder I like that new song of Meghan Trainor ” No.” “My number is no!, my name is no!, my {everything} is NO!” when I talk to the insurance companies…so do we need to let it go?

I hope we DON’T let it go otherwise we as a society will continue to hurt and suffer the consequences and end-up in a state not very dissimilar to the one in Mexico and other countries where socialized medicine has taken root.

I still cringe at the terrible experience my family underwent while my grandfather was hospitalized for a GI bleed in my hometown in Mexico. First, after having to transfer him to a “private” hospital because there were no medicines or even much staff at the government owned facility-the specialist he needed, not unlike what is already happening here in many smaller communities, was 5 hours away in another state and could not come for several days. So, he continued to bleed for which he required 14 pints of blood which by the way the family had to procure on their own because the government has no money to maintain a blood bank. He ended with 2 mayor strokes subsequently- which of course I witnessed personally and was helpless to do anything about since there was no treatment available for what he needed.

I am afraid that as the population continues to age and incidence of dementia, Parkinson’s, strokes and other chronic debilitating diseases begin to rise the quality of life for each individual will steadily decline in this country despite all the major medical and technological advances this country has unless we step up and demand change. please contact PAN/MJfox  @ http://www.parkinsonsaction.org  and after June 1st @ http://www.michaeljfox.org/policy

-let them know its not ok to have a monthly struggle just to get the medicines your doctor prescribed or have to choose between basic necessities and affording expensive medications which now include many popular generic brands which in some cases cost the same or more than the brand! and remember to just say No!

copyright-2016

all rights reserved – Maria De Leon MD

 

 

My Experince with the Evolution of Retail Prescriptions:By Maria De Leon

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Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. Used to be that I could just call and have my prescriptions delivered to my office no questions asked. Then as the number of medications began proliferating due to my Parkinson’s diagnosis I had to start doing drive through. First, no problem would request pick up and a handful of bottles would be given to me at a reasonable price. Then came the next stage…”please move to next window,” wherein I would sit there patiently each time longer and longer as the pharmacist would have to argue with insurance about coverage with an ever increasing escalation of price and a decrease number of pills given. This eventually led me to having to park and go into the pharmacy to discuss alternative options. Then came the inevitable forced changed by new Obamacare to get Medicare. Although, I had perfectly good insurance which although expensive it allowed me to get my medications without much hassle other than increasing yearly out of pocket cost. But suddenly because of my diagnosis, I was told to be “fortunate” to qualify for Medicare so my other insurance simply refused to cover expenses because under new law I WAS eligible for this so called wonderful privilege of having Medicare! After two months of trying to get the RIGHT Medicare coverage, I obtained the one government assigned to me NOT one I chose because I had too many illnesses. Was this new law not supposed to give insurance to all people independent of health status?

Well, I got insurance. I guess they forgot to qualify as to what sort of coverage people like me with chronic illnesses in reality will obtain!

Now, no longer can I get the medications I want, when I need but is a monthly battle of wits between me, the pharmacist and the insurance company taking a couple of hours at times just to get my meds and sometimes even after this length of time even with letters from the insurance company stating I have approval of medications in hand the insurance company refuses to honor this contract leaving me with two choices due without medicine or pay upwards of $300 per prescription.  All the while, as I sit there I see person after person of all ages and walks of life get the same comment…” Sorry, your insurance did not approve this prescription” or “you must get authorization from your physician first,” as if physicians sole job was to spend all day filling out the hundreds of Forms requested on a daily basis by their patient clientele. No wonder doctors are currently experiencing more burn out and frustration and disappointment in their career choices than ever before. They have no time to treat patients or to practice their calling because filling out mundane useless paperwork. web_banner_2_300x250

Each time invariably they will say how desperately they need their medication for management of current illness requesting retail price without insurance and the great majority have a sinking saddened look as they walk away without their much needed prescriptions. This is because in the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of in some cases being more expensive than brand name drugs. The average annual prescription cost has reached new heights of over $11,000 which according to the experts is nearly 75% of the average annual Social Security benefits.

