Dystonia and parkinson's, dystonia treatments, parkinson's disease

Spasmodic Dysphonia Diagnosis & Treatments : By Dr. De Leon

“The most precious things in speech are the pauses..” Ralph Waldo Emerson

Since September is National Dystonia Awareness Month, I thought I would talk about a symptom that affects many in our population known as spasmodic dysphonia (SD) This is a rare disorder of unknown etiology; it is a type of dystonia that affects the laryngeal muscles causing involuntary sustained muscle contraction of the vocal cords. There is a co –morbidity between SD and ET of 25% more than seen in normal population. People may have both essential tremors (ET) affecting vocal cords as well as dysphonia of laryngeal muscles. Furthermore, patients who exhibit this type of dystonia have a 7% risk of developing dystonia in another part of the body.

In order to obtain proper treatment one must first get correct diagnosis.

The person that diagnosis this condition can be an ENT physician as well as a neurologists. However, because there is a higher incidence of having other dystonia’s and /or tremors one usually also requires follow up and treatment by an MDS. It is important to note that SD, a type of focal dystonia, can be its own disease or be a symptom of another neurological disorders like generalized dystonia, ET, Parkinson’s and Maggie’s syndrome.

Since this s a voice disorder it causes impediments in speech and communication which can be both embarrassing and also socially devastating as when the dysphonia is so severe there is no perceptible voice. This lack or inability for one person to communicate with another verbally can lead to depression and social isolation. Hence, it is imperative to get diagnosed properly and seek right treatment as to not experience social stigma.

Spasmodic dysphonia is a lifelong condition commonly affecting women especially between the ages of 30-50. This disorder can lead to voice breaking, being tight or strained. This type of dystonia can interfere with word elocution to complete detriment and speech impediment if no audible sounds are made.

Researchers believe it may be due to problems in the basal ganglia hence associated with other movement disorders. However, it can start after a cold, flu, injury to voice box, trauma/surgery, and even stress.

There are two common types:

Adductor spasmodic dysphonia– this is the MOST COMMON type causing sudden involuntary spasms triggering the vocal cords to stiffen and slam shut. The spasms interfere with the vocal cord vibration hence diminishing the quality of sound. Speech sounds are strained and effortful. Of note; these do not occur when singing, laughing, speaking at high pitch, or speaking with breathing in.

Abductor spasmodic dysphonia-this type causes sudden spasm causing vocal cords to open and since vibrations cannot take place when vocal cords are apart sound is difficult. Speech is very weak, breathy, whispery, and quiet. Of Note: these do not occur with laughing or singing.

So how do you treat-

Botox is the mainstay of treatment although it is not a cure and works best for adductor dysphonia. Having a team of specialist as I mentioned above as well as a speech pathologists is of great benefit. However, voice therapy per say has limited use unless the dysphonia is due to a hyperfunctional behavior. There are also a couple of surgeries that have been investigated and still being evaluated for their efficacy. These are called thyroplasty (which essentially require remodeling of the thyroid cartilage shape to relax and move the vocal cords somewhat laterally (to the side).

However, if you are experiencing spasms and pain or difficulty singing, or at high pitch need to be evaluated by ENT and make sure there are no masses or inflammation caused by reflux. Sometimes asthma can cause whispery speech because of inability to take in air. May also require visit to pulmonologist.

As with everything else make note of when symptoms occur, what triggers it, what makes it better, how long they last, relation to food intake (some people are extremely sensitive to pumpkin, and pumpkin seeds, as well as peanuts), symptom relation to dopamine intake, if have PD.

Sometimes drinking warm teas (ginger with honey and lemon) helps ease and improve symptoms particularly if inflammation caused by irritation of vocal cords or virus. [This is my favorite remedy! works great plus ginger is good for digestive system.]

Recommendations to make speech better:

  • Avoid noisy environments- damages vocal cords – (also means talk only within your capabilities)- I have to remember this one because I always lose my voice in a crowded room.
  • Stay hydrated- especially if doing public speaking- I have to drink twice as much water when I speak!
  • Avoid irritants like alcohol, tobacco, substances that dry the throat.
  • Avoid screaming
  • Avoid clearing throat forcibly
  • Sleep well.
  • Treat TMJ

For more information: https://www.dysphonia.org – National Spasmodic Dysphonia Association

Sources:  http://www.hopkinsmedicine.org/healthlibrary/conditions/otolaryngology/spasmodic_dysphonia_85,P00468




all rights reserved- Maria De Leon


depression and suicide, Dystonia and parkinson's, dystonia treatments, parkinson's disease

Role of Marijuana in the Treatment of PD & Dystonia: Weeding through the Hype:By Dr. De Leon

AS consumption of recreational marijuana has skyrocketed over the last few years reaching 20 million people in the last month alone, the use in medicine has also begun to loosen in several states. But is this a good thing? or are we setting our selves for greater disappointment and worst problems down the road? My personal opinion is a resounding Yes!  Any drug that heightens the depressive factors and magnifies the potential for memory loss, sleep problems, slows reaction time, causes dizziness, paranoia, anxiety, and hallucinations in a disease that already has the potential to do this can’t be a good thing….

