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A Decade of Living with Parkinson’s Disease : By Maria De Leon

June 24, 2017 defeatparkinsons1 Comment

He {God} Frames our lives in pictures…

Last few days, I have been thinking about all the blessings in my life; especially since I just celebrated another birthday. I have marbled at the beauty that has taken place in my life over the last decade. As we visited Victoria, B.C. and witnesses one of the most beautiful gardens (Buchart Gardens) I have ever seen while (more importantly) being able to enjoy the fragrant aroma of the myriad of flowers, I knew God’s hands were at work in my life. I then was reminded of the book made into a movie ‘THE SHACK.”

Sometimes, we feel in life while struggling with this illness { and any chronic disease for that matter} that there is so much chaos, uncertainty, doubt and pain that we feel powerless. We may even feel defeated, angry, and unwilling or perhaps unable to go on fighting/living. we feel that our days of being valued and worth something is behind us. just as perhaps the like the quarry of lime stone in B.C. once felt proud of its rich minerals coveted by many. But, then it came a time when Parkinson’s came into our lives and we felt like that quarry seeing its minerals simply dissipate leaving a barren waste of a landscape. Where I once thought I was defeated and had reached my potential, I have learned I was just beginning; just like all of you who suffer with an illness. As I contemplated the pictures of a barren land then beheld the transformation before me I simply marbled at its beauty. So too I have moved from weakness to strength from spiritual infancy to spiritual maturity. Realizing that all that goes around us looks like a BIG mess without any order and wonder why bad things have to happen to good people? Yet, in reality is the combination of seemingly bad things intermingled with good things that allow for growth and blessings. Sometimes, we develop narrow vision focusing on one tree or flower, in our case ourselves or our own problems that all we see is barely a glimpse of a frame of an entire picture. But, when you take a step back the entire scene is revealed. You will then see the beauty of the garden (your life) in its entirety. If you allow it, it might even take your breath away as it has me.

Like the garden I visited, I went from a productive highly regarded person to a barren soil with (I felt) nothing to offer. Yet, all I needed was the right soil to become productive once more. The rich soil has come about from meeting so many wonderful people around the world along the way; while fighting to make lives better by getting involved with the women’s initiative, being part of PPAC and PF (formerly PDF), and the MJFox foundation . Learning to live in the present enjoying each moment as it comes and changing the focus of my lenses outwardly rather than inwardly to me and my problems has allowed me to enjoy the small victories and grow from the defeats. Moreover, my once barren land has once again become rich, in a different way than before, due to the contribution of more skilled and talented people than I to create a beautiful legacy which hopefully can be reaped a 100 years from now when PD will be yet another disease that was eradicated like polio and smallpox.

These areas were once sunken and lifeless…the two pine tress you see on the right are called the “tree of life” and marked the entrance to the quarry.

These gardens began with a single person not being content with the state of their surroundings. Although, Mrs. J Butchart was not about to abandon her home and place she loved she did not enjoy the view and chose to do something about it. It takes only one person with one positive attitude followed by a positive action to begin a whole chain reaction that can bring about change for everyone to enjoy. I believe all of us have seeds of greatness inside of us, we just have to stop ( takes initiative and determination) and make a conscious decision to disallow our window from being framed with negative thoughts and shift our focus to positive ones. One day, you and I will be allowed to see the completed scene in all its glory so don’t despair. Take one step at a time- this garden has taken a 100 years to reach is current beauty-pray, rest if you must, but never give up. so just because we have PD we don’t have to make him welcome and let it take over our lives – we still have control of our attitudes and where we choose to focus our sights on.

copy right@2017

Just like Mike: By Maria De Leon

May 26, 2017June 2, 2017 defeatparkinsons3 Comments

“I want to be like you, talk like you, walk like you…” Disney’s The Jungle Book

As we enter the Memorial weekend I was thinking of all whom have sacrificed for us to continue to have the freedom and liberties we all enjoy in this country…I salute all our military men and women as well as their families for their selfless contributions.

But then there are other types of heroes who have done so much to protect our dignity while living with a chronic illness like Parkinson’s disease that they too deserve our gratitude and admiration.

One of these lovable characters who has stolen our hearts from a young age, is none other than your friend and mine Michael J Fox. He has become the embodiment of PD especially for those of us with young onset.

Seems like ever since I was in medical school training to be a neurologists he has been a constant in my life. I recall when we first heard of his diagnosis and speculated about the cause since he was so young and till then this illness was not associated with young people – at least not as an idiopathic disease.

