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

 

 

 

 

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

Feeling Distressed Today? by Maria De Leon

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Lately, like so many of you, I too have  been feeling distressed- not being able to show up on time to events, or able to attend prior commitments. I used to be the life of the party and a person who could make plans months and years in advance and always able to keep all my commitments. I know that some of you out there living with chronic illnesses and Parkinson’s for a long time know exactly what I am talking about. I have heard many of you complain about the disappointment and distress felt when you or your loved one are no longer included in invitations to parties, gatherings, dinner etc. because you are also unable to always show -up. It’s rather an unnerving feeling knowing that people don’t count on you any longer or even expect you to show up.

While trying to get my head around these feelings experienced by all of us at one point or another when living with an illness like Parkinson’s, I began thinking about my favorite place- the beach.

I you are like me one that enjoys walking down the shore barefooted getting your feet wet as the waves dance around, you probably have taken inventory of common things found on the beach as you have taken many a leisurely promenade.

You most likely saw pier posts covered in barnacles, distressed boats and oxidized iron as you strolled on by. In another time, like us, they were pristine and remarkable to behold. I want all of us to remember and emphasize the fact that although these objects like us (or rather the way we feel sometimes) are worn, tired, chipped, dented and not so pretty to the naked eye are still Beautiful!

This is because, like us, these objects wear the scars of time, hardship, and experience with pride and genuineness. Perhaps, after the waves of PD or caregiving have pelted your body over and over through the years, you too are feeling like these distressed items. Maybe you once had a great career before PD; but even though it might have been a choice to leave it or make necessary alterations- they no longer exist in their previous form.

Like me you are also completely at peace with your life choices given the cards we have been dealt, yet there may still be days when you might feel alone and distressed. Slighted by someone’s lack of understanding, compassion, or feeling excluded may cause the ‘what-ifs’ to creep in.

But, we must not give in to guilt, sadness, much less anger. However, consider this- the only way an object gets distressed is because it has been the best in its field; therefore continuously used and of service. You have been useful and of benefit to more people than you will ever realize and you have the marks to prove it. Just like the distressed furniture found on an elegant and gorgeous beach home invite us to rest and enjoy the view thus contributing to our life’s story.

The same is true for us who are feeling worn out- you have and persistently contributing much to make someone’s past, present, and future better. Your empty seat at a business meeting, lecture hall, medical team, football game is only an indication that you have been instrumental in forging the next generation of caregivers, advocates, volunteers, citizens, and professional people. Remember, just because at the moment you are not at the table of the ‘movers and shakers’ that does not mean that you are done or finished with the work that God has put in your heart or is your destiny to complete until we are all called Home!

Let us instead dwell on the prospect that our ‘what-ifs’ might at some point blend into the ‘what-now’s.

Walk rather, on the beach or wherever you choose, always with head up high displaying your marks of distinction- which are a confluence of both your hardships and victories knowing that the past chapters were purposeful and of great impact. So, don’t try to fit in or please a crowd to avoid feeling distressed instead be your genuine self proudly displaying your years of wear battling PD along with your very own colorful bright pink eggs – like the ‘leafy sea dragons’  who although they are able to camouflage their eggs choose not to.

Go ahead, embrace your Parkinson’s disease or whatever other illness you might have and be yourself. Those that love you and matter will always be around to comfort you and support you in times of need and will always have a seat reserve just for you!

@copyright 2015

all rights reserved by Maria De León MD

 

Cancer & PD: What now ?: by Maria De Leon

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“You  promised me, Lord, that if I followed You;

You would walk with me always.

But, I have noticed that during

the most trying periods of my life

there has only been one set of footprints in the sand.

Why, when I needed You most,

have you not been there for me?

The Lord replied, “the years when you have seen only one set of footprints, My child, is when I carried you.”

excerpt from ‘Footprints in the Sand’-  author unknown

Each time I have had to confront the ‘C’ word I have found solace in this beautiful poem. I hope you can do the same knowing that you are not alone and greatly loved.

Seems like when everything is going well in our lives even with PD because symptoms are finally controlled and we are in our groove doing our own thing life is pleasant and full of possibilities. Seems that the sun might be a bit brighter than usual and the foliage we love is more colorful than previously thought. But, as things fall apart or tragedy hits our lives, we suddenly experience a souring in all our lives pleasures and activities.

You begin to think it is bad enough I have to live with Parkinson’s disease but now I have to deal with this monster called CANCER!

Some may be tempted to do nothing or become paralyzed and consumed by fear of the unknown.

Today, I just want to say “you can do it!” to those of you who are battling cancer in the midst of PD.

You are probably feeling like life is completely unfair, right about now. Well, let me put your mind at ease-IT IS!

However, this is no reason to draw up into a ball and hide under the covers- which I am sure you feel like doing some days more than others. Perfectly normal- I have been there way too many times myself. This my friend is the time to ‘summon your inner Diva’ and give it your all. When we were given a diagnosis of PD, we felt as if our world was ending but nothing compares to hearing you have cancer. Suddenly, the days seem so finite and you begin to take account of your entire life. This itself can be an eye opener because when we are faced with mortality somehow things automatically come into focus and we can clearly see what is truly important and of value in our lives. Go ahead and use this experience my esteemed reader as a chance to grow spiritually as well as an individual.

