Just like Mike: By Maria De Leon

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!

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

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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..Image result for mother's day quotes

 

 

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

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

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

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

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

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

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

Happy Week to everyone!

Art By Ross Webb

Letting go of perfect: by Maria De Leon

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

 

Remember to #uniteforparkinsons

#together4PD  on this April Month

Perils of Parkinson’s disease : By Maria De Leon

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

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

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

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

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

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

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

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

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

 

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

 

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

 

 

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

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

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

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

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

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

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

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

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

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