Innovative Nerve Damage Repair on the Horizon

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Visualizing nerve damage as an electrical cord with a short in it helped researchers at Tel Aviv University in Israel devise a potential  treatment to reverse nerve damage.  They visualized and then developed a tube running between the damaged nerve ends to restore function and eliminate pain.  This special micro-tube is filled with a gel that contains three special ingredients to encourage the repair and re-growth of the damaged neurons:  Antioxidants that give anti-inflammatory benefits;  synthetic laminum peptides to provide a track along which new neurons can grow and hyaluronic acid to keep the tube from drying out.  The tube itself is biodegradable. The special gel has also been used alone in cell therapy and has been proven to preserve cells and encourage cell growth.

While it is still a ways away from being used in humans, animal studies have been successful and the developers of this technology are hopeful that it will be available within a few years.  They see this development as helping people with paralysis and other nerve damage problems as well as using the gel in cell therapy to help the symptoms of Parkinson’s.

Music Soothes the Parkinson’s Beast

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Nerves can be soothed or set ajar by the sounds of music.  But just how does that happen?  Film directors know how to use music to enhance a scene, raising the tempo to accompany a race or employing certain harmonies to enhance mystery.  TV and radio ads are accompanied by musical jingles to stick in the minds of future consumers.  So just what is the connection between neurology and music?

An on-going public symposium is part of an honors course being offered at University of Central Florida called “The Music and The Brain” taught by two professors, one a neurologist and the other a musician. The symposium combines both musical performance and neurological commentary.

Dr. Kiminobu Sugaya is the neurologist who comments on the science behind emotional responses to music. “Music cn act on the same place and release the same chemicals (dopamine) in the brain that drugs do, in the pleasure centers”, he said.  Music can be used as a pleasant stimulant for both Alzheimer’s and Parkinson’s patients.  But music can also become a torture and a cause for epileptic seizures in muicogenic epilepsy.

There are theories “that certain major scales provoke certain emotions in people” said Professor of music, Ayako Yonetani.  “But the question about the connection of the mind and music is one that everyone is trying to answer.”  Professor Yonetani said that musicians strive to evoke an emotional effect on their listeners such as the theme from “Schindler’s List” and Bach’s “Air on the G-String.

Although the neurological implications of music are not yet thoroughly understood, both Dr. Sugaya and Dr. Yonetani are excited to see more diverse involvement in neuroscience protrams.  Dr. Sugaya suggests that in addition to chemistry, psychology, computer science and even journalism can all contribute to a better understanding in the field of neurology.

Can a Leukemia Drug Help Parkinson’s?

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Investigators found that the use of the leukemia drug nilotinib in mice specially bred to over express alpha-synuclein and tau  was successful in eliminating the abnormal accumulations of these proteins.  They also found that cognition (thinking) as well as movement and functional skills were also greatly improved by the use of this drug in these mice. And the mice actually lived longer than the untreated mice. Alpha-synuclein and tau  proteins are the main causes of Lewy Body dementia in Parkinson’s and other neurodegenerative diseases such as Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s and Huntington’s.  It is an excess of these abnormal proteins that cause brain cells to deteriorate and be destroyed.

The investigators in this group had been searching to find a drug that could cross the blood-brain barrier in order to destroy cancerous tumor cells in the brain. Nilotinib was one drug that had that ability.  When used in much higher concentrations to treat chronic myelogenous leukemia, the drug forces cancer cells to turn on themselves and totally self destruct.  The researchers reasoned that very small doses might be sufficient to rid brain cells of only the malfunctioning proteins.  Nothing like this had ever been done before.

The research group from Georgetown University is led by senior researcher Charbel E-H Moussa, M.B., Ph.D.  He says “This drug, in very low doses, turns on the garbage disposal machinery inside neurons to clear toxic proteins from the cell.”  Dr. Moussa also said “We successfully tested this for several disease models that have an accumulation of intracellular protein.  It gets rid of alpha synuclein and tau in a number of movement disorders, such as Parkinson’s disease as well as Lew body dementia.”  Dr. Moussa feels that for this treatment to be most effective, it would need to be used early in the neurodegenerative disease.

