Lately, I have found myself thinking about the areas of my life in which things do not fit neatly into a box. As Forrest Gump said; ‘Life is like a box of chocolates and you never know what …
Source: Grey Matters: By Maria De Leon
Gastroparesis in PD – Symptoms & Treatment Options: By Dr. De Leon
This post has been long overdue. All of us who have PD have experienced horrible feeling of fullness and simultaneous hunger at least once during their disease process. I am currently experiencing a severe situation with my stomach and intestines not functioning well. This is also the biggest culprit for which many of us suffer motor fluctuations, seemingly sudden exacerbations, worsening side effects, with increased irritability, fatigue, lethargy and dry itchy skin, sometimes even disturbances in sleep.
So what is gastroparesis?
This refers to an abnormally slow emptying of food from stomach to intestines. Typically it takes about 1 1/2 – 2 hrs. for food to empty out of stomach. As you might imagine the delay can lead to serious complications like fluctuations in blood sugars and bothersome symptoms as food accumulates creating a bezoar (small stony solid mass that is indigestible). This problem occurs commonly in people with PD as well as in those with autoimmune diseases like diabetes and thyroid disease. Other medications commonly used in PD can also cause and worsen this problem. Some of these medications include things like the old antidepressants (e.g. Elavil) and opiate pain medications both of which are commonly used in Parkinson’s patients.
What are the symptoms of poor motility and decreased emptying?
- bloating
- nausea
- vomiting
- feeling of ‘fullness’ after only a bite or two
- food regurgitation ( food coming up after eating)
- abdominal pain
My symptoms finally made me pay attention not long ago after having been indulging and livin’ la vida loca during my birthday month. Sometimes too much of a good thing is just that… In the past with traveling, I have experienced mild bouts of gastroparesis which have resolved within a week or two after returning home and getting back on a routine. However, this time my gi symptoms have continued to escalate making me feel miserable. The bloating after even the smallest amount of food intake had become so severe that I had had to go to a larger size in pants or wear a lot more stretchy clothes than I would prefer just to accommodate the bloating. Also the constant feeling of fullness after a single bite was becoming an ever present feeling at all meals with the feeling lasting longer each time. Yet, I felt like I was starving. furthermore, my body has been falsely tricked into believing I am going into starvation mode retaining more weight than usual. Making me feel as if I just entered a slippery slope of no return. Thus, as in times past, I began eliminating offending foods which are known to exacerbate my horrible indigestion and other gi problems.
But, my problem was not resolving in fact I was getting worse especially due to increase amount of levodopa (I have found Rytary to be even more constipating than other levodopa compounds).
I woke up as usual with no swelling, feeling ‘skinny.’ I showered, got dressed, and ate – two bites- within a half hour my stomach had bloated to a 9 month pregnant state making it difficult for me to breath and even bend over..as I struggled to put on my socks the unthinkable happened…my dress ripped at the seam!! I have never been so humiliated. Fortunately, I was at home.
Now I am on the first phase of gastroparesis treatment! It has been harder than I thought. Although, I am already beginning to feel better and husband is psyched about the new body buff body I will get again! (that is still a while away…) this is after I cleaned my closet of all the cloths that did not fit well.
First, How to diagnose?
- Have above symptoms- you will know because your medicine is suddenly not working, taking longer, definitively obvious when you take Stalevo or Comtan which discolors urine typically within an hour begins to take longer to excrete in urine.
- Need a gi specialist to perform physical exam
- Abdominal ultrasound- to rule out other problems like pancreatitis and gallbladder issues and gall stones.
- Barium swallow- watch you drink a think pink liquid containing barium- although they have different flavors now like berry- it still tastes nasty!
