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.

Parkinson’s & My Love for Fashion: By Maria De Leon

” Style is a way to say who you are without having to speak.” ~ Carolina Herrera

Image-“Red Shoes” by Ross Webb

 

As you all know I am a fashionista at heart and having PD initially put a damper on my love of shoes and actually diminished my collection because the initial foot dystonia and pain caused me so much discomfort that it was hard to work. In my profession as a neurologist, I had to stand and walk a lot. The burning, searing pain along with involuntary toe movements made it extremely difficult to wear some of my favorite shoes. Erroneously thinking it was the shoes I was wearing the culprits of my pain, I got rid of many pairs including some very cute and stylish red shoes which I absolutely loved. In my practice I was known as much for my shoes as I was for my hugs so having to change was a huge deal. Due to my severe discomfort, I was then forced to wear tennis shoes for the first time in my life which I absolutely abhorred but unfortunately it was the only thing I could stand on my feet.meshoes

Of course after my disease was confirmed, in the process of stabilizing my doses, it was difficult to walk with my stilettos and even chunky heels if they were higher than an inch. Because of initial poor balance and mild stooped posture wearing heels only served to shift my center of gravity forward causing severe back pain along with increased unbalance. However, even though there was a time of a year span in which I had to use a walker and barely able to lift my feet I never lost sight of being able to wear beautiful shoes again. Although, I did have to accommodate and find a new way of meshing the styles I love with the practicality and comfort required for someone who has PD. Fortunately, there are so many choices to choose from compared to even 20 years ago.

PD has not stopped me from loving shoes and looking for stylish comfortable pairs that would work with PD rather it has become another challenge to thrive on. I have discovered that I am unable to wear high shaft boots without zippers – hard to put on and nearly impossible to take off. Never mind the off balance waddling that sometimes would occur if begin to shuffle while wearing them.

Thankfully, as I have improved with medication and therapy, I am so happy to put away my tennis shoes which I hope not to see again for a long time. So in the last couple of years, I have been once more augmenting my shoe collection. I find that sometimes, the best therapy for self-esteem and empowering of a woman particularly one dealing with chronic illness like those of us with PD is retail therapy especially shopping for beautiful shoes. This was certainly the case for me this past month. After being hospitalized and being poked and prodded over the last two months, I needed some new shoes to parade about as I slowly regained my composure and returned to my normal Parkinson’s diva self. Although, it began as a simple trip to the mall with no expectations, other than just get out of the house and spend time with mom it ended up being one of the most rewarding and fulfilling shopping spree I have had in a very long time. Particularly when we found this one shoe store that had so many new styles and colors for the fall season mom which happened to be 1/2 off. I love nothing more than buying beautiful shoes at an affordable rate. So I bought grey booties & stylish suede loafers, blue high heel espadrilles, red pumps, my very first pair of brown leather boots in a very long time (since brown is usually not my color), and an evening shoe which happened to be leopard print… no one can be without a high heel animal print to put some fun and mischievousness in a woman’s wardrobe.za

The outing was an exhilarating one which prepared me mentally to continue my PD fight to show PD go is boss. With my new fall collection at my disposal, I am poised once more to continue my work with women in PD alongside health professionals, law- makers and women with PD everywhere. Today, as I finished discussing my impressive shoe collection and latest spree with my sister-in-law, I came across an article I had missed about another young professional with PD who seems to love fashion and shoes as much as I do. She too appears to have amassed an impressive shoe collection as I. But, I must say that at least in her pictures her shoes are better displayed than mine which sometimes end up on the floor because I am too stiff to bend over to pick up. I, like her, am using my love for fashion to increase strides in the neuroscience of PD while empowering other women (you) with PD to do the same. Go ahead use your own fashion sense and favorite shoes to show PD, you still have the upper hand. As the moto for this blog site goes… ” a woman can conquer the world with the right shoes!”

Tips for wearing stylish but safe shoes  with PD :

Be accessory conscientious – don’t buy shoes with lots of traction if freezing nor slippery ones if tendency to fall

Don’t get frazzled and tied down – if you have tremors that are hard to control don’t want shoes with lots of stamps or dainty clasps which are nearly impossible to tie. Wear ones with big zippers on the side or one with big buckles better yet slip on if having trouble bending

Always keep a spare as I often do when I travel I wear lower heel more comfortable shoes that I can change easily when I arrive to my conferences and a more stylish chunkier heel or dressier shoe is called for.

Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

 ” A vacation is what you take when you can no longer take what you’ve been taking.”

