the much awaited much anticipated Parkinson’s women journal for daily living companion to Parkinson’s Diva is finally available to pre-order
“We do not know what to do, but our eyes are on you…” 2 Chronicles 20:12
When was the last time you heard another mom say: ‘This mom thing is a breeze, I feel no pressure what so ever?
Never! Right? Whether you are a seasoned mom or a new mom, there are always challenges to be met. Just when you think you got it all figured out some new unexpected situation pops out of nowhere and puts your patience, and skills to the test. Moms are under so much pressure to be a “good mom” and be “enough” for our kids that it can feel like a full time job. Now throw in parenting while juggling living with a chronic illness like Parkinson’s.
If you are like me most days you stumble out of bed reaching for your medicines through squinted burning eyes, (cause you just went to sleep less than 2 hours ago), feeling incredibly frustrated because not only are you stiff, slightly confused, off balance, and shaky; but now you have a mess all over the floor from trying to open the medicine bottles in a hurry!
Anyone else have days like this they would like to share? Or you may feel like a fiery breathing dragon when our kids are rushing us and demanding our full attention to help them get their day started when all you want to do is go back to sleep or be left alone. Of course our initial reaction might be a bit harsh –often being labeled as ‘irritable’ or ‘yell-y’ by our kids. We might feel the answer lies in a good exorcism from this PD demon that has taken over our lives without our consent. I have heard from other young women with PD say that they feel like a fiery lady or monster because they can’t stop being cranky, irritable, with a short fire fuse.
So, the pressure builds making us feel like we are not up to the task or that we might just implode at any given moment. After all there are meals to cook, diapers to change, college applications to complete, recitals to attend, appointments to keep, emails to check, schedules to coordinate, hugs to give and that’s just the easy stuff. Don’t get me started on the real tough stuff we got to live with making our brain’s and bodies do what we want them to do when we want to do it.
If this is you my dear friend, take a deep breath and realize that you are not alone. You my friend are more than enough just the way you are! We do not have to be perfect or have all the answers, we simply have to be present in the lives of your children and accept God’s grace for our lives. Our Goal is not to be perfect and have everything under control rather show our children that despite our weaknesses, flaws and ever changing illness. We are more than enough for our kids even on those days we feel the least lovely or lovable because ONLY God is big enough to bear the burdens inflicted by our illnesses that weigh upon us. After all the disease is not their fault and if you feel free to live your life to the fullest despite its limitations your kids will take a cue from you and learn to handle challenges head-on with a positive outlook.
So today, I want you to hug your children tell them you love them & breath in Grace.
All rights reserved By Maria De Leon MD
“Fashion is art and you are the canvas!”
Enjoy a leisurely Sunday afternoon sipping your favorite beverage curled up on your favorite couch. Relax let your mind go free & Remember that you are fabulous!! Life isn’t perfect but your outfit can be because it’s a reflection of who you are inside.
AUDREY HEPURN BAGS
CATWALK CLASSY COATS
COCO CHANNEL CONFIDENT CROWN ELEGANT ETERNAL EYELASHES
FIERCE GOWN IRREPLACEABLE MAGAZINES MICHAEL KORS
MOONSTRUCK PERFUME PRADA PUMPS RADIANCE
RED LIPSTICK RUNWAY SCARVES SEXY SOUL STYLE TIFFANYs
VELVET VOGUE WHIMSICAL
Stay tuned for more fun puzzles and activities in my upcoming publication of Parkinson’s DIVA:Hello Possibilities – a Journal for everyday life with PD.
all rights reserved By Maria De Leon MD
“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