Women’s Health & Sexuality: By Maria De Leon

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“It’s not the size of the boat but the motion in the ocean…”

(Image by Ross Webb)

There I was, in the middle of a crowed classroom, addressing students and faculty alike about human sexuality  and talking about “orgasms” and “premature ejaculation,” with not as much as a wave of discomfort when it suddenly dawn on me – I had somehow morphed into Dr. Ruth (Westheimer)- iconic sexologist of the 80’s. I chuckled inside a bit as I continued lecturing. If someone one had told me that a shy, introverted young girl with “rose-colored” eye balls  and little world experience would become this carefree, self-confident, mature woman expounding on the issues of sexuality, I would have died laughing in utter disbelief.

Nevertheless, with age along with living with a chronic illness has given me a new found freedom one and  voice to help women of all ages deal with chronic illnesses particularly those with chronic neurological diseases such as PD. Having treated many women over the years as well as living with PD myself, over the last ten years, has made me realize the need for awareness and much needed dialogue in this vital aspect of  every woman’s life. because sadly until only a few decades ago, there was a misconception regarding women’s sexuality which  was promoted by men, I am sure ( some sort of ploy to keep women under control),  that women have a decrease libido compared to men. This of course is entirely false, although as in men there are some women who have greater sex drive than others.

Yet, despite the fact that when chronic illness strikes sex and intimacy are unwittingly place in the back burner for many of us, sexual expression and sexuality is still at the top of our lists. this is one of the factors we deem important when we think of quality of life. However,  it seems to me that for centuries women have gotten the short end of the deal in this department thus going on for years suffering both physically and emotionally from lack of  appropriate care.

Here are some tips to become a SEX Goddess again ( at least in our own minds!)Rita Hayworth 1941:

First, it is important to recognize that both men and women suffer from sexual problems when it comes to chronic disease like Parkinson’s. Although, some of the issues are inherently different we share many things in common such as fatigue, depression, hormonal changes, lack of energy, medication side effects, stress and anxiety all of which can put a kibosh to our libido. Therefore, it is imperative that you feel free to discuss these issues with your physician as soon as they arise and not make it a “door -effect” as I like to call it… I.E. “oh by the way doctor, I have this problem when I have intercourse,” as you are walking out the door of the examining room. of course we must also remember that like the infamous “birds and the bees” sexual prowess’s can be wide and varied depending on partner, experience (history of trauma, or abuse), culture, religion, etc.

For us women the reasons for sexual dysfunction- this refers to

  • lack or loss of sexual desire
  • anxiety during intercourse- muscle stiffness, loss of bladder control
  • pain during intercourse- recurrent urinary infections
  • dryness- this is one of the most common problems from autonomic dysfunction (decrease blood flow) ; hormonal changes
  • trouble achieving orgasm
  • vaginismus- muscle contract involuntarily preventing penetration

How to prevent Parkinson’s from hijacking your libido and sexual desire:

Having sexual problems may feel like an insurmountable task to overcome thus may be tempted to throw in the towel and give up and give into disease.  however, with lots of love, patience, and persistence you and your partner may begin to enjoy a healthy sexual interaction that does not always mean sexual intercourse in order to be satisfying and fulfilling. Sometimes SEX ( BIG and BOLD) is just s e x (barely present) yet equally rewarding.

Since vaginal dryness is a HUGE issue- try lubricants ( water based best) don’t be afraid to stop and use more if needed. Hormonal replacement topical or oral can also go a long way for this as well as help with some of the loss of libido issues.

Of course fatigue and poor energy can be a disastrous problem when trying to be at maximal arousal- thus try different times of the day or night when you are most awake and energetic- I guarantee you will sleep better and burn off a few calories in the process.

Incontinence- many of us with PD especially as disease advances may find ourselves dealing with this pesky and extremely embarrassing problem. Don’t hide or avoid intimacy altogether, instead talk to your partner and your doctor. Padding the bed with some towels or disposable urine pads like the ones used in hospital, which can be purchased at a medical supply store, can help ease the discomfort and allow you to relax.

Don’t neglect your relationship, find other ways to be intimate. I love when my husband massages my back especially since it is so stiff that I almost appreciate that as much or more depending on my mood than intercourse. spend time cuddling, or touching each other, bathing together. a single touch (hug) of 7-8 seconds can release as much natural neurotransmitters ( serotonin, dopamine, oxytocin) to make you happy.

Above all make time for one another aside from “caregiver/partner” and “patient.” This of course a lot of communication, which has to happen daily.

