Parkinson’s disease and The Work Place: By Dr. De Leon

lucile ball

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of.  Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by  one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF  link below to find financial and legal advice/support.

 

Sources:

http://www.pdf.org/en/science_news/release/pr_1415296989

http://www.pdf.org/fin_legal_work

http://www.pdf.org/en/fall05_employment

When to disclose illness at work

http://www.ncbi.nlm.nih.gov/pubmed/16941456

 

 

 

Parkinson’s Disease: Impact on Family-by Dr. De Leon

“Friends LOVE through all kinds of weather, and families stick TOGETHER in all kinds of trouble.” ~Proverbs 17:17

A Midst increasing focus on women’s issues in PD, I and others are beginning to realize the burden of living with and having a chronic illness like Parkinson’s can exact on the family nucleus. Sometimes the burden can extend to close friends, co-workers, and others in the circle around the nucleus.

How then, do we decrease the burden?

The first order of business for me as a neurologist and Parkinson’s patient is advocacy. Education is the single most important factor to decrease the load of the family and of society by raising awareness of the issues which require a not just a holistic approach; but a timely one as well.

First, we must understand the symptoms of the disease (sometimes the rest tremors may not be present from the get go; yet if there is family history of PD, or history of tremors in you, or have any number of symptoms including but not limited to constipation, loss of smell, depression, bladder issues, gait difficulty, stiffness seek advice of a physician asap)  in order to get an get early diagnosis followed by early treatment. This latter part cannot be underscored enough in my opinion. EARLY treatment DOES improve quality of life in the present as well as in the future!!!

Second, once diagnosis is establish and medication initiated it is important to evaluate patient in his or her natural surroundings. this means evaluating their role in the family as well as in society. understanding the impact of chronic illness in every individual is crucial to developing the right treatment plan. for instance, the plan is going to be entirely different if we are dealing with a young mom versus an older woman. also different from one that is employed especially if main provider versus someone that is retired. Single vs part of large family with good support system. Therefore, it is our duty as physicians to recognize the wide and variable effects of having PD to help you the patient build tools to best manage your situation and help you and your family cope with the illness.

Third, one way I recommend that you help your neurologists make the most informed decisions on your behalf is to have an open line of communication. after all, communication is a two-way street. Your physicians unless they have an illness themselves as I do or have had to deal with someone chronically ill in their family, they might not know the ins and outs. this does not mean they don’t care but rather lack of experience in the matter. Therefore, I suggest that at least once a year if not twice you make an appointment with your physician to discuss social needs only. This will go a long way in building a rapport with your doctor as well as getting the right treatment plan for a more fruitful life. understanding your social situation along with any co-morbidities like having migraines, high blood pressure, pre-existing depression are the pillars to a comprehensive approach to PD patient care.

The goal is to be present in your life living it fully. Sometimes we think we are coasting along just fine handling our own problems but we may not realize the impact on our family and our friends, etc. I am sure you have seen the commercial for asthma in which the woman says I rarely need inhaler rescue and they show her whizzing and being short of breath most of time. Same for us. I know that for me this true. 

How many times in the past month alone have you been unable to keep your plans expected because you were not feeling “right?” There was a time I became the most unreliable person because I cancelled more functions then I attended. How many times have you missed family functions or activities or cancelled the vacation you have been waiting on for months because you could not travel?

If this strikes a cord with you then it has been happening way to much. you need to sit with your family and alone and write down the reasons then take to your physician to work together on a solution. Is it because your depressed, in pain, fatigued,  embarrassed of being seen in public? Most issues have a solution, don’t wait.  if you live alone and cant afford to go out talk to your doctor about meals on wheels, help in the house, a nurses aid and so on.

it is always best to write down wishes early on which can always be amended than to have no plan and wait for crisis to arise and no one knows what to do and you are to sick to make any life decisions.

Remember, the better you and your close family understands the disease the better handle you will have on the situation.

