One of the most terrifying things for me is communicating with doctors. Over the years, I’ve heard enough pushback, belittling, and general unhelpfulness that I now suffer from increased anxiety whenever I need to ask the doctor a question.
Today, I emailed two of my daughter’s doctors, and I’m still a mess.
I’ve been through a number of medical professionals over the last few years, for myself, my husband, and our daughter, and not every communication has been productive.
Sometimes, it’s a clear sign that the particular doctor isn’t a good fit for our needs. Sometimes it’s a sign that my medical PTSD is taking hold of how I communicate, and I need to take a step back.
For me, I find a lot of the anxiety comes out in the form of arguing and rapid speech. I’m getting better about clear and professional communication, even now when diagnoses hang…
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When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don’t you quit. ~ John Greenleaf Whittier
Hello my dear friends, on this beautiful Sunday afternoon I like to remind everyone who is reading this missive to “not lose heart!” I know very well what it feels like to be in the trenches fighting day in and day out without seemingly moving an inch forward. I know the fatigue and frustration that accompanies the endless parade of doctor visits and having to take gobs of medications just to be able to brush our hair, put on our clothes or get out of bed much less having to face life with all of its challenges when all we feel like doing is curling up in bed and never coming out. I say again to you my friend: “Don’t lose heart!” and have COURAGE (from the French word coeur which means ‘heart’). Believe me it takes courage to do more than we feel or to change our habits when staying as we are where we are feels more comfortable.
Every day I wake up I have to summon inner strength to tend to my family’s needs when at times I am hardly able to tend to my own. The other week I had to take my daughter to orientation for college, feeling at times that my strength and my legs would not hold me after walking miles across the huge campus all I had to do was look upon the face of my beautiful daughter full of enthusiasm and apprehension for the journey ahead. My pain, and discomfort could not stand in the way of me being a supportive parent. As I walked across campus trying to infuse courage to my daughter I recalled the words of H.G Wells who once wrote “what on earth would man do with himself if something did not stand on his way?’ I told my daughter that it is the way of life to do battle, to fight for what we want, and to face challenges with head held high. I reminded her as well as myself that adversity can be our friend although it may not feel like such at the time we are going through problems like dealing with health issues. But, it is these challenges and obstacles which teaches us our strengths and weaknesses. These are the moments that shape our life and determine our character. The greatest people in history were those who faced the most difficult roads with courage and rose to the task.
So if you feel like you are on a slippery downwards slope – don’t let fear let you lose perspective. Gather your support team around you and refuel energy and get courage once more to stand up one more day- after all there are new treatments, medications, and life around the corner- and as a famous poem says ‘Rest, if you must, but don’t you quit!’
Believe you me, after week of traveling – I needed much rest!
all rights reserved By Maria De Leon MD
Hello friends …i have been busy with “life” (daughter going to college, taking care of ill family members, plus sealing with new diagnosis of lupus and recurrent pancreatitis on top of my PD); nonetheless not for one second have I forgotten about any of you nor have i stopped being the Parkinson’s Diva you all know who is passionate about bringing awareness to the world about PD .. and soon will be back to writing regularly about all the adventures and misadventures of the last several months including my new experience with Inbrija – i further wanted to thank everyone who follows my blogs for your support and to hear about the things that interest or concern you – so we may discuss. i am honored to have been nominated for #Wegohealth awards for best kept secret blog. if you feel that my blogs this one and defeatparkinsons.com have made a positive impact in your life please endorse my nomination and let others know about this blog by clicking on link above. Thank you.
Now, back to Inbrija, in my opinion -great drug awesome alternative method to bypass GI. However, I believe it is a poor delivery system for people who are off or are busy on the run and need a quick boost-
I have been looking at this Inbrija method of delivery …personally I don’t think is very patient friendly for what it needs to accomplish…first we are using when off…that little contraption that requires setting up opening pill packets, twisting and prepping pen that is used for inhaling drug is very practical for using when in an “off” state or when we are on the go…it is so much easier to pop a pill or to use Parcopa sublingual. You can’t just take out this product out of purse or bag and take. (Although i would be curious if we can prep pen and carry with us to us as needed? this would be a much more efficient way to use in my opinion). also i am not sure why we have to do 2capsules at each treatment and not provide a bigger space to do both simultaneously rather have to insert each one separately doing capsule placement maneuver twice. ( as i said before in my opinion as doctor and patient, i think this product delivery and use of medication would work best if larger pen to put both capsules at once or one large pill). but in reality would be better to have pre-filled pens to use quickly when on the go or experience a sudden “off”or simply need a boost as it happens to me quite often when I am traveling or speaking etc. plus it seems that it is a bit bulky to travel with if have to carry all pills separate from pen.
