parkinson's disease, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Dyskinesias- 8 Tips to prevent & manage DYSKENESIAs: By Dr. De Leon

The things I have learned about dyskenesias in a nut shell.

They are not a sign that you are having fun because you look like you are dancing even if they occur at the beat of   your favorite tune.

yes, although most of the time you prefer over being off or stiff, you can’t wait to go to sleep so the movements  can stop.

although, they are a great form of exercise you wish you did not have to exercise so much to look so great!

dyskenesias are great for doing the twist and Mixing fruit salad but not for putting on make up or reading a favorite book.

Is there a solution to dyskenesias?


mind you is not an easy feat….

The first thing to remember iS that is much easier to prevent than to stop once they occur.

Key points women are more likely to develop dyskenesias than men.

altough, We as patients know our bodies best and know a lot about Parkinson’s disease we should not manage our own symptoms without the guidance of a professional (MDS).

One, because it is very hard to be objective when it comes to our own disease state.

Second, most of the time what we intuitively think should be the right thing to do is not always the BEST treatment plan for the long run of the disease…this is where experts like myself and other movement disorder specialists come in handy.

Third, as I have mentioned many times before, anyone can treat Parkinson’s in the first stages because it will respond to any and all PD medicines; however as disease advances the expertise in the art of treatment provided by a seasoned specialist is indespensible. This is where knowing how to treat rather than what to treat with becomes crucial.

Fourth, when I was in practice it was common to see my first stage PD patients 2-3 x a years unless they needed something because they were pretty autonomous; but as Parkinson’s progressed the frequency of the office visits increased as should your visits to your physicians. It was usually every month to every 6 weeks  evaluation in my late stage disease patients and 4-6 times a yeAr for middle stages.  Even though, I understand as a patient we all get tired of visiting and going to the doctor, unfortunately this is the type of commitment that is required to keep DYSKENESIAs at bay and control before they become intrusive by adding medications like amantadine, Keppra, zonegran, comtan or Tasmar (or STALEVO which I love because it has so many doses ranging from 50 mg to 225mg) and adding long term release intermixed with short term and intermediate release.  Also things like DBS and other surgeries like pallidotomies; apomorphine and even Botox injections if have focal DYSKENESIAs or dystonias are great treatment options with proven benefit and low risk in the right hands of experienced physicians.

Fifth, although certain autonomy is allowed for patients it needs to be evaluated frequently because invariably most patients will overdose creating more side effects and DYSKENESIAs. More is not always better…we feel bad can’t walk, move, talk, swallow so we not only increase our doses but start increasing frequency sure way to develop DYSKENESIAs faster ! The key is to mix dopa agonists( especially NEUPRO because the continuous release will potentials the effect of levodopa giving it a more continous star in your body without having so many peaks and valleys), MAO inhibitors along with dopamine in various forms…don’t be afraid of taking several types of medications this is how you get the most benefit without having to take such large doses of levodopa and keep number of times you take medications down ( e.g. 4-5 x a day instead of every 2 hours).  We have so many new choices now.

Sixth, remember that dopamine agonists and amantadine effect usually work for several years in the range of 5-7 years after which their effect starts to wane but after a small period of rest ( 1-2 years off these medications) they can be again reintroduced having again a positive effect.

Seventh, It is recommended that around the time you enter the middle stages of disease (3-4th stages) every patient should start keeping a calendar of every medication taken. This needs to include time of intake of each medicine along with name, how long it takes to kick in ( what do you notice when it kicks in), how long each medication last,  can you tell when it wears off- what do you notice and the does medicine wear off suddenly. your doctors usually have copies of these calanders in their office, you can get from them or get from the website Or create your own. For instance, I can tell you that my azilect helps my pain & walking, my Neupro helps my vision and my STALEVO helps my brain feel “on.”

Eight, most important advice to prevent and stop these intrusive involuntary movements which make our lives miserable is early DBS before they start…if you Wait till after they start it will take longer to find right setting. when DBS setting is adjusted in brain It is imperative to adjust medications at the same time  for maximum result so need to find a doctor who can program in office and has extensive experience – this is one of those art things where experience truly dictate outcome. Patients with DYSKENESIAs by definition have already more advanced disease taking more medications therefore adjustments have to go even slower for maximum results which can be extremely frustrating. so find someone close by because will need a lot of visits; if not able to travel frequently to maximize benefit then should consider doing pallidotomies instead.