- Upper and sometimes lower endoscopy
- gastric manometer – a thin tube passed through mouth to stomach to measure stomach’s electrical activity
- electrogastrography- another way of measuring stomach’s activity that is not invasive – measured by placing electrodes on skin
Tests to confirm diagnosis:
- A gastric emptying scintigraphy test-this involves eating a small amount of radioactive substance- if more than 10% of your food is still in your stomach after 4 hours then you have this
- A smart pill- swallowing capsule with camera/ device to track how fast food travels through
Treatments:
First order of business is altering diet. this is very similar to that given to patients with inflammatory bowel disease (i.e. ulcerative colitis, chron’s). I know because I was on this diet as a med student when I got diagnosed with inflammatory disease. funny, I found it a lot easier back then. perhaps it was because I had no money so I was limited as what I could purchase or because I did not have 5 teenagers living with me constantly eating the things I love like ice-cream and pizza which I am not allowed to have.
- No – caffeine, chocolate, carbonated drinks, alcohol
- eating meals on time and early dinner, eat smaller portions more frequently (6 instead of 3).
- drink lots of water with meals
- eat lots of fruit
- protein ( all the meat, fish, and chicken)
- no raw vegetables (must be well cooked)
- no pasta
- no grains
- no dairy
- low fat foods ( there goes all my Mexican food!)
- no popcorn ( movies are just not the same with out it- I was dying first time having everyone eat around me so I had to get a couple of kernels smell them and lick salt of one just to curve temptation)
- liquefied nutrients
- no high fiber ( difficult to digest)
- low residue foods ( i.e. applesauce instead of apples with skin or peel skin better but not as digestible as sauce)
- feeding tube / (total parental nutrition)
- helps to have a dietician/nutritionist on your side
Medications:
There are no good meds.
- some of the medications used are Reglan – a no /no for PD
- compro (prochlorparazine) also no good for PD
- cisapride (propulsid,prepulsid)- no longer used in this country
- domperidone- need to get from Canada/ here instates there is special used granted for gi uses such as this- same medicine used for nausea with PD meds. (in women can interfere with menstrual cycle; alter thyroid and elevated bp)
- low dose erythromycin antibiotic several times a day for several weeks. ( the non-active antibiotic not as effective)
Other treatments:
- Botox A
- electrical stimulation ( Enterra therapy system)- works best for those with severe nausea and vomiting
- surgery ( e.g. bypass)
- acupuncture
With discipline and a little bit of luck most of us can get on track following a restricted diet- I am hoping to feel better soon.
this is important to address at onset as everything else because not only will you be miserable and be difficult to manage your PD but if you have other problems like diabetes, high blood pressure, cancer, thyroid disease – these things will put you at risk for worsening malnutrition, dehydration, weakened immune system, poor healing, rapid breathing, kidney failure, increase orthostatic hypotension and generalized weakness. Thus, seek prompt medical advice- do not delay.
Sources:
http://www.healthline.com/health/gastroparesis#Causes2
http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971
http://www.webmd.com/diabetes/tc/gastroparesis-topic-overview
Como ser una Mujer que no se Rinde Frente a la Enfermedad del Parkinson: Por Maria De Leon
“He peleado la buena batalla, he llegado a la meta- he mantenido la fe.” 2 Timoteo 4:7 Siento como que he estado alejados de ustedes mis estimadas amigas por largo tiempo. Aún más por los es…
Source: Como ser una Mujer que no se Rinde Frente a la Enfermedad del Parkinson: Por Maria De Leon
How to Become A Parkinson’s Woman Who Does NOT Quit!: By Maria De Leon
“I have fought the good fight, I have finished the race- I have kept the FAITH!” ~2 Timothy 4:7 I feel like I have been gone from you a long time and perhaps by the standards of today …
Source: How to Become A Parkinson’s Woman Who Does NOT Quit!: By Maria De Leon
Common Causes of Lower Body Parkinsonism: By Dr. De Leon
Once upon a time “arteriosclerotic (hardening of arteries) or vascular parkinsonism (VaP)” was also known as ‘lower body parkinsonism.’ The latter refers to a type of Parkinson’s in which patients present with what is now referred to gait ignition failure. This is what President George H. W. Bush was diagnosed with a few years ago. The reason I am writing about this because more often than not this diagnosis is missed or mis- diagnosed as Parkinson’s disease all too frequently which can lead to a great deal of frustration and disability.
