parkinson's disease, Parkinson's Health, parkinsons health and beauty tips

Going to the Dentist Can Be a Challenge When You Have PD: by Dr. De Leon

Life is short so smile while you still have teeth.”

I wrote a while ago about the importance of maintaining dental hygiene particularly in light of a chronic illness like Parkinson’s disease. The slew of medications can potentially lead to tooth decay due to drying of mouth and wearing of enamel. However, keeping and scheduling dental appointments can potentially be challenging particularly as our disease advances. I know this too well both as a neurologist and as a patient with PD. Going to the dentist use to be common place but now ten years into my disease I have to think about it twice and may have to reschedule a time or two.

Yesterday, I went to the dentist although I seriously considered rescheduling once more due to severe nausea. Some of you may know what I am talking about, but for whatever reason now dental cleaning is extremely uncomfortable. One it always leaves my mouth and teeth incredibly sore for a day or two not to mention that keeping my mouth open for whatever extended amount of time needed for hygienist or dentist to work on triggers my dystonia not just in my jaw but in my neck which adds to the pain and discomfort which then triggers a migraine. It is an inevitable chain reaction unless I prep myself. So before I Go to the dentist, I have to take my nausea medicine, my migraine medicine and a muscle relaxant to keep the dystonia from setting in.  Needless to say I can only stand having my mouth open for so long so as you can imagine if you had the same problem doing procedures of any kind which could last more than 45 can be quite challenging. In a previous blog titled “tips on how to maintain dental care,” I provide some insight on how to get ready for a dental appointment. As I mentioned before it is important to schedule the visit at the maximum. Peak of your medication effect so if you are better in afternoon schedule at that time. For me now as I am beginning to have more difficulties with swallowing as my disease progresses I especially have to make sure medication is full force because there is nothing worst like having a choking sensation and having to tell yourself ” swallow” every time you have to especially when your head is tilted back, mouth wide open and water squirting at you!

If you experience some of these problems talk to your neurologist ahead of time especially if having major dental work done. He she can prescribe oral dissolvable medications as well as sedatives and muscle relaxants to aid in the process as well as coordinate care with your dentist.

I now in need of a couple of fillings repaired. Besides taking my muscle relaxants and anti-inflammatories, I may need a dose of Xanax which requires someone accompanying me to the appointment to drive me home. Another alternative is scheduling sedation which will definitely require making prior arrangements with a friend or loved one to accompany you.  The same is true if you are suffering from blood pressure problems particularly if it drops. So now for at least last 3-4 years my dentist always checks my blood pressure before commencing any treatment. He also lets me wear my sunglasses during the procedure to avoid extra sensory articulation from light shining directly on my face and compounding any possible migraine trigger. Can also ask for quick short breaks if work is extensive.

Even though I don’t much enjoy going to the dentist anymore and is no longer “routine,” it is equally important to continue care for my teeth as for my body; so with careful planning and necessary preventive treatments I can still go on my own without much difficulty other than a sensitive mouth for a day or so. At least both of my dentists are well versed on the manners of PD so I know I am in good hands.

 

 

Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment, Parkinsons disease, parkinsons health and beauty tips

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

 

chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health, Parkinson's symptoms, parkinsons dementia, parkinsons health and beauty tips

Go Red: A must for women with PD: By Dr. De Leon

“Follow your heart but take your brain along.”

 

February is not only the month of love but is also more importantly the month in which we bring awareness to the 2 most important organs we have -our BRAIN & our HEART. Brain & heart health are extremely important for all but particularly for women with PD because the symptoms of a heart attack and a stroke are not similar to those of men in many cases. Thus, women may go un-diagnosed and are more likely to suffer long standing consequences. In fact in a study looking at women and stoke they found that most physicians still regard cardio/cerebrovascular disease as a man’s disease. Thus, women are not often offered the appropriate counseling. Only 22% of Primary care physicians and 42% of cardiologists felt equipped to deal with cardiovascular issues in women. These figures puts us at a significant disadvantage from a diagnosis and treatment standpoint.

A few years ago, I had an episode of severe sudden chest pain with exertion along with nausea, dizziness, and sweating. Of course being a physician I could not exclude a cardiac cause for my symptoms. However, when I went to the cardiologist his response was less than I would have expected given my condition because in his words ‘women simply don’t get heart attacks‘ especially at your age. Of course, no one wants a heart attack (and by the way I do have family history of young onset heart disease)  at any age but excluding an entire differential based on gender seemed a bit worrisome. My symptoms turned out to be caused by a combination of acute endocarditis along with malignant hypertension. Fortunately my blood pressure is now under control (at least for now) and my endocarditis has resolved.