Parkinson’s disease is an extremely complex disease encompassing multiple body systems outside of the brain thus in order to have the best quality of life is to have disease managed by a movement disorder specialist who serves as the conductor in a well orchestrated performance involving many other subspecialties (including Gi, neurosurgeons, dermatologists. Urologist,internist, anesthesiologist, ENT, and ST, PT, and OT).  Together they can allow you to dance in whatever fashion you desire without the presence of DYSKENESIAs.

parkinson's disease, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

I have Dystonia! Now, what? : by Dr. De Leon

First, dystonia which falls under the umbrella of the movement disorders diseases implies an abnormal contraction of the muscles that causes involuntary twisting resulting in abnormal postures. It can be painful. Some common known dystonia are writer’s cramp-a type of dystonia that occurs only while writing affecting the muscles of the hand and forearm.

Dystonia is a symptom like a cough, or nausea. We need to know the cause. It can be a primary disease such as dopa responsive dystonia (DRD),  or dystonia muscularoum deformans (also known as Openheimer’s syndrome or torsion dystonia-DYTI ).

All primary dystonias are caused by some type of genetic abnormality. Dystonia can also be  part of another neurological disease; this type is  known as secondary dystonia.

Secondary dystonia or acquired causes:

  • Strokes (CVA’s)
  • Multiple Sclerosis
  • brain tumors
  • seizures
  • carbon monoxide poisoning
  • infection
  • oxygen deprivation- e.g. strokes
  • brain trauma
  • birth injury ( some people think cerebral palsy fall into this category)
  • Huntington’s
  • heavy metal poisoning
  • Wilson’s
  • drug interactions ( side effects) usually to antipsychotics after long use
  • drug use,
  • Parkinson’s.

It can affect any muscle of the body.  The dystonia can be:

  • Focal – affect one specific body part e.g. writer’s cramp, cramp with piano playing.
  • Generalized- all or most body parts
  • Multifocal- several unrelated body parts
  • Segmental –adjacent body parts like torticollis.
  • hemidystonia –arm and leg on the same side In Parkinson’s disease it is usually more commonly seen as a side effect of levodopa  when wearing off and can look like any of the above.

Typically Parkinson’s patients experience focal or hemidystonia. In YOPD it is not uncommon to see dystonia as one of the presenting symptoms again it can be focal, hemidystonia, and occasionally segmental. Unfortunately sometimes dystonia can remain the most prominent feature for years before other motor pd symptoms to develop. But, during this time persons with YOPD should have other non-motor symptoms developing. I have seen patients treated with focal dystonia for 6 years only to see signs of PD in the 7th year. With time DRD develops pd symptoms sometimes confounding picture for those not so well versed in the field erroneously labeling Parkinson’s when in fact is primary dystonia with secondary parkinsonism. The treatment unfortunately is the same but the prognosis is quite different. One being static or mildly progressive while the other one will have a progressive neurodegenerative course (PD). DRD can be controlled with large doses of dopamine while the other initially maybe controlled but will eventually lead to dyskenesias. Independent of whether dystonia is primary or secondary’s the treatment armamentarium is essentially the same. The basic principle is finding an underlying treatable cause such can reverse the symptoms if not is back to symptomatic control. In the case of Parkinson’s is really as much an art as it is a science in being able to adjust the Parkinson’s medications. This is where open communication between a doctor and patient come in handy to pinpoint exactly if the dystonia is being caused by wearing off, end of dose, or a biphasic response!

Symptoms of dystonia:

  • A “dragging leg”
  • Cramping of the foot
  • Involuntary pulling of the neck- a.k.a. spasmodic torticollis or cervical dystonia
  • Uncontrollable blinking a.k.a. blepharospasm
  • Speech difficulties- a.k.a. spasmodic dysphonia – 2 types adductor & abductor. Adductor is by far the most common and responds best to botox injections (no anesthesia needed only feel a prick through front of neck). Adductor dysphonia voice sounds strangled or strained because the vocal cords are so stiff it is difficult to produce sounds this is what it is typically seen with PD; but normal while laughing, crying or shouting. In abductor dysphonia, the voice involuntarily sounds like a whisper when attempting to talk. Botox is also used for this- more complicated has to be given into actual vocal cord muscles.