In fact, there is a 1% risk of serious psychiatric side effects including suicide…this is a risk I as a d PD doctor would not be willing to take on behalf of my patients who already have tendency to get depressed and become suicidal.

However, I know many a patient that swear by the medicinal effects of this drug. So, is this a placebo effect or is there something really to this?

The American Academy of Neurology just spent an inordinate amount of time reviewing this issue. The first statement they said was “weed may be easy to find but finding credible information about its role in medicine is becoming increasingly challenging.”

Part of the challenge in identifying its efficacy in neurological disease such as PD or dystonia is the number of preparations available on the market which include synthetic which mimic the effects of whole marijuana plants or its extracts. Furthermore, the plant can be consumed in a variety of ways which then can influence its chemical composition, dosing and efficacy. For instance smoking it can have a completely different effect than if it is chewed or eaten. Another challenge in determining its potential benefit is the lack of quality control for testing, labeling, etc.  Thus, like most holistic remedies which are outside of the FDA jurisdiction have no objective consistent information about its effects on patients upon which physicians can make reliable informed decisions to treat their patients.

Yet, despite all the limitations to their review the AAN report concluded that to date the use of smoked marijuana is uncertain but has shown to worsen posture and balance. Oral cannabinoid drugs were not considered effective in the treatment of levodopa induced dyskinesias.

An open label observational study revealed improvement in pain and sleep in PD however because it was open there is potential for a lot of bias and more research is needed in this area. another study done in Israel revealed improvement in pain and tremors of PD patients however tremors in MS patients were not improved …

As far as cervical dystonia is concerned in a study partially-funded by DMRF, the results were inconclusive necessitating further studies to confirm or deny efficacy. But of concern to me is the fact that dystonia when hereditary and familial starts at a young age and instituting a drug like marijuana at a young age before brain has completely developed could be more detrimental. According to a study looking at routine marijuana use in young people, those who smoked pot routinely had smaller brains, less white matter, lower IQ’s, more psychiatric problems, even caused poor driving. We need more extensive research into the effect of prolonged use in adults as well before we as physicians can sign off on it as a routine therapy, I believe.

Nevertheless if you are still interested- A word of caution: when considering new treatments not approved by FDA or non traditional treatments ALWAYS consider the SOURCE CAREFULLY when pondering over anecdotal information especially on the internet!!! the internet can be a cesspool of unverifiable accounts of all sorts of treatments including marijuana which could potentially cause a great deal of harm if not discussed with the physician first.

But, I know that this will not deter those who are determine to find an alternative treatment to their disease – if you are thinking about it before you do, you should follow these simple guidelines for your own safety:

  • Always initiate the subject of outside non-traditional treatment interests as well as complementary treatment options.
  • Openly discuss with your physician the risks, benefits, safety issues, possible interactions, concerns you and physician might have.
  • only after an open discussion will your physician be able to make full informed decisions about your disease and make strategies to avoid unsafe conditions and interactions.


Sources: “Weeding through the Hype :American Academy of neurology Reviews Use of Medical Marijuana:”(Winter 2015) Dystonia Dialogue 20-21.

dbs treatment for tremors, dystonia treatments, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's tratamientos, parkinson's treatments

I have A Tremor: Does it mean I Have Parkinson’s Disease ? By Dr. De Leon

“Shaking is great. Shaking is one of the oldest practices known to man…connecting the earth and restoring energy through Out…” Jerome Flynn

Is my tremor a sign of PD? This is always the million dollar question on everyone’s mind when they go see a Movement disorder specialist for the first time. Although, this is the one tremor everyone ruminates on it is not the most common of the movement disorders nor the only tremor.

There are many other tremors associated with other neurological and medical conditions w hich can present challenges for daily living for those experiencing tremors independent of etiology.

Therefore, I want to spend a little bit of time talking about some of these and in particular the more common type of tremor also known as “essential tremor” since this seems to be one of the main reasons for which people are referred to a neurologist.   Many of these usually  have been misdiagnosed as having PD . It is estimated that about 20% of people with ET are labeled as having Parkinson’s according to a study by Henderson et al.(1995)

Essential tremor (ET) unlike Parkinson’s tremor is a postural, action tremor that progress slowly over many years. It is significantly more common than rest tremor of PD. In 60% of those with ET have an autosomal dominant trait. This disease can start early in life but it is much more common in older individuals due to increase in frequency due to age. There is an anticipatory mechanism with every generation making the tremors present sooner or at younger age than parents or grandparents. People with essential tremor can become severely disabled especially socially although diseases progresses very slow.  Individual’s with ET usually are hard of hearing and have bilateral tremors and can have great difficulty with activities of daily living. They are also at higher risk for developing Parkinson’s disease later in life. Sometimes they also have accompanying head tremors (mostly nodding -yes), voice tremors and at times orthostatic tremors –which I will discuss later.

