Capitol Hill Preparation: By Maria de Leon

I feel very blessed to be part of a greatly empowered group of individuals from all around the country, brought together by the generosity  and  leadership of MjFox foundation. We all came collectively to D.C. committed to advancing the cause of Parkinson’s disease which affects nearly 2 million people nationally.  Myself and others are thrilled to speak to congress to ensure a better future for our families and for all those of us who live with PD. We are all advocating for a chance to have the best quality of life possible and to remain productive members of society.

I, personally, have been extremely lucky to have started treatment early in my disease by way of my profession and have access to excellent physicians and colleagues who have helped me remain active for the past decade despite my illness. However many in our communities have not been as fortunate to have access to healthcare, physicians /MDS (since many states lack neurologists), or even be able to afford the latest and newest medications and treatments available making living with PD that much more difficult. Hence, I along with others have descended upon Capitol Hill to make our voices heard on behalf of those who are unable to stand with us physically and the thousands of patients in each of our communities back home.

The goal of our visit is encourage increase funding ($36.6 billion) to the NIH to help biomedical research in all neurological areas but mainly in Parkinson’s disease. We are fast losing ground as a leading medical research country with China fast on our heels; if we don’t secure these funds not only will we lose our status but more importantly human lives will be at stake with loss of employments (we have the brightest minds in the neurological sciences and without money will be forced to move on to something else) and loss of quality of living . This money also helps fund our neurologists/MDS in training without it we will face and even greater shortage. We also know that the more minds working on an issue can potentially increase our odds of arriving to better treatments and a possible cure of any given illness i.e. PD.

Secondly, we are requesting allocating $5 billion to CDC to help put the surveillance act in effect. although bill was passed to start a registry of who and where PD is most prevalent it has not been instituted formally due to lack of funding. if we are to make ways in understanding the causes of Parkinson’s in various subpopulations such as young vs. old or understanding the significance of PD pockets as the one that exists in my neck of the woods in EAST Texas a.k.a. ‘East Texas PD belt.’  Without a national registry we can only estimate the number of people affected, which most of us believe is grossly underrepresented, thus we cannot begin to address the needs of the PD community in its entirety and allocate appropriate resources if we don’t know who and where these people are. Plus, we already know and estimate that the number of PD is on the rise and expected to double by year 2040, so chances are everyone will know someone affected by this illness at some point in their lives and may even have to be a caretaker or a patient themselves.  The DoD (department of defense) also needs money to evaluate PD in military with an increasing number of its soldiers returning with Parkinson’s and Parkinson’s like diseases after serving overseas. 

Thirdly, we also want to encourage health care reform that will continue to put the needs of patients first allowing them access to care (this includes physicians and other treatment modalities), to therapies (e.g. PT, OT, and ST) without caps. more importantly, to due away with the donut hole since 80% of PD patients are Medicare recipients on a fixed income and don’t have $8000 in the bank to cover medical expenses like drug therapies. As I have said many times, I firmly believe that patients could do so much better and have greater quality of life if doctors were able to treat their patients without restrictions from the government and allow us as doctors to choose the best treatments available and deemed necessary not what the insurances or government allow.  Having affordable access to the newest treatments would allow millions of people like me to continue the work we do and even continue to have jobs without burdening the system keeping us out of Medicare and institutions.

Finally, the thing to remember is that we patients don’t exist in a vacuum. We could not make it through our days without the help and support of our spouses, families, loved ones and our team of physicians and other healthcare providers. Some have suggested that for every PD person afflicted with this disease 7 other people are affected by it including the immediate family. Thus, fourthly, we would like to support the Raise Act (recognize, assist, include support and engage family caregivers act). Being a full time caregiver puts people who are caregivers at financial disability because they are forced to leave the work force early. this is especially devastating since the majority of caregivers are women who already are at a financial disadvantage compared to men when they stop working not only is their income diminished  but the lose number of credits / earnings eligible for social security upon age of retirement.  since women usually live longer then the burden on society increases. (40 million caregivers who provide 470 billion dollars of unpaid care. 1/4 are millenniums )- thus by supporting this act and making it law we can provide assistance to those of us who have diminished the cost of the government by giving of our time and resources to care for the chronically ill (i.e. PD). this especially important because often times the caregivers themselves (especially as we get older) can also be affected by illness as well.

