chronic illness, Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinson's treatment

Tips for dealing with Chronic Pain: by Dr. De Leon

 

As I have spent the last week or so dealing with one type of pain or another I thought it might be worthy to go over the different types of pain people with Parkinson’s disease can experience and discuss some of the ways we can treat such pains while maintaining a full life.

Living with chronic pain is another ball game entirely than dealing with acute pain. As a person who has experience both and treated many patients over the years with both, I think I have a pretty good understanding of the consequences and common pitfalls we as patients and we as doctors fall trapped to when treating pain.

Chronic pain is one that lasts more than 3 months to 6 months since onset. although, some theorists and researchers have placed the transition from acute to chronic pain at 12 months.  Acute pain on the other hand is usually one that lasts less than 30 days.  Another popular alternative definition of chronic pain, involving no arbitrarily fixed duration, is “pain that extends beyond the expected period of healing”.[1] Epidemiological studies have found that 10.1% to 55.2% of people in various countries have chronic pain.[2]

We know that living with Parkinson’s disease on a daily basis can be a source of frustration and even lead to depression and feelings of hopelessness, if not treated promptly. Just knowing that there is no end in site can create a sense of hopelessness. So people that have intermittent pain have much better coping skills than those with chronic intractable relentless pain. The one common denominator amongst all of us who live with PD is the fact that we will experience pain at some point in our disease usually many times because there is no one single pain type. in fact most of us experience different types of pain even in a single week just as I have this past week, this is because my pain like that of many is  caused both by the illness itself, and medications as well as those caused by normal living (wear & tear if you will). Charcot famous neurologist who suggested name of Dr. James Parkinson be used for pathology and clinical symptoms of what we now call PD, recognized more than a  100 years ago that ‘pain’ was a phenomena of PD.

When I was in practice I loved the medication Vioxx ( before it was taken off the market) and so did my PD patients. This medication seemed to do wonders for the majority of patients with PD independent of the source. I, unfortunately, have not come across another medication which has the same effect. my patients too suffered the consequences of not having this medication available.

So you can have pain caused by the disease:

  • musculoskeletal
  • central
  • radicular
  • dystonic
  • joint

We now know that pain can be a presenting symptom of disease but the incidence in pain increases as we get older and disease advances. the majority of PD patients report pain as a muscle cramp or tightness in the neck, back, paraspinal muscles and calf muscles. The majority of this pain can be alleviated with anti-parkinsonian medications, at least in the acute phase. however, when it becomes chronic it requires a great deal more effort to break cycle which has sensitized the brain to be hyperactive to even the smallest pain.

Pain etiology: (3)

  1. PD itself:
  • tremors
  • abnormal posture
  • akathesia
  • dyskinesia
  • dystonia
  • falls/trauma
  • motor fluctuation

2.  medications:

  •   increase risk of cancer- prostate, melanoma, breast, benign brain tumors
  •  increase risk of osteoporosis – increasing risk of fractures
  • increase migraines/headaches

3.common diseases: which may worsen or change as we age- also may be indirectly exacerbated by PD or PD meds.

  • Diabetic neuropathies
  • migraines
  • herpetic neuralgia- PD patients have increased risk

Therefore, for pain etiology brought on by disease as in #1- the treatment is managing and adjusting dopamine medications including treatment with DBS and ancillary services such as physical, occupational therapy as well as joining in exercises programs but must have doctors approval prior to starting any programs to avoid further damage or exacerbation of symptoms. Botox, muscle relaxants, spine stimulators, baclofen pump, Lidoderm patches, and other muscle relaxant/anti-inflammatories  patches, as well as anti- inflammatory medications like ketorolac (Toradol) can play an important role in maintaining patients pain free. The use of prophylactic medications may also play a role in this group but not as much as in the other two. the key is to ALWAYS seek treatment by your MDS and a neurologist. They will then refer you if you need certain procedures or treatments which they themselves cannot perform.

There is no need for narcotic use in most pain situations due to PD unless it has become chronic and ALL other modalities have been exhausted. I don’t mean morphine or Demerol  but rather Vicodin, Tylenol #3 etc. Narcotics work great for acute pain due to herniated disc, fractures, cancer pain, or acute radicular pain- this means only a short amount of time until problem is fixed or it becomes chronic because there is no other  treatment modality and by then prophylactic medications need to be instituted such as antidepressants and  anti-seizure meds (Keppra,Neurontin, Lyrica, Topamax,Tegretol, Lamictal).  this will prevent brain from becoming sensitized and will also require much lower doses of narcotics. We don’t want narcotics in PD patients because the potential for exacerbating PD symptoms as well as increasing likelihood of confusion/disorientation and possibly triggering psychosis.