If these trends continue people are simply going to stop medications which are no longer affordable increasing the taxpayers burden of having to not only pay for the extra cost of medications; but also for an increase number of institutionalized people with chronic disabilities like Parkinson’s disease and other neurologically progressive illnesses such as stokes, and Alzheimer’s which will invariably result as their disease progresses due to absence of adequate treatment. As it is now, my opinion and that of many of my colleagues is that many Parkinson’s patients are not well controlled and suffer unnecessary side effects and disabilities due to the contra into in treatment options dictated by each individual insurance plus the increased limited availability of samples or assisted drug programs for patients to qualify under.  For instance although there are no generic alternatives to Azilect many insurances insist of altering doctors recommendations of use of this medication for an older drug Edepryl which has a generic form known as Selegeline HCl. Although both are in same class, they are altogether different in composition. Azilect is much better tolerated and effective MAO-B inhibitor while the former acts as an inhibitor to both A & B.  Another  example for which I believe so many patients suffer from dyskinesias is the persistent use of older traditional levodopa/carbidopa compounds in lieu of newer intermediate release formulations which are shorter acting and have more side effects than newer compounds in my experience. pdftulip

These newer formulations like Rytary are upwards of $ 500 a month no one can take this at these rates especially if they have to take another 10 medications half of which are almost s expensive so they opt for cheaper drugs with higher side effects decreasing their quality of life in the long run. And since we can’t even rely on cheaper generic drugs to offset  the cost of brand name medications and specialty drugs we are threading very dangerous waters leading to serious implications not just for us with chronic diseases like PD but for the entire health care system which will inevitably implode on itself at this rate unless we do something.  As I said many times, we must lobby for our rights to have access to the medications that our physicians feel are necessary for us to have a true quality of life  and not what our insurances or government think is best for us! Lest we become a nation over run with vexation and cost in attempting to care for an increasingly growing elderly population with increased  neurological diseases like PD. Take action and start demanding change today by writing to your state and national congressmen and letting PAN  (Parkinson’s a ion Network) / MJFOX  what the real concern is for it makes no difference if we have a hundred new PD compounds no one can afford except the extremely wealthy.

So, I take my daily Rytary samples with a great deal of gratitude and introspection since it is affording me to feel like myself again after 10 years of battling with this disease. but as I do I am wondering how long I will have to continue feeling like ‘me’ because when samples dry up no longer will I be able to afford to take this expensive drug. I will continue to pray for change in the system for all who have the right to access to medications that allow them to be themselves once more. In the meantime, I will also continue to make use of my time, efforts and  productivity to advance Parkinson’s awareness, fight for better treatments along with a cure with equal affordable access of these treatments for all who currently live with PD.

Together we can #EndParkinsons

copyright-2016

all rights reserved – Maria De Leon MD

 

 

Women & PD: by Maria De Leon

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My thoughts regarding my life with Parkinson’s as an MDS  mirrors those of a great warrior when she quipped  “it feels as if this life is not my life. It is a second life. People have prayed to God to spare my life and I was spared for a reason. To help others”…(with the same struggles)- MalalaIMG_1996

 

It has been a couple of weeks since I wrote down my reflections and introspection; but for a change rather than musing out loud I have been amusing myself meeting so many wonderful, valiant women with PD around the country. These women from Hawaii to Arizona have inspired me to continue advocating for women all around the world. They are evidence that the well rooted common public opinion regarding women as the “weak” sex should be reconsidered. Especially, when it comes to the notion of how women living with Parkinson’s should act within the realm of this progressive degenerative illness. Yes, it is true that still we have a great deal of work to do when at least a third of the world still treats women as property and as second class citizens; yet among each culture and ethnic background we find examples of women who are courageous beyond measure who are willing to stand up not only for themselves but for others. Women like Malala who despite her young age, she was willing to put herself in harms ways in order to defy conventional wisdom and the abhorrent treatment of women in her country earning her the Nobel Peace even at such a young age. Her story reminds us that a strong voice in the midst of adversity and imperceptible roar cannot be silenced.IMG_2001

Although, we are not in this country by any means putting ourselves necessarily in the path of death, as some women in other parts of the world are, trying to alter common place treatment of women within the medical confines – still takes a certain amount of bravery. To go against the firmly held beliefs of the masses requires discipline, fortitude, and incredible conviction …

As we are on the heels of Parkinson’s awareness month- I want to  encourage all women who live with PD on a daily basis to remember that their story is also my own. Thus, I am not unique in any fashion or form all I do is encourage other women to become empowered with knowledge and become self advocates of their own destiny and health care. There is great power in togetherness and standing unified in a cause for the betterment of all women and their health issues with PD. No longer do you as a woman with PD should face challenges alone unique to your gender since half of the population is of female gender.