When all else fails or in conjunction to above  ( this will give best outcome) along with medications to help treat specific problems like infections, dryness, anxiety, incontinence, etc.; there are alternative treatments such as behavioral therapy for individuals and couples, sex therapy, acupuncture, yoga and meditation to name a few.

So go ahead embrace your sexuality and you like me may want to say

“I want it all!

I believe in love, lust, SEX, and romance

I don’t want everything to add up in perfectly neat equation

I want mess and chaos

I want someone to go crazy out of his mind for me

I want to feel passion, heat and madness.

I want it ALL!” (Mirror has two faces)

copyright-2016

all rights reserved – Maria De Leon MD

Food for Thought on the Future of Health Care: by Maria De Leon

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Now that the new president has been elected, politics aside, I am a bit excited and hopeful about the possibility of new, much needed in my opinion, healthcare changes.

As a physician and patient I have seen the drastic changes and not for the better, I might add, brought on by the recent year’s Health Care laws. These atrocious laws began targeting the medical practice since I was in medical school but only worsened in last several years culminating in a complete overhaul affecting the lives of millions of patient’s as well. As a physician, I have met only a handful of people whose’ ‘Affordable Health Care Act’ (AHCA) actually benefited while the majority of people like myself have only suffered. This is not even mentioning the breakdown in the establishment of medicine as we knew.

I don’t think I am alone when I say we need change desperately!

The first sign that that things were going array was the continues reduction of payment imposed by government on doctors with an increase intrusion of the government into how doctors practice medicine insisting on many new requirements such as electronic records-EMR (which are extremely expensive to buy and maintain to say the least) before they would compensate for our services and time. Thy also try to impose how we practiced medicine by attempting to dictate what medicines we should use on our patients .No other sector of society would tolerate such intrusions and governmental dictation on how to practice trade not related to government. Subsequently because of increased paper work and requirements doctors have been forced to increase their patient volume just to maintain their overhead and make a living. This, however, has created much discontent among patients because now (we) have to wait longer hours (even longer than previously) and be seen even shorter time because the demands on doctors time has tripled and quadrupled (especially in neurology where many physicians have left the field altogether) plus their need to make a living. Before I sold my practice, at the beginning of all these changes I was already forced to hire more clerical workers just to keep up with the demand of paperwork imposed on us. This alone was extremely stressful because it meant working longer hours just to come out barely even at times.

The increased wait time at doctor’s office or to be given an appointment by a physician especially a specialist like an MDS has created immediate discontent in all involved; but mostly in us patients who fail to see the big picture and attribute all problems in medicine to the only person we see- the doctor. 

For us patients feeling like we are not as important with the ever increasing impersonal settings with little eye contact and minimal physical interaction due to the constant need for doctors eyes to be focused on the machines required to document things and send prescriptions leaves a bad taste in our mouths particularly when already feeling scared, vulnerable and ill increasing our feelings of distrust and discontent towards our health care providers who are only human and trying their very best to tend to our needs while feeling multiple internal and external pressures. So please try to put yourselves in their shoes before exploding and feeling as if your time and your personal needs are not being taken into account.

Furthermore, the fact that prescriptions are now almost required by all pharmacies to be emailed can be another off -putting experience at the doctor’s office especially when computers fail. Dealing with equipment failure in our offices is not part of our training when it relates to EMR, which invariably happen much more than you think, is extremely frustrating and costly. Dealing with these government imposed issues of technology serve only to detract from the time spent with patient greatly impacting the patient –physician relationship. And in this society which demands immediate satisfaction for our needs, a one chance encounter is nearly doomed to failure with such high expectations from our parts.

Two personal Examples of technology deeply affecting the patient-doctor relationship are the following scenarios 1) when I was in practice my computer system crashed and took nearly a week to fix so my staff and I had no idea who was scheduled for following day to call to remind of their appointments; but worst we had no idea who would be showing up to our office. So not only did we not have charts ready (thank God no EM records yet) but could not check on their lab results nor the benefits beforehand for new patients. But, at least we could pull the charts and make new ones when patients arrived. Needless to say this caused a lot of confusion, headaches, and delays to all involved. 2) Fast forward a few years later now as a patient, I went to visit my neurologist and her system was down at the university, she had no chart, no record of my tests ( fortunately I am always prepared and had my own copies) and could not email my meds. She spent half of her time trying to email my meds then finally had to write down in a separate sheet to call in or email later.  I could empathize with her pain and frustration. Knowing that she was dealing with this all day would probably leave something out so I called the office another day to remind staff of which meds I needed.