If you could not join us at the forum this year, you can still do your part by contacting your State Senators and Representatives from your district and ask for the above issues to be considered when voting. Ask your representatives to join the Parkinson’s caucus if not already part of it.

thank you for allowing me to be a representative ….. and let’s bring the  21st century cure act to fruition!  this acts promotes and funds the acceleration of research into preventing and curing serious illnesses.

thank you also for Parkinson’s foundation, Parkinson’s alliance support, and Parkinson’s unity walk.

 

Image may contain: 3 people, people smiling, people standing

 

 

The Road to Capitol Hill: By Maria De Leon

The count down to PD forum has begun and I have begun to feel a stir in my belly for the chance to meet with members of congress to discuss salient matters regarding the needs of all people with Parkinson’s. (on the side perhaps catch a cherry tree blossoming)

Who would have thought that one summer internship, as a high school student learning the ways of the state legislature, role playing a congressional woman would be of great benefit lo this many years later? Since that time, I have had to rely and recall my experiences in law making as I have become an active advocate for Parkinson’s disease and neurological issues in general at Capitol Hill. I am well known in the office of my State Representative Louie Ghomert  due to my many letters and phone calls. Plus, I have had the pleasure of meeting him in my home town once or twice. I still remember with fondness meeting Tip O’Neill Speaker of the House back when I was just a freshmen at college. I have also had the pleasure of serving as Assistant State Representative  for Texas for Parkinson’s Action Network for a number of years, now merged with MJFox. As Fox volunteer, I continue to serve in that function and looking forward to my upcoming trip.

Long before I was a neurologist or PD patient, I was already an activist of human rights and patient’s advocate. I am just glad that I now get to have a stronger voice and hopefully greater influence than in my youth as to the well- being of those with chronic neurological diseases particularly Parkinson’s disease.

We all have a long list of issues we would like to see addressed and changed in order to better the quality of life of those living with and caring for people with PD.

One of my biggest frustrations and dissapointments in caring and treating patients with PD is the lack of access to neurologists followed by restrictions/ limitations in access to medications neeeded. This last point, in my opinion, is the cause why so many with PD do so poorly. There are many states in the U.S. devoid of neurologists much less movement disorder specialists. One of the things, I would like congress to address is the expansion of teleneurology along with passing a law which allows patients to receive the treatment deemed necessary by their treating physicians not a third party who knows nothing of medicine!

Since 1999, Telemedicine has been used for evaluating and diagnosing acute strokes with moderate success across the country; yet despite its many benefits it is still NOT universally used.  (which by the way as an intern at UT -Houston working in the stroke unit I was involved with the inception of this technological way of evaluating remote stroke patients as well as in the stroke scale development). Of course teleradiology (extremely familiar with thanks to my husband’s profession)  has been in practice for years with great success but still with limitations due to credentialing issues across state lines.

However, in regards to this much debated subject the tide maybe beginning to turn as some who have been on the fence regarding this issue  are slowly conceiding its potential benefits. although much work still remains to be done regarding the rules of credentialing, liscencing, liability, and above all reimbursement which is fair to physicians. Nevertheless, 29 states have already passed laws requiering private insurances to pay for telemedicine delivered services same as they would for in patient care.

But, since the majority of neurological patients especially those with chronic disabilities /illnesses are primarily Medicare recipients, the federal government remains the biggest barrier to its implementation. The government has always had back wards thinking when it comes to the rules of medicine …they pay for nursing homes but won’t pay to prevent patients from getting services, treatments and medications to avoid worsening of symptoms or becoming recluse while becoming a burden of  the state and family. they refuse vital ancillary services like PT, OT, ST but instead they are willing to pay thousands more for a hip replacement which many times in the case of PD patients signifies the beginning of the end. yet, they won’t pay for the medications needed to keep these same people from freezing which cause the falls to begin with or the therapy to keep mobile. Rather than valuing the individual care of those suffering with chronic neurodegenerative disease like Parkinson’s to improve their quality of life, and increase  or continue to benefit from their contribution to society  thus diminishing the burden on society and families; currently, Medicare pays nothing for having a physician care for them remotely via telemedicine but rewards those that visit hospital/ university based clinics as well as costly hospitalizations.This type of care serves only to polorize and increase the disparity between urban and rural as well as solvent and financially needy individuals. It’s no wonder we have few or no specialists in rural communities where the majority of patients reside when the physicians time is not deemed as valuable as one practicing in urban setting.