For category two: if medications like Stalevo are causing headaches switch meds; if unable to do so then back to what I described above. monitor for risk of cancer; monitor and institute prophylactic measures for osteoporosis prevention- monitoring vitamin D levels, taking replacement as needed, get sun at least 3 times a week for 30 minutes. Exercise to strengthen bones which will also improve mobility which will decrease likelihood of pain in axial muscles. get regular bone density scans.

For category three: treat diabetic neuropathies with anti seizure meds or antidepressants, take b1 (thiamine) daily, monitor thyroid, and B12 levels which can also cause neuropathies and monitor blood sugars (hga1c- better predictor) since there may be an increase in insulin resistance due to effects of dopamine.

If you are an elderly person and had chicken pox maybe at higher risk of herpetic neuralgia (shingles) should talk to doctor about getting vaccine.

As for me and all my pains which have to do with spine tumors and chronic migraines treatment of choice is botox which I plan on getting in next few days! meantime taking prophylactic meds along with anti-inflammatories (nsaid’s like Mobic, Celebrex, arthrotec,motrin, toradol or steroids) and muscle relaxants ( such as flexeril, tizanidine, Relafen, robaxin, klonopin, baclofen, dantrolene) to ease pain.

Finally, the best  way to deal with chronic pain is getting a good nights rest!  (at least 8 hours) and listening to your body when it is tired and stressed- make sure you plan ahead some down time each day at least 15-30 minutes. This for me is the best way to deal and avoid pain. Pain starts usually when I don’t sleep well and I am so busy I don’t allote time for myself. This includes time for inner quietness…meditation / praying . When you feel pain coming on – lay down in quiet dark cool place and calm down your breathing and your heart rate …with practice you can achieve this easily.

also distract yourself with activities that will bring joy like spending time with kids/ grandkids/friends but don’t overdue. Other activities which can bring joy and relaxation are painting/coloring /listening to music.  Don’t forget to hydrate, eat a balanced meal and exercise at least 3 times a week – this goes a long way in decreasing and warding off pain. Each time I deviate from my routine which includes above pain starts to pop up! Something to think about I your daily life – what triggers your pain?  Stress? Lack of sleep?

Go ahead and prioritize time for your yourself – self love goes – includes spiritual well being ( join a bible group) along way towards maintaining health and happiness.

 

Sources:

  1. Turk, D.C.; Okifuji, A. (2001). “Pain terms and taxonomies”. In Loeser, D.; Butler, S. H.; Chapman, J.J.; Turk, D. C. Bonica’s Management of Pain (3rd ed.). Lippincott Williams & Wilkins. pp. 18–25. ISBN 0-683-30462-3.
  2.  Harstall C, Ospina M. How Prevalent Is Chronic Pain? June 2003 volume XI issue2 Pain Clinical Updates, International Association for the Study of Pain. pages=1–4 [1]

3.  Broetz, et al., 2007; Bunting-Perry et al., 2010; Carr et al., 2003; Carroll et al., 2004; Ford, 1998; Loher, et al., 2002; Stacy et al., 2005; Wielinski et al., 2005

 

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, 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 awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's treatment

New Light On Parkinson’s! By Dr. De Leon

fcme&fc

“We are ALL a little Broken….

last time I checked Broken crayons still color the same.” Trent Shelton

I believe that we are all unique like the colors of my favorite coloring box of 152 Crayola Crayons; and even though Parkinson’s may strike each and everyone one of us differently we all share the same outer exterior like the rainbow of colors in the same crayon box! But let’s not forget that within that box are endless possibilities ….

all it requires is a bit of imagination.

By shedding light on Parkinson’s features motor and non-motor, I am hopping to bring a change in the way we are all perceived and treated.  Not as Broken ….

Rather as people who see, feel, think, smell, perceive, do, believe and experience things differently. Yet, no less useful, creative, bright, and uniquely gifted and colorful individuals striving to make our own mark in the world as any other.

As Gandhi would so eloquently quip,”Let us be the change we like to see in the world!”

Don’t be afraid to bend a little or brake a little with PD, you might just surprise yourself as I have …

So go ahead start living your life to the fullest and don’t be afraid to color outside the lines…

***********

For more information go to http://www.pdf.org

We will have follow up blog and questions to above feature article “What’s wrong with Me?” Family Circle Magazine (Sept. 2015)