Something’s Missing: By Maria De Leon

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“Let God’s love touch you like an ocean breeze…”

A boat without a sail, …an empty bird’s nest, a lighthouse without light…we can walk past these common objects a hundred times without paying much attention or allowing our minds to focus on the missing parts. Yet, when something happens in our lives out of the ordinary, like getting a diagnosis of Parkinson’s disease (PD), we suddenly stop and begin to take notice of the missing components that rightfully belonged with those things we never paid much mind to. We ourselves begin to feel that something within us, once an integral part of our beings is no longer there.

Can you relate to this feeling?

The longing for the old self can be devastating initially. No one else can comfort us no matter how well intended they are. Perhaps, friends are encouraging us to look beyond the illness directing our thoughts towards the blessings in our lives such as family, friends, and loved ones. But despite the good intentions, the initial optimism from everyone else can reinforce feelings of negativity within us, or heighten our grief and depression making us feel like somehow we are the ones not strong enough! Ultimately, this does not fix the desire of the newly diagnosed PD person to revert to the old life, to wish it was all a dream, or to prevent the mourning of something lost.

However, I say to you my esteemed reader that if you have a loved one, a friend, or a spouse now feeling this way, the best remedy is a tender hug and a listening ear for as long as it takes without commentary.

To you who have just been diagnosed with PD, I say courage. It takes lots of it to let go especially in such a deep personal level when the future seems uncertain and frightening. It may require you to change the focus of your life, as well as the direction of your sails, and begin expanding your energy on new horizons but it is a step that must be undertaken at some point. The grief and tears MUST cease and the windows of our hearts once again opened wide open if we are to again enjoy life despite PD and have peace in our hearts.

In time, you will discover that part of you is not missing at all it has simply transformed itself giving birth to something more beautiful like a caterpillar which has morphed into a majestic blue butterfly.

Go ahead spread your wings & be free!

blue@copyright 2016

all right reserved by Maria De Leon MD

Go PINK & THINK BIG! : by Maria De Leon

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“Don’t quit, suffer now and live the rest of your life as a champion!” Muhammad Ali

October is breast cancer awareness month but for those of us who live with Parkinson’s disease in our lives it is always PD awareness month!

But, today I would like to start a new campaign in support of all my Parkinson sisters around the globe who also have had the misfortune of being diagnosed with breast cancer while living with PD. I just spoke to a few young women the other day who are currently undergoing treatment for breast cancer while battling their PD symptoms. Take it from someone who has had the pleasure of having recurrent melanomas and thyroid cancer (increased risk in PD as well) in the midst of PD to sympathize with your plight! Although, technically not the same. However, the anxiety, worry, uncertainty, and initial apprehension are all the same especially when someone with poor  bedside manner calls you after a long period of time after tests, which being in the medical field would only indicate everything was okay, only to be told over the phone test are abnormal and you have 6 months to live!

The stress of having to have multiple doctors visits, possible surgery, followed by chemo, or radiation or both can send your PD symptoms into overdrive! Even if you had no PD any normal person would be spent. The mental anguish of perhaps having a mastectomy weather unilateral or bilateral can be equally heart wrenching. Here you were perhaps never paying a single thought to those mounds of tissue hanging from your chest and might have even complained about them a time or two about the size or shape etc. But, as soon as someone threatens to remove one it suddenly becomes a personal affront on our femininity. Although, we cant rationalize the sudden attachment to these so called breast, we truly grieve for their loss. We suddenly may feel less than we were or less worthy and we feel shame and guilt for thinking such superficial and inconsequential thoughts after all removal may mean saving our lives – yet we grieve. These feelings usually are magnified in the presence of our already debilitating PD illness. So beware. Do not make any decisions when you are depressed- it leads to poor judgment.

I say grieve if you must. It is absolutely normal to feel the loss of something so feminine as your breast. But, don’t dwell on it. you are still you. your beauty comes from within. your spouse or partner will still love you for who you are. you must first love yourself. Talk to your doctor, a counselor, a friend, even throw a party for the loss and celebrate new beginnings- increase medications for depression before undergoing treatment. Put your affairs in order. this will give you added peace of mind and give you some control over your life. Talk to your physician about increasing dopamine medications temporarily to handle the stress of surgery, chemo, radiation etc.