 

However, you may be wondering why I am writing about strokes and heart attacks in a Parkinson’s blog?  Well, for several reasons. First, because those of us who suffer from Parkinson’s disease and other atypical Parkinson like Shy-dragger disease have autonomic dysfunction; with this problem comes severe alterations in blood pressure ranging from extremely low to extremely high as is my case. In my experience as a neurologist taking care of stroke patients i have found that it is the constant fluctuation from very high to very low that is most damaging along with the rate at which it changes (rapid change is more deleterious to vital organs like the brain and heart). Furthermore, high blood pressure is the single most important risk factor and leading cause for stroke. We often talk about low blood pressure in PD patients but rarely do we talk about high blood pressure. But even if our blood pressure did not rise the sudden drop can be equally detrimental to an organ that is critically dependent on blood flow and oxygen levels to function properly.

Second, patients with PD and other atypical Parkinson like MSA have tendency to have as part of disease sleep apnea. It is believed that half of those who have sleep apnea also have high blood pressure. Plus, the severity of the hypertension is directly related to the severity of sleep apnea. But, you don’t have to have severe sleep apnea to have problems. Even mild sleep apnea can alter your blood pressure putting you at risk for a stroke. This is crucial especially given the fact that most strokes occur in the early hours of the morning when we are at sleep.

 

Third, migraines with aura appear to be a risk factor of PD and who has more migraines other women? In fact recently, in a medical journal it was speculated that having an aura increases the risk of having atrial fibrillation yet another risk factor for developing stroke.

Finally, just because we have one medical problem i.e. Parkinson’s does not mean we are immune to developing other neurological disease or medical problems that come with age such as high blood pressure.
The good news is that high blood pressure is a modifiable risk factor. We might not be able to do anything about our gender, our age, or our Parkinson’s diagnosis but we can be proactive in making sure, we eat right, we exercise, and we talk to our physicians about any weight issues we might have which directly impact our risk for both apnea and high blood pressure. Also, it is important to monitor your blood pressure and discuss treatments if needed as well as stroke prevention treatments. The other good news is that although stoke studies have not shown aspirin to prevent strokes in a sub-study of women it proved to be extremely effective. ( I take my aspirin daily!) Lastly, I firmly believe that because we have a higher likelihood of developing apnea we should be frequently screened. Thus, speak to your physician about these issues especially if you have family history of cerebrovascular disease or if you are a young woman with PD and have migraines with auras, or are on birth control pills.

References:

Zedde m. Women and stroke: A matter of education?. Neurology. http://n.neurology.org/content/women-and-stroke-matter-education. Published 2019. Accessed February 3, 2019.

Chang BP e. Neurology Concepts: Young Women and Ischemic Stroke-Evaluation and Management in the Emergency Department. – PubMed – NCBI. Ncbi.nlm.nih.gov. https://www.ncbi.nlm.nih.gov/pubmed/28646558. Published 2019. Accessed February 3, 2019.

High Blood Pressure Symptoms | Sleep Apnea Guide. Sleep Apnea Guide. https://www.sleep-apnea-guide.com/high-blood-pressure-symptoms.html. Published 2019. Accessed February 3, 2019.

Aspirin May Lower Stroke Risk in Women with History of Preeclampsia – ScienceBlog.com. ScienceBlog.com. https://scienceblog.com/505555/aspirin-may-lower-stroke-risk-in-women-with-history-of-preeclampsia/. Published 2019. Accessed February 3, 2019.

Nogrady B. Increased risk of atrial fibrillation with migraine aura. Mdedge.com. https://www.mdedge.com/neurology/article/184528/headache-migraine/increased-risk-atrial-fibrillation-migraine-aura. Published 2019. Accessed February 3, 2019.

@copyright 2019

all rights reserved by Maria L. De Leon MD

chronic illness, disability in PD, drooling & swallowing, fluctuations in parkinsons, medications in Parkinson's, Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinson's symptoms, parkinson's treatments, parkinsons health and beauty tips

I am having trouble swallowing …could it be my Parkinson’s or something else? By Dr. De Leon

“The only time to eat diet food is while you’re waiting for the steak to cook.” Julia Child

 

As we start a New Year, thoughts of health and staying healthy seems to be one of the foremost concerns in most of our minds, at least they are for me. Most of us who have lived with PD for a while realize what a burden it can be especially in light of the fact that for the majority of us Parkinson’s is not the only disease we have or will ever have. Unfortunately, not only are we still at risk for developing other major illnesses as we age but PD itself being a systemic illness can in turn predisposes us to other diseases like various types of cancers, dementia, strokes, possible diabetes along with other gi problems. Thus, we must always be vigilant for any new symptoms. We must be savvy in recognizing these as well as knowing what to do when they do arise.