As a colleague once said: “without education you can not achieve proper control,” referring to treatment of chronic migraneurs. However, the principle still applies for those of us with Parkinson’s disease. Case in point, I believe one of the biggest problems in Parkinson’s disease is medication overuse. This is one of the main reason, I think patients have increased dyskenisias  as well as increased side effects. this remains a huge barrier to break because I was trained at the cusp of new medications (dopa agonists and others that have followed subsequently) coming on board which means that physicians were accustomed to letting their patients take the medication when they ‘thought’ they needed it. even I at the beginning of my practice would tell patients it was ok to take extra.. However, I began realizing that when I asked how much med they took, how often, and for what symptoms? 1) they were overdosing and 2) often times they were taking medication unknowingly for side effects of medication NOT the disease which only worsened when took more like dyskenisias!

Therefore, my recommendation is keep a diary when you take extra medicine, the amount, the name, the reason, and what happens when you take it ..this will be a much better method of helping your physician track your symptoms and make appropriate adjustments. My philosophy is small amounts of various types (agonists, MAO inhibitors, COMT inhibitors, cholinergics, along with dopa) evenly spaced works so much better for control of side effects, mood control and decrease incidence of motor fluctuations which in turn will lead to a less burdensome life on others.

EVERY DAY IS A FIGHT. I am a Parkinson’s WARRIOR!

The Power of The Mind in determining Our Response to Medications & Other Therapies : By Dr. De Leon

“One believes things because one has been conditioned to believe them.”   Aldous Huxley, Brave New World

 

 

Have you ever wondered why some people seem to always get better with any medication or treatment given; while others have the opposite effect no matter what the treatment therapy is?

Well, you have heard of the “placebo” effect, I am certain. Today, I will discuss the “nocebo” effect…

The term nocebo in Latin translates to English as “I shall harm.” this is in contrast to the commonly known placebo effect in which any  type of intervention whether medical, surgical, or homeopathic results in a perceived beneficial response not directly attributable to the mechanism of action of the intervention prescribed. I along with other scientists and clinicians suspect that this harmful effect (opposite of placebo) has been largely ignored and overlooked for many years, particularly when it comes down to treating patients in a healthcare setting.

Both of these outcomes are directly linked to a subconscious mind effect related to our expectations of benefit/ improvement/ as well as side effects and complications with any given treatment.

We tend to feel better and do better when we like the doctor treating us, the setting of our care, as well as if we believe there is merit to the treatment. This is particularly true when participating in a clinical trial – since only highly motivated individuals are prone to partake of these investigations especially as it relates to more invasive studies like DBS, gene therapy, focus ultrasound, and so forth. this of course always begs the question of how much benefit MUST we see before we know it REALLY is beneficial to the majority? Because invariably the mind is a powerful instrument that can render someone completely paralyzed and immobile or have the opposite effect…some may even call it faith. Whatever this intrinsic mechanism is (which some studies have alluded to PD patients having greater faith compared to other chronically ill neurological patients); it usually manifests in improvement of motor symptoms. This is extremely important in studies that rely heavily on self reporting of symptoms. The initial believed improvement could be a figment of the mind, wanting and hoping to have real relief. But, what happens when the study is unmasked and this type of patient find out they were not on treatment? the same holds true for those who believe everything will go wrong and have a slew of side effects on placebo. There is an unraveling- patients may than underreport improvement or exaggerate positive response either way skewing the data.

However, where I have witnessed the biggest problem in outcome in treatment is in clinical practice. There is such a thing as having “too” much knowledge or anticipatory effect. If one goes into a clinic already believing there is no treatment possible to help symptoms, that no matter what you will experience side effects and adverse events or that your physician is not in touch with your condition- this will automatically create a nocebo effect and I guarantee there will be no force or treatment to make you well!

