What I have been surprised to discover while living with Parkinson’s disease? By Maria De Leon

Leave a comment Standard

The other day, I dreamt of God above – He smiled and said: ‘don’t worry, your faith is strong; you know you have been here before. Just gaze upon my face and everything shall be alright.’ I smiled at HIM and softly uttered a broken Hallelujah! – Alleluia. Alleluia
Although, my faith IS strong and has grown immensely over the last decade somedays it seems that the dark clouds in life want to hang on just a bit longer than usual putting all our beliefs to the test.
This seems to be the case for me over the last month.

So, I had to remind myself of how far I have come and all the challenges I have endured in the past which have only served to make me stronger. I like to think of the peaks and valleys we have gone through in our life as a mechanism to help us get through things faster and with greater ease. (Just like the brain network is connected via myelinated sheaths which help disseminate information quicker from one area to another- if we would interrupt the myelin, information would surely get delayed and we might even find ourselves stuck. Such are our past experiences, the more we have overcome the greater ease we have of moving forward…)

I have learned that God is strongest when I am weak.
I have learned that I am much stronger than I once thought and much more resilient than I ever gave myself credit for. I thought I would never survive the first diagnosis of a chronic illness, nor giving up my practice. Yet, here I stand …
Despite years of trying to hide my physical flaws, I have learned to embrace those blemishes, scars, and all. I have learned to focus on my most attractive features which are my smile and my “Spanish” eyes.
I have learned to love myself strengths and weaknesses. After all beauty begins when we first decide to love ourselves. At times, we must learn to turn our weaknesses into strengths. For instance, once upon a time I was extremely shy and afraid of speaking in public (hard to believe I know). I would become paralyzed with fear of being judged. These days however, I embrace it fully. Public speaking has been a source of great joy in my life as I seem to have become the voice for women with Parkinson’s disease and other chronic illnesses.
I have learned that we all have the inner fortitude to do what you could not do before- I am learning to wait in silence and developing beaucoup patience!
I have learned that you will feel what you did not before- sympathy, empathy, kindness, love, gratitude…
I have become knowledgeable on things I never knew.
I have also learned that inner beauty never fades.
I love being a mom.
I am creative after all.
I am a trendsetter and fashionista at heart.
I am excited about living life to the fullest.
I cherish my time with my girlfriends.
Beauty and inspiration come from places we least expect.
All women are strong beautiful and able and we were fiercely made for a time such as this.
So go ahead find your passion and bring out your inner beauty by discovering new horizons and gifts within yourself. Despite what you may be facing today- you are not alone, you are loved, and this too shall pass! You just have to hold on long enough and keep the faith.

@copyright2018
all rights reserved by Maria De Leon

Parkinson’s disease and dealing with other medical problems: By Maria De Leon

Leave a comment Standard

“When the winds of change blow, some people build walls others build windmills”- Chinese Proverb