What about thinking about our patients first ? We could unburden some of our caregivers by reducing their drive time and frequent visits to specialists for instance. What about unburdening the care partners by making patients self sufficient and independent because they are on the correct doses of the appropriate medicines not the one the insurance or government thinks we should take because it is cheaper.

An example, I like many of you am a walking pharmacy. As all of you who live with a chronic illness know that a single change can throw a wrench in the whole well oiled machine causing the whole system to come to a complete hault. This is because not only are we experiencing all the systemic effects of our illness but also deal with the myriad of drug to drug interactions thus finding a balance the more meds we take is a true art. Now when everything is fine tuned, you can breath and go about your life without having to give too much thought to the ever present PD. But what happens when every time you go to the pharmacy to get a refill you have to fight to get your meds? not only is this  extremely stressful but worse if suddenly “the insurance” or “Medicare” decide that it’s too expensive and you don’t need this medication but rather something ‘similar’ because its cheaper. They are essentially saying we don’t care about you as an individual, your illness, nor do we care if you fall, get psychotic, or end up dyskenetic or hospitalized all of which will cost insurance 10x more; never mind the emotional and financial anguish incurred by patient and family of patient as long as they same a buck on the front end. either take what they give you and suffer above consequences or like me many times end up paying a heavy price to keep my health in check and out of hospital. there has got to be a better way.

What I am hoping is that some day people with chronic neurological illnesses like Parkinson’s can have better access to providers and the medications they need. Only then can there really be a true improvement and advance in the care of people with PD. What I am also hoping is that someday I can work side by side other great public policy makers like my friend Ted Thompson (Senior Vice-President of Public Policy for MJfox Foundation) as a Public Policy maker myself doing Public Health fellowship through Neurology once my daughter has left home.

So although sometimes our roads take many unforeseen detours, in the end its the passion within our souls which fuel our destinies allowing us to arrive at the exact destination at just the right time  for the greater good of others. I guess despite PD, I remain a dreamer…after all it is the dreamers who posses the exorbitant imagination that underlies the power to change the world. I like Mr. Smith Goes to Washington intend to prove that one voice can make a difference. Now imagine what we can accomplish together!

Keep you guys posted on my travels and interactions at the hill. for those going see you there and for those not able to, I hope you feel you and your needs will be well represented. 

 

Dopamine Makes the World go Round!: By Maria De Leon

 

 

As we are getting ready to celebrate another Valentine’s day here in America and in other parts of the world, I began to think about this subject of love more intently.

When I was young, I loved watching and reading romance movies and novels. since I am an avid reader and consider myself a movie buff I have a special place for all Nicholas Sparks books especially ‘The Notebook’  and the ‘Best of Me’ as some of you  might also. Ironically, I was reading ‘The Choice’ when I was first diagnosed with Parkinson’s and was having to do a lot of soul searching myself to find out what was best for my life.

However, nothing compares to the old classics like Pride and Prejudice  and Wuthering Heights. I dreamt of finding my own Darcy or Heath Cliff. But, interestingly at the same time as my symptoms of Parkinson’s began to surface I began to drift away from romance and switch my attention to mysteries and crime solving stories which had a much more satisfying ending than riding into the sunset-living happily ever after. I assume this was just a matter of growing older, becoming more centered on reality than fantasy and maturing as a woman.

So, I stopped reading romance novels and began a love affair with a crime solving duo-written by famous author Tess Gerritsen, a medical colleague whom I had the pleasure of meeting in person several years ago at Cape Cod when I first decided to begin my own writing career. But, my once avid interest in literature and ability to devour books in one sitting began to slowly wane without me knowing until my daughter pointed it out. This was the time I realized I needed higher doses of dopamine in my system. Lo and behold, once I began taking Rytary, my passion for  reading returned with a vengeance. I began again reading 2-3 books a week.  But, still not much interest in movies or books with romantic themes.