This is why I always highlighted the positive effects of the medication and underplayed the negative possibilities and encouraged patients to not read the entire list of possible side effects before starting a new treatment. I rather recommended trying it first with an open mind. This also applies to getting advice from others. when people hear of great things with a particular treatment they are willing to try more readily but if they constantly hear negative reports the outcomes are mostly going to be disastrous. remember that every individual is unique as to their response of medications, systemic illnesses, and overall genetic and cultural composition so we can not really expect to have same treatment across the border although there are some generalizations across gender and ethnicity. Second, this fact is the reason why I suggest everyone follows up with a physician /healthcare provider they absolutely trust because their faith in this person will subconsciously alter the response to care for the better.

So next time you participate in a study, ask yourself the reason for participating?

  • are you trying to please your physician?
  • are you desperate for good results?
  • did you feel coerced to participate?
  • are you just wanting to help science?
  • do you have preconceived expectations from what you read or heard?

If you are honest with yourself, these questions will help you decide when and how to participate and have the best outcome…

likewise before you go to the doctor, ask yourself these questions?

  • what do I expect from therapy?
  • can I talk to this physician?
  • does he/she listen to my concerns?
  • do I trust this physician? or do I have to consult with others? get second opinion?
  • have I heard negative things related to my illness or medications?
  • am I going to follow through with directions/recommendations?

We must find a balance between being able to advocate for ourselves, acquire knowledge about our disease and treatment without jeopardizing our future outcome and limiting our treatment options.

With practice and keeping  above scenarios and questions in mind – you too can have a better quality of life and be a better research participant without losing faith.

 

El cambio de papeles- Dra. De Leon

Al continuar la campaña de #EndParkinsons ( #terminemos con él Parkinson) este mes de abril reconocido como el mes de hacer conciencia por la enfermedad que afecta casi 10 millones de habitantes al rededor del mundo no debemos olvidarnos de aquellos que dan de su servicio y amor incondicional para cuidarnos. No cabe duda que el cuidar de un paciente se toma toda una aldea…

El cuidador que podría ser un amigo, esposo, o familiar es parte vital e integral del equipo del cual todo paciente debe tener a su alcance. Pero a medida que transcurren los años después del diagnóstico estas personas también tienen sus propios obstáculos. Con frecuencia estas personas requieren de mucha flexibilidad para poder ajustarse al nuevo papel de ayudante y cuidador. Esta transición en el papel de responsabilidades puede dejar al individuo que enfrenta el nuevo papel un poco aprensivo e incierto de su futuro y pueden manifestarse en síntomas de depresión, ansiedad y conducir al aislamiento.

Aquí les presento unos breves consejos que he aprendido después de años de cuidar a pacientes con enfermedades neurológicas crónicas para que puedan sobre llevar la carga de mejor manera. Es importante de recordar que el cambio de responsabilidades puede presentarse de muchas maneras. Por ejemplo si el paciente es el encargado de trabajar y mantener la familia la esposa tal vez se vea obligada de regresar a la fuerza de empleo por lo cual se verá doblemente afectada por tratar de proveer apoyo emocional y financiero. En estos casos es importante de envolver a la familia especialmente los hijos si son adultos en el cuidado del padre o la madre. Ellos pueden ayudar con el quehacer de la casa o en preparar comidas. Amigos y otros seres queridos también pueden dar una mano cuando sea necesario.

Para poder sobre vivir esta nueva posición es no perder de vista sus propios sentimientos, pasiones, y sueños. Y no dejarse arrastrar por la corriente de la enfermedad.

1.    No espere perfección o saberlo todo. Dejen lugar para los errores que se puedan cometer. Es como ser una nueva madre se aprende en las trinchas de batalla. Solo tiene uno que estar dispuesto a tener nuevas experiencias aunque no tenga tendencia de cuidador. Recuerden que “todos los caminos conducen a Roma.” Quiero decir que hay muchas maneras de hacer la misma cosa. Encuentren lo que más les favorezca y háganlo suyo.

