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.

Dystonia and parkinson's, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Tips to dealing with cramping toes: By Dr. De Leon

  • Purple Clover's photo.

It is extremely painful to have one little toe or worse all toes suddenly decide to have a mind of their own and begin to curl, twist and bend at their own free will. Believe me, I know. This type of pain can bring a grown man to their knees.

When I first began having symptoms of PD, I noticed that every time I arched my foot to put on my shoes especially if the shoes had a narrow circumference, the shaft was high  (e.g. boots),my toes along with my entire foot would curl up into an extremely painful contorted mess that could only be relieved by stoking deeply for several minutes. At first I thought I had cramps due to potassium deficiency since I was on diuretics (water pills) for my blood pressure. But, since they were potassium sparing of course this was not the case. Since I love shoes, this little problem was turning into a huge problem since I could no longer wear most of my shoes. Each time I attempted to wear high heels even medium heels my toes would automatically curl down. Because of the exaggerated angle in which the foot would have to be positioned  wearing these shoes not only was it difficult to put on but even more painful to wear often causing me to be off balance. Now, I was forced to make a drastic change to my wardrobe throwing away most of my shoes including all my favorites to prevent falling and pain.

For the first time in my life I was wearing tennis shoes all the time (extra wide) with little to no arch.

Although, cramping toes can be one of the initial presentation of Parkinson’s disease as it was for me it can also be a sign and symptom of many other possible conditions.

 In fact, cramping toes usually are a sign that medications are causing side effects ( as I alluded before especially in the elderly many of whom take water pills for heart problems), not working very well, and a first sign of Diabetes and other neuropathies (loss of nerve endings).  Yet, if you already have a neurologic illness such as PD or idiopathic dystonia, the presence of these are an indication of poor medication control.

What to do at first sign of cramping in toes/ legs /foot:

Go to PCP to make sure your electrolytes are okay like potassium, magnesium and calcium (have both your total calcium and ionized calcium).

Toes cramping can also be a sign of diabetes, as I stated earlier. So your doctor may have you undergo a blood sugar tests especially if older or have risk factors like family history or repeated use of steroids. Usually they will order a 3- hour glucose test but others prefer a 5- hour test. This requires you drinking a nasty sugary orange drink while fasting while you have your blood drawn at baseline then every 1/2 hour to an hour for the duration of test.

2) There is a condition known as painful legs moving toe syndrome which also can cause this problem. This extremely rare, usually in adults. Pain is that of nerve burning, searing. This is associated with writhing movement of  one or more toes and can be in one foot or both. sometimes can have movement of toes without pain- “painless legs- moving toes

3) this can also occur in dystonia syndromes – focal idiopathic or secondary dystonia as seen with PD and other neurological disorders (e.g. Cerebral palsy, DRD, parkinsonism).

If all blood test initially are normal and symptoms persist seek opinion of a Movement disorder specialist (MDS).

If symptoms are determined to be neurological and due to PD as were mine then starting treatment with dopamine agonists or levodopa will dissipate the pain and stop the involuntary contraction of your toes. No longer was I bound to wearing tennis shoes all the time! Too bad I had already thrown half of my shoe collection away.

if are already a season PD patient and are now  having this problem: note time of onset and duration along with relation to medication intake. Does is it commence at end of dose, at peak dose, or beginning of medication? This is crucial to help your MDS best adjust your medications to stop your symptoms. If adjusting meds do not help Botox and even DBS can be done.

As an aside: Sometimes NEUPRO can cause cramps when patch wears off or if it falls off. I have noticed that suddenly I start cramping so I look for my patch to find out it has slipped due to humidity and sure enough it has most of the time.

As I previously mentioned neuropathies can trigger these problems, make sure that if you are a PD person your doctor is checking your  B12  and Vitamin D because these deficiency are not only common in Parkinson’s but can cause neuropathy.

Treatments of Curling Toes: will depend largely on the cause but there are some symptomatic treatments. Finding the etiology is key to prevention and successful treatment.

  • Mustard- spoonful of mustard with water- carry some packets with you in case
  • (sour/dill) Pickle juice- when I first started having symptoms I became like all my patients with jars full of dried pickles in the refrigerator.
  • Tonic water (Gin & tonic maybe not so much) a glass or 2 a day-
  • No quinine- no longer used because potential for heart problems
  • B12 injections/ nasal spray/sublingual
  • B1- thiamine 100mg tablets daily- not enough to take multivitamins ( better to take B complex vitamins but may still need to take extra)
  • Neurontin ( or Lyrica)
  • Dopamine medications
  • Klonopin (other anxiolytics)
  • Baclofen ( other centrally acting muscle relaxants)
  • Botox injections for focal dystonia when meds not helping ( may also use other forms of botulinum e.g. disport, myobloc)
  • DBS
  • Sugar control (diet, exercise and medications)
  • Replace electrolytes- K, Mg, Ca
  • Replace Vitamin D
  • parathyroid/thyroid replacement

Great sources of Potassium:

  • Avocados (also rich in Magnesium)
  • Bananas ( Magnesium source as well)
  • Strawberries
  •  Popcorn

Great sources rich in Magnesium:

  • dark  leafy greens ( also have lots of B12 vitamin)
  • fish (mackerel)
  • nuts and seeds -(pumpkin seeds)
  • beans and lentils
  • dark chocolate ( my favorite)
  • non-fat yogurt