Thus, we find ourselves in a Catch 22- 

Compound these frustrations on the physicians side by fact that patients are getting sicker and using up more hospital visits because they can’t afford their medication, are in never ending donut hole, and no longer can have medication samples or assistance as easily as before Medicare part D was instituted. Patients no longer have continuity of care essential to successful treatment because they go from Doctor to Doctor therefore never building a good rapport along with a long term care plan essential for any chronic illness. Furthermore, many patients feel flabbergasted and bamboozled because the affordable care is an oxymoron. Moreover, the majority of patients and hardworking individuals are getting less and less for their money. We are paying higher premiums yet have access to fewer doctors, medications, ancillary specialists, and qualify for fewer diagnostic test. We are forced or pressured to see more physician assistants (PA’s) and Nurse practitioners (NP’s) if want to be seen sooner or closer to our homes which can be disappointing for many who expect to see an actual physician especially in regards to specialists. Yet, these patients unjustly are paying the same premiums although the insurances and government pay less for the services provided by these other providers.

Moreover, the government and insurance companies have tried to convince everyone, doctors and patients alike, that all medications (brand and generic) are equal. The result is that previously controlled patients now are having many more break through seizures, migraines, strokes, dyskenesias, hallucinations, and falls to name a few because the changes in medications are proven to be ineffective or are no longer taking medication as prescribed because cannot afford. In my experience 7/10 times these things along with hospitalization can be prevented if either the insurance companies (which now falls under the government umbrella since AHCA was passed) would simply allow us doctors to do our jobs. Sadly, unless something is done there is absolutely no need for new research or new medications if they are not to be used in the treatment of diseases like Parkinson’s. I am appalled at the new attitudes emerging in this country calling for less medication. Stating that chronic pain can be cured with exercise- obviously these people never had chronic severe pain and calling for no or fewer medications again – they have never been in our shoes with chronic illnesses. Since I cut down the dosage of my medications because of ill effects on my heart my heart is good but my PD symptoms are no longer controlled. Am I happy to be taking fewer meds yes! Am I happy that I feel like awful without it – absolutely not! Is not just the feeling but the limitations on my body imposed by my disease without medicines that I can’t tolerate and will find a way to blend the two so that I can function better for me and my families sake.

Another issue with our current healthcare system is the substitution of brand name medicines for generic ones, which was initially based on cost, makes absolutely no sense anymore in regards to patients needs because generic medications now cost as much or more as brand name medicines both requiring an enormous amount of paperwork from your physician and their staff just to allow us to have things we need to get along on a daily basis. My husband is prime example of how the system has failed many. He has severe cholesterolemia (critical numbers) which was well controlled for years until the new healthcare changes occurred. Our insurance plan first kept increasing the price of meds then refused to pay for them so came a long list of trial medication causing a slew of side effects one worse than the previous each time and not controlling his cholesterol which is sky high..(Only thing that gives me comfort is the longevity of life in His family) we are at the point that all meds which he needs have been denied and out of pocket cost is about thousand dollars per month along with the multiple high cost medications I need this is not feasible. Thus, he is now trying a variety of over the counter supplements while I am praying he does not have a fat emboli causing him to have a stroke or heart attack.

So as I said at the beginning, we desperately need reform in the way doctors and patients are viewed (rather valued) by our government/society. With new changes perhaps the field of neurology can once again flourish and tend to the needs of an ever growing elder population in which Parkinson’s disease plays a major role. One never knows if things change enough I would be happy and capable of rejoining the ranks of my fellow neurologists and MDS to help PD persons like me without having to worry how I will be able to pay for my overhead and employees salary causing my own illness to spin out of control dealing with the external unnecessary burdens which have sucked the life of those still in the practice of medicine including my husband’s. Although, I am aware that with any new scientific discoveries, making new health policies and /or making amendments to existing policies can be a slow process but one we should all strive to see happen for our health and that of our children.

 

Contact your state representatives as well as the public policy branch of the Michael J. Fox Foundation for Parkinson’s research and let them know your specific issues with accessing health care, getting medications and seeing MDS in your area. Change cannot occur without first admitting there is a problem.

copyright-2016

all rights reserved – Maria De Leon MD

 

Caregiving is not for the faint of heart: 7 tips to make it work: By Maria De Leon

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“Don’t dwell on the disease, value the moments. the pearls of wisdom, their smile and humor.” ~unknown

 

Whoever says caregiving is easy has never really been a caregiver; it is absolutely hard work. But, if you do it with love it will be the most rewarding thing you ever do in your life. I absolutely guarantee it.

Many of us will at one point in our life be called to play this role and provide full or part-time care for someone we love (i.e. – spouse, parents, grandparents, children, grandchildren, even close friends). Some of us may even have to provide care to multiple generations simultaneously known as the ‘sandwich effect’.