This is characterized by broad based slow gait, reduced stride length, start hesitation, freezing and paratonia or gegenhalten -“form of hypertonia with an involuntary variable resistance during passive movement.”
Although, atherosclerotic disease CAN cause lower body PD this is by no means only etiology. This illness has no rigidity in the lower extremities. The disturbance is only evoked by gait itself. there are 3 subtypes:
- ignition (gait) apraxia (the discrepancy between the severity of gait impairment and the ability to perform other leg movements normally {e.g. cycling in the air while sitting}.
- equilibrium apraxia
- mixed gait apraxia
Although, one of the main causes of lower body PD is vascular disease such as strokes it is not the only cause. When lower body parkinsonism is caused by strokes in the frontal lobes then we can say its vascular PD (VaP). We also see abnormalities in the MRI revealing vascular disease. The Dat scan is normal for lower body PD caused by vascular causes as well as by NPH.
Another common cause is normal pressure hydrocephalus (NPH). The issue of correct classification has been complicated by the fact that patients with both vascular causes and NPH have similar amounts of freezing or start hesitation of gait. Interestingly enough although clinically we tend to distinguish them on grounds of presentation post mortem – there appears to be no difference in pathology between patients having VaP and NHP perhaps indicating similar disease. this is crucial because the treatment that works best for lower body PD caused by vascular disease is removal of spinal fluid which is the standard treatment for NPH. Vap DOES not respond to dopaminergic therapy. Although, there was a small study which suggested mild improvement with ropinorole. In my practice only treatment known to work is spinal fluid removal periodically. 
NPH is a communicating hydrocephalus (fluid in brain) usually caused by trauma or infection. This causes a triad of symptoms: NL intracranial pressure (<20mmHg)
- gait apraxia (freezing),ataxia
- urinary incontinence- urgency /frequency
- dementia (cognitive decline)
Diagnosed with clinical symptoms, Lumbar puncture and a cysternogram.
Prognosis is good if diagnosed early because the longer you wait to institute shunt to remove fluid – you will not be able to reverse urinary and especially cognitive dysfunction!
Most common causes of lower-body parkinsonism.
1. Normal pressure hydrocephalus
- Idiopathic
- Secondary (meningitis, head trauma)
2. Vascular parkinsonism
- Binswanger’s disease (subcortical ateriosclerotic encephalopathy)
- Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL)
- Dilation of perivascular spaces (also very common in CADASIL patients)
- Multiple lacunar infarcts
3. Frontal lobe lesions
- Tumors- primary and metastatic
- Ischemia
- Demyelination- multiple sclerosis
4. Progressive supranuclear palsy– will have abnormal Dat unlike the other 3.
One key factor to remember is that proprioceptive, visual, or auditory cues are highly effective in increasing stride length and cadence in Parkinson’s disease, but not so in NPH VaP which often get misdiagnosed as PD by non-experts.
NPH is a relatively rare diagnosis which is not often thought about but a cause of reversible treatable “parkinsonism.” Therefore, if you or a loved one having only lower body symptoms especially if unresponsive to dopa think NPH.
Sources:
http://www.nature.com/nrneurol/journal/v4/n1/full/ncpneuro0688.html
Vascular or “lower body parkinsonism”: rise and fall of a diagnosis-2011 Nov30:64(11-12):385-93. PubMed
Images brain MRI of patient suspected with VaP – from nature clinical practice neurology vol4 No1
Dissatisfied with Your DBS?
thanks Darcy…the biggest problem I encounter with DBS unsatisfaction aside from not being right candidate is poor programming. Best to get programmer that is also movement disorder and one with lots of experience. Like everything in life experience matters..
In the large number of Deep Brain Stimulation (DBS) surgeries performed—135,000 reported by Medtronic in 2015—dissatisfaction with this surgical treatment for Parkinson’s disease can sometimes occur. If you have DBS and you aren’t satisfied with it, try to put your worry aside so you can focus on fixing it!