Lately, I have been a bit distant from my social media sites and blogs and I must ask for forgiveness. After a month of joyful celebration on the occasion of my birthday, I have discovered that even the good times can end up in flames and the best things can go up –up-up into the stratosphere in a split of a second. At that time, we stop and try as best we can to reach and hold on to the good times and fond memories before they are completely out of our reach till the wind changes once again bringing us back the things we love.
So, at present the winds of my sail have slightly shifted into some rough waters and I am struggling to hold onto the elusive butterfly of good health ( as much as one can have good health in the midst of a chronic illness like PD) waiting for a favorable wind once more.
Funny thing is that as we all live with a chronic illness, we tend to worry about things that will most likely never happen; yet the things we never see coming can take us for a loop and blindside us especially when they come unexpectedly on a Tuesday afternoon as most unexpected things do.
After a month of pancreatitis followed by a wonderful month of birthday celebrations, reuniting with old friends and working on the things I love writing, speaking, sharing stories over coffee with other fellow Parkinson’s friends, I got a most unexpected call. You have a “mass” in an unexpected place- my liver.
As my life came to a scratching halt, I have come to realize a few things.
First, how lucky I am to have a wonderful husband, daughter, family as well as wonderful friends such as you guys.
Second, despite the fact that in this country we are experiencing a terrible health crisis, we are still very lucky to be able to have choices regarding what doctors to see, multiple treatment options even for those of us with low socioeconomic means due to many charitable organizations which help many individuals and families pay for costly treatments. Recently while at the medical center in Houston, I happened to run into a patient who told me she had traveled alone from Australia after selling a great deal of possessions just to be able to make the trip to this country. She said she came here because ‘the US has the best doctors and medicines in the world!’ She was visibly desperate to find answers and new forms of treatments for her cancer. She told me that in her native country although medicine is socialized and free for all, the waits are long and they don’t have many choices …it is first come first serve and one treatment type for all. In her case for her type of cancer. I felt so sorry for her and wished that I could help somehow. After all we know, prognosis and treatment plans really need to be individualized because not a single one among us is the same as the other. Even when we have the same disease or cancer our responses to treatment are entirely unique partly due to our genetics, our sex, as well as our cultural imprinting and belief system.
I referred her to several programs which typically help people with cancer not knowing if they could help her since she was not from this country. All the while hoping and praying they could offer her the assistance she needed to help her chances of recovery and fight her cancer with the best treatment options available.
Little that I know that a few months later I would find myself in a similar situation trying to find the best doctors and treatment options for my own disease. Unlike her, I do have insurance in this country but if it turns out to be a malignancy I will also need some form of assistance from some charitable organization since according to my healthcare provider I am already in the catastrophic range for this year. I thought I was doing great!
Thus my worries at this time are concentrated only on finding the best team of physicians to help me get back to doing what I love; spending time with family and taking care of people with PD. Thank God for the fact that although out healthcare system is in desperate need for an overhaul, we have many entrepreneurs who are willing to help fill in some of the gaps. Nevertheless, we still need our government to step up their efforts so that we don’t end up in a country such as Mexico where medicine like the rest of the country is ruled by the have’s and have –nots creating a sense of laissez-faire attitude in most of the population- why seek care if won’t be able to afford treatment?
Third, dealing with my doctors over the last few weeks, I have once again confirmed the need for self-advocacy. This seems particularly true in this day and age of high physician burn -out and demands within the practice of medicine. This undue stress is imposed especially on those who treat chronically ill patients. That is because the patients with the most medical problems like myself eventually become Medicare recipients. As with any government agency there are always more regulations, restrictions, and demands on the physician. These demands have in turn left physicians stretched so thin that more things are apt to fall through the cracks then previously over the last 2 decades. Abnormal tests can be over looked easily at times…
Hence, when dealing with chronic illnesses have a voice that can advocate on your behalf if you are unable to. It takes time and effort particularly if you are already feeling bad to keep up with doctors’ appointments, insurance bill’s, tests, medications, and so on. Keep a diary, ask specific questions, keep problem issues to no more than 3, make more frequent appointments (don’t settle for I will see you in 6 months if you have ongoing problems), when getting tests done ask specifically what this test will show or help with and during follow up ask again by name the results of that test (e.g. what did my MRI brain show?). If you know you are waiting on test results make sure you schedule to follow up also if you have gotten a new treatment. Always call if in doubt or with questions. Remember to practice patience, which is the most difficult thing to have in the midst of bad news or new procedures. All things in medicine take time especially the more complicated the procedure, the history of the patient, or the findings – which is always my case. Most likely you will have to wait weeks for an answer even when all things are running smoothly – keep your cool, rest, eat well and follow up until you get the desired answer.
This too shall pass and the wind will once again blow in our favor!
when the wind blows don’t be the one fighting it rather be the one to harness it and find a new direction…

@copyright 2018
All rights reserved by Maria De Leon

4 Easy Ways to de- stress and Improve your Well-being while living with a chronic illness like PD: by Maria De Leon

Leave a comment Standard

For those of us who live with a chronic illness like PD by now I am sure you have discovered as I have that stress whether physical, emotional, or physiological can have a detrimental effect on our mood and on our symptoms. It is for this reason that many people with PD feel as if they have fluctuating symptoms on a daily basis despite the fact that Parkinson’s is a slowly progressive neurodegenerative disease.
Learning to deal with stress and finding ways to prevent it in a healthy fun way can lead us to a happier more balanced life. Subsequently, by managing our stress we may be able to experience less ups and downs with our already complicated illness.