He is currently planning a phase II clinical trial in patients who have already been diagnosed with alpha synuclein inclusions such as Lewy Body dementia and Parkinson’s.  He notes that the drug already had FDA approval for leukemia and it is well tolerated in humans.  Hopefully, this will help to this clinical trial sooner rather than later.  The researchers are very optimistic and eager to proceed with this trial.

PRF Donates $30,000 Grant to Parkinson Research

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The Parkinson Research Foundation (PRF) has provided a $30,000 grant donation to help support a research study being conducted in conjunction through the University of Florida in Gainesville.

The study will look take a closer look at the efficacy of aerobics and dance classes, which are specifically tailored for people with Parkinson’s. According to Marilyn Tait, Executive Director of Parkinson Place, the medical community has accepted that exercise is essential for Parkinson’s patients, but not integrative dance or yoga. There really aren’t any treatments out there that incorporate specific exercise types of exercise programs for people with Parkinson’s.

This type of study is of particular importance because has been little research done on the effect of aerobics and dance on Parkinson’s patients. According to Tait, the medical community’s primary treatment for Parkinson’s is medication and alternative treatments need data to back up their validity. The last studies done on the topic were 10 years ago and never got published.

Heading up the research study is Jill Sonke, Director of the Center for the Arts in Medicine at the University of Florida. Sonke is one of the faculty members of the School of Theatre and Dance and serves as the Assistant Director and Artist in Residence with Shands Arts in Medicine. Her specialty is dance in medicine.

“I think the results of the study are going to cause health care providers that see Parkinson’s patients to make this an important part of treatment,” said Larry Hoffheimer, founder of PRF.

A principal mission of the PRF is to educate patients and their care givers – enabling them to live fuller and more comfortable lives. PRF holds seminars, conferences, and educational cruises.

Who Cares? -“Success Strategies for Parkinson Caregivers”

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Mtait

WHO CARES?

“Success Strategies for Parkinson Caregivers”

 

By MARILYN TAIT

Parkinson Educator, Motivator & Advocate

Executive Director, Parkinson Research Foundation

SPEAK UP!  “Keep Talking When No One Wants to Listen”

 

The non-stop highs and lows of caregiving put you on an emotional roller coaster whether you like it or not.  Unfortunately, the emotions often associated with caregiving are far from calming.  Anxiety, frustration, anger, loneliness, depression and fear can make for a rough ride.

 

Uncontrollable mood swings can take the joy from the day and rob you of a peaceful night’s sleep.  It’s common for long-term caregivers to feel the increased pressure of rising demands but for the good of all you must remain calm. The key is to let your feelings out a little at a time before you explode.  The fastest and easiest way is to keep opening your mouth.  There will never be a better time to talk too much!

 

  • Share your thoughts with family members and friends whom you can trust with your feelings.  Identify those who will listen objectively while offering sound advice and sincere concern. Gain strength and emotional support from those in your life who love you enough to listen.
  • Right your feelings by writing them down.  Journaling is an easy and effective way to release negative feelings the minute they pop up.  Write at random.  If your feelings are important enough to matter, they are important enough to write down.
  • Keep the line of communication open between you and your loved one.  Do not hold negative feelings in because it’s easier to say nothing.  No one can read your mind.  If you want others to know what you are feeling, tell them.
  • Talk to yourself.  Rely on the one who cares the most and is always ready to listen.  When you’re down, pick yourself up with praise and positive affirmations.  Always pat yourself on the back and silently take a bow.
  • Seek counseling when the emotional impact of caregiving knocks you down and you can’t get up.  If you try in vain to deal effectively with your feelings, do not hesitate to make an appointment with a professional counselor who can provide the necessary resources and emotional support you need.

 

Message from Marilyn…

 

If you cherish your sanity, speak up!  There is no good reason to harbor your feelings.  As a caregiver, think about what you are dealing with, physically and emotionally, and love yourself enough to open up and let your feelings out.  Your mission is to maintain a positive relationship between you and your loved one.  The caregiving challenges you face together, every day, have the ability to negate the finest relationship.  To protect what you love the most, keep talking no matter what!

Personal phone calls

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written by Kate O’Neill

She’s called several times before he pounds in her number to phone her from the car.  The drive to the afternoon Wednesday clinic takes some time.  He returns patient calls.  The matter was private, she gave no information to the secretary, only that she needed to speak with him, urgently.  The patient has several other ailments in addition to Parkinson’s Disease, as well as a psychiatric history.  Several months ago she had a severe crisis and spent weeks recuperating in a rehabilitation unit.