~ Earl Wilson

 

As we celebrate Columbus Day weekend, I am reminded of another holiday we don’t uphold much nowadays– levodopa drug holiday! Since we were first diagnosed with PD and introduced to levodopa, all of us who live with this disease have come to realize the wonderful effect one little pill can exert over our minds and bodies making us forever be holding to it. Yet, as an addict that tries to recapture the first sensation or effect of a drug, we too continue to take our Parkinson’s drugs daily in hopes of making us feel like ourselves once more. But, as with anything that alters the chemistry of our brains, levodopa effects also wean over time requiring a larger dose to have similar effects on our bodies and minds. This in turn leads to greater potential of abnormal or unwanted side effects the higher dosages or length of time we take these treatments like dyskenesias. Even when you stop taking these medications, you can never go back to a de novo state – your dopaminergic and entire brain network is forever altered.

For me nearly 10 years of taking medications for my PD has meant recent development of serious side effects like arrhythmias and malignant hypertension as well as chest pains. These terrible side effects prompted me to start thinking more and more about ‘Drug holidays.’ As I have tried to regain control of my PD symptoms and my quality of life, by bringing a balance of drug efficacy and minimizing drug induced nasty effects, I began thinking about the many PD patients I have treated over the years. Several of my patients I was able to management effectively only by giving them a much needed ‘drug holiday.’ Of course a lot of this occurred before we had so many new drugs to choose from and DBS (deep brain stimulation) was not as widely used accepted or approved as of yet in our armamentarium against Parkinson’s disease. The purpose of these so called holidays was to restore balance and well -being for those having dyskenesias, motor fluctuations and other unwanted difficult to manage or live with side effects. The idea is not unlike that of Huxley’s Brave New World where people (in this dystopian society) took “soma holidays” to induce a state of total relaxation. In our case these much needed holidays were designed to improve or restore quality of life by decreasing drug dose and subsequently reduce side effects.

I am not really certain when we stopped offering drug holidays from levodopa as a another tool but it seems long gone are those days we neurologists / MDS used to employ this now unorthodox practice in the treatment of our advanced PD patients.

Why did it ever stop? Perhaps, because we felt that we could manage patients symptoms successfully with new drug treatments as well as prevent some of the unwanted problems altogether with the advent new, better, and more specific drug treatments. For the most part this has been the case since as a whole we are now able to delay dyskenesias by addition of longer acting, continuous delivery of drugs; yet there are some people like me that eventually will build tolerance to these PD drugs or somehow develop antibodies to treatment drugs as in other neurological disease states like Multiple Sclerosis – (or even be part of a small group of individuals who naturally possess antibodies to particular drugs such is the case with a small subset of people known to have antibodies to the class of medication known as beta blockers). Although no one has ever looked at this phenomena in PD patients to date, there are now new quick techniques emerging which can tell us with certainty what medicines we can and cannot tolerate. Perhaps we should start using and taking advantage of this new technology to aid our patients in being able to achieve a higher quality of life particularly in patients like us with chronic illnesses such as PD. All it requires is swabbing of the cheek and voilà. As I await for my own, I decided to undergo a levodopa holiday myself.

Although several studies have confirmed the benefit and was widely practiced during my training, some still believe the practice to be risky and controversial particularly for those in late or end stages of PD where this technique was believed to be best suited. This type of procedure always required close supervision by a physician and very often required hospitalization. We used to withdraw patients slowly of their meds and placed them on amantadine. Similarly, I undertook the same route of withdrawing myself of all my Parkinson’s medications while staying only on amantadine. I would not suggest anyone doing this on their own without first discussing in full with your MDS/ treating physician. If your physician agrees, he or she will most likely insist in a hospitalization or very close supervision. I discussed with my physician and was in the vicinity of the medical center everyday should there be any problems. The reason for the close monitoring is due a potential complete paralysis which can occur from a rapid sudden withdrawal (the common way of doing in the hospital setting). Of concern when doing this is paralysis particularly that of respiratory and swallowing muscles. I was at lower risk of developing profound paralysis because my disease is not end stage nor am I having motor fluctuations or dyskenesias and I was not taking a very high dose of levodopa. Furthermore, rapid withdrawal of levodopa can cause severe autonomic dysfunction and a syndrome known as neuroleptic malignant syndrome and/or ocular gyric crisis where eyes deviate involuntarily.

In cases of drug holidays, a gradual reintroduction is usually more successful minimizing potential for side effects than reintroducing drugs at previous dosages and schedules. Usually patients confirmed in a small study of 16 patients can go back to taking half doses which in turn result in fewer unwanted side effects.