I am extremely curious to hear from anyone who has used or using drug currently? what you like or dislike and how is working for you?
P.s. Finally YES FINALLY the much awaited and anticipated PD women Journal : Parkinson’s Diva: Hello Possibilities is now being distributed.
all rights reserved by maria De Leon
“A father’s tears and fears are unseen, his love is unexpressed, but his care and protection remains as a pillar of strength through out our lives.”~ Amma H. Vanniarachychy
On a day like today when we celebrate fathers everywhere I am missing mine. He left us too soon. Yet, as I write these lines I am also certain he is standing watch over me because that’s just the kind of dad he was. Growing up I did not fully appreciate his love and kindness. We were frequently at odds but as I grew up into adulthood I realized how much he truly loved me. He like my grandfather (my other father) whom I loved dearly and miss also very much molded me into the woman that I am today. Although, they were totally different in the way they viewed the world and how they approached life – they had several things in common. The most important is their unconditional love for me. They both instilled in me the notion of always fighting for what I wanted, never giving up, and always being gracious even when defeated.
My father even on his dying bed was more concerned about my mother’s well-being and continued to pray that my illness would leave me. He was always the life of the party and was loved by all who met him. But when it came to showing love he was a man of action rather than words. I just wish I had understood him more growing up. We could have had such a wonderful relationship for many more years than we did. It was not until I got married that our relationship began to change partly due to my husband who help me see things form a different perspective than the one I was used to. Growing up he sacrificed and gave so much of himself for my benefit without saying a word even when I was angry at him his love endure.
Perhaps, he mellowed with age and got wiser I used to think but the reality is that the love was there from the beginning I was just too blind and self-absorbed to see it.
A perfect example is when I was in third grade, I wanted to be “Adelita” which is equivalent to being crowned queen of a pageant; but this was the queen of the Mexican revolution festival, which takes place each year in November in the northern states of Mexico. In order to achieve this honor not only did you have to be popular but also raise money – of course the more well- known you were the more endorsements one would have. My family did not have much financial means compared to one of my opponents whose fathers was a wealthy business man. I had a good chance of losing. However, my father knowing that I so wanted to be the one who took the prize handed me an envelope to place in the fundraising tray at the last second before the ballots closed. To my astonishment, I was crowned ‘Adelita’- one of the biggest moments of my life. Many years when I inquired from my mother how dad had come into all that money to make me win I found out that he had withdrawn all his savings just so that I could win! That’s the kind of unconditional love my dad had for me. The days after the contest ended he spent hours along with my mom preparing the parade car.
So today, I recommend that if you still have your father living you thank him for all that he did and continues to do in your life. If you never had a good relationship perhaps is time to begin opening up the lines of communication you might just be surprised where it leads. Don’t wait until they are sick or dying to make amends-open the box of alabaster and pour it on them. If they are already struggling with an illness like PD find ways to spend time with them. After they are gone it is the stolen moments and silly memories that remain and become more precious.
I am so grateful that we had the last 20 years to enjoy one another. It is true what they say that behind every amazing woman ids a great dad. Funny thing is that the man I married has so much resemblance to the two fathers in my life. So I know that my daughter is blessed as well.
Happy Father’s day! Daughters be thankful for your fathers today.
all rights reserved by Maria De Leon MD
“Aim at heaven and you will get ‘earth thrown in.’ Aim at earth and you will get neither.” C.S Lewis
Last few weeks, I feel like I have simply run out of steam when it comes to Parkinson’s advocacy. After, nearly 3 decades of living and breathing Parkinson’s I simply don’t feel like talking and writing about it all the time. After all like it or not it is a part of my daily life. Hour to hour minute to minute, my faithful friend never leaves my side. Parkinson’s has become my shadow, my constant companion which had begun to make me weary and feel stifled because the shadow seemed to be growing. But then I realized that shadows only grow bigger and less defined as they get closer to the light. Suddenly I felt better. I remembered why I became a doctor and why I began this advocacy journey. I wanted to be a beam of hope to those who had lost their way but in so doing I have found a greater light reflected back on me.