Two clinics dedicated to DBS troubleshooting offer useful information on their websites:
University of Florida DBS Troubleshooting and DBS Failures Clinic
The University of Florida Center for Movement Disorder and Neurorestoration has a DBS Troubleshooting and DBS Failures Clinic. The clinic offers its services to patients from all over the United States and also to international patients– and to date has evaluated over 500 deep brain stimulation leads and has re-operated and re-programmed dozens of patients.
The clinic website explains step-by-step how a second opinion is provided, and lists selected UF Center publications on DBS failures and DBS troubleshooting. The clinic is co-directed by Michael S. Okun, and…
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Ways to Avoid Heat Stroke- by Dr. De Leon
As the summer days have begun to get longer and more people are flocking to the beach, spending more time in outdoor activities while the heat and temperature rises – so do the risk of having a heat stroke. This risk is even greater for the elderly and for those of us who have chronic illnesses like Parkinson’s disease due to autonomic dysfunction already present in most of us. Heat strokes remains one of the leading causes of preventable deaths and hospitalizations.
So, what is heat stroke ? according to the dictionary – this is an inability to regulate ones own body temperature when exposed to high temperatures resulting in very elevated fevers between 104-106 degrees Fahrenheit and unconsciousness and sometimes even death. This is not to be confused with heat exhaustion in which it reaches same tempetature but has cold, clammy drenching sweats. As opposed to hot, flushed, dry skin from absence of sweating seen in heat stroke victims. Both of these can occur in Parkinson’s patients causing not only severe discomfort but may result in passing out with subsequent trauma to head and body and possible hospitalizations.
People with heat strokes can also experience throbbing headaches, dizziness, nausea, vomiting, rapid shallow breathing, increased heart rate which maybe strong or weak, and muscle cramps which can mimic symptoms or rather side effects of PD medications. Therefore, we must be extra cautious and be supervigilante particularly if these occur in context of being exposed to high temperatures or prolonged time out in the sun. especially since it seems that this summer is already proving to be a VERY hot one in places like Yuma already 120 degrees, in Texas in the 100’s in some places and summer officially began only 2 days ago!
The risk is increased with increasing age and PD stage. Also if you take medications like amantadine and other anticholinergics, or diuretics you are more likely to get dehydrated quicker and experience heat exhaustion first.
at the first sign of heat exhaustion make sure you : important to remember that onset to presentation could take days!!
-move to a cooler shaded / air-conditioned area
- begin hydrating with water and things like Gatorade and other sports drinks-avoid soft drinks and drinks which contain alcohol or caffeine. drink twice as much fluids as you would normally!
- use cooling blankets and fans/ cooling rags/ cooling vests/ cooling mist
- take cold showers or baths ( sometimes with ice)
- make sure you exercise early in the morning or indoors (indoor pool, walking, stationary bikes, tai-chi, boxing)
- wear sun protective clothing
- don’t stay out in the sun for long time and especially if you are on medicines that make you more sensitive to heat like Azilect (Mao inhibitors)
- don’t go out in heat if you are already experiencing excessive sweating
- make sure you eat foods rich in potassium like avocados, bananas and strawberries.
if you are already experiencing severe sweating from medications look at my other blog for treatments and causes; but make sure you try to get under control before summer really takes off.
tips: if your urine is getting dark – is a sign of being in trouble go to the doctor/ER because is a sign that muscle is beginning to break down….
if you don’t know how much fluid to drink after exercise- weight yourself before and after and the loss will tell you how much intake you need.
apply ice or cooling blankets to groin, arm pits, neck and back.
use cooling damp blankets for entire body.
if symptoms persist GO TO ER immediately!
stay cool every body and enjoy your SUMMER!
copyright @2017
All rights reserved- Maria De Leon MD
Cual fué la causa del Parkinson en el Campeón de Boxeo? Dra. De León
Como dice el refrán “a veces ya no es lo duro sino lo tupido…” lo que conduce a el Parkinson llamado por nombre Parkinson Pugilística (a causa del boxeo)
Dejen me les digo la verdad del asunto.