Things to remember about PD in women –IMG_1982

  • Women tend to be diagnosed at least two years later
  • Hormones play a role – since early hysterectomy increases the risk of PD but also women who are menstruating have worse symptoms of PD during their menses and their period alternatively worsens due to having Parkinson’s
  • Women experience more dyskenisias than men; this could be due to increase sensitivity to side effects as most women are more sensitive to similar doses given to men but also because of the weight difference (more body fat in women- causing medications to linger longer in body)  and metabolism difference.
  • Women have more depression and men have more behavioral problems
  • Women although have less dementia then men they have worst quality of life overall. Perhaps, because they also have increased risk of strokes.

However, there is an increase in hope since women are beginning to bond and find ways to support one another, lift each other up and  advocate together for changes in the diagnosis and treatment of women with PD. For this reason we are working on getting a women support round table at this year’s WPC in Portland. Let me know if you are planning on going!!

Soon we will have flyers that you can share with others regarding  the issues women with PD face. Two sources already  exists – one is with http://www.pdf.org  and “life in balance” a newsletter for people & families living with PD provided by Parkinson’s support solutions (Azilect program) issue 1-2016 – http://www.parkinsonssupportsolutions.com ; 1-866-880-8582

 Join the team. Together we can #endParkinsons.
 

 

 

Gathering of the PD Goddesses: By Maria De Leon

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Calling all the Parkinson’s goddesses and divas out there..

I am glad to say that we are finally making waves in this world of PD. As more institutions are beginning to address the issues relevant to us women living with Parkinson’s disease. So many of us have felt marginalized by this illness which can sometimes rob us of our independence as well as our dignity. We have lived in the shadows for too long feeling ordinary. But, I am here to say that as I live and breath and battle with this neurological disease as so many of you do I have found the strength, thanks to my “Parkinson’s Diva” fellows and supporters, to transform myself. My physical appearance nor has my diseased changed but one day I just woke up and voila!…I had become a full fledged Parkinson’s Diva.

After spending many years worrying about my curves, my hair, my thighs, and so many other physical imperfections as well as fretting over my career… I have found that having PD has had a liberating effect on me. Looking at the mirror, I am fully at peace with everything about myself even those pesky grey hairs and even though I walk slower, not as graceful and my smile is sometimes a bit crooked I feel blessed and irrationally radiant!

Yes!, this may be the dopamine making me a bit manic since  most people would agree that I am only “a legend in my own mind.” However, the friendships I have forged along this journey are real. Perhaps, it is true that “birds of a feather DO flock together!” if that’s the case I am glad that there are a lot of other divas out there – legends in their own mind as well. But, the truth is that I have been gathering divas for a long time-  we have cried together, laughed together, been broken up and put back together, giving, sharing, caring and loving one another has made us all sisters of the same plight and because each and everyone of you are strong and courageous and infinitely capable of making a 101 dishes with the lemons life has thrown your way – you my friends are goddesses in deed!

So no matter where you go, just listen for the buzzing of camaraderie among women with PD  who have shared tears of joy mixed with sorrow fighting for another opportunity to reinvent themselves; there you will see greatness!

In the end we must remember the word’s of one of my favorite poet’s  and a grand- goddess herself, Maya Angelou who quipped: “I can be changed by what happens to me. But I refuse to be reduced by it!”

 

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P.s. I am extra happy since I found out that my book which bears this blogs name ” Parkinson’s diva: a woman’s  guide to Parkinson’s Disease.” will be available at WPC2016

 

 

PD Women Initiative Challenging Conventional Wisdom: by Maria De Leon

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“The happiest people I have known are those that gave themselves no concern about their own souls, but did their utmost to mitigate the miseries of others.” Elizabeth C. Stanton

The other day I was watching the movie titled “Suffragette starring Meryl Steep about the women’s moment for equality in the late 1800’s in London. Seeing all the atrocities committed against women made me think of today’s world and our own women initiative in the Parkinson’s community. For years, women fought to obtain the right to be heard, to be law makers, to be leaders whose voices were meant to be heard above the roar of the crowd. Yet, sometimes I wonder if we have forgotten the sacrifices of those women that came before us? it seems some of us have settled into a quasi state of ‘laissez-faire’ allowing the same atrocities and women discrimination to go on around in and out of our communities. it saddens me to realize that even after a century since women obtained ‘equality,’ we are still considered or at least treated as second class citizens in many realms of society. Unfortunately, much to my chagrin one of these areas lies within my realm of expertise-Parkinson’s disease.