The test you can do at home is to draw a spiral first with one hand then the other and watch for cauliflower like pattern. also draw a straight line between two other lines in a narrow space and if it looks like the line is an inching worm or squiggly line then you have action tremors. See picture: Also, even though handwriting is affected it is completely different than that of PD. It is shaky and messy. Furthermore, this type of tremor responds well to alcohol intake sometimes causing patients with severe tremors to become alcoholics. Subsequently, they too are misdiagnosed because physician’s erroneously assume they have tremors due to their drinking and not the other way around.  Besides alcohol which is not really recommended is treatment with Mysoline, Neurontin, Klonopin, Topamax, Beta-blockers -which I do not recommend in young people especially men due to tendency to cause severe depression besides lowering blood pressure.  Botox works well if focal, but DBS to thalamus is best treatment plan if symptoms are severe.

Parkinson’s (rest) tremor, the second most frequent type of tremor has a much slower amplitude as if sending a ‘Morse’ code. It is often described as -‘pill rolling’ tremor  present primarily at rest and starts unilaterally unlike ET.  PWP’s often feel like they have to hide their tremors by putting their hands in their pockets when walking or sitting on their hands if at rest as to not draw attention to themselves. Person’s with rest tremor can do normal action specific maneuvers such as  shaving or putting on mascara, without much if any interference. Occasionally, PD individuals can experience action tremors but these are different from above tremor in that the frequency is same as rest tremor. When asked to do above diagrams, PWP’s exhibit normal patterns- smooth and even! The handwriting is also affected as you know with PD but instead of messy is small and tight which usually gets smaller and tappers down as we write.Best treated with Anti-cholinergics – Artane & Amantadine and to a lesser extent dopamine replacement- Best results is DBS.

Another commonly seen tremor is Dystonic tremor. This tremor is said to be a forme fruste of ET. The best example of this is in patients who have cervical dystonia (i.e. spasmodic torticollis) who have a tendency to turn their head involuntarily in a particular direction say to the left and when they try to maintain their head and neck in a neutral position their head will shake involuntarily. One simple way to differentiate this tremor from essential tremors is a clear response and decline in tremor when a person uses antagonistic gestures. This means that the tremor improves through touch of the head or by lifting an arm etc. ET will not respond to antagonistic gestures!!Best treated with Klonopin and Botox.

Orthostatic tremors- Unique tremor syndrome more common in elderly and middle aged. This usually presents as a feeling of unsteadiness or dizziness while standing still. It typically does not interfere with gait unless is severe. the shaking or tremors are concentrated to the trunk and legs occasionally the arms. Best treated with Klonopin.

Cerebellar tremors- Unilateral Intention tremors but unlike essential tremors these patients have trouble with reaching target; not only do they shake as they get closer to target but when asked to do ‘finger to nose’ they overestimate or overshoot distance. Best treatment for this is Isoniazid, Tegretol, Mysoline.

Physiologic tremors. We all have very fine tremors of fingers especially pinky and can be visualized to naked eye. frequency is not as fast as those with ET- much more subtle and fine. yet they can increase under certain conditions such as stress, increased caffeine intake, abnormal metabolic disorders like diabetes and thyroid disease to name a few. Treatment finding root of problem. too much caffeine consumption is usually a big factor but these will present with other non- neurological medical problems.

Although, there are many other less frequent tremors these are the most common type. All tremors should be investigated and evaluated by a neurologist or MDS; so that the correct diagnosis and treatment can be initiated on a timely basis before there is interruption of function.

Sources: http://www.pdf.org



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

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

” I got bone spurs that jingle, jangle, jingle.” ~ unknown

Neck pain is an extremely common problem which afflicts all of us who suffer from Parkinson’s disease at one time or another. Also is a frequent source of disability for those who have cervical torticollis, and generalized dystonia independent of etiology.

The cause in both cases is increase axial rigidity (stiffness of any of the skeletal muscles that support the head or trunk). The neck joints are on a pivot which allow for sideways movements while the fact that the head rest on the atlas (named after Greek god “holding the weight of the world”  while sitting in second vertebra called the axis allows for front and back movements. …

From the moment we awake until we go to bed these muscles are constantly being pushed in all directions. It’s no wonder that as we age they begin to deteriorate. Now add a chronic neurodegenerative disease like Parkinson’s or dystonia independent of cause and we are bound to have pain as our head and neck muscles are trying hard to compensate for abnormal posturing all throughout the day.