The first thing we can do to improve our tension levels is listening to music – but not just any music. A specific type of music like baroque which is characterized for the most part by 60 beat per minute tempo also known as ‘larghetto’ not too fast and not too slow – in fact just right.
This coincides with the rhythm of our hearts at a calm state because in fact some scientists believe that a heart rate of 75 and greater, which was considered within normal range in the past, carries a higher risk of having a heart attack.
Not only will this tempo relax us by calming and synchronizing our breathing with our heart rhythm but will also improve blood flow to our brains. Subsequently, this may be one of the reasons listening to this type of music increases our concentration. As we all know, poor concentration is a big issue in those of us with Parkinson’s – part of it could be that we are so run down we don’t even process the information around us. But being totally stressed can also play a major role. Multiple studies have shown that music with 60 beat per minute causes an immediate sense of well-being and even boosts our IQ levels. This was seen on subjects tested while listening to baroque music. Moreover, when we feel relaxed, we are more prone to have a positive outlook. A positive outlook on life is everything, I always say. When we have a bright outlook makes more likely to consider all the alternatives giving us more sound judgement avoiding rush decisions. I know personally when I am tired or in pain, I don’t want to be bothered with details or complex decisions. Sometimes when I find myself in these situation, I tend to rush to an answer without considering consequences fully leading to more problems down the road. I have learned not to make any important decisions including filling out paper work which is vital. However, if baroque music is not your cup of tea then find music that appeals to you but with similar tempo.music notes

Secondly, laughter is a great stress reliever. We have all heard that laughter is the best medicine. Not only does laughter strengthen our immune system but is a great coping mechanism to relieve pressure. I often say that I laugh because it beats the alternative. Because laughter plays such a crucial role in healing, many scientists have looked at laughter to assess its benefits and effects on tension. Interestingly, laughter decreases stress differently in men and women confirming once again that gender is a crucial topic we must take into account when prescribing treatments for various illnesses. In men laughing actually decreases the stress directly by dissipating the distress. However, this does not occur in women, rather by laughing we women gain insight into a situation which then helps us cope better with the stressful factors. Despite differing mechanisms, the end result is the same – we both feel better with a good laugh. Go ahead find some friends and laugh or simply learn to laugh at your own mishaps as I have. You will feel better, I guarantee.

Thirdly, painting– I have never been much of an artist. However, even though I still am far from considering myself as any good at painting I have discovered that you don’t have to be good at something to derive pleasure from it. You don’t even have to paint your own art work rather simply fill in the colors of someone else drawing to feel the benefits. I think that this is why coloring has become so popular. We remember the pleasure coloring as children, well as an adult I have regained that same sense of accomplishment when coloring a drawing turning into my own masterpiece. Art therapy in all is forms is something I have fully embraced over the last decade as a useful alternative therapy to dealing with neurological diseases for many reasons. One of which is a sense of empowerment one achieves through the use of colors, and creativity. Moreover, painting and other art therapy can not only provide a momentary distraction; but it also relaxes the mind when you set everything else aside and focus on the task at hand. Besides being fun, it is a great coping mechanism through which emotions can be effectively worked out releasing anger, anguish, and frustration with a few strokes.kandinsky21

Fourthly, enjoy nature / green – when I was a young girl living in Mexico, my grandmother always used to say to my grandfather that she needed to go out to the woods to look at the trees and the greenery around. She would get so excited every time she saw how green everything was. Well, it turns out my grandmother was wiser than most. Subconsciously, she knew that seeing green or being surrounded by nature provides an excellent calming effect on the brain and body. Since green is a color reminiscent of nature, spring, growth, peace, and financial prosperity is believed to diffuse anxiety and have a calming effect by producing a harmonious sense of well-being. Being surrounded by green forests, trees also improves concentration and clarity increasing creativity by actually improving our brain waves. Improves reading ability …perhaps that’s why I and many feel so alive in spring when everything is blooming. I guess, I inherited my grandmother’s intuition because my writing room is green (pale yellow greens and beige greens are the most soothing). In 2010, a study in Environmental Health and Preventive Medicine found that a stroll in the woods versus the same time spent strolling in the city had a greater impact of decreasing stress hormones like cortisol and lowering blood pressure. This simple fact, maybe why I like Central Park strolls or near parks in the city and in the woods like my grandmother. nestledown

Go ahead start decluttering your life and getting rid of unwanted tensions and preventing worsening of symptoms due to stress by using one of these simple methods of relieving tension in your life. I have celebrated a huge milestone in my life this last week for which I am forever grateful to my God. As such, what better way to be reminded of His grace in my life than to feel His presence admiring the beauty of creation surrounded by thousands of giant sequoia trees.
These threes have not only stood the test of time but weathered many storms losing a branch here or there but never lose its hope it will stand for another 100 years.