2.    Encuentren valor en su nuevo papel de cuidador. No vean la experiencia como obligación sino como una aventura u oportunidad para crecer y aprender. Ustedes tienen mucho talento póngale ganas y sonrían le a la situación y verán que una buena actitud cambia todo. 3.    No traten de hacerlo todo. No somos una isla. Por favor de poder ayuda a sus médicos, trabajadores sociales, líderes religiosos, y otros familiares y amigos. Asistan grupos de apoyo para evitar el aislamiento. Y visiten las redes de  http://www.pdf.org  o caregiveraction.com

4.    No se les olvide que todo tiene un límite y esto también pasara. Pero las lecciones que pudiera aprender le durarán toda la vida. No dejen de soñar y hacer planes. Como decía mi abuelo que en paz descansa, “siempre hay más tiempo que vida.”

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.

The perils of traveling when you have PD:by Dr. De Leon

As I have been traveling to promote my book and women in Parkinson’s issues, I am reminded of some of the perils of traveling which can make anyone a bit discombobulated but for those of us who suffer from a chronic illness like PD it can really throw us for a loop.

I absolutely love traveling and I am absolutely thrilled to be feeling so much better to be able to do this on my own after having to depend on someone for a while. However, I am reminded of my illness each time I leave my home by the number of medicines I have to pack in order to be able to enjoy my travels. It is sad that packing my medications takes me twice as long than actually packing my clothes.

The first thing  we have to keep in mind when we travel, especially if going across various time zones, is the time changes when we are trying to keep up with our medication schedule. I find it a lot easier to go west than east. What I do is I continue to take my medicines as scheduled through out the trip and when I arrive I switch to that time zone and then proceed to take my medications on the same schedule (meaning every 6 hours and so on) – however, we must be aware of the time it has actually passed ..make sure you maintain the same hours between dosage so if you just took a medicine and arrived and now is time to take another medicine because it is noon for instance don’t double the dose wait til next dosing time ..but if you took medicine 5 hours ago and now new time zone indicates that you will have to wait another 3 hours but you know you take your meds every 6 hours take the medicine within the hour and adjust schedule… Do not suffer …and always keep medicines handy in your personal belongings and within your immediate reach like in a purse and carry water with you to facilitate intake of pills. I always keep my medications in my purse in a pill  box. Within this box, I also carry prn medications..in other words medications I don’t take on a daily basis but might need especially when traveling or sitting for a long period of time such as nausea medications, pain meds- like Tylenol & Motrin, migraine pills, and muscle relaxants.

Try to get seating with extra leg room and do stretch exercises  while sitting every hour…stretch your neck, legs, back, and feet. You can do small circular motions of neck and limbs including hands and feet for five minutes…walk about if you can. Also, if you tend to swell, like I, do when sitting you might consider wearing Ted hose or support stockings to avoid deep vein thrombosis (DVT’s) as well as improving circulation and decreasing edema.  Conversely, don’t wear tight socks that only go to your ankle- this will only worsen swelling rather use diabetic socks.

Since it is hard to take diuretics when traveling to decrease swelling, we must try to eat naturally diuretic foods like cucumber, lemons, tomatoes, and drink plenty of water especially if you are going to be out on the sun -need double amount of fluids. Drinking lots of water can actually help flush  all the toxins out and is the most effective diuretic. Another way to eliminate fluid build up in your body naturally is to drink cranberry juice, or add cucumber  or lemon wedges to your drinking water..of course any caffeinated drink will help to get rid of fluids but these will only dehydrate you in the end so not as healthy and do not recommend if traveling  for long distances. Another food which has lots of natural diuretic effect is oats. Go ahead and have an oatmeal bowel before traveling or in the mornings while your traveling, not only will this help get excess fluids but will promote better digestion.

