Lighthouses: by Maria De Leon

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…”though I sit in darkness, the Lord will be my light.” ~ Micah 7:8 NIV

I love lighthouses. Whenever I get a chance to travel to an area known for their lighthouses, I never pass on the opportunity. These grand structures are majestic and mysterious in nature for the power they hold; yet despite their veritable importance they always stand aloof, detached and solitary. However, these magnificently stoic architectural works of art, since no two are alike, serve a very distinct function for those in need.

Sometimes, as in living with a chronic illness like Parkinson’s disease we can become so overwhelmed that we are no longer capable of identifying treacherous terrain in front of our own eyes. If we do not heed the warning of others who have a lighthouse view, the passage can turn unsafe and even dark.

Although, caregivers who are mostly women are increasingly stressed in direct proportion to the number of years spent in the “business” of giving/providing care when help is offered, the extra assistance is not readily accepted as was the case in the care of my father. One of the main issues is guilt. Many caregivers feel ashamed or guilty in admitting they require outside help; thus might even turn it away when offered or not actively seek it. The second problem I encountered in my patients as well as in my family was a sense of duty and responsibility to ease the fears, anxiety, and shame the patient may feel as he or she is losing independence and unwillingness to appear weak in front of a stranger. this was my dad’s problem who refused outside help because ‘no one would take better care of him than my mom and I.”

Here are a few tips to help spouses, care-partners, and caregivers recognize and accept outside assistance by helping them work out their fears and ambivalence.

First, we must convey to them that the perspective is much different and broader with a myriad of options when standing at the top of the lighthouse with a clear view of everything than when in the seashore in the dark and feeling alone.

The temptation to strike out on our own is always present and stronger especially in those of us who are used to taking care of everything and everyone. Initially, more so if the person is very adept, like a ship that disregards the lighthouse warnings, will continue to progress and maybe even be successful in the day to day care of their loved one for a time. Ultimately, causing not just one’s one destruction or demise but that of our loved one whom we are trying to protect; because if you are not well then neither will your loved one who then might have a quicker descent.

Therefore, learn to swim parallel to the riptides heeding the following warnings from the lighthouses in your life to a happier more successful outcome for both you and your partner.

Recognize the warning signs:

  1. Irritability– if you find yourself often frustrated at the person whom you are supposed to care for, including neglect or abuse ( verbal, emotional, physical) -NEED HELP ASAP!
  2. Depressed– you are experiencing symptoms of depression yourself lasting more than 2 weeks- especially if wanting to die, harm yourself or worse harm the person whom you care for, this includes wishing they were dead or would die soon.
  3. Others are worried or concerned about your coping– friends, family are noticing changes in your mood or behavior.

If you find yourself in this group:

  • Allow yourself to feel guilt followed by relief- forgive yourself- don’t be so hard on yourself. You CAN NOT DO IT ALL. NO BODY CAN BE ALL THINGS TO ANYBODY!!! ONLY GOD!!
  • Talk to your physician, a counselor, a spiritual leader.
  • Go to a support group
  • Go to a psychologist/psychiatrist
  • Start making plans for yourself again as you redefine your role as caregiver with assistance/new found help.

Resources for Help:

http://www.eldercare.gov

http://www.shipnpr.acl.gov.

http://www.pdf.org

http://www.caregiving.org

http://www.caregiverstress.com

http://www.assited-living-directory.com

http://www.eldercarelink.com

@copyright 2015

all rights reserbved by Maria De LeonMD

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