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.

 

 

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

 

Go Red Month for Heart & Brain Health in Midst of PD- part deux: By Dr. De Leon

“I think I can, I think I can, I think I can…”

It turns out that our moms were right all along…there may be some truth to the old wives tale that ‘we are what we eat!’

So as we continue to bring awareness to the importance of staying heart and brain health, we must recall that there are over 44 million women in the US who suffer from Heart disease and 90% of women have at least one risk factor for stroke or heart disease!

Having a poor diet not only leads potentially to coronary heart disease but subsequently puts you at risk for strokes and onset of dementias.

Some of the risk factors for stroke are age, gender, and family history which unfortunately  we can not do anything about, other than be a bit mist with our hereditary gene pool and hope we dilute it enough in the next generation so our kids don’t suffer the same consequence.

Well, you are probably wondering why I am writing about stroke and heart attack awareness in a blog for Parkinson’s?  Simple, we are not immune of having other neurological or medical illnesses simply because we already have one. Plus, in fact since we are now discovering that there may actually be a gender difference in not only presentation of PD but also of disease course. This topic is extremely timely as PD awareness month is just around the corner.  in fact our risks increase as we age and some of the consequences of having a chronic illness such as Parkinson’s may only serve to increase the risk. so I encourage everyone to take note of the possible risks and note that 80% of the risk can be modified with some healthy choices such as exercising, eating better and becoming more active.

For instance, as our disease advances it becomes more challenging to get about thus increasing inactivity for longer periods of time- I have been guilty of this myself at times – its easy to sit around and feel sorry for yourself when you are weak, stiff, shaky or simply “don’t feel well.” This is when we must be strong and employ mind over matter- positive thoughts go a long way to self healing and braking cycle of depression.

Some of the medications may cause us to have either low blood pressure or high blood pressure or worse have a yo-yo effect which is a 100 times worse for the brain than having either too low or too high BP. the constant swings is what predisposes to hardening of arteries and subsequently lead to clots or hemorrhages ( bleeds in the brain). Furthermore, PD patients tend to have many sleep disturbances ( as I write here in the middle of the night because I cant sleep!) These unapparent sleep problems can lead to devastating health problems such as increase obesity, increased high blood pressure and even increase the risk of sudden death particularly when is caused by sleep apnea that is undiagnosed or untreated.

Finally, the thing I wish to discuss lastly is diabetes or high sugars. as I mentioned before there are a few articles which mention possibility of increased diabetes with PD but at very least can cause some problems with normal function of insulin since dopamine suppresses its function. this may be one of the reasons we gain weight with medications or perhaps is the other way around? no one really knows for sure but the fact remains that many of us put on a few extra pounds during the course of the disease which only increases our risk of CVA’s and heart attacks.

since there appears to be a growing number of people developing diabetes in our country, the CDC (Center for Disease Control) has put out recent recommendations to determine who is at risk in order to prevent developing of full blown diabetes if an exercise regimen and weight management are instituted losing at least 5% of body fat( I am seriously working on this- not easy when you are always hungry!). The concern came about since diabetes seems to have reached epidemic proportions with about 86 million Americans suffering from this each year.

So by determining your pre-diabetes ( means you have higher sugars than normal but not in the range to be officially labeled Diabetes) risk, preventive measures can be instituted earlier on. otherwise, it is speculated that roughly 30% of those at risk will develop Diabetes within 3-5 years.

***The CDC recommendations are as follow: ( apply this to previous blog on dizziness)

  • if you are a man hold “1” finger ; women -none
  • if you are over 60 hold “3” fingers; 50-hold “2”; and hold “1” finger if you are over 40
  • if you have high blood pressure- hold “1”
  • if you are inactive (sitting in couch all day) -hold “1 finger”
  • if diabetes runs in the family- hold “1” finger
  • finally, look at body types – and assign a value depending what your body type is- and be honest!

bodyok, now look at the number of fingers you are holding.. if you have 5 or more you are at risk of developing Diabetes and need to make appointment with your physician ASAP and start life style changes…

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