However, recently I have begun to see a stir in the women with PD community in attempting to once again challenge preconceived notions and decrease the disparity that exists in treatment and  general care when it comes to women’s issues. Although, we have gained the right to be heard as women, we still fall short of receiving the same type of treatment as our male counterparts with PD. Women with PD take longer to get diagnosed, see fewer MDS specialists and even when they do they are not offered the same treatment – fewer times get offered the standard treatment of care- DBS-(deep brain stimulation) compared to men with PD. Even when both genders present with the same symptoms such as behavioral problems- independent of the type “men were more likely to receive antipsychotics while women receive antidepressants, according to a study looking at behavioral differences in PD by gender.

However, the longer, I live with PD and work closely with those afflicted by this chronic progressive neurodegenerative illness and their families… I feel a great power surging among the women with Parkinson’s. The  women with PD initiative like the suffragette movement is starting a snowball effect among all women of all  neurological  and medical diseases not just PD. Like a snowball rolling down hill it is destined only to gain strength the further it rolls. The courageous women with PD and their families are fighting their own battle like in days of old to uphold the right to be heard to fight for equality of health care for the things that matter most to all of us women. I am proud to stand in the ranks arm to arm with the many PD women who refuse to be ignored and ostracized and are taking charge of their own lives.

Our purpose is to live and live well with a devastating illness yet be able to do it with such gusto that PD appears to others like a mere inconvenience because we are strong and capable women of caring for our families, children and our parents. But as such strong willed women who take courage and comfort from the women who have gone before us demand our given right to be heard thus be able to receive the same standard of care.

It is in such capacity that we women with PD are trying to make waves and change the status quo once more challenging conventional wisdom regarding women’s issues in PD. So, the other day I was glad to have had the honor and pleasure of meeting with other fabulous woman in the battle against PD across the country in California thanks to social media. We had the chance to laugh and share with one another our concerns, issues and challenges with this so called Parkinson’s disease. We got to discuss the Parkinson’s diva -a women’s guide to Parkinson’s disease book.We vowed not only to uplift one another but to spread awareness in the women’s PD community as well as in the health community advocating for a holistic approach to women’s issues. Thank you to Debbie, Darcy, and Sharon and all the other great women for allowing me into your home and keep up the great job you are doing in your community.

sources:

*Hubert H. Fernandez, MD, †‡Kate L. Lapane, PhD, *‡Brian R. Ott, MD, and *Joseph H. Friedman, MD: (2000) “Gender Differences in the Frequency and Treatment of Behavior Problems in Parkinson’s Disease.” Movement Disorders.15(3). pp. 490–496.

 

Valentine’s Day in the Parkinson’s Diva World:by Maria De Leon

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All of us who are moms and have children know that the day we first heard those precious cries our entire worlds changed. Where Valentine’s Day used to be a day I looked forward to get prettied up and taken out to a fancy restaurant, since my daughter came to us it’s all about her.

When she was just a toddler , I loved the enthusiasm she would have for trying to get ‘something’ for her daddy and me to show us how much she loved us…usually some type of art design she would hand make. she would wake up at the crack of dawn to jump on our bed to please hurry up and get up so we could open our presents! (sort of like Christmas in reverse!) the joy in her eyes was all I needed. This was love personified. I have always been thankful to God for this lovely angel He put in my arms!

Over the years, it has evolved from giving us her sweet cards that said ” I love you mommy! with letters missing or upside down to me finding ways to make her happy and show her how much she is adored. We would make heart shaped candy necklaces and bracelets and get Barbie dolls wearing valentines colors or get matching teddy bears that would say ‘mommy and me’ and even matching necklaces with same inscription.

It’s no secret that I love fine chocolates – so of course I look forward with anticipation to this day to previewing all the wide selection of deliciously scrumptious chocolates available. I am a particular fan of salted dark caramel chocolates, but the thing I look forward to mostly is getting some delicious chocolate covered strawberries. It seems that as my lovely daughter has grown into a beautiful teenager, she too has developed her mom’s palate for fine chocolate. So where once, I could sit down and enjoy such treats paired with a sparkling champagne its more difficult to partake of such indulgent behavior  since I became a mom of a teenager. I scout out the Internet and stores for deals of the best fine chocolates and make sure that I get everyone a box yet upon arrival they all quickly disappear and I am left with wrapping paper and the scent of chocolates in the air.

