“It’s not clutter, is my unique filing system.” Jonathan Lockwood Huie
Have you ever noticed that when we are ill we revert to doing the bare minimal which means basic survival activities. No make -up, no color coordination with our clothes. We are lucky to even shower and get dressed without passing out or exhausting all of our energy. I had been feeling so run down that I had neglected my writing not to mention my home.
Who cares if the clothes are not put up as long as they are clean and folded? That alone took an act of congress to do (ha- given present circumstances in Washington that is saying a lot!)
Recently, I went to my PCP because I was finally feeling like myself and was able to drive myself there. I proceeded to tell her about my last several month’s ordeal with all the specialists I had seen along with the myriad of tests and treatments I had had. Much to my chagrin, all she wanted to know was if I was doing anything to exercise and lose weight. Granted exercise is a way to maintain our illness in check and prevent us from deteriorating faster. However, before one can exercise one must be able to have enough physical strength to even move, shower and do basic hygiene. Here I was proud I had been out all week after several months of feeling like a recluse. I had actually dressed and groomed without any problems like a normal person would. I was even wearing with make-up once more, had a nice hair do and jewelry on. I was back!
But my triumphant attitude was quickly deflated by my physician’s lack of interest in the fact that I was looking well.
Chronically ill patients due to their illness have a lot of ups and downs and our goal should be to have a smooth course with our illness avoiding as many ups and downs. Our jobs as patients is to work with our health professionals to smooth out those bumpy roads. However, if our doctors don’t acknowledge a problem we are going to face greater challenges. So we must learn to speak up and ensure that the message is getting across about our difficulties with essential activities of daily living.
I think sometimes we as physicians miss the trees for the forest. We should really begin by asking basic questions like are you able to dress yourself in a normal fashion – never mind the falls, choking, dizzy spells and so on. What does your home life look like? Have there been any changes lately?
Over the last 6 months not only did it take me hours to do basic hygiene leaving me exhausted and often needing a break before, during and after but also neglecting non- essential house duties. As laws of thermodynamics dictate the world tends towards chaos it takes energy and constant work to keep organized and tidy in our appearance as well as our surroundings. Those of you who have kids or grand kids know this. You barely finish picking up the toys, shoes, coats etc. and before you it, as the kids go by thunderous swoop, the room is once more untidy and disheveled. Needing order once more. But what happens when there is no extra energy to do these basic cleaning activities- clutter begins.
As a neurologist I was taught to think as hoarding as a mental illness very often a sign of dementia but perhaps we need to look at degrees of untidiness as a sign that things are amiss and underlying illnesses are present or not well controlled.
I have always prided myself as a very tidy and neat individual except in my work space which has always been cluttered with all sorts of things that inspire me or interest me. However, over the last year as my health has been more precarious my neatness has fallen somewhat to the way side. At home, I have slowly begun to accumulate things that I simply had no energy to sort out on any given day. Meanwhile developing a few pile of objects in various rooms of the house. This was not because I did not care or liked the mess or did not want to clean I simply had no energy to do the basic things like take care of my daughter, going grocery shopping, cooking, paying bills, going to doctor, tending to my mothers and my own medical needs. I simply said tomorrow I will get to it and next day came I was equally exhausted and worn out and something more pressing took my limited energy. So either you like me learned to ignore it or are just too tired and sick to really notice.
Funny thing having a cluttered house during poorly controlled illness is like when you been sick for a time and can’t seem to get enough rest and spend most of the time lying in bed finding it very comforting and soothing. But as soon as our bodies are restored the first thing we want is out of bed! When our chronic illness symptoms are restored we want order back in our lives!
I knew I was back to “normal” when I realized that the things that had not bothered me for nearly a year we’re now demanding my attention. Screaming in fact. So I have decreed 2019 the year of de-cluttering!
But now I know that when the clutter begins if it does again I won’t wait a year to get help with my symptoms because this is the first sign that something is amiss! I hope you do the same. Talk to your doctor if this is occurring.
all rights reserved by Maria De Leon
“It’s a new dawn, it’s a new day, is a new life for me”, are the words that I want everyone to shout out with me this today! Although, half of the first month of the new year has already swooshed by, there is still time to think about our goals for the year and how we will manage while trying to battle an all encompassing disease. A decade ago, I was feeling unhappy and trapped although seemingly I had it all. Unfortunately, it took a devastating illness to make me realize what was important in my life. Even though the road has been bumpy and full of perils at times it has also been extremely rewarding giving me a new lease on life. This year as I begin not just a new year but also a new decade in my life I hope to continue reaching new goals and soaring to new heights along with all of you.
But in order for us to continue climbing and growing as people and showing our illnesses that we will not be hostage or defeated by Parkinson’s, or any other chronic illness we must start by being S.M.A.R.T. in other words in order to keep moving forward we must set goals that are:
Specific: Make time for what really matters to YOU, your family, & God! Rest, eat well and take medicines on time.
Moderate: Don’t over extend yourself. Remember that we unlike others have even less energy and less mental stamina at times so we should choose our projects carefully. Start small on a goal or project and build your success by mastering that one thing at a time. We can’t just get up one day and expect to write a novel if never written before (believe me I tried- it took a lot of work). There is a learning curve to everything worth doing even for us to overcome our physical and mental impediments.
Achievable: Focus on reaching plausible goals- stop falling, stop choking, exercise once a week etc. Always act and think in terms of what you CAN do and achieve rather than on what you CANNOT do. Example, this week I will try not to miss my noon dosages. Instead, I will set an alarm to remind me to take my medications as scheduled.
Recordable: Remember that you cannot manage what you can’t objectively record. Go ahead keep a diary of your progress (or lack of). this will make you accountable. This will help you and your doctor know what you must work on together.
Time-Specific: Review your goals monthly, weekly if struggling. This way you can trouble shoot and change direction with greater ease if having trouble. This requires introspection and being honest with oneself. Healing begins from inside out after all.
If you are S.M.A.R.T in all areas of your life not just those related to your illness you can achieve anything and really be able to shout …”I am feeling good today!” Just as I have learned. So stop procrastinating, feeling sorry for yourself and take back control of your life and start living to the fullest. It won’t be easy but it will be very rewarding I promise.
Lyrics by Michael Buble _ “I am feeling good”; ‘The word for you today” by Bob Gass
All Rights reserved by Maria De Leon MD
“Where there is no vision people will perish.” Proverbs 29:18
This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”
So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.
Happy New Year to all my friends, families and followers!
All rights reserved By Maria L. De Leon
“In all things give thanks…” 1 Thessalonians 5:18
As the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!
This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a ‘starlet’ for a week, reuniting with long lost friends, honored to give first all women with Parkinson’s conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinson’s patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrow’s fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my ‘parkinsonsdiva’ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)
I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.
We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.
Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.
Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.
Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinson’s community who has invited me into their homes.
All rights reserved by Maria De Leon MD