Could a cluttered life and house be a sign of poorly controlled symptoms? By Maria De León

Comments 3 Standard

“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?

Heck yes!

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.

@copyright2019

all rights reserved by Maria De Leon

Thanksgiving in the midst of adversity: By Maria De Leon

Comments 13 Standard

“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.
Thank you,
Parkinson’s Diva
Happy Thanksgiving!!!!

Copyright2018
All rights reserved by Maria De Leon MD

Rhapsody of a Diva: By Maria De Leon

Comments 4 Standard

“We are the champions of the world. We will keep on fighting till the end…” (Queen)

Over the last few weeks, as I have tried to make sense of my life in light of my seemingly endless medical problem list; I have had plenty of time for introspection as I lingered around the house in my pajamas watching movies when not in pain, nauseated, or having fever and chills. My favorite movie genre as of late are those based on real life. In my moments of feeling better and not having to see a doctor or get yet another test done to figure the conundrum that is my illness, it occurred to me that in life the most beautiful things usually come out of the darkest and most painful times our life’s.

Throughout history we are reminded time and time again that the things that inspire and endure the test of time are those that arise from the ashes of near annihilation.

I love the story of the thorn bird legend, although believed to be purely mythical, is the perfect embodiment of a notion that greatness can only be achieved by walking through fire or standing in the lion’s den. The Celtic legend, upon which the story is supposedly based on, says that there lives a “bird that sings more sweetly than any other on earth as he dies that even God in heaven stands still and smiles.” While dying he rises above the agony of his pain caused by being impaled on the sharpest thorn. Such examples of greatness can only emerge out of the fiery ashes. The outcome of such struggles of the soul, if we are courageous enough to stand and fight, typically bring forth redemption, self-love, understanding, and compassion which permeates throughout in the same fashion in which the light casts its warmth upon a dark cold room when the window is open to let sunshine in. A small light can illuminate even the darkest of rooms but a dark room can never overpower even the faintest of lights. So keep on fighting even if you feel like you don’t have the stamina to go on….
The greatest feats and gifts to mankind have been borne out of despair, hopelessness, uncertainty and loneliness.

Beethoven composed his 9th symphony “Ode to Joy” when he was totally deaf. Van Gogh painted “Starry Night” in the midst of a mental asylum cell, the apostle Paul wrote his most powerful letters while imprisoned and our salvation was bought at the ultimate price of pain and agony on a rugged cross.
What will my legacy be to this world and my children be? I wonder. Will my life be an example of courage and triumph? What will yours be? Will you wallow in your pain and stay a victim? or will you like many before us have the courage to conquer and not be defeated by our present circumstances?
As for me: through the grace of God I have discovered courage in the midst of my never-ending battles with physical illness along with a renewed sense of purpose and hope.
So I sing to myself… “What a wonderful world!”
Will you sing too with a new sense of purpose?

I love to hear your stories …would you share with me and others so we can all gain courage and strength by knowing we have been able to overcome thus far.

Many Blessings to all on this beautiful day.
Love,
Parkinsonsdiva

@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

Things that Send a Chill Down my Spine: By Maria De Leon

Comment 1 Standard

” If  you are reading this than you are blissfully unaware of what is behind you (or rather in front of us).” ~unknown

As we approach the end of October and many are beginning to get excited about Halloween, I begin to ponder on all the scary and crazy things we have gone through this year. This year seems like nature brought about the biggest scares with hurricane after hurricane and wild fire after wild fire leaving many homeless, destitute and without medical care to boot.

Many of us may still be reeling from the personal losses we might have endured this year while having to contemplate our mental and physical well being with great trepidation as we go into a new medicare enrollment period (since most of us with chronic illnesses are under this program).

I fear for the future of  the community of chronically ill and disabled individuals (e.g. Parkinson’s patients) as it seems no one is really looking out for them. All year there have been many attempts to alter the present health care laws. Although,  supposedly these were meant to improve current policies in reality all proposal have fallen short of  their intended goal -helping the sick and poor. Fortunately, most have been rejected but no real progress has been made in this arena.