Then concentrate on getting better. Fill yourself with positivity and love. Meditate and fight as if your life depended on it because it does and others are looking up to you! Remember you are strong. You have within you the seed of greatness!

Early Detection is always the key to best outcome with any cancer-especially breast!!

Because unfortunately we women with PD have an increased risk of breast cancer particularly those with the LRRK2 gene we need to always be vigilant. Discuss with your physician this risk so that you can have appropriate follow up especially if already family history of breast cancer.

  • Do routine self -exams-best to do in the shower!
  • Exercise & maintain a healthy weight
  • Breastfeed if possible (decreases risk of breast cancer- too late for me!)
  • Limit alcohol intake which will also aid with your PD symptoms
  • Limit menopausal hormone replacement (still controversial- talk to your neurologist/MDS- some studies have shown reduction of PD risk after intake-not going to change if you already have PD) [Parkinson’s Diva]

GO PINK & THINK BIG- I KNOW YOU ARE BIGGER & STRONGER THAN EITHER DISEASE!!!

Sources:

http://cebp.aacrjournals.org/content/16/6/1081.full

http://jnci.oxfordjournals.org/content/102/6/371.full

Kitchen Goddess No More! By Maria De Leon

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At some point you just have to let go of what you thought should happen and live in what is happening.”- unknown

Do you guys remember the Enjoli perfume commercial? I was always inspired by that commercial because I thought I could do everything- just like her “I could bring home the bacon fry it up in the pan – work till five o’clock and never let my (husband) forget he was a man!”

Where do we get these silly ideas that we could be all things to everyone and do everything well no less? At least before PD, I had a chance of making it work -cooking, cleaning, taking care of family, home, husband and maintain a full job but now as my illness advances I find it increasingly difficult to do one of these tasks well before being completely worn out!

Let’s face it being a kitchen goddess was never my forte- except for a brief moment in time after my PD struck and I was stuck at home I began experimenting with food and dishes and suddenly my family was enjoying my savory food for the first time which made me believe I could do this forever…what was I thinking?

I am no Maria Croker …I discovered this recently as I have begun to have difficulty even with minor things like washing dishes. The once unused dishwasher, which was installed in my kitchen for sole purpose of increasing value of our home, should we need to sell it, has suddenly become extremely appealing. although, I completely recent the fact that I have to rely on a machine to make my dishes sparkle as I was once able to do on my own. But now even after washing dishes three times I find much to my chagrin that they are not entirely clean which only makes me want to scream.

I was consoled by the fact that at least I could for my family that is until I had my nephew and mother over for the summer and they prepared such exquisite gourmet foods that after they left, my first meal of the season was met with less than a stellar review…my husband was gagging and my daughter’s only words were when is my cousin coming back? Needless to say my ‘chewy meat with peas’ is not something we will be having again!

So I have decided to share my kitchen and kitchen goddess title with whom ever is willing to cook …and is not stressed by the process as much as I am.  I will be happy to claim the title of Diva and cook only on special occasions when I am feeling well and I can pour all the love into the food! For I have discovered that in order to be a great chef you must have passion and love for the art of cooking otherwise the meal will simply not taste good..

But no matter who the cook in the house is, I like for my daughter’s memories to always include an image of family around the kitchen, a simmering pot on the stove and me. Kitchen goddess or not – even in the midst of PD my kitchen will always be the heart and meeting place of our home where great stories are told, food is shared, bonds are forged, laughter and dancing takes place, and lasting memories are made.

10 Tips for a Divalicious Easily Accesible Kitchen for Every Parkinson’s Person: By Maria De Leon

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I kiss better than I cook.”~ Suzy Toronto

In my recently published book “Parkinson’s Diva: A woman’s Guide to Parkinson’s Disease,” I outline some strategies to make life easier while working in the kitchen for those of us who have chronic illnesses like PD.

