Non-motor symptoms in PD- panel Q&A

The Parkinson’s Disease Foundation (PDF) hosted a symposia on Parkinson’s on July 18, 2008.  The overall topic is “Mind, Mood and Body: Understanding Nonmotor Symptoms of PD.” Here’s a link to the archived recording of the symposia:

There was a terrific question and answer session with panelists.  The panelists were:

• Peter LeWitt, M.D., Henry Ford Hospital
• Doree Ann V. Espiritu, M.D., Henry Ford Hospital, geriatric psychiatrist
• Edwin B. George, M.D., Ph.D., Wayne State University School of Medicine
• John L. Goudreau, D.O., Ph.D., Michigan State University, neuro-ophthalmologist
• Matthew Menza, M.D., Robert Wood Johnson Medical School
• Ronald F. Pfeiffer, M.D., University of Tennessee Health Science Center, neurologist

I’ve copied below notes that I took from the Q&A session with the panel.  (Time markings refer to the time in the recording, should you want to check out the original source yourself.)


Question:  (43:57)  Relationship between impulsive behavior and PD?

Answer by Dr. Menza:  Impulse control disorders are major personality changes.  This happens largely due to medication.  Can happen with Sinemet but is more of a problem  with dopamine agonists.  Please talk to your physician about these problems as they are treatable.

Answer by Dr. LeWitt:  There is no profile for who is going to get these.  These behaviors can begin years after meds begin.

Question:  (46:38)  Are hallucinations caused from the disease or the meds?

Answer by Dr. Espiritu:  Some of the meds can cause hallucinations.  When dementia starts to develop, the risk for hallucinations increases.

Answer by Dr. George:  People with DLBD (diffuse Lewy body disease) can develop hallucinations without being on medications to trigger them.  We don’t have the answer how much pure PD in the absence of meds can trigger hallucinations.

Question:  (49:05)  Is losing sense of smell 20 years prior to diagnosis a coincidence or is this connected?

Answer by Dr. Pfeiffer:  Loss of sense of smell is a common and early finding in PD.  Many may not realize it.  This can happen much earlier than the onset of motor symptoms.  Twenty years is a long time but this could still be seen as being part of PD.

Question:  Any suggestions for erectile dysfunction when Viagra and similar meds don’t help?

Answer by Dr. Pfeiffer:  (50:27)  There are a variety of methods that can be used to treat ED, including injections, vacuum devices, rings, etc.  Urologists know about this.

Question:  What’s the impact of caffeine on PD?

Answer by Dr. LeWitt:  A study showed that neither PD tremors or essential tremors are worsened by caffeine.  (52:12)  Doesn’t seem to be any downside of caffeine.  Long term studies show that caffeine intake correlates with less progression of PD and lower incidence of PD.

Question:  What can we do about dizziness?

Answer by Dr. LeWitt:  Don’t accept the word “dizziness.”  Pin down what this means.  “Dizziness” is non-specific.  No medication can really help with this.  Is this:  low BP, inner ear problem, balance mechanism problems?

Question:  (54:19)  Is there a connection between nightmares and PD?

Answer by Dr. Menza:  Clinically, we worry that someone who develops bad nightmares may be in the early stages of developing hallucinations during the day.  So we want to know if there’s any problem during the day.  And, there are a number of sleep disorders that can include nightmares.

Question:  (55:37)  Is there any evidence that Seroquel is any more effective than Risperdal in treating hallucinations and behavioral problems in late stages of PD?

Answer by Dr. Menza:  Seroquel and Risperdal are antipsychotics.  Risperdal is a drug that I would not encourage those with PD to use.  Most of those with PD will not tolerate Risperdal.  It makes their PD worse.  There may be exceptions.  I don’t know if there’s any efficacy difference but there’s a tolerability difference.

Question:  (58:19)  Does DBS help with pain?

Answer by Dr. George:  Good question.  We don’t know.  There is some reason to think it would help.  But we usually wouldn’t use that sort of symptom as an indicator to go ahead and do this surgery.

Question (by Dr. Menza):  What do you think the relationship between pain syndromes and depression in PD is?