Yet, as the years with PD grow in number so have my needs and doses of dopamine gradually increased in order to feel like myself mentally once more. Suddenly, with the latest increases in medications has come about a new sense of passion for life  including my love of romance books and movies, making me think that perhaps it was not all about getting older causing changes in my likes and dislikes of things; but rather waning levels of a little chemical known as dopamine.

We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT!

I once again, feel like that love stricken young woman of days of old unable to sleep, eat, but with a profound clarity of mind I thought gone forever from me. I even helped my daughter with algebraic equations the other night and it felt absolutely awesome.  although, dopamine is the final ingredient to our well being, it is love the greatest catalyst responsible for the release of this powerful endogenous substance.  Although, it is absolutely clear that my dopamine levels have increased medically over the last decade, the biggest change in my well being has been in the increase endogenous dopamine. Learning to love myself (yourself) has been the greatest love second only to letting God’s love define me.

We have all heard the old saying : “Love makes the world go round.” But, perhaps it’s the copious release of dopamine and its effects on our love stricken- brains that is the real culprit and mastermind no matter where it comes from- be it a pill, a piece of scrumptious dark chocolate, the voice of a loved, or being in the presence of God.

This Valentine’s Day let your endogenous dopamine have free run by spending some quality time with someone you love.

HAPPY VALENTINE’s DAY everyone…Image result for images of heart shaped balloons

 

Chaotic House in the Prairie: By Maria De Leon

There is no great loss without some small gain.” Laura Ingalls Wilder

Ok so it’s not exactly the prairie but I do like to think of it in the middle of nowhere. I am after all surround d by large pine trees and the wild fauna seems to enjoy the flora around my house attracting many a doe to give birth on my front lawn. Although, I have grown to love my community and appreciate its charms can’t take the city of this city girl. What then does an out of work night owl who has chronic insomnia thanks to PD do for entertainment in the middle of the night? Well there is always Walmart… but not really my thing so besides reading, watching a zillion movies, and preparing for my new women’s class, or working on two books (which I am attempting to finish and publish this year),there is something more practical. One exercise by dancing which unfortunately only contributes to the insomnia not recommended. But, as many of you who live with PD and other chronic diseases will attest that mornings are just extremely disorganized, slow, and rough for all in the family. You wake up stiff and staggering then you take your medications and either don’t work as always because of severe constipation or bad side effects like nausea, migraine, dizziness so you lounge around for a few minutes but before you know it it’s noon and your husband is home starving and the meal you have been planning for three days ….

“I guess you are not cooking! Should I just put away that chicken and make dinner tonight?

I sigh, as he walks away to make himself a sandwich.

Finally, around 3:30 p.m., I begin to feel like myself having wasted half the day away I drag myself to shower and wash away the “illness” if only it was possible. He returns having gone walking around the stadium which I could not join today due to being dizzy and nauseous, and with my daughter; but instead of letting me cook dinner he jumps in and takes over so I begrudgingly oblige.  (He will be back to work in a couple of days and I will have no recourse but to manage best I can).

Soon it will be time for him to retire to the bedroom and I will have complete run of the house.

Fortunately, this is the time I can spend with my daughter who happens to be a teenager and is also a night owl. I help with homework, Spanish particularly, and we laugh because my brain is still slow and gets tripped easily at times then as always a customary snack before bedtime.

Its midnight now, finally house quiet and I can think clearly.  I am full of energy and feeling great. I decide to make the mole I have been trying to prepare for the last 3 days so when I don’t feel well tomorrow food will actually be ready and on time for my husband to eat at noon. But, I am so weak, shaky and dystonic I am having trouble opening the jar of mole. I laugh out loud at the new label on the lid which reads “new and improved easier to open lid” but nothing has really changed looks exactly the same it has looked for half a century (and I chuckle a my fellow countrymen then I get a bit sad when I think what if I can buy this product anymore with new changes in government?) I don’t want to think about it anymore tonight…

I am making one of my favorite dishes. If only I could find a way to open the darn jar. As I search every cabinet and beat and pound on the jar I hoping it won’t shatter since made of glass, I feel like the cat in the cartoon where he is left alone with cabinets full of tuna cans but no can opener!

