"Parkinson’s and depression can go hand in hand"

From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Thursday, August 14, 2014 7:30 PM
To: Madam Secretary Sylvia Matthews Burwell, United States Secretary of Health and Human Services
Subject: “Parkinson’s and depression can go hand in hand”

Dear Madam Secretary Burwell,

Early on in a number of my messages to your predecessor Kathleen Sebelius, Jonathan Blum – CMS, medical professionals and Joyce’s fellow patients I shared my interesting and unique observations that despite worsening of Joyce’s Parkinson’s type illness, PSP (Progressive Supranuclear Palsy), she continues to remain depression free.  In Joyce’s case history there is no doubt in my mind that I attribute this unique and amazing benefit to her VNS Therapy. 

The point being Madam Secretary that information of this nature does not appear in the data contained in the computers that your medical experts ruminate as to safety and efficacy of VNS Therapy for Depression.  In my spouse’s case 14 years of therapy have exhibited no safety issues and efficacy has been nothing short of remarkable.  The fact is there is a group of volunteer study subjects and patients implanted with this medical device similarly benefiting from the therapy despite whatever incorrect conclusions your staff may have arrived at.  The reality is their facts are skewed and/or misinterpreted and do not match real world results.  And even if the percentage obtaining efficacy are not up to your medical staffs criteria the most important point your people are missing is that these are the worst of the worst patients, like Robin Williams experiencing suicidal ideations, who have found a treatment that finally works for them.

Robin Williams’s death is a tragedy from my perspective as is the suicide of others who lack information and awareness of many newer treatment options.  The fact is no one can guarantee the efficacy of any therapy for severe depression patients but to deny a VNS Therapy patient a treatment option that is already beneficial and working for the patient is truly inhumane and criminal.  And that is exactly what CMS has done through their blatant ignorance and/or professional arrogance and so too the private health insurers that followed CMS lead.  Whether through oversight or stupidity you have left this group of patients without medical coverage for therapy that has remarkably benefited their lives like no other.

Again I am asking you to abort this lunacy.  Issue a formal document (i.e. “Compassionate Use”) to insure medical care for the existing patients and help put similar pressure on the private health insurers to follow suit and abort their arrogance too.

Sincerely,

Herb

Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733

vnsdepression@gmail.com

http://www.vnstherapy-herb.blogspot.com

http://www.vnstherapy.wordpress.com

Robin Williams suffered from early Parkinson’s at death: widow

By Piya Sinha-Roy and Eric Kelsey

LOS ANGELES Thu Aug 14, 2014 5:54pm EDT

3 Comments

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A woman takes a picture of a mural depicting late actor Robin Williams in Belgrade, August 13, 2014.

Credit: Reuters/Marko Djurica

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LOS ANGELES (Reuters) – Robin Williams was sober but suffering from the early stages of Parkinson’s disease as well as severe depression and anxiety at the time of his apparent suicide, the actor’s widow said in a statement on Thursday.

Susan Schneider said Williams “was not yet ready to share publicly” his struggles with Parkinson’s, an incurable and debilitating nervous system disorder that causes tremors and slowness of movement.

“It is our hope in the wake of Robin’s tragic passing, that others will find the strength to seek the care and support they need to treat whatever battles they are facing so they may feel less afraid,” Schneider said in the statement.

The 63-year-old Oscar-winning comedic virtuoso, whose madcap style and dramatic versatility made him one of film and television’s top stars, was found hanged at his Tiburon, California, home north of San Francisco on Monday.

The news that the comedian also suffered Parkinson’s disease has drawn attention to the correlation between the disorder and depression.

“While a diagnosis of any serious disease can be overwhelming, Parkinson’s and depression can go hand in hand,” the National Parkinson Foundation said in a statement following Schneider’s announcement.

“Depression affects quality of life more than the motor impairments of the disease,” the foundation said, adding that more than half of those who suffer from Parkinson’s also experience clinical depression as part of the disease.

Actor Michael J. Fox, boxer Muhammad Ali and singer Linda Ronstadt have all be diagnosed with Parkinson’s. Ronstadt said last year that the disease had robbed her of her singing voice.

Between 50,000 and 60,000 people are diagnosed with Parkinson’s each year in the United States. It typically affects people over 50 years old.

Williams, whose starring roles included “Mrs. Doubtfire” and “Good Will Hunting,” had been open about his struggles with alcohol and had gone to a Minnesota rehabilitation center this summer to “fine-tune” his sobriety, his publicist said in July.

Friends of the comedian, who first shot to prominence as a friendly alien in late 1970s TV series “Mork & Mindy,” described Williams as a man who masked his depression and thrived from performing for a crowd.

Williams’ death, which has touched off a national conversation about suicide and depression, shook Hollywood and generations of fans.

U.S. President Barack Obama called him a “one of a kind” actor while directors and colleagues noted his humble nature, generosity and talent as one the most inventive comedians of his era.

“Since his passing, all of us who loved Robin have found some solace in the tremendous outpouring of affection and admiration for him from the millions of people whose lives he touched,” Schneider said.

“His greatest legacy, besides his three children, is the joy and happiness he offered to others, particularly to those fighting personal battles,” she added in the statement.

Funeral arrangements are pending, and a full toxicology report will take two to six weeks, local officials said.

(Editing by Jonathan Oatis)

http://www.reuters.com/article/2014/08/14/us-people-robinwilliams-idUSKBN0GE1YQ20140814

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About vnstherapy

I'm a very, very long-time support person and health care and mental health advocate/activist for my spouse Joyce as well as to others. I'm also a retired business executive and former Board Member, President and facilitator of a local chapter of DBSA as well as a Florida State appointment as a Guardian Advocate. I do not endorse, promote or advertise for any therapy, product or company. I do share our personal experiences, my research and knowledge in the hope it might benefit someone or do I give advice as to what one should or shouldn't do. I extend my best wishes for wellness to one and all and all the good you’d wish for yourselves.
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