Then when I was a fellow we at BCM did various gala’s to raise funds for PD. Mike was the guest of honor for one of these events. he had already published his first book and everyone including me was so looking forward to meeting him. and getting my book autographed. But, alas this was not meant to be. he had severe dyskinesia’s by then and was having a difficult time, my heart went out to him. however, one of his managers promised me to get my book autographed but I never got back. (a bit disappointing). yet, Michael appeared live via satellite and did in fact speak to us and despite his severe uncontrolled movements he was as charming and personable as always. Little did I know then that we would share so much more in common both off us developing the illness about the same age. Twenty years later I would finally get the chance to meet him in person and thank him for his contribution and his eternal optimism. nor did I realize I would get a chance to be part of his foundation as an ambassador for public policy issues.

Recently, he was featured in the cover of AARP magazine , an honor he greatly deserves. As I read this, I realize we share the same philosophy of life in dealing with this devastating illness. I, too, agree that top and foremost importance is to have “optimism” which I call faith- knowing things will look up and work out for the better if you just hold on long enough. This has served him well as he continues to thrive despite nearly 3 decades of PD. I, too, feel this is one of the many reasons along with ability to laugh at my self and my circumstances that I continue to enjoy my life despite living with PD. He also finds a good dose of humor to be just as important as any medication prescribed by a physician.

Finally, besides family, love and giving others what you need in your life is keeping busy mentally and physically that make a world of difference in maintaining a positive outlook on life whether you have an illness or not.

Thus, I urge anyone living with PD or any other chronic illness to be more like Mike and enjoy life to the fullest.

Happy Memorial Weekend everyone!

A Parkinson’s Diva Mother’s Day: Maria De Leon

May 15, 2017June 6, 2017 defeatparkinsonsLeave a comment

This statement I think can sum all of us mother’s up especially those of us who are burdened with life’s challenges and illnesses. of course being a “diva” I have to do everything BIG. This means two mother’s day celebrations – well you think it would be awesome but this diva managed to screw up not just one but almost ruin the second one.

First, of all if you happen to be of Mexican decent you celebrate the 10th of May as Mother’s Day no matter what! But, this year my sister informed me that she was just going to focus on one day from now on and that would be the second Sunday as it is tradition here in the States. Given the fact that I had been calling mom, reciting poetry, and giving her gifts to celebrate what we know call “Mexican’s Mother’s Day” I felt a bit uneasy but acquiesced for mom’s sake. This way, I thought, avoid some children calling and not others making mom feel bad. After all this year we had a much bigger celebration in store; since my nephew -first grandchild was graduating college the day before mother’s day and were planning a family gathering to celebrate both.

So morning of Wednesday came – Mexican Mother’s Day and I feel lousy. I had been having cold sweats and chills the night before. Thank goodness I had a follow- up appointment at the doctor already scheduled. Of course, I wake up discombobulated drenched in sweat and realize I have but a few minutes to get ready before I head out the door. as I am stumbling in the closet trying to get ready mom come singing all jolly and happy a mother’s day song to me… I look at her and trying not to make a big to do as I had promised my sister, I uttered some words and kept bouncing off the walls trying to finish dressing. I got some steroid shots and antibiotics after spending all morning at doctor’s office because mycoplasma infection is going around and I was pretty sick. I was beginning to get ill tempered which only worsened with shot of steroids I received then was aggravated by the fact that all of my family including my sister had decided to make a big to do about this particular Mexican Mother’s Day. Naturally, I felt like a heel for being the only one I might add who happened to have mom in her house and not do a thing…so I managed to salvage the day by taking her out to dinner and having a girls night out- Diva style!

Next graduation came – we started celebrating the day before with a visit to the hair salon followed by a night which included awesome food, much laughter, modeling new clothes and roasting the graduate and much teasing for throwing me under the bus. But all was forgiven with my sisters’ delicious red velvet and cream cheese cupcakes which were to die for… even my husband who rarely eats sweets devoured a cupcake in a single bite and liked his lips and fingers and asked for more.

When today came round two of celebrations took place ‘Diva’ style…I have to do everything GRAND! but the biggest gift and source of joy come from still having a mom who is healthy and strong and looks more like my sister than my mom and of course the whole reason I am called mom is a precious teenage girl who has all of my unconditional love and who told me today that although, she seems not to hear everything I say.. thanks PD! she is always saying I did not speak like I think I did or say something I know I said and even asking me to repeat things over…

YET, ALL the I lOVE YOU’s come in loud and clear! and she is glad to have me as her mom crankiness, PD, and all…

What else can any mother ask? Nothing but to know that her children are secure in their mom’s love!

Although a bit late, I say Happy Mother’s Day to all the Parkinson’s diva out there who make PD look easy compared to motherhood!

many blessings..

