Honor your body: by Maria De Leon

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Coming to terms with the feelings and emotions brought on by the new changes in your body is a huge part of living with a chronic illness like Parkinson’s. Especially for us women who may already have issues about our bodies before the diagnosis occurred. Therefore, in keeping with the fact that we are all Divas and we recently celebrated International Women’s Day –  I want all of us to be kind to ourselves. We are beautiful!

When I was first diagnosed with Parkinson’s disease, my body image was the furthest concern from my mind. All I wanted to know was which medication I was going to take first and how fast would I be able to return to normalcy never expecting that my body image would change in more ways than one ….most of which were unexpected.

Of course neither did I count on getting recurrent thyroid cancer soon after my Parkinson’s diagnosis which brought on a new set of concerns and life changes along with a whole slew of side effects related to both the radiation and the new PD medications.

I was never considered thin but I was shapely in a good way, so I was told, but suddenly my weight ballooned to over 200lbs due to lack of thyroid hormone coupled with inactivity brought on a severe and total body wash out. For nearly a year, I slept almost 24 hours a day, I could hardly dress myself much less drive or care for anyone else …even sitting up to watch a movie drained me completely. Of course at that time, I was just trying my best to survive and live my life as best I could…far from my mind were the thoughts of diet, calorie intake, or weight concerns.

I was more concerned about my hair loss…although, realistically no one other than me was worried about eventually becoming bald since I have been blessed with an enormous amount of hair. Yet, it was very distressing to see hand fulls of hair on my pillow each time I awoke and see hand fills more fall as I tried to wash my hair – poorly I might add due to both Parkinson’s and thyroid disease. I was so weak I could not even hold my head up ..the little I did walk was always with my head down..which was interesting to notice everyone’s shoes. On a rare occasion, I ventured out to the store with my friend, as I was pushing the cart rather holding on to dear life I noticed a beautiful pair of Royal blue high heels pass on by and I so wanted to know who was the woman wearing such exquisite pair of shoes to a grocery store. I concentrated all of my efforts to get a glimpse of the woman by cocking my head forward and looking up…when I realized it was an older woman ..probably 70 years old, a tear trickled down my cheek – because here I was in the prime of my life and I could not even do basic self grooming much less wear a beautiful pair of shoes (my favorite thing to do).

Ambulating slowly, changes in vision, stiffness, tremors, balance problems are all readily acknowledge ways in which Parkinson’s affects a person living with PD but the aesthetics aspects are not high on the list like changes in skin, hair, and of course weight issues.

Although, initially all my weight problems or at least the majority were related to my thyroid over the years my weight has gone up and down due to Parkinson’s medications which has been rather frustrating. Then of course are all the tons of steroids that have been pumped into me for asthma and recurrent back pain.

Even though some people can experience weight loss, most of us women have just the opposite effect. this is because the medications tend to cause bloating, water retention and increase our  cravings for sweets (this is all Parkinson’s patients), compounded by the fact that our bellies protrude more due to age, possible hysterectomies and slow gi motility and we are fighting an uphill battle especially when our activity decreases due to physical manifestations of the disease. plus, although it has not been well studied but i have seen it time and time again an increase in weight in women who have had DBS surgery. so all these things together may cause us undue stress when we no longer can fit into our favorite dress. Yet, our doctors simply state, “you must lose weight!” without really understanding all that is entailed.

But, when your kids start noticing that you where a lot of ‘stretchy pants’ – the message is clear. What to do next?

So you start with  accepting your body and learn to appreciate it and enjoy it. Never give into self pity or despair. Someone once said that ‘body acceptance is a journey not a destination.

Begin by loving yourself and start by making small changes- change the things you can like eating healthier, exercising more, seeking a nutritionist advice,  joining a support group. However, we must also remember that one of the biggest contributors to weight increase is poor sleep. As a PD patient we all know how hard it is to sleep sometimes. all last year i took advantage of this to stay up all night writing but although I seemingly accomplished a lot I only manage to add insult to injury when it came down to my health and weight issues.make sure that if you are having sleep issues you speak to your doctor and start by having a routine – no t.v. in bedroom, keep room dark and cool and no electronics before bed time; of course daily exercise in the am helps with this as well.

Acknowledge how you feel – its not vanity to want to look good but is more important to be HEALTHY – a heavier person can be healthier than a less heavy one so don’t get hung up on the actual number on the scale. don’t hold yourself up to an unrealistic standard which can only be harmful- talk to a caring and knowledgeable physician or medical professional. Always focus on the POSITIVES!!!

I am enjoying my life and doing what I can to minimize any further weight increase while working once again on losing unwanted pounds -. getting plenty of rest…when my body calls for it and sleeping at least 8 hours a night. Proud to say, I can now parade around in my own beautiful pair of blue high heels even if it’s just for a short period of time.

@copy right 2017

all rights reserved by Maria De Leon MD

 

 

 

Valentine’s Day in the Parkinson’s Diva World:by Maria De Leon

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All of us who are moms and have children know that the day we first heard those precious cries our entire worlds changed. Where Valentine’s Day used to be a day I looked forward to get prettied up and taken out to a fancy restaurant, since my daughter came to us it’s all about her.

When she was just a toddler , I loved the enthusiasm she would have for trying to get ‘something’ for her daddy and me to show us how much she loved us…usually some type of art design she would hand make. she would wake up at the crack of dawn to jump on our bed to please hurry up and get up so we could open our presents! (sort of like Christmas in reverse!) the joy in her eyes was all I needed. This was love personified. I have always been thankful to God for this lovely angel He put in my arms!