I like to think of these experiences as pearl makers!

For those of you who are oyster lovers, fresh oysters are a big treat, but  you also know how stubborn and hard the outer shell of an oyster can be. Shucking an oyster can be hazardous but sometimes can prove even more rewarding then anticipated when you discover the treasure within. We sometimes can become hardened by lives circumstances as in living with a chronic illness like PD protecting our soft, vulnerable inner self.

But, it may take another illness like cancer to put a crack in our shell causing us major irritation as a grain of sand does to the oyster which through much pain, discomfort and adversity is turned into a gem- a beautiful pearl!

First realize that you are wonderfully made and everything has a purpose and a time under the sun. Then let go of any anger, frustration, and pity party’s and concentrate on getting better.

This means take care of your Parkinson’s disease to make sure that you are strong physically and mentally to undergo any and all treatments required. Listen to your body- rest when you are tired and eat whatever your body demands -it always knows what we are lacking in. Let your friends and family pamper you and don’t try to do everything yourself or put up a front of being well when you are not. Although, the recovery will be slow and uncomfortable it will be much quicker if you allow yourself time to heal.

When I underwent radiation for my second cancer, I spent the first 6 months just sleeping. I was so exhausted that even watching a movie would  drain me. Even the last 6 months of that year- I relied on friends heavily to help me get things accomplished in the house and so on. Don’t let pride get in the way- we all need help sometimes.

Despite the fact that cancer is not easy to confront and it cant always be beaten- it does not have to get the best of us. we can still be a blessing to others.

Remember, that a spirit who is able to find good in adversity is a true gift from above.

Lighthouses: by Maria De Leon

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…”though I sit in darkness, the Lord will be my light.” ~ Micah 7:8 NIV

I love lighthouses. Whenever I get a chance to travel to an area known for their lighthouses, I never pass on the opportunity. These grand structures are majestic and mysterious in nature for the power they hold; yet despite their veritable importance they always stand aloof, detached and solitary. However, these magnificently stoic architectural works of art, since no two are alike, serve a very distinct function for those in need.

Sometimes, as in living with a chronic illness like Parkinson’s disease we can become so overwhelmed that we are no longer capable of identifying treacherous terrain in front of our own eyes. If we do not heed the warning of others who have a lighthouse view, the passage can turn unsafe and even dark.

Although, caregivers who are mostly women are increasingly stressed in direct proportion to the number of years spent in the “business” of giving/providing care when help is offered, the extra assistance is not readily accepted as was the case in the care of my father. One of the main issues is guilt. Many caregivers feel ashamed or guilty in admitting they require outside help; thus might even turn it away when offered or not actively seek it. The second problem I encountered in my patients as well as in my family was a sense of duty and responsibility to ease the fears, anxiety, and shame the patient may feel as he or she is losing independence and unwillingness to appear weak in front of a stranger. this was my dad’s problem who refused outside help because ‘no one would take better care of him than my mom and I.”

Here are a few tips to help spouses, care-partners, and caregivers recognize and accept outside assistance by helping them work out their fears and ambivalence.

First, we must convey to them that the perspective is much different and broader with a myriad of options when standing at the top of the lighthouse with a clear view of everything than when in the seashore in the dark and feeling alone.

The temptation to strike out on our own is always present and stronger especially in those of us who are used to taking care of everything and everyone. Initially, more so if the person is very adept, like a ship that disregards the lighthouse warnings, will continue to progress and maybe even be successful in the day to day care of their loved one for a time. Ultimately, causing not just one’s one destruction or demise but that of our loved one whom we are trying to protect; because if you are not well then neither will your loved one who then might have a quicker descent.

Therefore, learn to swim parallel to the riptides heeding the following warnings from the lighthouses in your life to a happier more successful outcome for both you and your partner.

Recognize the warning signs:

  1. Irritability– if you find yourself often frustrated at the person whom you are supposed to care for, including neglect or abuse ( verbal, emotional, physical) -NEED HELP ASAP!
  2. Depressed– you are experiencing symptoms of depression yourself lasting more than 2 weeks- especially if wanting to die, harm yourself or worse harm the person whom you care for, this includes wishing they were dead or would die soon.
  3. Others are worried or concerned about your coping– friends, family are noticing changes in your mood or behavior.

If you find yourself in this group:

  • Allow yourself to feel guilt followed by relief- forgive yourself- don’t be so hard on yourself. You CAN NOT DO IT ALL. NO BODY CAN BE ALL THINGS TO ANYBODY!!! ONLY GOD!!
  • Talk to your physician, a counselor, a spiritual leader.
  • Go to a support group
  • Go to a psychologist/psychiatrist
  • Start making plans for yourself again as you redefine your role as caregiver with assistance/new found help.

Resources for Help:

http://www.eldercare.gov

http://www.shipnpr.acl.gov.

http://www.pdf.org

http://www.caregiving.org

http://www.caregiverstress.com

http://www.assited-living-directory.com

http://www.eldercarelink.com

@copyright 2015

all rights reserbved by Maria De LeonMD