Answer by Dr. George:  (59:38)  Pain complaints are a major issue in those with depression.  They can certainly co-exist.

Question:  What’s your experience in using Ritalin to treat the symptoms of PD?

Answer by Dr. Espiritu:  (00:20)  Ritalin is a medication given for attention deficit disorders.  In geriatric patients, Ritalin (in the morning) can be used to augment an antidepressant (such as Zoloft, Paxil); it helps with fatigue and alertness.  There are no studies of Ritalin in PD.  Sometimes it is considered where there is extreme fatigue.  Another med that is used is Provigil.  A possible drawback can be anxiety, especially if the patient is already anxious.

Question:  (02:00)  Correlation between young-onset PD and seizures?

Answer by Dr. LeWitt:  Not aware of any connection.

Question (by Dr. LeWitt):  What is the connection between exercise and doing well with PD?  Is there evidence of this?

Answer by Dr. LeWitt:  There is lots of animal research (in animals with PD) that shows that exercise helps PD motor symptoms.  The evidence is convincing.

Answer by Dr. Pfeiffer:  In one study, the human equivalent would be a marathon a day for the amount of exercise the mouse got.  But there are human studies coming out of the Univ of Memphis that show that exercise helps.

Question:  Can loss of sense of smell be in both men and women?

Answer by Dr. Pfeiffer:  Yes, both men and women.

Question:  (04:15)  My wife is losing her teeth.  Her dentist told her it is due to the lack of saliva in the mouth from medication taken for PD.  Is this true?

Answer by Dr. Pfeiffer:  There is a literature on dental problems in PD, but it’s confusing.  Some reports say that people with PD have more dental problems due to the absence of saliva and the change in saliva pH.  On the other hand, there have been studies (one out of Japan in particular) showing that PD patients have better teeth.  It seems possible that absence of saliva could leave to poor dental care, gingivitis, and ultimately to loss of teeth, though this isn’t a common problem.

Answer by Dr. Goudreau:  (05:39)  The dentist could be referring to anticholinergic meds (such as Artane) which can dry up saliva quite remarkably.

Question:  (06:03)  Why is there an increase in muscle cramps in PD and what is recommended?

Answer by Dr. George:  Are we talking about dystonia or simple muscle cramps?  PD patients can get dystonic contractures which can occur as a result of medication (peak dose) and as a wearing-off effect of medication.  We typically see people with dystonia of the feet early in the morning from wearing-off of PD meds.  This can be confused with nocturnal leg cramps.  There could be a separate problem of neuropathy.  Have to sort out what sort of cramping the patient is experiencing.

Question:  Any contraindications for caffeine and Azilect?

Answer by Dr. LeWitt:  None known.  There are some foods to avoid with Azilect (rasagiline).  (07:51)

Question:  Treatment of compulsive behaviors.  If off agonists and behaviors persist, is the only choice to reduce Sinemet?

Answer by Dr. Espiritu:  The compulsive issues are very destructive in relationships.  After you’ve tried to decrease the meds that potentially cause these behaviors, and the behaviors persist, we need to take into consideration other meds, such as those for bipolar disorders.  For example, Depakote and lithium.  But these meds contribute to tremor and can worsen PD symptoms.  Antipsychotics are another choice to calm the behavior.  Have the patient see a therapist.

Question:  (10:15)  Is there a time late at night when you shouldn’t exercise?

Answer by Dr. Menza:  As best I understand, you can exercise any time you want.  It always helps with sleep.

Question:  Is sleepiness a biomarker for PD?

Answer by Dr. Menza:  As far as I know, no.

Question:  (11:05)  How do you treat the loss of libido in women?

Answer by Dr. Espiritu:  There was once talk about a nasal spray that was being tested in a small study in women.  There are many psychological issues that need to be addressed with regard to one’s libido.

Question:  (12:37)  Heavy-sweating in PD.

Answer by Dr. Pfeiffer:  40% of PDers have problems with increased sweating.  Usually face, neck, and maybe chest and arms.  Can be precipitated by activity (too much tremor or dyskinesia).  This can happen out of the blue.  Sometimes clothes have to be changed.  Presumably this occurs because of autonomic dysfunction.  This is bothersome but not dangerous.  Treatment is problematic.  I haven’t found an effective treatment for this — not botox, not propanolol.  If it’s due to dyskinesia or wearing-off, controlling PD symptoms should be addressed.