All dystonias, as all  other movement disorders, get worst during stress and fatigue!

Treatments for dystonia:

  • Medications oral: baclofen, Valium, xanax, klonopin, neurontin, dantrolene, levodopa,tetrabenazine
  • Medications injectable: botox (there are several types including disport), baclofen pump; e.g. botox works great for spasmodic dysphonia
  • Surgeries: DBS, thallomotomies, pallidotomies, ramisectomy and rhizotomies (spinal nerves are cut in order to relieve pain), pheripheral deenervation (cutting nerves in pheripheal nervous system), myectomies (taking out a portion of muscle), myotomy (dissecting the muscles).
  • Ancillary treatments: PT, OT, ST, adaptive equipment-e.g. orthotics, leg braces
  • Sensory tricks: stimulation applied to affected muscles or muscles nearby people can reduce and control their own contractions.   This man is touching back of his neck as a sensory trick to keep from going back.
  • Non-medical treatments: massage, acupuncture, behavioral therapy (biofeedback), yoga.

In the hands of a skilled and knowledgeable specialist all dystonias should be able to be controlled providing the person living with this condition, whether it is a symptom of something else or a syndrome itself, a good quality of life since we now have so many treatment options. However, most dystonias unless related to medication side effects or are focal in nature (except spasmodic dysphonia which require ENT specialist to do injections) will require a team approach (ancillary services, MDs, neurosurgeon, pain specialist, orthopedist, massage therapist) and a combination of therapeutic modalities to achieve the best possible outcome. These treatments should be accompanied along a life style in which sleep is given priority and methods of stress relief are integrated into everyday life to maximize benefit.

In order to properly diagnose and decide proper treatment need to be seen by a movement disorder specialist (MDS). He or she will run blood test (which may include genetic testing), imaging test (CT/MRI Brain) along with a detail neurological exam to find the cause.

Sources:› … › Brain & Nervous System Health Center

Parkinsons disease, parkinsons health and beauty tips, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Bowel Incontinence Another Embarrassing Casualty of PD: By Dr. De Leon

We all know that since we got diagnosed with PD our bodies don’t work just like they use to; much to our chagrin it does not always respond like we would have it. Sometimes our voice leaves us in the middle of an important conversation with our best friend, other times it cause us to be embarrassed when our fine motor skills betray us and food goes flying across the room especially when we are trying to impress someone we like while on a date. Our handwriting has caused a commotion once or twice at the bank when we have gone to withdraw money because our signature is just not the same! We might have even caused a scene when we unexpectedly tripped on nothing but air. Yet, all of these may pale in comparison it seems when suddenly in the middle of a shopping spree, while driving or simply going about our usual business we lose control of our bowels without warning.

We sit there embarrassed, humiliated, wishing that the earth would suddenly open up and swallowed us whole. Of course it never does so we are left feeling impotent because we may see this as the ultimate sign of PD gaining victory over us.embarresed

What then? Do we cry, do we scream, or simply retrieve to hide under our covers and never come out?

Well, this would not be practical in deed. As foolish as we may feel at the time, I want to tell you that you are not alone in this feeling. So many of us since being diagnosed with Parkinson’s have done many silly things but the truth is that as the song says “we all play the fool sometimes,” with or without PD  sometimes we simply wake up on the wrong side of the bed! Instead of being hard on yourself or refusing to ever go out laugh about it- if you are alone although strangers may seem to stare you will NEVER see them again! Frankly, most people are too busy going about their usual lives to notice such mishaps unless you publicize it! So basically it is us who have to come to terms with this perceived sudden loss of dignity. If you are with friends or family they will understand and be supportive. Best thing to do in any embarrassing situation is laugh after you have composed yourself a bit; this will help ease the feeling of vulnerability!