Sources:

Stress relief from laughter- it’s no joke. Mayo clinic
psychological effects of forest walking in healthy adults

@copyright 2018
All rights reserved by Maria De Leon

Dealing with the 7 Invisible signs of living with chronic illnesses: By Maria De Leon

Comments 2 Standard

“Love the people who see you when you are invisible to everyone else.”

We all know that having a chronic illness like Parkinson’s disease makes dealing with all other aspects of our lives much more complicated. Handling our personal, social, emotional and financial situations can turn into a bigger challenge, if we don’t learn to recognize and deal appropriately with the symptoms others can’t see like pain, anxiety, irritability, and depression. In turn these issues can lead to more serious problems of isolation, strained relationships and agoraphobia.

Learning to live and cope with all the ups and downs of a chronic illness takes skill and a great deal of support from our friends and loved ones. However, sometimes is the invisible symptoms which cause us a great deal of pain and hardship especially if we are not in tuned to these problems as a family or person living with PD.

I don’t know about you; but sometimes besides not feeling well physically I just wake up angry or sad for no apparent reason. When this happens not only is it tough to deal with being off mentally, but also having to act and carry on activities of daily living like nothing is wrong. So what happens? Either we take it out on our loved ones by becoming extremely irritable making it hard for others to get near us or being on edge and exploding at the slightest provocation. In this scenario everyone hurts and suffers. Best way I have found is to isolate myself for that time as to avoid hurting anyone’s feelings. Sometimes a good cry for us women is all it takes. But, in my experience, this is a sign that something is amiss with our bodies and brain function such as our levels of dopamine have faltered or we have an underlying problem such as a cold, urine infection or dehydration. Meditating, listening to happy tunes if sad and faking a smile till you feel it always works for me. Sleeping is also another wonderful remedy for when things are not going well or seem out of sorts. Once you wake up from a good nap, things always look brighter. Otherwise feeling irritable can create much friction especially if you have children or other people who depend on you for care. Hug your children, spouse and loved ones this also eases the irritability.

Other times irritability comes from being in pain. Sometimes we can barely stand being inside our own skin much less deal with any outside factors or demands. Don’t be afraid to talk to your doctor to provide adequate pain medication so it does not turn chronic. Many times increasing the levodopa is all that is needed to handle the pain. However, if pain is due from dyskinesia’s causing strain on your neck or back then the opposite is required with possible DBS and other treatments to manage symptoms.

If we are to avoid having strained relationships with those who matter most, we must learn to communicate our feelings without projecting on others our frustrations and disappointments. Since pain tends to color our perspective and alter the way we view things – we have to tell our loved ones “I am in pain right now and having trouble dealing could I have some time to myself or can we not make any major decisions at this moment.” Tell them you appreciate their concern but need alone time or time to heal without blaming them for what is going on your bodies. Unfortunately, many divorces and break ups have occurred because not only do we take out our frustrations on those closest to us when we hurt but we feel that they are not doing enough to help us. However, must remind everyone that it is about us not them. If you are honest and open they will understand and give you the space you need. If you do this and they still leave because you are not dedicating 100 percent of your life to them, then they do not belong in your life. Let it go and move on. Embrace the people who love you and stand by your side unconditionally.