One of the best tips I can give you as a neurologist is to make sure that you have frequent follow up appointments with your MDS or neurologists especially if you have had PD for more than 5 years because sometimes we as patients are not very good at picking out subtle changes or worse when we do recognize there are changes we sometimes get afraid of the implications so we don’t bring it up and try to deal with it. You should see your physician upward of 4 times a year in my experience if you are more than 5 years certainly more than 10 years. Remember-Our body’s change as we change and so does our response to the medications.

Now that I am nearly 10 years into the disease I have noticed increased chocking and swallowing problems. When you choke on your own saliva –that is an attention grabber! The other day I choked while taking my potassium which resembles a “horse” pill. This nasty pill went down the wrong pipe, I was beginning to panic since it was stuck smack down the middle of my throat then I remember that the potassium pill dissolved quickly with water so even though I was chocking and gasping for air I was trying to drink water to dissolve pill. Of course it was making me panic more as I was really struggling to breathe…I thought is this how I die? Flash of a patient that asphyxiated eating a peanut butter sandwich passed quickly by…

I was not going to go down this way I was about to attempt a Heimlich maneuver when I began spewing and foaming the potassium out of my mouth in a violent cough. All because my PD meds had not kicked in before I took such large pill. This was too close for comfort, this meant time to adjust medications. In my case it was an easy solution but is not always straight forward.

If you are experiencing any amount of swallowing dysfunction even if mild does not have to be as violent or severe as mine to bring attention to the problem.

I am choking you and your doctor will both ponder if your PD has worsened?

Is it Parkinson’s or something else entirely?

First, you need to keep a record of the events:

  • When does it happen? Morning? Night? After medication intake or medication wears off?
  • Does it happen every day?
  • Does it happen with solids? Liquids? Or both?
  • Does it happen only with pill intake?
  • Do you cough? / wheeze?
  • Are there other symptoms with it like dizziness, unsteady gait?

Then you have to address:

  • Are meds not working? Are they wearing off? Need larger doses?
  • Do I have any other medical reasons for this? (strokes, gi problems, throat tumors)
  • Atypical PD?

Also if you had DBS implant you may have worsening of swallowing especially if already had some symptoms prior to surgery. sometimes adjustment of DBS can improve symptoms.

Fortunately, mine got corrected with adjustment of medications and addition of new med called RYTARY – intermediate release levodopa.

It is important to remember that even if there is aspiration things are not as black and white. I am glad that many other doctors and therapists are starting to take note of this fact. Food and being able to eat and enjoy it is a big part of our culture as well as our quality of life. Being able to taste and sit at the table makes us feel more like a normal person. So sometimes, even though a patient can’t swallow or is aspirating and requires a feeding tube –the family can work with the doctors and speech therapist top provide quality and comfort to their loved ones- may start with ice chips or food to taste like pudding, or a combination of being able to eat normal meals at certain times and use the peg tube at other times for pills or calorie sustenance.

  • Regardless of cause all patients with swallowing trouble, everyone should have an evaluation by a speech therapist which should include a modified barium swallow to make sure there is no aspiration in particular silent.
  • Your MDS/neurologist may refer you to get an ENT evaluation and/ or Gi evaluation to make sure there are no other treatable causes. They may also order MRI’s of brain or neck.
  • Usually swallowing difficulties in Parkinson’s may begin to occur after several years of illness usually >7 years, if having problems swallowing at the beginning or more pronounced and rapidly deteriorating is a big indicator that we are dealing with a more aggressive Parkinson’s plus type such as PSP, MSA, LBD etc.
  • These are all the questions that you and your doctor will need to address. You need to seek immediate attention if having difficulty swallowing in order to protect airway and prevent aspiration pneumonia which can lead to hospitalization and early demise.

 

Next time you feel stressed or that the passion and flair has gone out of your life because of PD, “Pull up a chair. Take a taste. Come join us. Life is so endlessly delicious.” (especially if you taste anything chocolaty!)
Ruth Reichl

 

 

 

 

Parkinson's Diagnosis, Parkinson's Health, parkinsons health and beauty tips, tips for safe and happy travel with Parkinson's

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon.

parkinson's disease, Parkinson's Health, Parkinson's treatment, parkinsons health and beauty tips, parkinsons symptoms

Tips for Treating Swallowing Difficulties in Parkinson’s: By Dr. De Leon

Tips for Treating Swallowing Difficulties in Parkinson’s: By Dr. De Leon.