Today, I admonish those who like me are beginning to feel themselves disappear next to the growing shadows, to not let your fears and weariness over take you. If you retrieve now you will also depart from the light that surrounds you. Because one cannot have shadows unless there is a bright light shining on us.
If you feel like you are losing steam like me go back to your roots and make your passion contagious once again.
First, take care of yourself and rest. You are no good to others if you can’t even take care of yourself. Exhaustion can cause us to loose perspective.
Second, start small- even the smallest act can create a ripple effect. May be just become a friend to someone else who is struggling. Start by sharing your story.
Third, be patient. Things take time. In the “confrontation between the stream and the rock, the stream always wins; not through strength but through perseverance.” ~Budda
Fourth, step up for those who can’t. I speak on behalf of my patients and those who are no longer able to participate because of their illness.
Fifth, Must have the courage to have tough conversations and expect to be uncomfortable – not everyone cares for your passion, believes changes need to be made, or has your own perspectives. Always be gracious. And start by asking why they feel the way they do? Everyone has a story and an experience so allow them to share their perspective with you. We all can learn from one another to make this world better. Start conversations in your community with people of all walks of life.
Today, I regained my strength by contemplating the work that’s been carried out thus far by me and others as they attend the Kyoto WPC in the next few days whose theme is rooted in hope. I will then live with the certainty that the things I hope for will come to pass.
All right reserved by Maria De Leon MD
“Every great journey begins with a trip to the bathroom.” Unknown
‘Oh the places you will go!’ Never thought it would include a million trips to the bathrooms of the world. I feel like there is not much I have not seen but then again I could be wrong. Having Parkinson’s disease I never imagined would turn me into a connoisseur and more importantly a critic of bathrooms. Previously a bathroom was just a place to do your business not to linger or enjoy. Although, it always need to have some modicum of cleanliness for it to be even considered as plausible site to use. Either a bathroom was clean or not which meant it was usable or not. A ladies powder room was not anything to fret over you went if needed the end. Now when I am out of the house I must always focus and strategize when, where and what state will I find the lavatories in and will there even be some available. I never realized that some states like Arkansas do not have bathrooms in their rest stops like they do in Texas, which means you must travel a long distance before finding a restroom never mind one that does not make you cringe.
My travel routes are now not only planned as to distance but also more importantly as to availability of bathrooms. I do not travel small roads typically because there are no easy accessible bathrooms and if you happen to find one – typically you wish you had not but sometimes duty calls and you have to just grin and bear it and hope you did not catch some disease in the process.
Although, my bladder issues are much better controlled than they were at the beginning of my illness you never know when an emergency will strike not just because of bladder but having bowel issues from PD is another reason one must always be vigilante as to location of lavatories. Over the last decade, I have developed a sense of what I like and don’t like. I now rate quality of a restaurant not only on their desserts but on their quality of powder rooms. I have had extensive experience traveling around the world and I cringe recalling some of the escapades involving outings in search of a toilet. First when traveling one must not only know the proper name of the facilities in a foreign language and sometimes deciphering a bathroom symbol can be as much a challenge as playing Pictionary with the added bonus that if you don’t solve quickly instead of losing you will soil or wet yourself. Other places around the world may require coins to open the lavatories- so you must have exact change unless there happens to be an attendant who can make change. All of this commotion only makes my bladder shut down. Then there is the issue of finding toilet paper. Some places like Mexico and Italy you have to purchase sheets of toilet paper. I simply carry some with me especially when traveling abroad.
It can be exhausting not just for person with bowel and bladder issues but also for family members whose agenda is completely disrupted each time they are traveling together. Is not only appalling having to live a life where bathrooms are the center of the universe but where every road must lead a bathroom stall?
So next time you plan a trip remember to take into account not just travel time, and mode of transportation but accessibility to powder rooms especially if you have mobility issues or need assistance because some like ones in airplane barely allow for passenger to fit much less maneuver two people when one is unable to flex. Think about what this means to your travel partners for instance added time if traveling by car, missing tours because having to step away from group to find bathroom. Consider always carrying change of clothes especially undergarments and employing depends or other absorbent materials to aid in case of accidents or no available toilets. Once in a while because of our bladder issues you might just get the royal treatment and be allowed into the pink room of the white house.
all rights reserved by Maria De Leon MD