Based on my knowledge and experience, I stopped all my meds except amantadine – felt wonderful for two ½ days especially intriguing were the fact that my arrhythmias, chest pain and extremely high blood pressure normalized immediately. After this, I slowly began having increased stiffness, slowness, restless legs, and hypophonia. As the week went by the severe stiffness of my axial muscles triggered an excruciating back pain leading to severe radiculopathy and difficulty walking due to pain and radiculopathy not to mention return of increased frequency and urgency which was not fun especially since I could barely ambulate. I then developed some mild swallowing difficulty. It was clear I needed to reintroduce my medications before I worsened. I resumed intake of my Neupro patch at previous dose which decreased my bladder symptoms and aided in my slowness and stiffness but brought on once again some irregular heartbeats. Thus, I opted to decreased dose to half which stopped abnormal heart beats but once again worsened my pain and stiffness. Thus, slowly I reintroduced levodopa but at a lower dose than previous which stopped the back pain and stiffness. However without the aid of the Neupro patch and Azilect the wearing off of levodopa was much more pronounced. Subsequently, I restarted Azilect which invariably led to an increased my blood pressure once more and irregular heartbeat. In the end I have decreased my levodopa only as well as taking alternating smaller doses of both Neupro and Azilect. I am doing great except I have to be more mindful of my dosing schedule otherwise I feel the wearing off much more pronounced- still tweaking.

Good thing is that I was able to cut down not only my PD meds but also I have been able to cut down on my blood pressure medication. On the down side, reintroduction of medications has returned side effects I no longer had such as my nausea returned even with intake of Zofran and having wild crazy dreams due to medication effect. I trust I will develop tolerance once more and these will disappear.

So this holiday weekend I am once again enjoying myself with my family thanks to having had a nice drug holiday….

When all else fails take a ‘drug’ holiday and start a new with a new lease on life and better PD control.

I like to see this practice return as an option …how about you?

Sources:

https://www.researchgate.net/publication/16005903_Drug_holiday_and_management_of_Parkinson_disease

https://www.ncbi.nlm.nih.gov/pubmed/3793959

https://www.ncbi.nlm.nih.gov/pubmed/17370308

http://onlinelibrary.wiley.com/doi/10.1002/j.1552-4604.1986.tb02969.x/abstract

https://www.ncbi.nlm.nih.gov/pubmed/3793959

A week in the life of a Parkinson’s diva- by Maria De Leon

“It is a beautiful thing when a career and a passion come together.” ~unknown

It is always nice when things work out serendipitously. What can be better than combining one’s own passions?  I tell you there is a great joy when your passions and interest and mesh together as it did this past week for me.

I was forced to be on a strict diet for the last 3 weeks in preparation for this past weeks poking and prodding in order to rule out any underlying recurrent cancer. Not being able to eat seafood, nuts, pasta, bread, or  dairy products was a challenge. Particularly when my to go snack is a handful of nuts. Plus, having teenagers around who are constantly foraging and gravitate top these same food groups did not make it any easier. I must admit it was hard and had to sneak in a couple of bites here and there of bread. Mom making fresh flour tortillas for breakfast did not help in the least.

So of course when my tests were done despite having severe nausea and feeling weak, I headed straight to an Italian restaurant to indulge in some lentil soup, and chicken sandwich loaded with mozzarella cheese, only after taking Zofran.

I was so extremely overjoyed to enjoy food once again that although the nausea seemed to have returned after eating, I could not pass the opportunity of visiting one of my favorite clothing stores-TALBOTS- love their red doors! Especially since there is none close to home. Plus,  I was sad I would have to miss yet again another great customer “party.” To my surprise, they were in the midst of hosting a fashion show. Of course this delighted me completely and quickly found a spot to sit. Initially, the nausea, heat and hot flashes from the small radiation doses I had received were extremely distracting. But as my husband always says “where there is a ‘Bebe’ (one of my many nicknames) there is a way.”  Surely I was not going to miss this fashion show and special prices event which I had stumbled into fortuitously just because I had some side effects to the treatment and was stiffer than usual.  So for a while I simply sat there quietly enjoying the ambience wishing I could feel better so I would not be sick in the middle of the floor. I stood once again and made my way to the table of delectable goodies to grab some cold water to take more pills when one of the attendants asked me how I was liking show. Trying to be polite and making small conversation so I could return to my seat, I asked how the models were chosen? she then proceeded to ask me if I would be interested in modeling for them at their next event.

Seems like suddenly I was experiencing another ‘Kamehameha’ moment all over. When we were in Hawaii over spring break while doing our usual touring, I began to experience severe discomfort which escalated to more intense pain in my back as we were walking. but suddenly upon reaching the site where King Kamehameha statue is located in Honolulu  because it is the headquarters for the T.V. show Hawaii- five- o, I became so enthralled that my pain and all discomfort dissipated completely- forever known in my family as the ‘Kamehameha effect.