Okay, now for serious part:

After you have had a big laugh and chucked it up to yet another casualty of PD …then you may wonder why do PD Patients have bowel incontinence? Will it happen to you again?   

First, as we all know Parkinson’s disease affects all of gastric motility function causing it to slow down to nearly a crawl. Compound this effect with the fact that the large consumption of medications make us severely dehydrated and we also have decrease mobility because we are either too stiff, hurting, or off balance to get around with ease, the end result is severe constipation to the point at times of impaction.  Fecal Incontinence as this condition is known where you lose control of your bowels although more common in the elderly can happen to anyone 1/10 people sometimes in their lives. Having Parkinson’s is another risk factor because as I said we do not empty our bowels properly, especially at risk if have feeding tubes.

What can you do to prevent or becoming a hermit your only option?

Since constipation can be so severe or impaction stool can build up behind it and begin to “leak” out around obstruction leading to bowel incontinence. Watch for staining of your underwear, problems reaching toilet in time because of mobility, abdominal bloating or cramping.

  • Main thing to prevent is one make sure there are no other causes like inflammatory bowel disease, diabetes, nerve problems.
  • Then if the problem is getting to bathroom in time have doctor modify your medication regimen to improve mobility.
  • Also, make sure that you maintain a good bowel regimen- includes going to the bathroom daily- using stool if needed and medications both over the counter as well as prescriptions to keep regularity and avoid constipation.
  • Change diet- no caffeine like in coffee or tea; no alcohol; if necessary and get a dietary consult as well as Gi consult.
  • avoid taking Mira lax, fiber tabs or other fiber supplements.
  • Wear depends go to has garments for both men and women that feel and look more natural like underwear.
  • wear the latest “butterfly” pads
  • If all this fails you can have medications to harden stool. Also try behavioral modification (biofeedback).
  • If still having problems there are surgical procedures to tighten muscles around sphincter as well as surgical implant with neuromodulator produced by Medtronic’s called InterStim (sacral Nerve stimulation).

As you can see this can happen to any of us even if  we don’t have PD don’t sweat the small stuff – there a lot of things to help if this is a problem but keep moving forward and not letting PD define who you are!


falls in parkinsons, parkinson's disease, parkinsons health and beauty tips, parkinsons symptoms, parkinsons treatments

I am Dizzy! Is It My Parkinson’s? : By Dr. De Leon


First, in order for you to get the proper treatment you must be able to communicate to your doctor exactly what you are feeling.

The way you do this is by learning the right terminology or the doctor “lingo” if you will.

Some people say they are ‘dizzy’ to mean they have ‘vertigo,’ they are ‘unsteady’ in their feet, have a ‘swimming’ sensation in their head, are ‘off-balanced’ when they walk, confused, or they feel ‘lightheaded.’ All these words imply different things for us neurologists. Some can be life threatening while others can be more of a nuisance. Therefore, depending on the cause the treatment will be different.

Meaning of words to doctors/neurologists:

Vertigo– spinning or whirling sensation

Lightheaded – implies feeling of sinking or near fainting or passing out.

Dizziness –  synonymous with unsteadiness of gait.

Off-balance– usually implies problem with equilibrium like being drunk and falling.

Confusion- means disorientation/ inability to get one’s bearings.

Swimming sensation – sometimes implies fogginess of thought or more commonly is the catch word for BPPV (Benign Paroxysmal Positional Vertigo).

Treatments:  シャツ女性 B 病気 目眩

If you are having Vertigo and it comes on suddenly and you are nauseated can walk or sit and throwing up could be ear related or could be in your brain but if you have weakness, numbness, in -coordination in arms, slurring of speech, double vision then is most likely a stroke. If have latter go to ER ASAP. The former call ENT ASAP or go to ER ASAP. This is not caused by PD.

Lightheadedness- this is the most common side effect after nausea with dopamine and dopamine agonists because they tend to lower blood pressure. So you feel like you are going to pass out especially when you’re standing or arise from sitting or lying down quickly. This usually occurs within the time the medicine kicks in usually within 30 minutes to 1 ½.  One way to prevent this is to take medication on a full stomach- high protein. If taking Sinemet or one of its derivatives take lodosyn with it to decrease this side effect. Do not take at the same time as other medications with similar side effects or at same time as Blood pressure pills. Wait at least another. Your doctor can also prescribe medications like midrodine, florinef, salt tablets, or Northera. They may also recommend several maneuvers like wearing compression stockings, avoiding hot showers, drinking cold water during an episode and arising slowly from sitting or lying.