We all experience ‘good days and bad days’ as my patients used to tell me. However, things can get down right tricky if you are the one not feeling well and everyone is looking at you for nourishment. There you are listless, barely able to control your tremors, dystonia, dyskenisias, tears, or whatever else Parkinson’s has in store for you that day. Now, you are supposed to do what? COOK! But, You can’t even bend down to get the right utensils or make it to the kitchen area.

So here are 10 strategies to make your life easier while making your kitchen functional and accessible without losing its charm.

  • First, get rid of breakable dishes. Get plastic or durable-non-breakable dishes

You do not have to sacrifice style for practicality. Make sure that these dishes are both microwavable safe and dish washer safe. I have nearly replaced all my day to day dishware and cooking sets because got tired of flinging things around and spending more time cleaning then cooking!

  • Second, make sure every one has special devices or gadgets to open jars, cans, and bottles as well as easily grip things. Get both that help with grip and also give you leverage to make turning easier. There are many grippers you can purchase cheaply. QVC had some nice practical ones that where also whimsical and came in variety of colors. Mine is polka doted blue! You might even want to mount one on the wall that allows for single hand use- However, have to consider position. Must be at waist level and near the edge of a wall so you can reach easily especially if using a wheelchair, scooter, or walker.Kuhn-Rikon Polka Dot Ultimate Auto-Attach Can Opener - K34857

Kuhn Rikon Polka Dot 5-1 Jar Opener - K38502

  •  Third, think about  de-cluttering your kitchen space. Remove any non essential materials from counter tops as well as removing any furniture that is obstructing easy passage to and from kitchen area as well as around the kitchen to make maneuvering easier especially if using walking assisting devices or wheelchairs. Get rid of carpets which might cause you to trip. If possible get tile floors that have a little bit of shine for easy gliding but do not make them too sleek because I don’t want you falling. Also, make a design in the pathway to kitchen and around your work area that will visually stimulate your gait and avoid freezing. Do stripes, or checkers, or color gradation, and mark door ways with a clear transition by placing strips of different color and/ or material to prevent freezing as you transition from one room to another. I personally love natural wood floors.you can make beautiful designs with these as well. plus they are easier to traffic with walkers and canes. same can be done with other type of stones. You don’t have to break the bank in making these changes to your home and kitchen since there are now use expensive  many less expensive materials to choose from like natural wood imitations that are just as beautiful. these alternatives could prove not just better for our pockets but easier to maintain. By using simple techniques or making small changes  you dont only have a more functional, disease friendly space but also give your living space an air of elegance, sophistication and spaciousness. But, remember to keep your paths goal oriented as the one in the picture below leading to television, bathroom, bedroom ( use in most trafficked areas to avoid falls and other gait impediments).

 