He calls with some reserve, hoping the matter can be resolved easily and that he won’t have to pull over.   She answers the phone in a breathy salute.  She’s been painting again.  The newest regimen of medications enable her to be much more productive, though she fears there is an awkward side effect; something embarrassing.  The doctor reassures her dopamine agonists are portrayed somewhat scandalously, the true percentage of patients adversely affected is really quite low.  The woman on the other end of the line interrupts him as he digresses about the safety of dopamine agonists.  She fears her marriage is in jeopardy, should she act on the urges she’s felt.  A particular male model has caught her eye.  He has been sitting for her drawing class.  She knows the whole scenario is outrageous, but she finds herself thinking about the young man throughout the day.  Using a class sketch, she works to paint him.

Painting is her reward for folding laundry and washing dishes.  She treats herself to his image every day, looking forward to that time, when she can be with his likeness, alone.  Her spouse is happy to see she has returned to her vocation.  She’s mortified with herself and fearful of confiding in her spouse.  Could the medication, the dopamine agonist be the culprit, causing her to fixate on the young model?

There is a break in their conversation, when the doctor considers the matter.  She can’t see him raise his eyebrows or slightly shake his head.  He launches into an explanation of punding- a term given to what some patients do, repetitively, though their actions are usually sorting or re-arranging, not painting.  A sense of satisfaction comes with the chore.  The doctor urges her to speak with her spouse or her therapist.  She tells him her therapist thinks it is a positive sign and she’s rather die than share her secret with her husband.

Another day at the office

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written by Kate O’Neill

The doctor has various clinic days.  On Wednesday afternoons he travels south to Sarasota, to the Parkinson Research Foundation new suites “Parkinson Place” on Cattleridge Drive, where he sees patients.  Monthly at the same location he fields questions at the open forum, “Ask the Doctor ” luncheon; where people afflicted with Parkinson’s disease and their caregivers are provided  lunch and their queries discussed.  Other days he sees veterans at the James Haley Veteran’s Hospital on Bruce B. Downs.  Thursday afternoons he sees patients at the University of South Florida Movement Disorder Clinic.  On board the yearly cruise, sponsored by the Parkinson Research Foundation, he speaks about the illness and any new breakthroughs in research.

Though patients traditionally make appointments through the scheduling desk, some bold patients learn of him and email him directly.   Such was the case of a 41 year old man from California.  His letter arrived from cyberspace in the font reminiscent of an old typewriter, thin and scrappy.  Though his name is confidential, his case is typical for those with young- onset illness.

Are you or anyone else in this country – or Canada – doing clinical ANY clinical trials on GDNF-enhancing therapies, or anything else that addresses the issues of Parkinson’s, that I could participate in? It would be awesome if there was something in Northern California, but I am willing to travel if necessary. I am also willing to receive experimental treatments. In addition, are there any physicians you could refer me to who are treating with GDNF-enhancing therapies, or whom you would recommend for a comprehensive and holistic approach to Parkinsonism?

He had his first symptoms at 31 years of age.  By definition, he has early-onset Parkinson’s disease.  Though he was a runner, he doesn’t say whether he’s still as active as he once was; running a 50 mile stretch, once.

The physician is reticent to provide advice through the internet, with no face to face meeting where he might feel the rigidity of the patient’s elbows and wrists, have him lift his shoulders to observe the movement of the muscles connected to the trunk, and observe the gait in the clinic’s hallway.  No insurance policy would cover medical information given without a physical examination.  The average patient takes the standard route to access the doctor;  an appointment allocated to have the doctor in the room, where you might ask any question.  This man across the country bypassed those more common paths.

The information sat with the doctor, who turned it over and over again.  He considered whether to reply.  Finally he did, knowing this person sought his wisdom, and feeling that he should share what he knows of the disease.  The doctor  urges him to forget surgery, but exercise, regain that old hobby,  the trot.  By increasing one’s heart rate to the maximum for one’s age, the body begins to rebuild, as it does the brain generate growth factors which enhance survival of neurons, indeed the neurons fibers begin to sprout (at least in the brains of parkinsonian monkeys treated by vigorous exercise).  The doctor wonders whether he still has the link that shows monkey on the treadmill, running though they’ve been afflicted by a man-made unilateral parkinsonism.  Yes, that is what the patient needs to see.