Chocolate covered strawberries disappear even faster than the chocolate without a lingering scent left behind, followed by “I thought they were mine!” Me being not so much of a kitchen goddess no matter how many times I read the instructions to melt the chocolate for the strawberries at home, I always end up burning it- so I have to wait till someone that can actually FOLLOW INSTRUCTIONS WELL do them for me like my mother, or brother or wait till a special occasion and they are sold at the store.

But, invariably the bond between mother and child is strong because in the end, she will come to lay down next to me in bed and say like before when she was a child: ” I love you Mommy! you are the still the best mom in the world, even if I don’t say it much! Sorry, I ate your chocolates but I got the ones you love right here!” followed by a big hug (which I am thankful for since does not happen much nowadays since she is a teenager).

But, Valentine’s would not be complete without the awesome, always, clever gift from my daughter….my very own diva  lipstick by none other than Louboutin – in red of course! Now, I a truly feel like a Parkinsonsdiva!

Sure I have a fancy (RED) lipstick but above all I have the love of the one that matters most to me in the world- my daughter!

Happy Valentines Day to Everyone! 

Wishing you much love today and always!!! Enjoy something sweet to boost that dopamine-& hug your loved ones today- hugging is the best way to release happy chemicals in your brain & Don’t Forget something RED in honor of Women’s brain health!

xoxo- Parkinsonsdiva

 

 

 

 

Queen for a day! By Maria De Leon

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The other day mom and I went out for a stroll and decided to stop and get something to eat at one of the local restaurants for brunch. As we walked in to a packed restaurant, I noticed everyone was wearing a tiara. One lovely lady stood out as more royally than the rest, she had a larger crown and had a purple robe on- she Must be the Queen I said to myself under my breath. as we were being escorted to the only table available in the middle of the room full of tiara wearing women I suddenly felt naked and out of place without mine. I leaned over and whispered to mom, “if I had known it was wear your crown day, I would have brought mine. ”  But then I remembered that a Diva  does not need a tiara to feel special, she is unique and special all in her own way. Nevertheless, I was thrilled to see a room full of women who enjoyed life as much as I did and wanted to know what this event was all about? Any club where you get to go out in public and wear a tiara is just my  kind of club as long as it empowers women.

Mom and I had a great time wearing our own invisible crowns sitting among all the other divas who were sipping mimosas and laughing out-loud just as we were. Of course as soon as I got home I had to find out who these women were. I discovered to my great astonishment that we had lots in common, how I had never heard of the Pulpwood Queen Book Club I could not believe.

Turns out this was a nation wide phenomena of a women’s book club having their girlfriends weekend in my own home town which only made sense since the group was founded not far from here in 2000 by Kathy Patrick who now runs “Beauty & the Book”- to depict that reading is always in style. so like me, they too believe that knowledge is not only powerful but sexy and attractive and a way for women to conquer anything they put their minds to it even PD as long as its done with  distinction and style.

What I love about this group especially its founder is their willingness to hear the voice of women and help them share their message across the country while getting a nice coiffeur. You simply can’t beat that.

I then thought that all you beautiful Parkinson’s Divas out there and I should start acting more like Queens even if for a day! Not in the nasty kind of way, demanding and having everyone do everything for you while you spend all day at spa getting massages, along with manicures & pedicures. Although, this may be a very nice treat once in a while to help relieve some of the stress of living with PD or caring for someone with Parkinson’s disease. Rather learn to walk with class and confidence as a true diva/queen should to show PD who is really in control.

Queens are always

  • polite and kind towards others. Sometimes hard to do especially when we are in pain. take a deep breath and count to 10.
  • they enjoy and feel great pride and self-worth in helping those in need, especially other women with PD.
  • learn to deal with the mundane and not so fun stuff of our disease with pizzazz.
  • think like a queen – only positive thoughts- we are after all the sum of our thoughts. you have been through a lot in your life and you are still standing, so a little PD will not topple you over.
  • practice your smile- makes you more beautiful and exercises those facial muscles as well.
  • always look dashing- ready for any occasion- don’t forget your favorite lipstick or scarf, etc.
  • finally remember that what ever set backs you may have it is only a stepping stone for greater and stronger victories.

Finally, remember it is the Queen who protects the king (and his house) in the game of chess as in real life!!

In the meantime, working on spreading the word on women’s issues in PD through a women’s book club.