Una estoy más convencida después de leer un reportaje más bien un comentario que se hizo acerca de Mohammed Ali en la revista de neurología hace varios años atrás que describieron al rey del boxeo como alguien que presentaba movimientos de “danza” los cuales pueden ser tomados como muestra de discenesias. Si esto es verdad que ocurrió así entonces no cabe duda que el padecía de Parkinson de edad temprana.
Entonces como es que nosotros los neurólogos diferenciamos entre Parkinson idiopático (no sabemos la causa) vs. Parkinson causado por trauma a la cabeza vs. parkinsonismo causado por múltiples golpes como los que contraen los boxeadores altos que se les diagnostica Parkinson pugilista.
En primer lugar la diferencia más grande entre aquellos que padecen de Parkinson idiopático y aquellos causados por razones de trauma en la cabeza son la historia de trauma, la evidencia de trauma en el cerebro por medio del MRI de la cabeza, y el desarrollo de la enfermedad aunque puedan parecer similares el Parkinson idiopático avanza por medio de años y lo más importante es que con el transcurrir de los años y el constante requerimiento de la dopamina para funcionar da camino a las discenesias – la cual prueba irrevocablemente que era Parkinson.
En segundo lugar, hay una gran diferencia entre parkinsonismo causado por un solo evento de trauma y aquel causado por perpetuo trauma a la misma. El riesgo de contraer Parkinson a causa de un solo golpe es 1-1.5% de la población. Y este tiene que ser severo que resulte en pérdida de conciencia y el Parkinson empieza dentro de una a dos semanas del evento.
El otro el cual es más común y el cual se ha especulado por años ser la causa de la enfermedad del recientemente fallecido estrella de boxeo. Este es el que se le conoce por nombre (Pugilística) Parkinson. Los repetidos golpes a la cabeza causan que las conexiones entre las neuronas se desplieguen y vayan dañando poco a poco resultando en síntomas del Parkinson. Porque cada vez que uno contrae un golpe severo el riesgo de contraer el Parkinson va en aumento exponencialmente de 1.5 a 36% con el segundo etc. así sucesívamente. Así que claro todos nosotros los neurólogos especulábamos esto ser la causa…pero como no tengo el MRI de su cabeza, ni el historial completo no puedo más que dar mi opinión. Las dos últimas causas tienen un lapso más lento y por lo general tienen otros síntomas no vistos en aquellos que padecen del Parkinson como ataxia de habla y de caminata (caminan y hablan como borrachos). Tienen otro tipo de rigidez, tienen problemas de cognición similares a los de alzhéimer, pueden tener convulsiones, y otro tipo de movimiento anormales como mioclono (myoclonus- contracción irregular de los músculos) en los pies, y otros signos de anormalidades en las trayectorias llamadas moto-neuronas superiors “upper motor neuron” por que se dan origen en el cerebro o en la médula oblonga (brainstem) las cuales resultan también en el reflejo de Babinski en el cual el dedo gordo del pie se levanta y los otros dedos se habren como abanico cuando el doctor les pasa algo duro por la planta del pie.
Pero aquí lo más importante que debemos recordar es que los golpes si contibuyen a el aumento de riego de la enfermedad. entre más severo mas riesgo y entre más golpes peor el riesgo. Por la parte del campeón lo que debemos recordar no es la causa de su enfermedad sino que el vivio más allá de su capacidad exterior dejandonos un ejemplo valioso de nunca rendirnos ni darnos por vencidos. ocupandonos siempre por los demas antes que nosotros mismos.
Parkinson’s & Hearing Loss: Fact or Fiction- By Dr. De Leon
“Blindness cuts us off from things, but deafness cuts us off from people.” Helen Keller
Since I came back from Hawaii, I feel like this is me above constantly asking people to speak into the stethoscope, ear trumpet, or speak into my good ear because my hearing has not been quite the same. I have been told by my family that I am speaking louder and yelling more than my usual customary “Mexican-ess” calls for. When a Mexican tells another Mexican that they are too loud than you know you are definitely in trouble! Plus, everyone in my family including me have found it terribly annoying having to ask for someone to repeat what they said and always seem to be two steps behind on the conversation. Over the last few years I have noticed that I have more trouble hearing and understanding what people are saying in crowed, noisy rooms as well as on the phone particularly with my right ear. But, things in the communication department seem to have gone south fairly quickly for no reasonable explanation.