The other thing that happens is that as we begin to have physical problems with PD like freezing resulting in falls and injuries, experience loss of conscious due to orthostatic hypotension, someone looks at you funny while on the floor rather than helping, or says something because you are too slow,or shaky making you feel no bigger than the size of an ant. instead of hiding from the world the rest of your life to avoid feeling this way again, let us find ways to improve the symptoms cause so much social anxiety which could lead to agoraphobia if not treated properly. This sometimes can be a subconscious reaction to having several bad or traumatizing experiences in public in which you felt publicly humiliated. So the mere thought of venturing out and having another episode occur in which you feel helpless induces anxiety and downright panic. I have had a mild experience with this early on when I was dealing with issues of orthostatic hypotension and disequilibrium. I fell down one too many times and was stuck unable to get myself off the floor when alone that for a while I would not phantom the possibility of going anywhere alone much less on a plane. this was devastating in so many levels. As with any fear, the key to conquering and overcoming is baby steps into that which causes the anxiety; sometimes medication is required and other times behavioral therapy might also be warranted. The main thing is not to let the fear and anxiety take over your life. Find a way to get back to doing the things you love independently or if needed a friend that will reassure you to continue being active.

Even though, most of us have experienced all or some of these at one point or another in our illness, the key is to recognize them, talk to your physicians about them asap and also with your loved ones to prevent them from robbing you of your happiness and peace of mind.

It’s time to remove our invisibility cloaks and be seen for the wonderful women and men that we are!

@copyright 2018
all rights reserved by Maria De Leon

The Beauty of Self-Care: By Maria De Leon

Leave a comment Standard

“Self care is not self indulgence. Self care is self respect and an act of survival.” Lorde

I am not sure about you ladies, but as of late I have been wobbling on an emotional precipice between the recent negative medical news of my husband, my daughter going away to college (perhaps far from home in a world where there appears to be increased chaos at each turn), my mother’s declining cognitive status, and my own current relentless wave of medical trials and tribulations. Sometimes as my dad would often say, “too much is too much.”

My natural inclination is to push forward on all fronts no matter how I feel. As a physician and a mother, I am used to taking charge during a crisis and stepping up as the caregiver placing my own needs at the bottom of the list. However, throughout my years of living with PD, I have discovered that not prioritizing myself however only leads to a slippery slope. My bottled up frustrations, stress, and malaise have a tendency to creep up to the surface like an erupting volcano seeping through every pore of my being (Curse you Parkinson’s disease, migraines and whatever other medical problem I have) causing me to become the true epitome of a fiery dragon. Just like a volcano can no more contain its pressure so do our feelings must find a way out – unfortunately when they do they cannot only be explosive but extremely lethal causing devastation in its wake, as we have seen in the news last few days with the eruption of Kilauea.

One of the things I always talk about in managing this chronic and any chronic illness is self-care and prioritizing once self. Easier said than done especially when you got all the burners on.
So, in the midst of all these new challenges, I have had to force myself to find time for me to heal in order to continue caring for all those who depend on me and get to the root of my ailments. An-empty-lantern-provides-no-light_-Self-care-is-the-fuel-that-allows-your-light-to-shine-brightly_-Unknown

Of course, this is much more difficult when you look and feel like you are ten months pregnant carrying twins! Yes, I got a partial small bowel obstruction-yikes! How did this happen? I was doing so well? For starters traveling lots, not keeping schedule on meals, along with increase stress did not help and possibly aided in my current predicament.

First order of business besides getting rid of relentless nausea and vomiting and prevent dehydration while reliving obstruction was to disconnect from the world- hence my lack of presence in social media as of late. I have also committed myself to spending more time with my daughter talking…this time is priceless.
Reminding myself and my family that frivolous time spent on one self like reading a favorite book, doing art, laughing with a friend, watching a favorite movie, listening to great music, or simply resting actually does more for the healing process than medications at times.empty cup

I have caught up on sleep. Allowing myself to sleep as much as my body needed to recover. I am doing better but not 100% back to ‘normal’ yet. Even in my “pregnant” state, I have continued my breathing treatments and meditation. These have helped me tremendously in calming my pain, anxiety and discomfort of having a huge belly.
I even had a manicure just to feel better- bright pink! Plus, even though I have been feeling like crap for the last 3 weeks, I found that doing some talks over the web helped my mood and my overall predisposition. Bringing smiles to others always brings back positive vibes into our souls.