 

Fast & Furious Life of a “Diva”: By Maria De Leon

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The year has taken off at a fast pace and I am barely able to keep up…my goal of returning to the pool and walking has not quite panned out- already beginning to feel the weight of it all. I had a wonderful holidays with my family for the first time in almost 10 years I actually felt like celebrating. I was still basking on the joy of tradition and family when life takes an unexpected turn. I should be used to this but with this illness it seems that I become less able to cope with sudden changes and stresses leaving me a bit out of sorts.

My mom had barely left when I receive a call she was hospitalized- no chance to rest. I did a mad dash to Houston and as I approached the hospital a sense of doom, grief and Deja-vu took over me particularly as I walked into the main corridor heading up the elevators to the same floor where my dad had last been hospitalized before the bomb was dropped on our lap. My mom was now across the room my dad had last occupied and we were being taken care of by the same nice hospitalist whose demeanor saddened as well as he entered the room and saw my mom laying there. Upon discharge the attendant was not certain who the patient was since both of us were in pretty bad shape.

Of course after discharge mom could not stay home alone so back to my house we were. So it has been a comedy of errors taking turns caring for each other- the worst days were when she was extremely in need of my care and I could barely function. The day was especially trying as I had to go up and down the stairs to tend to her. By the end of the day I felt like I was crawling up the stairs. I kept reminding myself that at least I got a weeks’ worth of exercise, as per my account!

Trying to get her down from a high bed to the bathroom when both of us were having various degrees of vertigo and dizziness was something to behold. Equally difficult is attempting to sleep with her since she needs rest but the stress of it all has kicked my REM behavior into over drive. More medicines for me and a bit more for her.

Then the hardest part came telling her she has a brain tumor – although most likely benign still a “BRAIN TUMOR.” Having had my grandmother die from a similar condition does not sit well with me. I try to remain optimistic and not let her see my fear and worry. I crumble a bit more inside as I imagine not having her around, I gasp for air. Even though I try not to think about it, I wonder is this also my future – something else to look forward to?

So I do my routine mental status exam to ensure no interruption of brain function but I seem to be struggling more with word finding than she is – takes me 3 hours to recall the name of a “hummingbird.” I am exhausted!

I just pray for strength to care for her and for complete resolution of her tumor. Meantime, I keep holding on to Hope and faith and focusing all of my energy on my beautiful daughter. I say to myself “Que Sera, Sera!” As I drift to sleep with thoughts of ….sitting by the beach in Hawaii.

Woman to Woman: How to be a Successful Parkinson’s Mentor Even When You Think You Have Nothing Else to Give. By Dr. De Leon

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photoDo I Have the stuff mentors are made off?

First, when you are diagnosed with a chronic illness like Sacha and I have as countless other women out there who have been given similar prognosis have wondered at one time or another whether they still had something to teach? When an illness such as Parkinson’s disease first strikes invariably we feel at a loss and maybe a bit like the wind has been taken out of our sails. Some perhaps have even felt like their best years were behind and their dreams were now over so how could I imagine asking anyone to become a mentor?

Well, I want you to close your eyes and think of someone who was there for you at some point in your life when you truly needed a friend or some guidance-are you smiling now? I bet that person brings all kinds of warm fuzzy feelings. Now, you are really thinking, I REALLY don’t have the RIGHT stuff! But, when you stop to think about it that person that took time to see you through the tough times and encouraged you to grow and develop your talents was not a super human being – wonder woman with a cape and truth lasso leaping tall buildings performing heroic deeds although they might have seemed like that to you. Instead these wonderful creatures we learned to lean on, depend on, trust, and bring into the fold of our families started as mentors giving the best part of themselves in such a way that they helped us become the very best we could be. We all have unique talents and skills which could be used to build and foster others talents. After my diagnosis, I thought I would never be able to work with Parkinson’s patients again and ten years later I am more deeply involved in the lives of so many people with PD throughout the world in a level that I never would have thought possible. Because I was fortunate to have many great female role models, one of whom continues to play a vital role in my life even after the change in career and onset of PD that I feel compelled to emulate her (Dr. Mya Schiess) as a great woman healer and mentor.

Remember, the best way to succeed in life and be truly happy is to do something meaningful for another human being- this is a biblical principle.

When you become involved in someone else’s well- being you suddenly begin to heal as well. Give it a shot. Don’t worry about being qualified. No one is ever truly qualified until they begin the journey. All it takes is a genuine desire to help others.

Still not certain?

Can you answer any of the following?