Should I call mom at this hour and ask for advice? She too is a night owl. I do. Of course she is awake. We talk for a while then she asks what I am up to and laughs wholeheartedly at my situation but gives me a solution. At last I can finish preparing my mole! I am tempted to eat some when done an hour 1/2 later, but I restrain myself. I need to go to bed it’s close to 2 a.m. Maybe a glass of wine will do the trick while I wait for food to cool enough to refrigerate. Surprise, surprise, I can’t open wine bottle either.

C’est la vie!  Although, I am not really sleepy I drag myself to bed “for tomorrow is another day” or maybe later today and wait for sleep to come and resume the chaos which is my life with PD.

 

 

 

Musings of a Parkinson’s Night Owl: By Maria De Leon

“Every Renaissance comes to the world with a cry, the cry of the human spirit to be free…” Anne Sullivan Macy

 

The other day as I stayed up half the night like most of us with PD tend to do, I was too tired to read, or write and too restless to lie quietly in the dark. I decided to make my way to the Living room and surf the T.V. channels. After a few minutes, I stopped as I recognized an old movie which I had not seen since medical school “Lorenzo’s oil.” A movie starring Susan Sarandon (for which she won an Oscar) and nick molten about a child who develops a neurological illness known as adrenoluekodyatrophy. This Terrible condition occurs only in boys because is x-linked causing behavioral problems, blindness, deafness and eventually death. As I began to watch a wave of emotions took over me realizing how long it had been since I first saw this movie trying to remember my first impressions and how different they probably were from now having had the opportunity to treat many similar patients. Recalling my last little boy whom I diagnosed and the sadness and hopelessness i felt as I saw him drift into darkness and eventually succumb to death. Remembering the pain, anguish, and despair her mom felt upon confirming the diagnosis, never once remembering that movie.

Now as a seasoned neurologists, mother, and patient I found myself being completely enraged at that mother’s behavior. Wondering what I would have counseled if I were the attending physician on that particular case and weighing my options as a mom and patient. Surprisingly my decisions would have all led to the same path – let the boy die with dignity since he suffered for at least 3 years as he descended deeper into a coma only to slowly come out after years of seizures and suffering regaining some hearing and vision but remaining quadriplegic and bed bound for life. I wonder what he would have said about his life. The lack of choice in the matter. In the end, I wonder if he would have said it was a meaningful life. of course the fact that he survived such ordeal when he was aspirating and suffering asphyxiation continuously for years speaks volumes to the strength and power of the human spirit and to the  fact that life is not in our hands but that of our God.

The parents life revolved around the illness of their son from the moment of his diagnosis- the first rule of living with a chronically ill patient is not to make the disease the center of life. This is giving power and admitting it is stronger than us.  How often we as caregivers make life decisions based on denial or guilt? Sometimes we have to learn to let go and not stop living ourselves. We as caregivers are just as important as the patient. This does not mean we abandon our responsibilities or wash our hands of it rather we must find a way to maintain our own health, goals, dreams in spite of another’s need for our complete attention. We don’t refuse help from others or alienate ourselves from the world as this mom did. Important not to neglect relationships like marriage. Other children, siblings and friends as this couple did.

I am afraid too often we think we are invincible or too proud to let others lend a hand.

Plus, in dealing with any chronic illness we have to avail ourselves of an entire medical team especially if we want to change the science. As I have written before respect is essential for a good patient- physician relationship. Both parties are equally important to advancing knowledge and science of any disease. Anytime one party thinks they can work alone will only truncate progress. This is what unfortunately happened. Although the parents discovery of “Lorenzo’s Oil” was a major breakthrough because it did not go through proper channels of being tested within the confines of medical science, the treatment has mostly fallen into oblivion and rarely discussed in any medical settings due to the controversy and animosity it created among parents of patients with similar disease that were desperate for cure as we are now with PD an the neurological community who was painted as insensitive and uncaring to the needs of their patients.

