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




Cancer & PD: What now ?: by Maria De Leon

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“You  promised me, Lord, that if I followed You;

You would walk with me always.

But, I have noticed that during

the most trying periods of my life

there has only been one set of footprints in the sand.

Why, when I needed You most,

have you not been there for me?

The Lord replied, “the years when you have seen only one set of footprints, My child, is when I carried you.”

excerpt from ‘Footprints in the Sand’-  author unknown

Each time I have had to confront the ‘C’ word I have found solace in this beautiful poem. I hope you can do the same knowing that you are not alone and greatly loved.

Seems like when everything is going well in our lives even with PD because symptoms are finally controlled and we are in our groove doing our own thing life is pleasant and full of possibilities. Seems that the sun might be a bit brighter than usual and the foliage we love is more colorful than previously thought. But, as things fall apart or tragedy hits our lives, we suddenly experience a souring in all our lives pleasures and activities.

You begin to think it is bad enough I have to live with Parkinson’s disease but now I have to deal with this monster called CANCER!

Some may be tempted to do nothing or become paralyzed and consumed by fear of the unknown.

Today, I just want to say “you can do it!” to those of you who are battling cancer in the midst of PD.

You are probably feeling like life is completely unfair, right about now. Well, let me put your mind at ease-IT IS!

However, this is no reason to draw up into a ball and hide under the covers- which I am sure you feel like doing some days more than others. Perfectly normal- I have been there way too many times myself. This my friend is the time to ‘summon your inner Diva’ and give it your all. When we were given a diagnosis of PD, we felt as if our world was ending but nothing compares to hearing you have cancer. Suddenly, the days seem so finite and you begin to take account of your entire life. This itself can be an eye opener because when we are faced with mortality somehow things automatically come into focus and we can clearly see what is truly important and of value in our lives. Go ahead and use this experience my esteemed reader as a chance to grow spiritually as well as an individual.

I like to think of these experiences as pearl makers!

For those of you who are oyster lovers, fresh oysters are a big treat, but  you also know how stubborn and hard the outer shell of an oyster can be. Shucking an oyster can be hazardous but sometimes can prove even more rewarding then anticipated when you discover the treasure within. We sometimes can become hardened by lives circumstances as in living with a chronic illness like PD protecting our soft, vulnerable inner self.

But, it may take another illness like cancer to put a crack in our shell causing us major irritation as a grain of sand does to the oyster which through much pain, discomfort and adversity is turned into a gem- a beautiful pearl!

First realize that you are wonderfully made and everything has a purpose and a time under the sun. Then let go of any anger, frustration, and pity party’s and concentrate on getting better.

This means take care of your Parkinson’s disease to make sure that you are strong physically and mentally to undergo any and all treatments required. Listen to your body- rest when you are tired and eat whatever your body demands -it always knows what we are lacking in. Let your friends and family pamper you and don’t try to do everything yourself or put up a front of being well when you are not. Although, the recovery will be slow and uncomfortable it will be much quicker if you allow yourself time to heal.

When I underwent radiation for my second cancer, I spent the first 6 months just sleeping. I was so exhausted that even watching a movie would  drain me. Even the last 6 months of that year- I relied on friends heavily to help me get things accomplished in the house and so on. Don’t let pride get in the way- we all need help sometimes.

Despite the fact that cancer is not easy to confront and it cant always be beaten- it does not have to get the best of us. we can still be a blessing to others.

Remember, that a spirit who is able to find good in adversity is a true gift from above.

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]