  • I have fallen, failed and been hurt
  • I have endured disappointments
  • I want a better world for my children
  • I too live with a chronic illness and feel a need to help those with similar plight

If you answered YES to any of these you have the STUFF to be a Mentor…me

 

What is the role of a Mentor?

Now, that you have seen how truly gifted you are and how you may begin to feel better about your lot in life through mentoring, you are still wondering if you have what it takes. After all, you don’t have much energy these days and sometimes you feel like all you do is go to the doctor or take care of others already being a mom, a wife, and a million other tittles imposed by those around you.

I would suggest start with practical things that would benefit someone with your same plight or interests. For instance, if you have another woman you are trying to help (can be someone older or younger) may offer her a ride to the store or doctor if she needs it and your schedule allows it (you are already going in that direction or to the same place). This way you are being of assistance to another and not costing you much time or effort. Yet, the sentiment is extraordinarily regarded. So be a servant.

Sometimes, what we really need is for someone to hear us. This is especially truly when we are first given bad news. Use the feelings that you felt and allow yourself to empathize and sympathize for some else in those same shoes. We don’t really expect anyone to solve all of our problems or cure our illness, but a shoulder to cry on is a much appreciated and highly valued thing. This simple act of listening and encouraging someone is typically the first step to a long meaningful relationship returning confidence and worth to the person in need. You can do this over the phone or skype but much better and more effective in person. Be a listener.

At other times, it may be required that you help someone make important life decisions based on your experience and their abilities – a great deal of finesse is required as well as love for the person you are helping for you will not be merely dispensing advice but actual counsel with purpose of making their lives better. A wise counselor always listens more than she talks. Use open ended questions. Be a Counselor.

Finally, you have been where your friend has not and know the perils and victories. Lead the path with love allowing her to make her own decisions. You cannot impose or insist that they do things your way to arrive at the same destination. They must try out things for themselves feeling what is right for them so they can be successful. Learning to find their own unique voice, talent or skill to share with the world that will make them shine just as you shine despite your illness. Sacha’s talent is art, mine is still teaching. Be a Guide.

AS we begin to discover what makes us different in the world of PD from our male counterparts, we should also begin to build up one another as women encouraging, lifting, educating, so that the women with PD that come behind us can be the next leaders, counselors, advocates, guides, researchers and friends for the next generation of women with PD who may even unlock the key to the CURE!

Remember ” A woman is like a tea bag- you never know how STRONG she is until she gets in hot water.” Eleanor Roosevelt

@copyright 2015

all rights reserved by Maria De Leon

New Year’s Resolutions for a Life with PD worth Living!: By Maria De Leon

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Happy new year to all my friends, family, and loved ones! I would like to thank all of you first of all for choosing to walk with me in this PD journey through life. Having wonderful friends such as you by my side is what life is all about. As we commence a brand new year full of possibilities in which every page is waiting to be written, I would like to leave you with a few thoughts to make your journey with Parkinson’s, or whatever chronic illness, or struggle you are facing in life a much richer and fuller experience.  My learning after nearly a half of century of living can be summed up in five parts.

5 things I want us to keep in mind as we make our mark through the New Year.

  • Stand still
  • Listen
  • Learn
  • Have Faith
  • Give back

 

These things I have observed to be the fundamental elements for a life worth living. Although a few skeptics along the road have question my positive attitude and optimism in life as well as my experience with Parkinson’s. A few people especially women have told me that I must have led such a ‘charmed’ and ‘happy’ life to be so full of hope and optimism. As I nearly chocked on the caramel I was chewing on, I thought “charming” and lucky was not a word I would have ever used to describe my life. For dear readers, I have dealt with my share of pain and disappointments and seen the ugly side of human nature yet I choose to believe that everyone has something good in them and everyone deserves a second chance.

First, I was born with a severe birth defect which according to the doctors I was NEVER going to walk so I spent the first year of my life in all kinds of casts and contraptions. Yet thanks to the love of my mom, grandfather and the grace of God, the right doctor was found to correct my problem. Ever since I started walking I have not stop and don’t intent this PD to stop me either!

I also have had multiple cancers on top of the early onset Parkinson’s diagnosis which was an irony in itself.  I had a hard pregnancy making me unable to bear more than one child, yet the joy of being a mom of that one precious child has made up for all the pain. I lost several loved ones within a two year span in which the two most precious beings in my life were included. I tended to thousands of Parkinson’s patients through the years many of whom I watch die and have wept at their bed sides along with their families. I wept even harder at my dad’s bedside when he was suddenly taken ill with cancer.