Remember, that if we want to be ambassadors for those who have a chronic illness like PD and bring positive changes, we must first be good to ourselves and be happy behind the scenes when just you and no one else is watching. Do the things I have recommended often, like take time for yourself every day, make time for family and loved ones, do things that make you happy, pamper yourself (there are many ways of doing this without going broke). If you feel that the world is spinning out of control, go ahead and inject some kindness back into it.
Love to hear your own self-care strategies in dealing with chronic illness.

self care
Xoxo
Parkinson’s Diva

copyright@2018
all rights reserved by Maria De Leon

Parkinson’s mom diary: Maria De Leon

Comments 4 Standard

” A mother is she who can take the place of all others but whose place no one else can take.” unknown

To my dear readers – first i want to thank everyone for making this journey more fun.. and for making this site one of your favorites.

As we near the month of May when we celebrate mother’s day both in this country and other countries around the world such as in my native Mexico, I thought i would write about being a mom with PD.

All of us who are moms know how wonderful and equally challenging is to be a mom; just when you think you have gotten the hang of a stage or phase – our children go on and change. Now imagine having a chronic illness like parkinson’s disease where although no objective fluctuations are noticed or documented we know for a FACT that fluctuations in our daily lives are a part of living with a chronic illness. Sometimes we just don’t know how we are going to feel the next minute much less the next day or month. As my daughter reminded me today when we were having a conversation in the car on way to school, “mom, I am glad you are feeling well these days but it wont last, is just a matter of time!” when i gave her a side ways look she replied: “you know is true. that’s what happens with your disease.”

As much as I protest this statement and try to reassure her (or rather) that this time will be different, i know that as long as i have PD i will have ups and downs which will interfere with my ability to perform my motherly duties. (secretly praying these deviations are few and far between).

However, these roller-coaster episodes has made me reevaluate my thinking and recommendations for women who have PD and want to be moms.

Motherhood as I said is a wonderful experience but is not for the faint of heart because each child comes with his/her own challenges and gifts to deal with; so having more or less is not necessarily the answer.

I was lucky I already had my daughter when I got diagnosed. Yet, because I was so young she has had to live with my illness practically her entire life. Plus, as a mom I have had to struggle much more than I would have should I had been a healthy mom in raising her and being a constant in her life. I was blessed to have friends and family to help me care for her especially during those times when the medication made me so ill i could not drive or the disease was so bad I could not stand to be touched much less cuddle her- something that broke my heart and still to this day feel guilty about.

So deciding to have a child once you are diagnosed with PD is not an easy think to decide and should not be taken lightly. Although, as far as me know fertility does not decrease with the disease and health of fetus is not affected by having PD, many of the medications currently used to treat the symptoms of Parkinson’s are contraindicated at least partially for lack of information on the short and long term effects of the fetus. Further, some of these medications also can be passed through the milk making breast feeding difficult after delivery.

Another thing, one must keep in mind is that PD symptoms can worsen during pregnancy. But, assuming that you are able to carry the pregnancy to full term there are many other issues to consider. Remember this is a progressive disease after all. You must consider not only the stage that you are in at the time of conception but be able to look ahead at the  age you will be and the stage you might be at when your children reach certain milestones like going to elementary school, high school etc. you must also consider your support group – is there a reliable one? Does this include a supportive spouse/ partner? In my early stages of disease I would not have been able to care for my toddler had not been for my husband stepping up and being mom and dad something not every father can do or is willing to do.

We all think about the sleepless nights with infants but for me the hardest years are once they become independent. The problems are bigger, more serious, and require much more involvement from a parent in establishing appropriate boundaries and guidelines. No matter the age children need clear boundaries. If you are too sick to reinforce the rules will only create problems for them as adults in the future.

I do more running around now that my daughter is a teenager than i did when she was younger plus on top of my illness i have increased age which makes me have less stamina and less able or willing to multitask as I did 5 years ago.

However, if you do decide to be a mom with PD make sure you know that you are NOT alone! that you have other women like me to guide and support you and know that it will be the greatest adventure in your life as well as the most rewarding. Plus, for me my child has served as the driving force for wanting to keep fighting and moving and never give up. During my darkest hours, I have relied on her love and smile to give me strength to hang on for one more day till the storm passed. In life there are many substitutions for things,  but there will never be a substitution for a mother’s love!

Happy Mother’s Day to all the beautiful women out there..cherish your kids, they truly are a gift from GOD!

@copyright 2018

all rights reserved by Maria De Leon MD