Questions and Answers Final Day at Sea

Questions and Answers Final Morning: Saturday March 2, 2013

Written by Kate O’Neill

It’s 9:30 in the morning, time for the question/ answer panel with Dr. Sanchez- Ramos, Linda McDonald, Marilyn Tate, Mary Spremulli and Leymis Wilmot.

PRF chairman Larry Hoffheimer asks about interest in repeating  the cruise on the current route- or whether people prefer to have another departure port-  Eastern and Western Caribbean cruises- not every ship has conference facilities adequate for the group.

Christina speaks about her history, beginning fund-raising for the PRF.   Previously she had been a representative for drug companies.  Knowledgeable about bake sales, she reveals fundraising for a non-profit organization is new to her.

What sort of environmental issues contribute to acquiring PD?  Many toxicants  in our environment increase our risk for PD- by poisoning mitochondria which in turn leads to demise of dopaminergic neurons.   Most studies linking toxicants and PD are based on epidemiological studies and associations can be described, but never a cause and effect relationship.  Certainly some toxicants can be shown to cause death of dopamine neurons in animal models.  There is a well known example of a toxicant, MPTP, which when taken intravenously can cause death of dopamine neurons and a PD-like disease.  MPTP is a contaminant of an underground drug synthesis of meperidine (Demerol) which was sold on the black market as a heroin-like drug.  The i.v. drug abusers who used this substance developed PD. This observation led to the search for similar toxicants.

Visual issues– Most commonly visual problems are described as blurring of vision and difficulty scanning lines while reading.  The most likely explanation, for blurred vision is difficulty in focusing for near vision because of anti-cholinergic medications used to treat PD.  Double vision occurs because of asymmetric rigidity of the extra-ocular muscles.  These muscles develop a “cog-wheel” rigidity which makes scanning of the visual field choppy.  Another visual problem, difficulty seeing during dusk is due to depletion of dopamine stores in the retina resulting in decline in contrast sensitivity.

Progress of PD– may bechoppy or gradually progressive:  Stage one involves one side of the body- spreading to the opposite side- patients are usually able to differentiate between such times

Tremor dominant PD usually has a milder course of Illness, generally

PD with Lewy bodies: Lewy Bodies are the pathological hallmark of PD.  Lewy bodies are intracellular and are found initially in the front and back of the brain (olfactory bulb and medulla).  They gradually spread to midbrain and at that stage the illness becomes clinically manifested.  A clinician cannot see Lewy bodies in life because it requires post-mortem microscopic analysis of brain tissue.         Diffuse Lewy body disease presents with dementia and florid hallucinations, most patients that respond to dopamine replacement have Lewy bodies within their brain cells, hence Parkinson’s Disease can be diagnosed with certainly.

Protein in diet and PD.  Levodopa can only enter the brain by active transport across the blood/ brain barrier.  Diet usually becomes an issue after some time- Sustecal and Ensure are rich in amino acids (the building blocks of proteins) and other proteins.  A type of amino acid (the neutral amino acids) enter the brain via the same transport system as levodopa (which is also a neutral amino acid).  So taking levodopa/carbidopa around the hours of digestion of a protein meal will impede dopamine transport into brain and result in failure to experience the benefits of levodopa (ie the patient will remain off or if on will shut off).

Mediterranean diet rich in fruits and vegetables may have less risk of acquiring PD-  must be practiced early in life to have an effect- diet though is not sufficient, you must exercise

What sleeping medicine would you recommend?  NONE. Sleep hygiene becomes important in PD to obtain the best possible sleep- this stresses darkness at night (no lights on at night), exposure to bright light or sunshine during the day, and if something is needed first try diphenhydramine (Benadryl) – or melatonin.  Regular sleep varies tremendously, but seek to get three cycles of three, ninety minute phases- this may require something to inhibit the bladder, so one is not waking to pee every three hours.

When do you change doctors?  Dr.  passes microphone to Marilyn-  who recommends someone who is able to manage your illness, serve you well, listen to you when you’re not well- Seek someone who will be a medical companion, someone you can trust.

How do you know where a good one is?  Look for referrals, someone board-certified, trained in Movement Disorders- though not all are able to have this- someone who has focused on the disease.  Movement disorder society has a listing of all physicians, this directory should be available online, and at the PRF.

Drug trials looking for participants: is an educational consortium listing all clinical trials seeking participants, and past trial outcomes. also lists all clinical trials in the US.

Current belief about exposure to general anesthesia– The doctor equates anesthesia with taking off and landing a jet airliner-  it’s the riskiest part of surgery.  During the recovery period from surgery symptoms of PD are exacerbated and sometimes the patient never returns to the pre-operative baseline.  Intubation poses a high risk for swallowing problems- post operation

Hospitals in themselves are high-risk environments: We used to admit patients more frequently for drug- holidays TOXIC ENCEPHELOPATHY- where all meds. were stopped, to reset patients who seemed to be not deriving benefit from medications. Stopping meds put people at risk for malignant hyperthermia- high fevers and muscle breakdown.

Is it important to inform one’s neurologist if the patient is going into the hospital?  Dr.  agrees most hospital staff do not know how to care for patients with PD-  all meds must be continued until you are unable to take fluids. MAO inhibitors- should be stopped beforehand.  Once the patient is allowed to swallow food and liquids, oral medications can be restarted.

Tiredness during the day–  Resting during day is fine, if person is still sleeping throughout the night.  If the patients sleep well through the night but still is somnolent all day, a trial of Modafinil- a drug used for narcolepsy- may be tried.

Azilect is given in early PD to slow progression of the disease.  It can also be used to increase “on” time since it is an inhibitor of dopamine breakdown and hence allows the dopamine to remain a bit longer.

Constipation and PD– movements of gut is slowed- not helped by levodopa, must rely on old-fashioned remedies- fiber, water, ducolax, miralax

Competition is always good in healthcare– different pharma companies producing therapeutic compounds give patients choices, a good thing.  Similarly the many non-profit foundations dedicated to PD compete for funding.  How is that a good thing?  Investors in Michael J. Fox: Foundation from movie and TV industry provide  significant funds for research.  How much does the Fox organization supply for research?  It is certainly much less than NIH provides.  Marilyn notes that PRF is unable to raise funding amounts similar to the Fox organization- but the strength is that PRF addresses the quality of life of patients, today.




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