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

 

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)

 

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

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.

 

 

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

“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-

 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.