Those questions that were not presented to the live Panel of Neurologist at the 2012 Dystonia & Parkinson's Patient Symposium, were answered by a neurologist immediately after the event and can now be viewed below.
Click on the links below to take you to the questions related to either disorder.
Parkinson's Disease Q & A's:
1. What is the difference in the prognosis, treatment and rate of progression for those with non-shaking form of Parkinson's?
The rate of progression has tremendous individual variation, even among the non-tremor (non-shaking) predominant patients. In general however, we know from epidemiological studies that people with tremor-predominant PD have a relatively slower progression rate than those without tremor. But even among those without tremor, idiopathic (classic) PD is a disease that tends to progress slowly over years.
2. What happens to the patient, should there be a reversal of the effects of dbs. How has the role of the patient changed with the newer type of dbs?
If for unforeseen reasons (such as an infection), the DBS hardware needs to be removed, it would have the same effects as turning it off. The Parkinson's disease symptoms that are controlled by DBS are likely to return on the opposite side of the body of the removed hardware. Many patients choose to have another procedure after the infection is controlled to have it reimplanted, or to have medication adjustments to address those symptoms.
The newer DBS devices allow for greater patient control using the patient programmer.
3. Does anyone have experience with any benefits from acupuncture, shiatsui, or any "non-med" therapy?
Physical exercise therapies are widely used for the treatment of symptoms of Parkinson's disease, and some have been proven to be efficacious in scientifically rigorous studies. These therapies include conventional physical therapy, movement strategy training and formalized patterned exercises that include Tai Chi and Qigong. Acupuncture has also been used with extensive anecdotal beneficial experience, although there is insufficient evidence from studies to suggest clear benefit.
4. Parkinson's induced by anti-depressents, how frequent is this and have studies been done to measure this and/or how long has the connection been known?
Drug-induced parkinsonism is a known -although still relatively uncommon- side effect from medications that block dopamine, such as antipsychotics and anti-nausea medications. Some of the antipsychotics are used for the treatment of depression (risperidone, aripripazole, ...).
Classic antidepressant medications, such as the SSRIs (selective serotonin reuptake inhibitors, like fluoxetine, citalopram, etc.) have only very rarely and anecdotally been associated with development of parkinsonism. These medications are actually commonly used to treat depressive symptoms in people with Parkinson's disease. Drug-induced parkinsonism resolves after discontinuation of the offending medication, although it may take several months for the symptoms to resolve.
5. Botulinum toxin for shoulder pain, how well does it work?
Botulinum toxin injections have been found to be helpful in not only treating abnormal movements, such as cervical dystonia, but also in treating associated pain, independent of the effect on the movement. These injections are also commonly used to treat chronic headaches.
We don't understand very well the mechanisms through which botulinum toxin injections help pain, though.
Shoulder pain is a very common symptom in Parkinson's disease, and it may be related to the disease itself (from rigidity for example), or from commonly associated orthopedic problems, such as frozen shoulder. Before symptomatic therapies are tried, such as botulinum toxin injections, a thorough evaluation by a neurologist and orthopedist is recommended.
Dystonia Disease Q & A's:
1. I've been getting botox injection in my eyes every 3 months for a couple of years for blepherospam. Now I need a higher dosage. Is this due to stress, immunity, or has the condition gotten worse? Does Botox cause resistence/immunity in general (like antibiotics)?
Some patients with blepharospasm will require adjustments in botulinum toxin injection dosages. While it is not entirely understood, progression of the underlying disease is suspected. Alternatively, differences in injection sites and between injectors, and small changes in the concentration of the toxin from injection to injection, may affect individual variation in the response.
Development of blocking antibodies is a concern when using botulinum toxin injections, and that is one of the reasons why booster injections (or injections less than three months apart) are not recommended. However, when that happens, there is usually no effect from the injection, as opposed to a higher dose required.
2. Why has botox worked for dystonia in my neck but not in my foot?
Dystonia affects differently different parts of the body. Complicated movements of extremities may be hard to appropriately treat with botulinum toxin injections. Muscle selection using EMG guidance for the injections usually provides the best results.
3. Can a virus start dystonia?
Severe viral infections of the brain (encephalitis) may cause secondary dystonia as a consequence. Primary dystonia is not thought to result solely from viral infections, but it is possible that a history of viral illness may have a role.
4. Environmental, preservative in foods and illegal drug use, can these be possible causes of dystonia?
Certain medications and drugs of abuse, such as cocaine, can cause acute dystonic reactions (usually transient), as well as cause or contribute to tardive dystonia, a form of secondary dystonia, which can be permanent.
Environmental pollutants and preservatives have not been studied in dystonia, and hence we do not know their potential contribution to dystonia.
5. If you have had DBS surgery and dystonia has progressed, is it possible that electrodes need to be moved to other parts of the brain?
In rare cases, the DBS electrodes may need to be replaced, or additional leads placed. In most cases, if symptoms have been unresponsive or if new symptoms arise, careful reprogramming of the device -without repositioning- is sufficient to address symptoms.
6. Does eating a lot of sweets every day make dystonia worse? What foods can be helpful?
There have not been rigorous studies looking at nutrition and specific foods and dystonia. In principle, high intake of sweets should not affect dystonia, but individual variation may occur. Eating a lot of sweets may not affect dystonia, but can certainly affect your teeth!