Pain is believed to occur in 30-50% (can go up to 85% when all causes of pain are taken into account) of all patients with PD. Although extremely common, pain remains under-recognized as being one of the non- motor symptoms of PD.  The important thing to remember is that pain can appear any time in the course of the disease and even be the presenting symptoms of Parkinson’s, as it was for me.

Predisposing factors for pain in Parkinson’s are:

  • Agedys
  • Gender- more common in women
  • Duration of disease- worst as Parkinson’s disease advances due to increased rigidity of neck; but also to wearing “off” causing dystonia’s and motor fluctuations causing dyskinesia’s.

Pain is frequently under treated in the settings of both PD and dystonia but even more so in the Parkinson’s population, this is why I felt the need to talk about it today.

Although, pain in dystonia is more frequently accepted and recognized by MDS other physicians are not as attuned to this problem. Therefore, cervical pain in dystonia is still poorly managed and treated; even though 75% of patients with dystonia complain of some type of pain with 7/10 sufferers rate their pain moderate to severe. In fact when cervical dystonia sufferers were compared to PD patients in QOL (quality of life) they scored just as poorly. Yet, these patients scored lower in physical limitations than PD despite having higher physical function scores.

So, we have a whole population of over 1.5 million people living in pain and unable to get on with their lives and at times not even be able to do basic daily activities of living. This in my opinion is simply unacceptable and we have to be more proactive in our care advocating for better treatment. This entails going to the doctor as soon as pain begins and not wait so cause can be found and appropriate treatment instituted.

Poorly controlled PD & dystonia symptoms as well as over medication in PD patients is the number one cause for cervical pain in my experience often leading to severe spondylosis (narrowing of canal) and herniated discs of the neck.

Cervical Dystonia more common:xray of anterocollis

  • In women
  • In the US 30/100,000> Europe 1-2/100,000
  • Ethnicity- Jewish Ashkenazi

The key to successful treatment of neck pain in both groups is rapid diagnosis along with immediate, effective treatment to prevent acute pain from becoming chronic and affecting a person’s day to day living.

The reason for advocating rapid effective treatment is to prevent brain changes from setting in; with chronic pain the chemical composition of the brain alters as well as it remaps itself after experiencing prolonged pain.  The pain center in the brain moves and expands out of the usual sensory centers (parietal lobe) to encompass areas of memory, and emotion causing people to become irritable, quick-tempered, and impatient. This is because chronic pain increases the threshold of our ability to focus (trouble multi-tasking) on every day activities. This transformation  occurs because the brain’s area responsible for processing emotion begin to deteriorate at a faster pace than normal. We then expand so much energy trying to deal with pain that even a minor incident like being caught in traffic for 5 minutes can set us off!

This in turn can lead people to go in search of solitude manifesting as isolation creating a vicious cycle of depression, hopelessness and pain intensification.
Many years of experience have shown me that  the best way to combat pain is to bombard it with whatever necessary to halt the process before it becomes an insidious recurring problem.

This is the one exception to the rule of more is not always better!

Unlike other symptoms of PD where we don’t want to just keep adding medications, in pain particularly those caused by nervous system e.g. radicular pain has to be stopped before the spine and brain have a chance to rewire itself?

Cervical pain treatment:

  1. The first thing is prevention! it is always easier to prevent than try to fix a problem.
  2. Second, treat acute pain still easier to treat with less disturbance of a person’s QOL.
  3. Third, treat chronic pain appropriately to break cycle.

Effective interdisciplinary treatment is necessary to efficiently reduce pain in our lives. This includes :

  1. physical therapy
  2. occupational therapy
  3. acupuncture
  4. massage therapy
  5. Botox (dysport, myobloc)
  6. exercise
  7. balanced diet
  8. sleep regimen
  9. adjust dopamine medications
  10. Bio-feedback/counseling
  11. DBS
  12. Neck surgeries when necessary or as last resort-e.g. laminectomies
  13. prescription pain medications :
  • anti-seizure-e.g. Neurontin, Topamax, Tegretol, Keppra;
  • anti-depression-e.g. Elavil, Cymbalta, Effexor;
  • anti-anxiety-e.g. Klonopin;
  • muscle relaxants-e.g. baclofen, dantrolene, zanaflex, relafen;
  • topical anesthetics-e.g. Lidoderm patches, Flector patches;
  • injection- e.g. steroids and Toradol or invasive epidurals, nerve block baclofen pump, Medtronic’s spinal cord stimulator (Neurostimulation);
  • anti-inflammatories-e.g. Celebrex, Mobic, ultram, ultracet; and occasional narcotics -e.g. vicodin, hydrocodone (as acute treatment or short course to break cycle in chronic pain -do not recommend long term use because will worsen symptoms of PD and interfere with medications used for treatment of both PD & dystonia; should not be necessary in most cases if above followed properly)