Chaotic House in the Prairie: By Maria De Leon

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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

Musings of a Parkinson’s Night Owl: By Maria De Leon

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“Every Renaissance comes to the world with a cry, the cry of the human spirit to be free…” Anne Sullivan Macy

 

The other day as I stayed up half the night like most of us with PD tend to do, I was too tired to read, or write and too restless to lie quietly in the dark. I decided to make my way to the Living room and surf the T.V. channels. After a few minutes, I stopped as I recognized an old movie which I had not seen since medical school “Lorenzo’s oil.” A movie starring Susan Sarandon (for which she won an Oscar) and nick molten about a child who develops a neurological illness known as adrenoluekodyatrophy. This Terrible condition occurs only in boys because is x-linked causing behavioral problems, blindness, deafness and eventually death. As I began to watch a wave of emotions took over me realizing how long it had been since I first saw this movie trying to remember my first impressions and how different they probably were from now having had the opportunity to treat many similar patients. Recalling my last little boy whom I diagnosed and the sadness and hopelessness i felt as I saw him drift into darkness and eventually succumb to death. Remembering the pain, anguish, and despair her mom felt upon confirming the diagnosis, never once remembering that movie.

Now as a seasoned neurologists, mother, and patient I found myself being completely enraged at that mother’s behavior. Wondering what I would have counseled if I were the attending physician on that particular case and weighing my options as a mom and patient. Surprisingly my decisions would have all led to the same path – let the boy die with dignity since he suffered for at least 3 years as he descended deeper into a coma only to slowly come out after years of seizures and suffering regaining some hearing and vision but remaining quadriplegic and bed bound for life. I wonder what he would have said about his life. The lack of choice in the matter. In the end, I wonder if he would have said it was a meaningful life. of course the fact that he survived such ordeal when he was aspirating and suffering asphyxiation continuously for years speaks volumes to the strength and power of the human spirit and to the  fact that life is not in our hands but that of our God.

The parents life revolved around the illness of their son from the moment of his diagnosis- the first rule of living with a chronically ill patient is not to make the disease the center of life. This is giving power and admitting it is stronger than us.  How often we as caregivers make life decisions based on denial or guilt? Sometimes we have to learn to let go and not stop living ourselves. We as caregivers are just as important as the patient. This does not mean we abandon our responsibilities or wash our hands of it rather we must find a way to maintain our own health, goals, dreams in spite of another’s need for our complete attention. We don’t refuse help from others or alienate ourselves from the world as this mom did. Important not to neglect relationships like marriage. Other children, siblings and friends as this couple did.

I am afraid too often we think we are invincible or too proud to let others lend a hand.

Plus, in dealing with any chronic illness we have to avail ourselves of an entire medical team especially if we want to change the science. As I have written before respect is essential for a good patient- physician relationship. Both parties are equally important to advancing knowledge and science of any disease. Anytime one party thinks they can work alone will only truncate progress. This is what unfortunately happened. Although the parents discovery of “Lorenzo’s Oil” was a major breakthrough because it did not go through proper channels of being tested within the confines of medical science, the treatment has mostly fallen into oblivion and rarely discussed in any medical settings due to the controversy and animosity it created among parents of patients with similar disease that were desperate for cure as we are now with PD an the neurological community who was painted as insensitive and uncaring to the needs of their patients.

Remember the saying never bite the hand that feeds you…doctors and neuroscientist have the scientific knowledge and experience of a thousand patients we only have one – ourselves or our loved ones. However, by working together we can fill in the gaps. So let’s not hastily take non- recommended treatments without discussing with our physician’s because if truly beneficial if done outside the confines of scientific methodology few people will reap the benefit as has been the case of the treatment with this oil which according to small studies if used early on in this disease can halt its progression.

This year let’s make waves by working together for a cure!

copyright-2017

all rights reserved – Maria De Leon MD

New Year Resolutions! By Maria De Leon

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First, let me take a moment to wish everyone a very happy and prosperous new year! I am sure that many of you as is customary made a list of New Year’s Resolutions which you wholeheartedly intended to keep. But, by now many of you like me find the resolve to keep those well –intended plans slowly begin to dwindle away as the month unfolds. Perhaps, some of you, like me, feel no need to go through the charade of making any determinations.

However, this year I would like to challenge you to develop a more proactive attitude towards achieving our goals in an effort to live a happier and fuller life no matter where we find ourselves.

Think of these as a new adventure which is going to enhance your life not cause stress or mental anguish.

Here are some examples of common resolutions people make:

I want to eat healthy and lose weight. We join exercise classes and begin to avoid all the stuff which has sugar, butter, and tastes good and replace with more incipient foods. Well, no wonder we abandon this in an instant when someone offers us a piece of moist chocolate cake, as my grandmother used to make every year around this time for my grandfather’s birthday.

Instead, let’s look at food not as our enemy but a way to connect to people, explore tastes, and discover new things. Is not what we eat but rather the quantity, I always say. Everything in moderation. Don’t eat half the cake, just a sliver or small slice. Trust me your taste buds will thank you, and don’t leave the butter out when cooking. Your brain needs fats in order to thrive. A recent, study published in magazine Neurology Today stated that people with a bit more meat in their bones later in life could potentially benefit more by protecting their brain’s against dementia. That does not mean you eat the whole tub of butter and let your diabetes get out of control but does not mean you don’t have to deprive yourself from rich foods. Eating fatty fish high in omega 3- fatty acids like salmon, sardines, and trout can be beneficial to the brain and help with memory. One of my favorite dishes and easy to prepare is salmon with mint in the oven served over rice. 

I want to stay fit or get in shape. It’s a lot easier to exercise routinely when you have a friend to do it with or better yet get a pet like a dog which you have to walk and you will exercise without trying to. Pets are not for you? How about ballroom dancing? I bet you will be the life of the party if you display some of your moves. Exercise also has been proven to prevent or at least truncate development of dementia with as little as 30 minutes a day of walking three times a week especially in women. The best way to maintain an exercise routine is finding something you love.

Another common resolution, I want to travel. Well, sometimes our health and/or our financial circumstances are not what we like making this dream a bit hard to achieve leaving us disheartened. Well, now you can have some of the advantages of traveling without leaving home. Invest in some virtual reality glasses (you can buy some at amazon for under $20) and feel like your there. Better yet, invite friends over and cook some foods indigenous to those areas that you like to visit. Better yet, if out are like me and don’t like to cook much then find a place to cater or do put luck and while you dine listen to the music of the region and even learn a few phrases. There are several little packages called “Music and Cuisine for Dinner with a Theme” which I have enjoyed using. These inexpensive treats which can be purchased on line or at Hallmark stores come with a authentic music cd of the region like Italy (several countries to choose from). They come with tips for throwing, in this case Italian – inspired soiree along with 20 plus recipes from appetizers to desserts for a whole meal experience which are easy to prepare. The experience will be just as memorable, I guarantee. Plus, you will also be learning something new another common resolution.

Self-improvement also makes top of list for New Year’s resolutions easily broken. If you concentrate on helping others and being kind to others, you will grow infinitely as a human being.

These basic changes in attitude and perspective are sure to be a hit with anyone who dares to be bold. Don’t forget to always smile and be thankful for the little things.

copyright-2017

all rights reserved – Maria De Leon MD