7. Are frequent night leg cramps due to dystonia?
In most patients with dystonia, the dystonic pulling and abnormal postures or movements disappear with sleep. Some patients, especially with secondary dystonia -like dystonia associated with Parkinson's disease-, may have symptoms at night, when the medication wears off.
It would be very unusual to have dystonia with only nocturnal manifestations.
8. I have generalized dystonia that responds to dopamine but is not the DRD. My daughter has segmental dystonia. I was tested 9 years ago for a genetic cause (DYT 1 & DRD) but did not have either. Would it be practical to get tested again?
Apart from DRD, other forms of dystonia may respond at least partially to levodopa.
In addition to DRD, and DYT1, we now have DYT6 testing commercially available. It may be worthwhile getting tested for that one, considering your family history.
9. Define the difference between a "disorder" and a "disease". Why is dystonia not considered medically a disease?
Disorder and disease are frequently used interchangeably. Dystonia is however considered a syndrome or a disorder rather than a specific disease because dystonia is just the description of a movement disorder -such as tremor-, and many different specific diseases (genetic and non-genetic) can manifest with dystonia. When dystonia is the only symptom, we refer to it as "primary dystonia".
10. How are non-genetic focal dystonia patients succeeding with DBS? How are they selected?
Patients with severe focal dystonia -usually cervical dystonia- that have been unresponsive to medications and botulinum toxin injections, or minimally responsive with functionally impairing symptoms are considered for treatment with deep brain stimulation.
While the number of such patients undergoing DBS is still much lower than for patients with generalized dystonia (both genetically proven and those without a known genetic deficit), it has been proved to be efficacious in studies for the treatment of severe cervical dystonia.
11. Can the brain region (Basal Ganglia) that causes various types of dystonia, also cause psychiatric disorders (i.e. depression, anxiety, etc.)?
The basal ganglia are not only involved in voluntary motor control, but also are associated with a variety of functions like learning, eye movements, cognitive and emotional functions. Parkinson's disease, a disorder in which the basal ganglia are affected, has depression and anxiety frequently as associated symptoms.
12. If one has already had brain surgery 40 years ago, can one still be eligible for the Deep Brain Stimulation process offered today?
Yes, having a history of thalamotomy in the past for dystonia is not a contraindication for deep brain stimulation, and additional benefit is frequently obtained. However, patients who have had multiple thalamotomies in the past may not obtain as much benefit as someone who has never had surgery.
13. As a cervical dystonia patient, I always feel lethargic, depressed, and very tired after every Botox event. Can you suggest any help?
Having systemic symptoms is unusual after botulinum toxin injections, although flu-like symptoms have been previously reported. Most of the time these symptoms are transient and resolve without intervention, but ibuprofen or other over-the-counter anti-inflammatory medication after the injections may improve these symptoms.
14. Is there any stem cell research being done for dystonia?
Currently there are no stem cell clinical research studies in patients for dystonia. At the basic research level (in the lab), there is promising research being performed to address a variety of neurological illness, dystonia included.
15. What is the role of stress as a trigger in different types of dystonia?
Stress frequently worsens preexisting movement disorders, including dystonia, and many patients report a history of increased stress at the time of symptom onset. It is however uncertain the role of stress in the cause or development of dystonia.
16. Can anesthesia cause dystonia?
Typical anesthetic agents have not been associated with development of dystonia. However, during surgery and the postoperative period, other medications can be given, such as anti-nausea medications, which have been associated with development of tardive dystonia.
17. Is there any research on acupuncture for cervical dystonia?
There are anecdotal reports in the medical literature of successful treatment of cervical dystonia with botulinum toxin injections, particularly addressing pain. Large studies are however lacking.
18. Torticollis, tardive dyskinesia and cervical dystonia, are they the same? Other than DBS or Botulinum Toxin, what other drug therapies are available for cervical dystonia?
Cervical dystonia refers to focal dystonia affecting solely or primarily the cervical or neck region. Torticollis is a specific type of cervical dystonia, in which the neck is turned to one side (as opposed to tilted forward or backwards).
Tardive dyskinesias (or tardive dystonia) is a specific cause of dystonia or abnormal movements secondary to the past or current use of medications that block dopamine.
Apart from botulinum toxin injections and deep brain stimulation, oral anti-spasmodic medications can be used to treat cervical dystonia, such as anticholinergic medications, benzodiazepines or antispasmodic agents like baclofen.
19. At what dosage level do anticholinergic side effects typically occur?
There is tremendous individual variation to the development of side effects from anticholinergic medications. Younger patients -especially children- tend to tolerate higher doses than adults, and individuals over age 70 tend to develop side effect, particularly cognitive side effects at much lower doses.
20. If muscle activity is almost quiet, would you still treat by injections?
Usually one would expect to find increased muscle activity in a muscle suspected to be involved in a particular form of focal dystonia. However, if the muscle has been previously injected, there may be decreased activity. If the movement is consistent with involvement of that particular muscle, despite relative low muscle activity, and previous injections in that muscle have been effective, re-injecting that muscle may be beneficial.
21. How do you differentiate between primary dystonia and early Parkinson's in adult onset patients?
Many patients with early Parkinson's disease -particularly young onset patients- may have prominent dystonia, even as symptom onset. However, patients with Parkinson's disease, in addition of possible dystonia, will have other symptoms of parkinsonism, such as a specific tremor, bradykinesia (slowness of movement and decreased dexterity) and rigidity. In difficult cases, a F-dopa PET scan or DaT scan can be helpful in distinguishing the two conditions.