Now, the new passing of bill failing to revive subsides for poor may bring a whole host of new issues especially for states with a large number of indigent and people on medicaid as is the state of Texas. some experts are now claiming that “President Trump’s decision to cancel key ObamaCare payments could be backfiring” by bringing into effect the laws of supply and demand forcing patients to shop around for better deals.

However, this reasoning is fret with dangers since we are talking about an elderly, sick, and in many cases poorly educated population who have neither the time, the skills, or the savvy-ness to know that there may be better plans out there. While for those of us like me who are able to and know about these options it is still a huge ordeal that requires countless man hours to determine what is the best plan considering all the medical issues and number of medications I take.  Plus, when you change plans, there is always a risk that a doctor whom you are well established with will not take that particular insurance. As it has happened to me and many others when changing insurance due to enormous premiums i am now forced to see my specialists out of network costing me even higher out of pocket expenses. One does not always have this liberty one due to increase expense for seeing out of network specialist and two  there may not even be a specialist in your area covered by your plan. This is one of the biggest reasons teleneurology for Parkinson’s needs to be allowed to be covered across state lines.

Also, even if a person with much labor could get a better deal in insurance premiums, there is no guarantee that the medications one needs to function will be covered. As we get sicker and more disabled we are less able to cope with all these changes and regulations making it harder for chronically ill to stay insured and receive adequate benefits. My insurance has already informed me that my premiums were tripling for next year- which means need to find new insurance but it is with heavy heart I have to undertake this because i finally got insurance after 8 months to cover the medications that I need. so i am not looking forward to having to battle this issue again. because it is easier to stay with current plan when you have so many things going on like trying to survive a chronic illness, i see these new changes in the law as causing bigger problems to the infirm.

Getting rid of medicare part D would greatly improve things in my opinion. Ever since this was introduced i saw a huge increase in my patients having exacerbation of their once stable illnesses as well as increased hospitalization due to the fact that many like me who take a lot of expensive medications reach the gap within first 2-3 months of the year leaving them with a choice between medicine or paying other essential bills. in the past prior to this law, most doctors including myself were able to help out patients by providing samples or finding resources to meet the needs. But, once part D came into effect these options were taken away.

So in effect the uncertainty of my illness for upcoming year along with all the healthcare changes coming our way are more frightening and terrifying than most things I can imagine especially since like many others I am part of the  sandwich generation. I not only have to worry about my own decaying health but have to take care of several infirm elderly parents and raise a child.

Thus, I urge everyone to contact their state representatives regarding need for teleneurology and improvement in access to health care and ability to maintain our own physicians and right to have the medicines prescribed by our healthcare professionals.

In conclusion, this Halloween let’s ‘use our imagination not to scare ourselves to death’ but to inspire us to pursue those things which are worthy of our time and resources for a better, healthier life with PD (and any other chronic illness).

Happy Halloween everyone!  Eat drink and be spooktacular!hall

Sources:

Sullivan, Peter. (Oct 27 2017) Trump Obamacare may bolster law

Judge rejects bid by 18 US states to revive ACA subsidies Reuters health Info Oct 25 2017

 

@copy right 2017

all rightsd reserved by Maria De Leon

 

 

The cost of Parkinson’s and other chronic illnesses…

Leave a comment Standard

 

Although, fortunately the new health reform bill was turned down last night we as patients still face the uncertainty of what the future healthcare system will bring reform will bring. Thus, we strive to have members of congress understand what it means to live with a chronic illness and deal with the financial burden it places not just on the patients and families. More importantly, society as a whole can suffer if there is no assistance for the growing number of people living longer with chronic illnesses like Parkinson’s and Alzheimer’s, and cancer to mention a few. As I give thanks to God for the miracle of modern medicine and His Grace which has brought healing to my best friend, I reflect on the issues of healthcare. And as she begins her slow recovery from recurrent metastatic stage 4 cancer which was wide spread, I ponder not only on the toll the illness has left on her body, her family, the relationships but also the enormous financial burden it has placed on them after 8 months of hospitalization, numerous bone marrow transplants, labs, testing and the slew of chemotherapeutic agents not counting the number of specialists and other ancillary staff.  The toll that the cost of medicines takes on a family or individual can be insurmountable. Unfortunately, this is also a place where few people ever come back or recover from. Not only is the sudden realization that our health is not under our control but the daunting reality of having to live a progressive illness as many of us like myself lose their livelihoods and ability to continue working can be far too overwhelming.