Image result for king kamehameha statue in honoluluT

Having regained some energy, when the national sales manager Pam approached me about what I liked about their products and fall line, I seized the opportunity to discuss possible partnership to do Parkinson’s awareness just like they do breast cancer awareness. After discussing my role in advocacy, my platform on women’s issues in PD and explaining my love for fashion and need for women with PD to feel empowered over their disease, she was completely on board. although, they could not endorse PD as they do breast cancer awareness, she was willing to take back to headquarters and in meantime offered to partner in the winter for a charitable event with their red winter wardrobe line which could involve several stores in the Houston area. Although, nothing is set in stone as of yet, the possibility of this is taking place is terribly exciting, more importantly the seed was planted. Like all fruit trees  even though they must be watered and cared for, a fertile soil is essential for it to take root and grow. Lets hope this new idea takes and leads to greater awareness in women (gender) issues within the Parkinson’s community.

Furthermore, I was ecstatic about the possibility that I mentioned it to a good friend of mine who happens to be a drug rep for Azilect and she took was excited by this that she said she would talk to her superiors.

After spending a week in my old stomping ground (Houston Medical Center ) and seeing patient after patient with PD many of whom were young women- the time to take action is now and what better way to bring women of diverse backgrounds together and inform on PD then through a fashion show. After all, as one of the world’s best fashion designers who happens to be a Hispanic woman like myself  – Carolina Herrera, once quipped : “the impossible does not truly exist for (a PD) woman only time to achieve it.”

Together we are strong

Together we can #end PD

Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.

Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.

If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.

Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.

Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.

We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curveball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed somedays.

What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?

If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.

  • In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
  • One is that they have control over their lives
  • Two that the world around them is a relatively safe place.

If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.

There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.

  1. -responsibility
  2. -respect

First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).

Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.

Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.

I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.

In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?

Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).

Happy trailing and pass it on for better long term patient- doctor relations everywhere.

 

Finding Inspiration All Around Us: by Maria De Leon

With the new day comes new strength and new thoughts.” Eleanor Roosevelt  

 We are all planned, planted and pruned for a purpose by God.

The last month, as all of you who have been following my blogs have discovered,  I had a small set back which has led to some decompensation due to having PD as a chronic underlying illness. This is not entirely uncommon especially for those of us who are as complex as I am. But, as  bad as I have felt most of you know that I am not one to give up or just sit around ….although I must admit I have been sleeping a lot more than usual. Nevertheless, I am determined to get back to my base line and able to continue traveling and speaking so besides having a ton of doctors appointments which have required someone else to drive me in one or two occasions, I have resumed water therapy.

We have a new instructor who is simply wonderful and understands well the complexity of the body especially for those of us who have neurological illnesses like Parkinson’s disease and incorporates techniques of tai-chi, yoga, and cardio all in water settings. while doing these exercises I have discovered two things. one, that I am weaker than I thought ant two that even though I feel great while doing these exercises afterwards I feel completely wasted due to severe nausea and vertigo it triggers. However, within this same setting I have encountered several of my patients who I was not only delighted to see but also glad to see they were engaging in therapy.

One particular patient has completely inspired me to continue despite the ill effects it has produced. because I know this too shall pass as I always say but recently I heard someone say that it would pass like a kidney stone. That is exactly how I feel, slow and at times down right excruciating. Yet, my discomfort no matter how painful is nothing comparable to what some of you have endured and what some of my patients have suffered. particularly, this courageous lady who has a most severe neurological disease which has now left her nearly paraplegic with severe upper extremity tremors. But having this illness has not stopped her one bit. You will see her around town frequently in her motorized wheelchair doing for herself and others. Similarly, she is there in the pool without fail trying her best to follow the instructor. Last session she nearly drowned a couple of times. somehow I doubt that this minor things in her mind will keep her from coming back. Knowing that she has endured  for a lot longer than I have and continuous to fight daily has given me the courage to persevere and deeply admire her inner fortitude. so, when Wednesday comes I will take some Zofran prior to my exercise therapy and I will be there working at getting myself well once again and encouraging her to continue while keeping a closer eye on her so no more incidents of near drowning occur like having life guards near by and having her wear a life vest.

So you see, all you have to do is look around and you are apt to find some inspiration in your life . No matter how bad we think we might be or have it there is always a reason to go on fighting. it may take a bit longer but I know I will be among you chatting and visiting once more very soon; because in the end we are always worth MORE than we feel and there are no strongholds greater than God.

Image By Andre Kohn