Off-balance- also common in Parkinson’s due to Parkinson’s itself but can be aggravated by B12 deficiency which causes loss of sensation in feet; if malnutrition exists other  neuropathies can occur from other vitamin deficiencies such as thiamine or vitamin B1. Plus don’t forget that PD does not exist in a vacuum so as we age we may develop neuropathies due to diabetes. Gait can also worsen due to poor eye sight and hearing. Regular check- ups with your primary care doctor as well as with ophthalmologists should help prevent these problems but more than anything doing regular exercises and physical and occupational therapy will prevent the great majority of these problems.


Confusion or fogginess can and is also a frequent PD symptom both as a side effect of medication as well as non-motor problem. Of course it can be cause by strokes if acute!!!

Medications can be adjusted to improve this.

Always call doctor ASAP if this occurs or go to the ER.

I hope this helps to guide you when having a ‘dizzy spell’ and think of when is occurring, onset, duration, activity bringing it on, daily? Is it sporadic? Is it positional? Are there other symptoms accompanying dizziness?

Not only will your doctor be impressed at your knowledge and for been able to advocate for yourself; but will be able to make the right diagnosis and recommendations a lot quicker so that you can get to feeling much better faster!

Parkinsons disease, parkinsons health and beauty tips, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Improving Quality of Voice in PD: By Dr. De Leon


We have all experienced a change in our voices as Parkinson’s has taken over our lives. It can be extremely frustrating for both the person with Pd as well as the caregiver to constantly be asking to reiterate what he or she said. This is because family thinks we either mumble or slur or words when we speak which only escalates the frustration when trying to have a conversation especially in noisy places.

First you must remember that your voice is produced by muscles in your throat which are also getting stiff and slow so you must take care of them.

Ways to Care for your Voice:

1) Do not strain them by shouting over loud noise when you speak. I often get severely hyphophonic (soft voice), aphonic (no voice) even dysphonic (difficulty producing sounds) if I have to force myself to speak very loud for a long time in a loud environment.

2) Rest your voice when is tired and cover your throat with a scarf, the warmth is not only soothing but heals it when has been over worked.

3) Make sure you don’t have heartburn because this can injure your vocal cords.

4) Drink plenty of fluids especially water.

5) Avoid caffeine and alcoholic beverages.

6) I recommend that everyone should be evaluated by a speech therapist and undergo the LSVT (Lee Silverman Voice Treatment) program with a certified professional to improve output and projection of voice.

Another great exercise for maintaining your voice is singing! Join a choir or sing at home or join a PD singing group some of which are beginning to pop up around the country like the “Spokane Tremble Clefs.” people singing

But don’t strain your vocal cords; gently reach for both high and low notes while singing the lyrics as clear as you can. I guarantee that not only will your voice improve but your spirit will soar.

***One interesting scenario***

My daughter had a wonderful end of year music program in which I was so very proud to see her blossom. She put many hours of preparation at home singing. She was so excited that on one occasion she asked me to join in on the more popular songs. As we started to sing I quickly experienced spasmodic dysphonia. Although this was pretty funny to my daughter, we continued to sing. Then I switched to singing in Spanish since they were also popular in my native tongue what I discovered was something fascinating. I could sing perfectly well in Spanish (with a beautiful voice); yet I could no longer hold a tune in English. I knew that since my diagnosis with PD my voice had altered. Never had I noticed that it was only in my second language.

As a neurologist, I had witnessed many times bilingual patients suffering strokes in the areas of speech losing only their second language but never notice same type of phenomena occurring in my PD patients. There is something to be said for learning more than one language and brain’s ability to compensate for loss. So keep on singing and learning …if you already speak other languages give your PD voice a rest by switching languages or better yet learn a new one!

Johnson, Marjorie L. National Parkinson’s Foundation- “Parkinson’s Disease Speech and Swallowing.”