The grave reality is that financial factors play a major role in patient’s use of medications and subsequently sadly the patient’s outcome with a disease process. I have seen this first hand as a patient, doctor and caregiver. Sometimes, we don’t think about the financial issues at the onset of illness since our priority is to get well; but as the disease progresses and the time from diagnosis extends, this is the most critical factor in a person’s long term outcome for which many of us are ill prepared and as physicians don’t provide adequate guidance and support. I summit that low incomes and poor finances along with lack of access to medicines and treatments is the number one cause for patients and families demise and dissatisfaction with disease rather than the lack of treatments. I have heard time and time again from both patients and doctors the frustration in their voices in regards to lack of coverage of much needed medications. Unfortunately because always have to revert to the “cheaper” treatments the options become quite limited and not always offer the best outcome.

As I prepared another talk about the 200 years of Parkinson’s and the latest discovery and treatments options I was reminded by the people in the audience to whom I have addressed in past conferences. Most elderly, Medicare on fixed incomes who cannot afford the luxury of paying  high premiums for newer medications even if they do promise  to be more effective, with fewer side effects or prolong quality of life decrease disability and so on.

Looking at other patients with chronic illnesses, especially cancer patients are at risk of filing for bankruptcy due to severe financial burden but what is most interesting is that those who file for bankruptcy in context of chronic illness are at greater risk for having an early demise. Un fortunately, I have seen it firsthand particularly those who are young and don’t have the financial stability that an older person might have from years of productive labor hence are more likely to forego treatments or seek alternate remedies as in the Hispanic communities because of lack of monetary resources and lack of access to health care because of poor or no insurance coverage.  And even when the chronically Ill are over 65 and on Medicare, the restrictions placed by an outside third party who does not understand the intricacies of a complex illness such as Parkinson’s can tie the hands of the healthcare practitioners. Forcing patients to use less effective treatments or older treatments or asking doctor to find the cheapest medication which in the case of Parkinson’s is levodopa/ carbidopa. Although it still remains the gold standard, 50 years’ experience has shown us that this medication alone is fraught with side effects when used as a sole treatment option increasing likelihood of dyskinesia’s and subsequent decline in quality of life.

We cannot allow our chronically Ill to continue to undergo increased financial toxicity due to lack of government support. We must stand up and ask our representatives to continue to provide support for those who are chronically ill and not remove benefits for those with preexisting conditions and improve access to healthcare especially much needed drug treatments.

Some of the questions you might want to have early on with doctor when diagnosed with a chronic illness is referral to social worker, and to lawyers  experts in chronic diseases for financial planning including long term care for spouses or caregivers.

When discussing medications ask the price but also price benefit ratio. Don’t simply ask for a cheaper drug which might result in more adverse effects causing more hospitalizations and more doctors’ visits or side effects than a more expensive medication which in the long run would be more cost effective to keep you stable and also avoid the inherent confusion many have by having different generic brands for same medicine. (In my experience, the varying colors and shapes of same medicine gets patients confused by making them believe they are different especially in the elderly).  Ask if there is a less expensive treatment option that is equally effective.

Are there any nonprofit organizations or community organizations that can aid with burden of Drug cost. Also inquire what about any drug programs from companies – different companies have different philosophies in regard to helping patients.

But also important to note that many drugs used in neurology to treat many non-motor symptoms are off label but widely accepted among the community physicians to treat certain causes but with the new restrictions of Medicare. Previously employed medicines maybe denied leaving you stranded …I am in a quandary at this point with one of my meds. Discuss with your physician have them appeal if denied or find other appropriate alternatives. Don’t just suffer because insurance denied or medicine is expensive.