Slowly Slipping

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written by Kate O’Neill

The doctor comments on the number of people gathered along the wall and sets the paper cup of coffee on the desk. Not wanting to begin treatment with levodopa, as the patient was forty-two years of age, the doctor recommended a dopamine agonist.  It’s been almost two and a half years since that initial diagnosis.  In the seat inside small room, the patient allows the medical students and visiting Chinese physicians to attend his examination.

The doctor sinks into his chair as he asks the man how he is, and what his major concerns are.  He is tall and slim and flashes a smile of brilliant white teeth.  His dark hair is flecked with grey.  Wearing a business suit and tie, he concedes he still hasn’t told the people he works with.  The doctor nods, supporting his decision.

He worries his mind is not as sharp as it was.  Representing a client in court, he objected to the treatment given to his client by the prosecutor.   Thinking the other attorney was a jerk, he approached the judge and his mind went blank.  Failing to remember what he wanted to say,  he turned away, excusing himself.  Other episodes of spontaneous voids- like holes in cheese, have happened before.  In earlier years they never occurred while he was at work.  He fears such instances may compromise his clients, his reputation and ultimately his earning potential.

Nodding, the doctor  states if that is his primary concern it’s worth exploring.  A colleague performs  neuropsychological testing.  She may be able to determine whether he has any underlying cognitive deficits, and if they conform to any known pattern- Alzheimer’s disease or dementia with Lewy bodies. . .  Some patients have both Alzheimer’s disease and PD.  Even though we try our best to attribute all the symptoms to one disease, and here he cited his mentors favorite quote: “God may plague you with as many illnesses as he cares too.”  When  the patient agrees without enthusiasm, the doctor mentions many well- known figures have had PD, and they’ve managed to maintain their positions and leave their mark on history.  Janet Reno, for instance was able to be a competent  attorney general.  The Pope traveled the world proselytizing for the Catholic Church. . .Francisco Franco and Adolf Hitler both contended with Parkinson’s disease, but the terrible suffering they caused could not be attributed to the disease.

The doctor volunteers the patient may try relying more on junior staff.  By avoiding center stage, he would diminish the chance of finding himself caught without words.  The patient gazes at his hands briefly and agrees.  He thought he might be able to get by for another ten years before making changes in the structure of his work.  Presently, he employs no junior staff.

The doctor encourages him to continue a physical regimen of exercise.  He gives him a referral for cognitive testing and reiterates making small changes to decrease daily stress.

 

My father was diagnosed with PD age 88; can vitamin B complexes be harmful?

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Given that your father’s PD was diagnosed at age 88, it is possible that he has a form of parkinsonism known as “lower body Parkinsonism” in which the primary problem is with gait and balance and with lesser involvement of the arms and hands. It tends to occur in older individuals and doesn’t respond to dopamine replacement (ie levodopa/carbidopa).   It would be important to know if his signs and symptoms slowness of movement, rigidity, and tremor improved with levodopa/carbidopa.  If so then he likely does have Parkinson’s Disease despite the very late age of onset.  If his symptoms haven’t gotten better on levodopa/carbidopa, then it is likely he has lower body parkinsonism. I suggest he have an MRI to determine if he has the neuroanatomical correlate of lower body parkinsonism, namely microvascular lesions in the sub-cortical white matter of the brain.

Regarding your question about vitamin B complexes, they are not an impediment to treatment.  You should know that in the early days of levodopa therapy (1960s), before carbidopa was added to the formula, most of the drug would be metabolized in the gut and liver by an enzyme known as peripheral decarboxylase, that relied on vitamin B6 as a co-enzyme.  To decrease the breakdown of levodopa by this enzyme, physicians recommended that patients taking levodopa avoid vitamin B6.  However, ever since carbidopa was added to levodopa (brand name Sinemet) to interfere with the decarboxylation of levodopa, patients are able to take all the B vitamins without any difficulty.

Questions and Answers Final Day at Sea

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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: PSG.org is an educational consortium listing all clinical trials seeking participants, and past trial outcomes.  NIH.gov 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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