Drinking plenty of fluids also helps to improve digestion and decrease constipation which also makes us feel bloated and causes swelling. Because we sit so long when traveling, the natural peristalsis of our bowels decreases even further. Now compound that with medication intake  side effects and PD itself and we are one miserable uncomfortable person with bloating, gas, increase nausea and poor absorption of our medications making them less reliable when we need them the most. I recommend taking ‘gas- X‘ or some equivalent..try to eat light like yogurts and take a probiotic capsule to stimulate  proper digestion since I have found it extremely hard to take laxatives when traveling especially if have a packed schedule.

In flight or on your trip you can also drink Sprite, ginger ale (this also aids with Gi upset and nausea, plus ginger is a good diuretic). Eat dry fruits  and crackers ..I like  to carry with me ‘thin addictives‘ they make a great snack, easy & convenient to carry plus they have dry  fruit and nuts to give you energy. If you are completely bloated and feeling constipated do a light liquid diet the first day  when you arrive at your destination. Although, you will certainly need a nap after you arrive, if possible you should continue your exercise routine there- sometimes hard to do if are speaking or are sight- seeing, good thing is that usually sight seeing entails a lot of walking so you will have plenty of exercise). but don’t neglect your sleep..of course the sleep may be a bit messed up. in order to avoid jet lag carry melatonin 6mg – 1-2 tabs a night.  when you are on vacation especially if at a tropical island you will be tempted as I have to do as the locals do and enjoy some nice alcoholic beverages with a little umbrella. however, we must be mindful of our alcohol intake for several reasons.

1)  initially it can make you sleepy after a few hours it becomes a stimulant disrupting your sleep wake cycle further and making you more lethargic and fatigue.

2) it is extremely dehydrating.

3) can worsen REM behavior

4) can interfere with your medications

5) increases swelling

When you get to destination and en route eat plenty of vegetables like carrots, asparagus, tomatoes, beets and celery which also are natural diuretics. ( I emphasize the diuretics because all of the Mao inhibitors,  along with the amantadine and dopamine agonist cause a lot of fluid retention especially in us women). The above foods are also healthy and can cause some slimming effect especially oat consumption. Did not our mothers tell us we are what we eat? Seems like there is a lot of truth behind this saying…Even before trip should avoid salty foods and no high fatty meals in transit especially if crossing several time zones.

I have learned these perils the hard way  making me look like a 9 month pregnant woman while traveling because I am unable to take my Linzess, & my diuretic pills because I am on the go and don’t want to have an accident or be detained every few minutes looking for a bathroom worst sometimes is hard to keep a eating schedule as I would at home  one thing we must always remember is that WHEN we eat is as important for us living with PD as WHAT we eat. so next time you are packing your suitcase getting ready for a travel adventure keep some of these points in mind to avoid the perils and focus on the FUN & Joy of it all!

 

 

 

Camino al Mundial 2016 (Congreso del Parkinson -WPC 2016):Dra. De Leon

Estoy muy entusiasmada y agradecida de poder formar parte del comité encargado de los preparativos para un evento tan especial e importante como es el congreso mundial del Parkinson. Este evento se lleva acabo cada 3 años. El último se llevó acabo en Montreal. Este año se celebrará el cuarto Congreso Mundial en la ciudad de Portland, Oregón  en septiembre 20 al 23 de 2016. Los invito a todos ustedes a que consideren asistir a este gran evento.

¿Pero Porque asistir se preguntarán? Primero un poco de historia – en el 2002 el ex director del Instituto Nacional de la Salud (NIH) Dr. Elías Zerhouni hizo la pregunta ¿Porque no había una conferencia donde todos pudieran asistir al mismo tiempo en el área del párkinson? Esto creo la iniciativa del primer mundial del Parkinson e se llevó acabo en Washington del Distrito de Columbia en febrero del 2006. Esta fue una idea innovadora para juntar a la toda comunidad nacional e internacional del Parkinson  incluyendo pacientes, familiares, doctores y científicos.