Adventures in Dental Hygiene: By Maria De Leon

April 28, 2017June 6, 2017 defeatparkinsonsLeave a comment

” Don’t cry because it’s over, Smile because it happened..” Dr. Seuss

For those of us living with a chronic illness like Parkinson’s disease even the most mundane of things like getting your teeth cleaned can take on a whole new level of complexity. There is a lot of mental preparation to coordinate appointment to correspond with the time when medications are at their peak of effectiveness. what if we cant drive ourselves? There is something else to coordinate. As I was walking into the dentist office yesterday, after pre-medicating myself for the migraines that are sure to come on after sitting in a room with bright lights glaring right at my eyes- I need my sunglasses next time; I encountered two Parkinson’s patients ahead of me both of whom had severe tremors one with a horrible anterocollis (dystonia bending neck forward- ouch I cant even imagine!) I remembered all the letters I had to write for my patients when going for dental appointments about what medicines to take before and what sedation was safe. Since you guys know its impossible to work in a small confined space like the mouth when someone is shaking all over the place- so sedation is required. Plus when there is severe dystonia of the mouth, face and neck this also adds another level of challenge for the hygienist and patient. Because both of these patients required conscious sedation, to do what I assumed was simple cleaning, they were dismissed for another day when the doctor could see them himself to do work.

What used to be a routine thing for me it has become something I dread because the sheer pain it causes me. Aside from the migraines, the last time I did my teeth cleaning my jaw was so dystonic and sore that I was not able to eat normal for a couple of days. although I took muscle relaxants and Tylenol plus Motrin I ate like a chip monk for a number of days only able to use my two front teeth to chew and bite without triggering excruciating pain and worsening the dystonia which required repeated massaging to loosen up the masseter muscles, platysma, and sternocleidomastoid muscles ( neck and jaw muscles). it is incredible that a simple action like maintaining jaw open for a short period of time can trigger such dystonia. So this time I was savvy, I took not just my migraine medicine but also Tylenol and Motrin preemptively and an extra dose of dopamine agonist. yay ! no pain – although those dang light and music in back ground causes sensory over load due to Azilect predisposing or increasing light sensitivity. Next time I am bringing ear buds and shades!

The new thing this time was a bit more trouble with having head pulled back in chair is tendency to choke with saliva and water pooling and not able to swallow normally- making me think about the difficulties of those of us with severe swallowing problems – may need to adjust head position and up doses of medication plus may also need to be sedated to avoid that feeling of being drowned. I am just glad I don’t need any major procedures at this time. Perhaps may need to do more frequent suctioning or leave suction in place instead of intermittently- to avoid gaging. This is something that needs to be discussed with dentist and oral hygienist before hand.

ever since I had my first surgery many moons ago my jaw was dislocated and with each subsequent surgery this problem has worsen slightly but I believe the culprit for moderate TMJ ( temporal mandibular joint) inflammation and displacement which causes constant clicking of jaw when chewing something hard or if have to open mouth very wide like having teeth cleaned is my neck and jaw dystonia. I am constantly massaging muscles and popping my jaw in place. but this constant dislocation leads to I believe more frequent migraines and fullness and pain in ear. Time for the next intervention. so I have been researching my options. I already take beaucoup of medications. Botox works extremely well for dystonia and headaches but would not want to inject my jaw and make the muscles weaker and more easily to dislocate. Therefore, the approach is a multi-tier – I found exercises to strengthen jaw weak from PD- which I am trying to do as I write…but not as easy as I thought. May have to start with thinner pen because hard to move my jaw side ways or front and backwards at this time. see video in web below:

http://www.sovanightguard.com/blog/8-jaw-exercises-to-relieve-tmj-pain/

The 3rd option I may have to incorporate if Botox and exercises do not improve the problem is to get a mouth guard which I am not looking forward to since Dentist suggested I would need to wear all day in order to prevent deterioration of joint. this would entail using a head gear- not sure I like to look more dorky than already am and have more slurring of speech and drooling than what I have at times with PD. However, this may have to be done since I am beginning to have poor alignment of my teeth and develop an overbite – all thanks to oral facial dystonia from my split personality friend the evil Dr. P

Will keep you posted. make sure you don’t neglect your dental hygiene and if having oral facial dystonia and dyskinesia’s seek immediate help before it causes permanent damage.

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

April 24, 2017June 2, 2017 defeatparkinsonsLeave a comment

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

April 13, 2017June 6, 2017 defeatparkinsonsLeave a comment

“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.

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

April 7, 2017June 6, 2017 defeatparkinsonsLeave a comment

“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!

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