Here is a foundation where some of you might find assistance Patient Advocate Copay relief -1-866-512-3861. Also look at NORD. http://www.patientassistanceprograms.com

 

@ July 2017 All rights reserved Maria De Leon MD

 

 

 

 

 

Chaotic House in the Prairie: By Maria De Leon

Leave a comment Standard

There is no great loss without some small gain.” Laura Ingalls Wilder

Ok so it’s not exactly the prairie but I do like to think of it in the middle of nowhere. I am after all surround d by large pine trees and the wild fauna seems to enjoy the flora around my house attracting many a doe to give birth on my front lawn. Although, I have grown to love my community and appreciate its charms can’t take the city of this city girl. What then does an out of work night owl who has chronic insomnia thanks to PD do for entertainment in the middle of the night? Well there is always Walmart… but not really my thing so besides reading, watching a zillion movies, and preparing for my new women’s class, or working on two books (which I am attempting to finish and publish this year),there is something more practical. One exercise by dancing which unfortunately only contributes to the insomnia not recommended. But, as many of you who live with PD and other chronic diseases will attest that mornings are just extremely disorganized, slow, and rough for all in the family. You wake up stiff and staggering then you take your medications and either don’t work as always because of severe constipation or bad side effects like nausea, migraine, dizziness so you lounge around for a few minutes but before you know it it’s noon and your husband is home starving and the meal you have been planning for three days ….

“I guess you are not cooking! Should I just put away that chicken and make dinner tonight?

I sigh, as he walks away to make himself a sandwich.

Finally, around 3:30 p.m., I begin to feel like myself having wasted half the day away I drag myself to shower and wash away the “illness” if only it was possible. He returns having gone walking around the stadium which I could not join today due to being dizzy and nauseous, and with my daughter; but instead of letting me cook dinner he jumps in and takes over so I begrudgingly oblige.  (He will be back to work in a couple of days and I will have no recourse but to manage best I can).

Soon it will be time for him to retire to the bedroom and I will have complete run of the house.

Fortunately, this is the time I can spend with my daughter who happens to be a teenager and is also a night owl. I help with homework, Spanish particularly, and we laugh because my brain is still slow and gets tripped easily at times then as always a customary snack before bedtime.

Its midnight now, finally house quiet and I can think clearly.  I am full of energy and feeling great. I decide to make the mole I have been trying to prepare for the last 3 days so when I don’t feel well tomorrow food will actually be ready and on time for my husband to eat at noon. But, I am so weak, shaky and dystonic I am having trouble opening the jar of mole. I laugh out loud at the new label on the lid which reads “new and improved easier to open lid” but nothing has really changed looks exactly the same it has looked for half a century (and I chuckle a my fellow countrymen then I get a bit sad when I think what if I can buy this product anymore with new changes in government?) I don’t want to think about it anymore tonight…

I am making one of my favorite dishes. If only I could find a way to open the darn jar. As I search every cabinet and beat and pound on the jar I hoping it won’t shatter since made of glass, I feel like the cat in the cartoon where he is left alone with cabinets full of tuna cans but no can opener!

Should I call mom at this hour and ask for advice? She too is a night owl. I do. Of course she is awake. We talk for a while then she asks what I am up to and laughs wholeheartedly at my situation but gives me a solution. At last I can finish preparing my mole! I am tempted to eat some when done an hour 1/2 later, but I restrain myself. I need to go to bed it’s close to 2 a.m. Maybe a glass of wine will do the trick while I wait for food to cool enough to refrigerate. Surprise, surprise, I can’t open wine bottle either.

 

C’est la vie!  Although, I am not really sleepy I drag myself to bed “for tomorrow is another day” or maybe later today and wait for sleep to come and resume the chaos which is my life with PD.

 

 

copyright-2017

all rights reserved – Maria De Leon MD