parkinson's disease, parkinsons health and beauty tips

Tips & Tricks: Traveling with Parkinson’s Disease: By Dr. De Leon

Spring break is fast approaching and many of us especially those of us with children look forward to this time of year to being able to travel as a family. Sometimes you even get to chaperone for fun on school excursions just as an excuse to see the world through their eyes! However, even though it now takes me longer to pack my medications than it does my actual clothes and toiletries, I still enjoy traveling whenever possible….( still have a million meds to pack- need a bigger bag just for this but could not do it with out my trusty world travel -diva bag!)
So, here a few tricks to make traveling a bit easier and not such an ordeal.
Of course, it takes more planning than it once did since traveling with PD is a lot more complex than if we did not have a chronic illness. Don’t be discouraged it can be done but don’t forget to keep in mind destination climate and time of year. We not only have to keep track of our meds but we also have to be conscientious of the temperature and other weather conditions in the areas of our destination because believe it or not extreme weather can make our symptoms worst as I am sure many of you already know.

General tips!

 Always carry a letter from your neurologist stating your diagnosis and medication list. This might avoid extra scrutiny or people thinking you are either drunk or mentally challenged.

 Always keep on hand your PD specialist phone number and how to reach after hours. Don’t forget the countries area code when calling if traveling outside of the US.

 Always keep your medications with you, that’s one piece of luggage you cannot afford to do without – trust me I know. Carry some extra in case you spill. I have a tendency to do this as many of you can relate, I am certain; also in case there are delays to your travel plans due to weather, illness, etc. Plus, carry a prescription and letter from your doctor in case you need or someone gives you hassle for carrying so many pills. I never had this problem but is best to be prepared just in case. Put your medicines in small plastic containers or bottles you can get from pharmacy or in a large pill box depending how long you will be away from home.Product DetailsProduct DetailsProduct DetailsProduct DetailsFashion Smart Pill and Vitamin Compact Travel Clutch Case (Fleur De Fash)

 Pace yourself, listen to your body. You know it better than anyone else. Try to keep routine and medications at same time – if traveling abroad, stay with the new time zone in keeping with medicine intake. Choose activities wisely and allow for down time. If planning on climbing Machu Picchu do at the end of trip so can recover at home and on plane on way back.

 Leave the ego at home. Fortunately, we now have so many tools at our disposal, please make use of them this includes folding canes with height adjustment, wheelchairs, laser canes, disposable undergarments, you name it. Don’t pay any heed to those staring who do not understand what we have to go through.laser-cane-parkinsons_tProduct DetailsU step walker with laser for foot placement

 Don’t underestimate the importance of a good travel companion especially if venturing out of comfort zone or internationally. A good friend or companion can Tips for traveling with friends... and staying friends.be a god send when you need an extra pair of legs or hands. Trust me, when I suddenly freeze because my back gives out from the rigidity of my axial muscles it is nice to have a plan ahead and a person to lean on to help walk with me to prevent falling and to retrieve my luggage is an absolute gift.

 Mentally notice all bathrooms especially when traveling internationally do not pass a good one since these are hard to find. Remember many charge to use the facilities as well as for the toilet paper. So carry your own toilet paper. Also most all older countries like Italy have only one bathroom for both sexes and toilets are really low with no toilet seats so a good companion not only will help to stand guard but can aid you in going to the bathroom.

1. Remember a lot of us have bladder issues so keep a mental note of location in case you have to hustle back but if don’t think can do this that’s what undergarments are for. There is an app to help locate restrooms but beware of international roaming fees.

 ESPECIALLY IF TRAVELING Outside of US or remote areas have your doctor give you prescriptions for Apomorphine in case need it ( make sure you know how to use and what to expect before using- the company now has 24hour hotline to assist),take sleeping pills, muscle relaxants, and pain meds like Vicodin. As well as anti-inflammatories in my experience a Tylenol plus a Motrin go along way for relieving most pain.

 When making reservations try using an agent that has dealt with booking trips for people with disabilities. Always purchase travel insurance best if you buy insurance from third party rather than travel agent or cruise ship. (AIG Travel Guard).

 Consider the climate of country where traveling- if during hot weather consider investing in a cooling vest. Consider Alaska in summer, Europe in fall, and Caribbean in winter.

 I also recommend a cruise, I am not a big fan of being in the middle of the ocean but a nice river cruise may just be what the doctor ordered. Smaller, easier to navigate has all the amenities at your disposal plus if you can tired or fatigued you can just go lay down. Plus, there is a doctor on board!

Don’t Forget to Have fun! In light of the fact that our Parkinson’s is progressive we want to enjoy life while we can so go on that trip you always wanted now rather than later. CARPE DIEM!!!

Bon Voyage!!!

@copyright2014

all rights reserved by Maria De leon MD

 

 

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Tips to Prevent and Treat Neck Pain Caused by PD & Dystonia: By Dr. De Leon

Tips to Prevent and Treat Neck Pain Caused by PD & Dystonia: By Dr. De Leon.