  •  Fourth, once you have removed unwanted and unused objects from around the kitchen floors, cabinets and counter tops your newly decluttered  kitchen area is guaranteed to make your life simpler. However, because all of us who have Parkinson’s disease and other physical disabilities have trouble bending and climbing due to the vertigo, dizziness, unsteadiness, along with stiffness caused by our disease we must be able to easily access our non-breakable cooking dishes, our condiments and other essentials for cooking. Therefore, we need to organize our working space as well as our cabinets so that everything we need is at eye and waist level; thus avoiding getting stuck on the ground or falling of a step stool. (I have all my condiments in a pull out drawer next to my stove). Also consider replacing all or a big portion of your cabinets with pull out shelves with dividers. This way you can see what you have and can store everything easily. I much prefer this to rotating shelves because those tend to get stuck plus are usually very small which reduces your storing capacity but also may make getting things out harder due to our loss of dexterity and fine motor control. On the other hand, the pull out shelves can be customized for what you need. they come in many sizes or shapes prefabricated or a good carpenter can install and customize further to your needs and specifications. I had this type of shelving installed in my office due to my chronic back problems. But, as my PD has progressed I am now implementing in my own home, since i have found myself storing all my cooking pots and pans along with other bowls and utensils in the middle shelves making it harder to get at without dropping and breaking things.
  • Fifth, once you re make your kitchen floors, install right shelving, get appropriate dishes but cooking is still a challenge because you have a hard time standing to cook due to pain, leg cramps, weakness, and off balance issues. In order to bypass some of these issues consider getting a chair to use while cooking, especially if you are like me and have a stove top on an island (which I highly recommend gives you more room to maneuver). This should be something light that is easily moved and folded to be out of the way. The chair or stool should have arm rest and a back to make sitting and getting up easier. This will help to minimize fatigue while cooking as well as avoid falling especially if using canes and walkers because hard to cook while holding on to these..
  • Sixth, I recommend a refrigerator with two doors. This way you can put things at eye level and not have to bend or simply may need to reorganize the shelving there as well.
  • Seven, I find that I now have a hard time washing dishes- the scrubbing is not always as precise as I would like it to be. Therefore, a dishwasher may come in handy but make sure your dishes are safe to place there and that they FIT! ( as I discovered one Thanksgiving Day that my beautiful hand painted dishes would have to be done by hand because too big to fit into dishwasher). The realization took the glee right out of me of having had the pleasure of serving my guests in this fine china!
  •  Eighth, make sure that your sink has an extension hose making it easier to access the water and rinse dishes etc. especially if you have limited mobility and use walker, motorized vehicle and the like.
  •  Ninth, get a nice food processor and/ or blender to expedite things in the kitchen and help you chop, grate, and liquefy foods without causing injury to yourself. they also make boards which have a way of tethering it to the counter top as well as keeping whatever it is your cutting in place to to avoid cutting yourself, spilling things all over the counter and floor due to tremors and dystonia.
  •  Tenth, Don’t sweat the small stuff! Every Diva has to know her limitations. if cooking is NOT your thing or maneuvering around the kitchen proves to be nearly impossible consider alternatives- of course there is ALWAYS take -out! But, this can get tiresome and expensive. You can still prepare a home cooked meal and be the QUEEN of the castle without much work. I highly recommend every woman, person with PD or other chronic illness should own a nice crock pot! Mine of course is red!!!But along with this you must have at least one good cooking recipe book for crock pot. There are many out there. However, I especially love the collection by Debbie Thornton.

Any Blonde Can Cook

10 Things Every PD Woman Should Have: By Maria De Leon

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“Something perfect to wear if the man of your dreams wants to see you in an hour.”

1) A nice silk night gown or pajamas to help you feel feminine, cool and also make sliding and moving in bed a lot easier when you wear off or get rigid.

2) A nice pair of red flats or any peep toed flats of your favorite color that can be worn at fancy occasions or any season to provide a pop of color which can be dressed up or down. Easy to put on when stiff or dyskinetic. But, make sure soles are slippery if have tendency to freeze to avoid falling. Payge Peep-Toe Flats

3) A little black dress/ black well fitted suit – this will be your to go outfit when going out on the town with the love of your life or when facing congress trying to change the world.

4) A Statement necklace- long of course so won’t have to fiddle with clasps- could be a set of pearls or bold gold necklace -something to make a statement and make you feel feminine. Add a touch of class to any occasion and is season- less.

5) A favorite lipstick -one that you can always go to that will make you feel confident and feminine. One that by itself can give you strength to conquer the world. 

6) A print copy of your favorite book by your night stand. One that will always inspire you to continue the journey even when the days seem gloomy.

7)  A favorite scent that is uniquely yours! When I was in medical school I wore “passion”  all the time. It is funny how a scent can define or identify a person. One day in class when studying the brain, we touched upon the olfactory nerve (one that helps us smell) while the Professor flashed a picture of a bottle of PASSION on the screen, to my amusement and amazement in unison most of the class shouted ” Maria!” Upon seeing the picture up on the overhead.We all had a big laugh. It was there that I discovered the power a fragrance can have even subconsciously. I like one that not only smells good and brings your best attributes but the name itself is empowering – it helps if it is visually beautiful or appealing as well! But, that’ s just me!

8) A Hand sanitizer in your purse- it helps protect you from all the germs around and helps prevent spread of germs as well. I like bath and body brands not only do they have great fragrances but come in stylish bottles for every occasion.