Remember the saying never bite the hand that feeds you…doctors and neuroscientist have the scientific knowledge and experience of a thousand patients we only have one – ourselves or our loved ones. However, by working together we can fill in the gaps. So let’s not hastily take non- recommended treatments without discussing with our physician’s because if truly beneficial if done outside the confines of scientific methodology few people will reap the benefit as has been the case of the treatment with this oil which according to small studies if used early on in this disease can halt its progression.

This year let’s make waves by working together for a cure!

 

New Year Resolutions! By Maria De Leon

First, let me take a moment to wish everyone a very happy and prosperous new year! I am sure that many of you as is customary made a list of New Year’s Resolutions which you wholeheartedly intended to keep. But, by now many of you like me find the resolve to keep those well –intended plans slowly begin to dwindle away as the month unfolds. Perhaps, some of you, like me, feel no need to go through the charade of making any determinations.

However, this year I would like to challenge you to develop a more proactive attitude towards achieving our goals in an effort to live a happier and fuller life no matter where we find ourselves.

Think of these as a new adventure which is going to enhance your life not cause stress or mental anguish.

Here are some examples of common resolutions people make:

I want to eat healthy and lose weight. We join exercise classes and begin to avoid all the stuff which has sugar, butter, and tastes good and replace with more incipient foods. Well, no wonder we abandon this in an instant when someone offers us a piece of moist chocolate cake, as my grandmother used to make every year around this time for my grandfather’s birthday.

Instead, let’s look at food not as our enemy but a way to connect to people, explore tastes, and discover new things. Is not what we eat but rather the quantity, I always say. Everything in moderation. Don’t eat half the cake, just a sliver or small slice. Trust me your taste buds will thank you, and don’t leave the butter out when cooking. Your brain needs fats in order to thrive. A recent, study published in magazine Neurology Today stated that people with a bit more meat in their bones later in life could potentially benefit more by protecting their brain’s against dementia. That does not mean you eat the whole tub of butter and let your diabetes get out of control but does not mean you don’t have to deprive yourself from rich foods. Eating fatty fish high in omega 3- fatty acids like salmon, sardines, and trout can be beneficial to the brain and help with memory. One of my favorite dishes and easy to prepare is salmon with mint in the oven served over rice. 

I want to stay fit or get in shape. It’s a lot easier to exercise routinely when you have a friend to do it with or better yet get a pet like a dog which you have to walk and you will exercise without trying to. Pets are not for you? How about ballroom dancing? I bet you will be the life of the party if you display some of your moves. Exercise also has been proven to prevent or at least truncate development of dementia with as little as 30 minutes a day of walking three times a week especially in women. The best way to maintain an exercise routine is finding something you love.

Another common resolution, I want to travel. Well, sometimes our health and/or our financial circumstances are not what we like making this dream a bit hard to achieve leaving us disheartened. Well, now you can have some of the advantages of traveling without leaving home. Invest in some virtual reality glasses (you can buy some at amazon for under $20) and feel like your there. Better yet, invite friends over and cook some foods indigenous to those areas that you like to visit. Better yet, if out are like me and don’t like to cook much then find a place to cater or do put luck and while you dine listen to the music of the region and even learn a few phrases. There are several little packages called “Music and Cuisine for Dinner with a Theme” which I have enjoyed using. These inexpensive treats which can be purchased on line or at Hallmark stores come with a authentic music cd of the region like Italy (several countries to choose from). They come with tips for throwing, in this case Italian – inspired soiree along with 20 plus recipes from appetizers to desserts for a whole meal experience which are easy to prepare. The experience will be just as memorable, I guarantee. Plus, you will also be learning something new another common resolution.

Self-improvement also makes top of list for New Year’s resolutions easily broken. If you concentrate on helping others and being kind to others, you will grow infinitely as a human being.

These basic changes in attitude and perspective are sure to be a hit with anyone who dares to be bold. Don’t forget to always smile and be thankful for the little things.

 

Women’s Health & Sexuality: By Maria De Leon

“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)