The caregiver role typically falls under the responsibility of women. Because women are often viewed as natural nurtures, we are often put in this role even if not fully equipped. I recently had the privilege of speaking at a Parkinson’s caregivers support meeting in Dickinson, Texas and was very pleased to see many men attending the meeting. With the perceived increased in young women with PD, I believe that this current trend will be shifting as men are suddenly thrusted into this role. The effect on the caregiver independent of age and gender is nearly always the same.  The caregiver struggles with issues of depression, anxiety, and isolation the longer the length of time performing this duty. These issues are further compounded by rising cost of health care, uncertainty of future, and inability to work as desired to better the financial situation due to the pressing need of that person to remain at home to care for loved one.

I have on an occasion or two been responsible for the care of several loved ones in my family. Although, in two instances the duration was relatively short, less than a year; at the time it felt interminable. The stressed soared through the roof as the demands physical, mental, and emotional increased along with my demands at home as a mother, wife and physician piled on. Also, my patience decreased with increased fatigue and physical exhaustion and in my grandmother’s case, I had help from a lady I hired to watch grandma while I worked and from my spouse during weekends and after hours. Yet, at times I felt as if I would be completely shattered under the heavy burden of life’s duties and responsibilities compounded by 24/7 care of a loved one at home. Having psychotic patients at the office, hospital as well as at home can be quite maddening at times. With my father the burden of long distance was also difficult since I was the primary decision maker regarding his health. Traveling weekly and staying away from home weeks at a time was also difficult.

Now, imagine the type of stress, frustration and anxiety a caregiver must succumb to in the presence of a chronic progressive illness such as Parkinson’s disease in a loved one who have no other outside help or assistance?

Compound this feeling and multiply it ten-fold in the case where both partners are chronically ill or are elderly – the result is a veritable hot mess ready to implode on itself at a moment’s notice. Sometimes it is absolutely impossible to tend to someone else’s needs when our own medical and personal problems are at stake. I know this all too well from my own personal experience. In dealing with my father’s cancer week after week my Parkinson’s symptoms suddenly jumped up a notch. This meant it was harder for me to stay in the hospital with him, drive to and fro my house to his, and tend to his needs and whims; not without causing me to feel at times like his illness was a major imposition in my own life. This meant forgoing medical treatment for my own medical issues, leaving my daughter and husband unattended frequently meanwhile the need for larger doses of dopamine rapidly escalated to keep up with the physical and emotional demands.

I have worked with thousand’s of patients and family members who have been caregivers (partners) for various lengths of time and the feeling is unanimous. Caregiving can be exhausting, soul sucking even if you allow it by not getting outside help and allow friends, and other family members to become part of the inner circle of trust. These valuable individuals can lend a helping hand, a shoulder to lean on, prepare a meal, run errands, do grocery shopping, sit with your loved one or simply hold your hand in times of overwhelming stress. Never forgetting that the key to successful long term care depends on a few factors.

Even when you have aid from outsiders, there is an amount of stress that comes about due to blurring of boundaries. It is difficult to maintain a private personal life or achieve quiet time if continuously bombarded with people at your home. We all need respite from time to time even if it’s just to sit alone undisturbed for an hour of peace to be alone with your own thoughts.

#1 open communication –know your loved ones desires and wishes and vice versa- dreams should not die because of illness rather be modified.

#2 get support – no man is an island, we are all connected and when one is ill the others suffer as well.

#3 take care of yourself first- can’t burn candle at both ends otherwise the flame will be extinguished much sooner and your loved one will suffer and wither faster.

#4 plan activities together and separate- have friends over, do book clubs, bingo, puzzles, etc.

#5 don’t sweat the small stuff -Laugh and share stories. So what if the house is not perfectly tidy as long as you and loved one happy.

#6 concentrate in the love- look at the situation as a glass half full not half empty.

#7 this too shall pass!!! When the loved one is gone like my dad and grandmother you would give anything to have them back. So savor the moments together. Life goes by in a blink of an eye!

Today is my dad’s death anniversary, he has been gone from us for 2 years but the laugher and the love remain. Miss you and love you dad!

Leave you with a Prayer- partially composed from Author unknown

 Unknown and often unnoticed, you are a hero nonetheless.

Your love is GOD at is BEST.

You walk by faith in the darkness of the great unknown,

and your bravery, even in weakness, gives life to your beloved.

You hold their shaking hands and provide the ultimate care; 

With your mere presence you provide immeasurable comfort

and courageously face the giant of PD and its despair.

It is your finest hour, although you might be unaware.

You are resilient and beauty excelled;

You are the caregiver and have been blessed for simply being there.

copyright-2016

all rights reserved – Maria De Leon MD