Question:  (15:30)  Impairment in visual-spatial processing.

Answer by Dr. Menza:  Complicated to sort out what in your environment you are going to pay attention to.  Maybe some of the AD drugs will help (maybe Namenda).  Obsessive-compulsive disorder is sometimes seen in PD.  It’s an anxiety disorder.  Treatment in PD is the same as treatment for OCD without PD.

Question:  (17:54)  Creatine, CoQ10, etc.

Answer by Dr. LeWitt:  No effectiveness seen in CoQ10.

Question:  (18:40)  How do you get involved in trials?

Answer by Dr. LeWitt:  See (he said .com but it’s .org)

Question:  How can we slow PD?

Answer by Dr. LeWitt:  We don’t know.

Question:  What about gene therapy?

Answer by Dr. LeWitt:  There are several studies going on and some planned for in the US.

Question:  (20:40)  Can swollen ankles be caused by PD or PD meds?

Answer by Dr. George:  This can be a side effect from dopaminergic agents.  Also, there are changes in vascular tone that can occur in PD.  Other things can cause this such as heart failure.

Question:  What do you know about Azilect?  Can this halt progression of PD?

Answer by Dr. Pfeiffer:  There’s a clinical trial that’s been going on for several years now in Azilect.  News has been coming out about this trial.  The formal report has yet to be released.  Pre-clips have been released.  We don’t know which 2 of the 3 study objectives were met.  In August, the study results will be presented at a meeting in Spain.  At this point, the answer is “maybe.”

Question:  (23:40)  What is the danger of discontinuing Sinemet suddenly?

Answer by Dr. Goudreau:  One danger is NMS (neuroleptic malignancy syndrome).  Life-threatening syndrome.  This is rare.  Other danger is the risk associated with profound immobility that insues from stopping Sinemet:  increased risk of deep vein thrombosis, respiratory infections, etc.  “Drug holidays” have been discontinued because of these risks.  Sudden discontinuation of Sinemet is not recommended.

Question:  My “get up and go” has gotten up and went.  Can you address this?

Answer by Dr. Espiritu:  Apathy is common in PD.  Different from depression.  In apathy, there’s no drive to do anything.  Need to rule out depression.  Talk to a therapist about this.  Use of stimulants has not been studied.

Answer by Dr. LeWitt:  (26:33)  Medication trial in apathy is going on in a small way.  It’s not treated with anti-depressants.

Question:  Benefits of metronome therapy?

Answer by Dr. LeWitt:  This is undergoing research now.

Question:  (27:28)  What is being done to help with cognitive problems?

Answer by Dr. LeWitt:  There are some medication trials being studied for this.

Question:  Neupro patch.

Answer by Dr. LeWitt:  It will likely be returning to the market in the US next year.  Benefits of over-night effects.

Question:  How does someone decide to stop driving?

Answer by Dr. George:  There are many non-motor symptoms that affect driving.  Speak with your physician if you or your family has concerns about driving.  Often an occupational therapist can do a driving evaluation.

Question:  Music therapy.

Answer by Dr. LeWitt:  This is part of the symposium in September.  People with gait problems have been able to overcome these problems with music.

Question:  Balance and walking problems due to PD.

Answer by Dr. Pfeiffer:  Multi-factorial due to the case.  Does falling and hitting one’s head disrupt the inner ear?  Probably.  Balance problems occur later in PD.  If it occurs early in PD, you ares probably dealing with a Parkinson’s Plus syndrome.

Answer by Dr. George:  Antivert is a drug that suppresses the balance organ in the inner ear.  This drug can make your balance worse in PD.

Answer by Dr. Goudreau:  Important to determine if balance problems only occur when levodopa wears off.  Many things contribute to balance problems, such as a pinched disc, impaired vision due to cataracts, etc.  A physician needs to review this.  Balance is a common problem in PD but other reasons should be considered.