Even though these are but a few of the struggles I have faced in my life, they serve witness to the fact that like you I too have had a life full of challenges of ups and downs. Sometimes life led me to dark unfamiliar places. I have struggled physically and emotionally with gut wrenching burdens which have stretched me to my limits and then pushed me further still. But, through it all I have learned that without these low valleys and dark places, I would not have found my strength, courage, and faith nor enjoyed the peaks and mountain tops as much. Each and every one of the experiences in my life has served to shape me into the woman I am today who is able to write to you and share her experiences with you to help guide your path with this chronic illness and give you hope and a ray of light for the dark days ahead.

As I recall the words of that one woman who sneered at me as she was perusing my book looking at me sideways exclaiming “what gives you the authority to write about PD?” Simply put: MY ENTIRE LIFE JOURNEY with PD! So I am extremely glad I had the courage, thanks to some of those people who have gone from my life too soon, to write “Parkinson’s Diva ” Perhaps someone will find laughter and love once more in their life just as I have despite having and living with  Parkinson’s disease. If only one person has felt better because of my book, I have achieved my goal.  This lady unfortunately was only seeing in me the end product …a woman who has finally learned to accept herself just as she is flaws and all; who has learned patience thanks to PD, when you move like molasses you have no other choice!diva pic

Dear friends, I hope this year you work on being happy with yourself first before making anyone one else happy. This starts with being able to stand alone in solitude and fine tune your hearing to that small still voice inside of you, for mine has never let me down.

Learn to listen– I often quiet myself by first listening to my own breathing and heart beat until they are in sink and quiet. Take time to stand still at least once a day and replenish your thoughts and your energy, Then learn to listen to everything around you like the laughter of your kids, the rustle of the leaves, the whistle of the wind, the sound of the waves crashing on the beach, the silence after the snow has fallen. Particularly listen to other women. I have women friends from all walks of life and all ages because everyone has a story to tell that is powerful and unique and every one of these precious women has accomplished many feats most by the time they reach early adulthood. Make sure you absorb some of their goodness, soak in their wisdom for it is absolutely priceless. I had the absolute pleasure and privilege this past year of meeting and working with some of the most wonderful women both through the Christian women’s Corp & the Women & PD Initiative. Both had so much knowledge and wisdom to impart it was amazing.

Learn from these women, from your parents, your friends, and from anyone you come in contact with in your journey this year, for they too have a story and a lesson to share with you if you listen. Learn especially from those who love you and particularly from those who don’t. Learn to walk in someone else’s shoes as well as to see life through someone else’s eyes. Learn that in order to make a difference you must first take a chance.

Most things that were invented had to be thought up by someone who had to believe in his or her dreams even though no one else could see the same vision; plus think about it they had to have some kind of necessity, be in a low point in their life or be in the dark otherwise there would be no need to grow or change or invent anything. So with this comes Faith that things will work out for the best- that the darkness serves a purpose to hone our night vision. With faith comes hope for a better, happier tomorrow so don’t lose faith!

Finally you have to be willing to give back to others. Funny thing is that in order to grow and develop and actually enjoy life we must stop thinking about ourselves and actually think about others needs first. So this year I want you guys to renew your passions or find new passions, redefine your world, expand your horizons dream bigger dreams, have higher aspirations, broaden your visions, and  stand up for something worth fighting for like helping those less fortune than you in your PD community.

Provide caregivers a helping hand, fight in behalf of the kids with PD mom’s, aid the moms living with PD. Go ahead and confront the things that scare you such as living with a chronic illness and embrace it to the fullest. Make a difference in someone’s life, you can do this by joining me in being part of Women & PD initiative as a mentor, teacher, counselor, and friend. If you follow these guidelines throughout the year, you will discover as I have that by getting involved and truly listening to others and yourself you will change your own life. You will also be replacing laughter for the many heartaches as I have done many of which nearly broke me. However, now I have joys and rainbows where storms once were punctuated by many friends smiling at me along the way.

This 2016, I admonish you all to leave your comfort zone and take a leap of faith by doing that which scares you…interestingly once upon a time I was terrified of public speaking until I was forced to give a commencement speech in front of 1000 plus individuals. Now I do public speaking for a living. Go ahead I challenge you to Join me in me in daring to be yourself and a true “diva”  or “divo” (one that does extraordinary things with their natural talents) living a life with Parkinson’s disease worth living.
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