Over the years, it has evolved from giving us her sweet cards that said ” I love you mommy! with letters missing or upside down to me finding ways to make her happy and show her how much she is adored. We would make heart shaped candy necklaces and bracelets and get Barbie dolls wearing valentines colors or get matching teddy bears that would say ‘mommy and me’ and even matching necklaces with same inscription.

It’s no secret that I love fine chocolates – so of course I look forward with anticipation to this day to previewing all the wide selection of deliciously scrumptious chocolates available. I am a particular fan of salted dark caramel chocolates, but the thing I look forward to mostly is getting some delicious chocolate covered strawberries. It seems that as my lovely daughter has grown into a beautiful teenager, she too has developed her mom’s palate for fine chocolate. So where once, I could sit down and enjoy such treats paired with a sparkling champagne its more difficult to partake of such indulgent behavior  since I became a mom of a teenager. I scout out the Internet and stores for deals of the best fine chocolates and make sure that I get everyone a box yet upon arrival they all quickly disappear and I am left with wrapping paper and the scent of chocolates in the air.

Chocolate covered strawberries disappear even faster than the chocolate without a lingering scent left behind, followed by “I thought they were mine!” Me being not so much of a kitchen goddess no matter how many times I read the instructions to melt the chocolate for the strawberries at home, I always end up burning it- so I have to wait till someone that can actually FOLLOW INSTRUCTIONS WELL do them for me like my mother, or brother or wait till a special occasion and they are sold at the store.

But, invariably the bond between mother and child is strong because in the end, she will come to lay down next to me in bed and say like before when she was a child: ” I love you Mommy! you are the still the best mom in the world, even if I don’t say it much! Sorry, I ate your chocolates but I got the ones you love right here!” followed by a big hug (which I am thankful for since does not happen much nowadays since she is a teenager).

But, Valentine’s would not be complete without the awesome, always, clever gift from my daughter….my very own diva  lipstick by none other than Louboutin – in red of course! Now, I a truly feel like a Parkinsonsdiva!

Sure I have a fancy (RED) lipstick but above all I have the love of the one that matters most to me in the world- my daughter!

Happy Valentines Day to Everyone! 

Wishing you much love today and always!!! Enjoy something sweet to boost that dopamine-& hug your loved ones today- hugging is the best way to release happy chemicals in your brain & Don’t Forget something RED in honor of Women’s brain health!

xoxo- Parkinsonsdiva

 

 

 

 

Fast & Furious Life of a “Diva”: By Maria De Leon

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The year has taken off at a fast pace and I am barely able to keep up…my goal of returning to the pool and walking has not quite panned out- already beginning to feel the weight of it all. I had a wonderful holidays with my family for the first time in almost 10 years I actually felt like celebrating. I was still basking on the joy of tradition and family when life takes an unexpected turn. I should be used to this but with this illness it seems that I become less able to cope with sudden changes and stresses leaving me a bit out of sorts.

My mom had barely left when I receive a call she was hospitalized- no chance to rest. I did a mad dash to Houston and as I approached the hospital a sense of doom, grief and Deja-vu took over me particularly as I walked into the main corridor heading up the elevators to the same floor where my dad had last been hospitalized before the bomb was dropped on our lap. My mom was now across the room my dad had last occupied and we were being taken care of by the same nice hospitalist whose demeanor saddened as well as he entered the room and saw my mom laying there. Upon discharge the attendant was not certain who the patient was since both of us were in pretty bad shape.

Of course after discharge mom could not stay home alone so back to my house we were. So it has been a comedy of errors taking turns caring for each other- the worst days were when she was extremely in need of my care and I could barely function. The day was especially trying as I had to go up and down the stairs to tend to her. By the end of the day I felt like I was crawling up the stairs. I kept reminding myself that at least I got a weeks’ worth of exercise, as per my account!

Trying to get her down from a high bed to the bathroom when both of us were having various degrees of vertigo and dizziness was something to behold. Equally difficult is attempting to sleep with her since she needs rest but the stress of it all has kicked my REM behavior into over drive. More medicines for me and a bit more for her.

Then the hardest part came telling her she has a brain tumor – although most likely benign still a “BRAIN TUMOR.” Having had my grandmother die from a similar condition does not sit well with me. I try to remain optimistic and not let her see my fear and worry. I crumble a bit more inside as I imagine not having her around, I gasp for air. Even though I try not to think about it, I wonder is this also my future – something else to look forward to?

So I do my routine mental status exam to ensure no interruption of brain function but I seem to be struggling more with word finding than she is – takes me 3 hours to recall the name of a “hummingbird.” I am exhausted!

I just pray for strength to care for her and for complete resolution of her tumor. Meantime, I keep holding on to Hope and faith and focusing all of my energy on my beautiful daughter. I say to myself “Que Sera, Sera!” As I drift to sleep with thoughts of ….sitting by the beach in Hawaii.

Living La DIVA Loca! : By Dr. De Leon

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No Matter the occasion put on your favorite pair of shoes and dress for success!

In my shoes sometimes I want to cry,

In my shoes sometimes the way seems all uphill,

In my shoes sometimes I feel like giving up,

In my shoes sometimes the battles are too tough to bear,

In my shoes sometimes life is unfair,

and even though I fall and stumble I always get up,

Because, In my shoes God is ALWAYS fair, tough, and does not give-up on me or those around me and makes my journey with Parkinson’s more than a just a bear!