Desde la primera conferencia a la cual asistieron 3 mil personas ha crecido enormemente. Este año, se espera que participen delgados de más de 60 países. Pero en los últimos congresos ha habido poca participación por la comunidad hispana. ¿Pueda que tal vez sean las barreras del idioma el que nos separe de tales eventos o tal vez el costo o la misma distancia? Pero aunque todas estas razones son muy legítimas especialmente acudir a algo que no vamos a entender puede ser problemático.  A la vez si no ponemos interés de ir y participar en algo de tan gran importancia que podría dejar grandes beneficios para nuestra comunidad damos la apariencia de que no nos interesa este tipo de evento. Es imperativo que las puertas se nos habrán a nosotros los latinos para tener voz en las fundaciones principales del país porque aquí en los Estados Unidos los Hispanos formamos la minoría más grande y también entre los hispanos tenemos dos veces más riesgos de ser afectados por esta enfermedad llamada Parkinson que afecta más de 7 millones mundialmente (con casi dos millones aquí en nuestro país). Pero a pesar de esto no somos representados igualmente en los estudios científicos ni recibimos los mismos tratamientos médicos ni quirúrgicos.

Hoy más que nunca necesitamos unir nuestras voces para poder hacer cambios en el tratamiento en nuestras comunidades para poder lograr mejor calidad de vida. Solamente con asistiendo a programas como este podemos empezar a dejar nuestras voces resonar en aquellos que tienen la capacidad de hacer verdaderos cambios en la ciencia. Para poder encontrar cura es importante entender la cultura y la genética que nos separa. Y nosotros necesitamos encontrar apoyo en nuestra comunidad aquí dentro y fuera del país. Porque como dice la antigua canción de Roberto Carlos “yo quisiera tener un millón de amigos y así poder cantar mejor” porque en la unión esta la fuerza. Además también es importante como saber encontrar los recursos necesarios para nuestras familias y para nosotros para participar en estudios científicos y para obtener beneficios algo de lo que pueden aprender más allá en la conferencia. Allí conocerán a otras personas como ustedes de aquí y otros países que les servirán de guías y mentores en su jornada con esta enfermedad. O tal vez alguna de ustedes que ya tienen muchos más años viviendo con la misma pueden ser embajadores o partidarios de otros que apenas comienzan esta larga trayectoria.

Por ultimo allá podrán asistir a conferencias donde aprenderán cosas prácticas para el diario vivir como nuevos tratamientos al igual que los últimos avances en la ciencia que ustedes después pueden desimanar en sus comunidades médicas y con sus otros amigos que también padecen del párkinson. Si tienen bajos recursos pueden aplicar para becas de viaje y ayuntamiento. También si dirigen a médicos o científicos a esta conferencia se les garlaran premios y puntos para viajar. Entre más refieran más ganan (tienen que ser gente nueva que nunca ha ido). Y si usted tiene algo científico o clínico de interés que presentar a la comunidad por favor sometan un cartoncillo (poster) de presentación. Allí estaré yo, y Claudia directora del centro de  Parkinson de Mohammed  Ali (MACP) (que trabaja con la comunidad Hispana de Phoenix en  Julio uno de los bloggers del congreso, Israel embajador y partidario activo de la comunidad del párkinson al igual que Fulvio que es también embajador del congreso y  estuvó en Glasgow en 2010 cuando se presentó  la cobija  ( Quilt Project del PDF) representando a todos los del párkinson mundialmente (ahí tuve yo un pedazito también- en honor de mi abuela) y asistio al congreso en el 2013 en Montreal. También por medido de Julio, Claudia,  yo, y otro les mantendremos informados de los nuevos avances y temas de importancia que se presentaran por allá. Esperamos verlos en la ciudad de Portland en Septiembre a todos ustedes.

Para más información acerca de los temas: Www.wpc2016.org/program

www.wpc2016.org

O para inscribirse o seguir a Julio:http://www.movingforwardwithpd.com/

  Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson’s in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called “Unidos contra el Parkinson” (together against Parkinson’s disease) at http://portal.unidoscontraelparkinson.com

Israel Robledo Claudia Martinez Claudia Martinez