9) A sturdy piece of luggage to pack your medications and essentials at a moments notice should the opportunity arises to get away for a weekend or longer.

10) Most important, every woman should always have an idea of who she wants to be and accomplish along with a plan B just in case this PD throws another curve ball…

@copy right 2015

all rights reserved by Maria De Leon

A day in the Life with PD: by Maria De Leon

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10526144_743459779045084_7301643744003029952_nImperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.” – Marilyn Monroe

Ever since I was a young girl, I have always enjoyed modeling and getting all jazzed up. Often putting on run way shows and singing extravaganzas in my grandfather’s backyard for the entire neighborhood. But, as a busy solo neurologist on the go on call 24/7 unless out-of-town, I relished those few and rare moments where I could play dress up.

One thing I discovered over the years while purchasing clothes particularly dresses is making sure that you ALWAYS try them on before purchasing. Because even if it’s your size it may not move with you as you like for the occasion in mind. Be sure to try the dress in various positions. As I learned the hard way. I bought this gorgeous sateen empire waist low-cut teal dress which fit in all the right places …extremely elegant and sexy. Well, the day came when I was ready to wear my priced possession and show it off at a friend’s wedding, I suddenly discovered that this magnificent dress only fit me perfectly as long as I stood upright. However, if I sat down the front of the dress would suddenly become extremely lax and would open wide exposing the girls to the world unless I sat with my back completely arched and head tilted to the side as if posing for a calendar photo shoot….not having brought any other wrap ..this was the way I had to sit throughout the entire wedding ceremony.

Feeling all eyes on me instead of the event at hand, I had to concentrate on maintaining my posture rather than focusing my attention on the beautiful wedding in the most serene, picturesque outdoor scenery surrounded by lakes and huge 100-year-old trees. Needless to say that by the time the ceremony concluded I had such a crick in my back and neck.

So, the other day when I was asked to do a photo shoot for a magazine I was reminded of that day in the woods and I had to laugh.  I was not sure I could sit immobile in a certain position for hours once more now that my Parkinson’s has advanced. But, I thought surely they will only come and take a couple of pictures – no big deal. I figured one or two clicks and done. I never expected an entire production. When the crew arrived and started unloading cameras, lights, suit cases, and other equipment which filled up most of my living room. I knew I was in for a once in a life time experience.

My mother -in- law had fixed my hair but with all the perspiration that comes along with PD compounded by that day’s humidity and nervous anticipation, my hair curled back up to its usual frizzy state in less than 5 minutes. Although, I had carefully prepared my clothes the night before, that day I must have changed 5 times at least. Finally, settling on the right outfit and accessories a minute before the crew arrived. the rushing along with frustration of not being able to move quickly caused me to sweat even more despite having the room in the low 60’s. anyone who would have witnessed the down pour would have assumed I was menopausal especially since I had a patch on (neupro). I guess I will have to move to the north-east when this happens. Despite the perspiration and rushing, I was proud of my choice and felt I had done a good job with selection, apparently I was the only one that felt this way. After my make up was done I was asked to show them my closet so they could pick out my clothes. After several selections the RIGHT outfit was identified! I was ready for a nap and we had not even taken a single picture! No other choice but to up my medications to keep up.

I thought I knew how to apply make up, apparently I have been doing it all wrong! The key to good make up application is to make it look natural and last all day. I was amazed how wonderfully smooth and soft my face felt all day long. Moreover my lipstick did not feel like a cake on my lips yet never once peeled off or smeared on my cup (which I hate!).  I have  decided it takes great deal of skill to be a good makeup artist one which I don’t fully possess.

All throughout the photo session the team of photographers kept asking for makeup touch up and hair  touch-up which tickled me to death. After 3 hours of continuous photo taking in various rooms of the house and many poses, I was ready for a nap.

I felt like I should start my own portfolio for a new modeling career after 4 hour photo shoot session!

As I was drifting to sleep with my thoughts still racing from  exhilaration of the days activities, I thought how ironic had it not been for PD I never would have had such a wonderful, fun-filled day!

I slept like a baby that night. Who knew the secret to a good night’s sleep with PD was having your picture taken?