Initially, since I came back from trip with a severe case of the flu, followed by pneumonia and then severe ear infections, causing the worst case of vertigo I have ever had in my life, I paid not much attention to it and assumed the problem was related to infections. However, once symptoms cleared I still have continued to experience this problem.
So I almost don’t like speaking on phone if a lot of ambience noise involved. Otherwise, I feel as if I were just guessing leading to some pretty funny and embarrassing assumptions and scenarios.
Of course being a doctor, I must research everything and find the root of the problem. The only new medication, I have added to my regimen is Rytary, thus I went in search of possible side effects of this medication causing hearing deficits. What I found out is that in fact one of the side effects of Rytary is ear fluid build up which along with my history of chronic ear infections surely seemed like a plausible explanation for my acute and sudden worsening hearing. nevertheless, I went to have an audiology exam. Ears were intact with normal pressure and normal conduction but its the nerve that is not processing information properly- almost a delayed reaction. I am on no other medication which could harm the cochlear- aspirin use can do this on chronic basis but I take a baby aspirin about 2 times a week and this would produce bilateral problems. Doubt I have a brain tumor- aka a Schwannoma of the eight nerve- I had normal MRI a year ago in so far as tumors but one never knows so will repeat just for peace of mind given my family history.
In the meantime, I began poring over articles on the subject and much to much chagrin I discovered several studies staying that Parkinson’s patients do in deed have hearing loss believed to be caused by the disease itself. Just like me some say not so much in loss of sound but rather slow processing and comprehension of spoken word…there seems to be a delayed reaction. now that I am aware of this when I don’t capture what is being said is I stop for a second and like a slow printer or processor that has to type one word at a time the words come to me slowly ..and I say AHH. Of course this only works if its quiet and not in active conversation because to overwhelming to have to intensely focus on what is being said.
In a study at the University of Naples, Italy back in 2012, the researches discovered that out of 106/118 patients with Parkinson’s had age related hearing loss (presbycusis) in one or both ears. This was statistically significant finding since the a study of equal healthy counterparts did not yield as high a figure. Another study in Taiwan revealed an increase in hearing loss of 1.5 times greater in those with Parkinson’s disease. Therefore it is speculated that a chemical specific to PD patients can cause noise-induced or age-related hearing loss or degeneration of various systems important in the integration of information from cochlear into Wernicke’s area could be another mayor problem. Although, the actual cause of impaired hearing loss in PD’s still remains to be seen it appears that at least in my experience with PD in my own life this is a very real and potentially devastating problem leading to what I spoke of before impairment in communication causing greater isolation in those who have Parkinson’s disease that only worsens as we age and also if have a history of essential tremors for it is well known that most if not all patients with ET will develop hearing loss. This is because movement disorder specialists and neuroscientists believe that the defect for tremors, hearing loss and longevity lie within the same gene.
I also believe that perhaps Hispanics who develop PD will be at an even higher risk for hearing loss since many in my observation have histories personally or in their family of essential tremors.
Once again the teacher has become the student in this ever evolving disease that seems to impact all aspects of our lives. Thus, we need to begin thinking about auditory loss as another non-motor symptom of the disease to which unfortunately I don’t have a solution for as of yet other than possible hearing aids. I don’t know if this will respond to increases of dopamine or not I suspect it might improve some since learning and understanding are higher cortical functions dependent on dopamine. So I will increase my medication and follow up with outcome. Hopefully, I won’t end up with my stethoscope or my daughter’s French horn wrapped around my head like princess Leia’s hair do…
In the meantime …. don’t be like these folks..
If hearing loss is one of your symptoms, ask your doctor for a referral to a hearing care professional for testing to determine the extent of your hearing loss and advice on treatment to restore as much of your hearing as possible. don’t forget to rule out medications and other organic causes- don’t just assume is PD.
Sources:
defeatparkinsons 