Act Now and Give Your Public Comment on Focused Ultrasound Procedure

If you suffer from Essential Tremor and are interested in receiving the non-invasive procedure Magnetic Resonance guided Focused Ultrasound (MRgFUS)……


National Government Services (NGS Medicare), the Local Medicare Contractor that oversees benefit administration for Medicare beneficiaries residing in the following states: Connecticut, Illinois, Maine, Massachusetts, Minnesota, New Hampshire, New York, Rhode Island, Vermont, and Wisconsin recently published a “DRAFT” Local Coverage Determination (LCD) on the topic of MRgFUS for essential tremor. While NGS feels the technology is “promising”, they came to the conclusion that they will NOT consider this procedure to be a covered benefit. This is very disheartening as MANY people who suffer from tremor could benefit from this procedure.

NGS Medicare is allowing public comments on the subject through November 30, 2017. Without significant written comments by the public, the draft policy will likely be finalized in its current unfavorable decision.

If you would like to submit comments, encouraging NGS Medicare to provide coverage for its Medicare beneficiaries, you can do so by sending them electronically. Please reference the following in your subject line: Re: Magnetic Resonance Image Guided High Intensity Focused Ultrasound (MRgFUS) for Essential Tremor: DL37421 

The email address for submitting comments is:

For Family Members of Those with ET … A Clinical Study at Yale

Yale University is conducting a study to better understand the lifestyle habits of essential tremor (ET) families. The researchers are looking for brothers, sisters, and children of people with ET. In order to participate, individuals must not have ET, be at least 40 years old, not have Parkinson’s disease or dystonia, and be willing to undergo a 2 hour health evaluation in your home. This will include, questionnaires, a formal assessment of your health and diet, a videotaped neurological exam, and a blood draw.

This is a nationwide study, and the researchers will travel to meet with you. There are no costs associated with your participation; in fact you will be compensated for your time.  If you are interested or have any questions, please call (203) 785-6169 or e-mail

Is Long Term Care Coverage an Option for Those with Essential Tremor?

Beware The Insurance Companies

In January of 1993, I (Wayne Givens) was employed by the Eastman Kodak Company and a group Long Term Care (LTC) insurance policy was offered to employees at an attractive rate.  I enrolled in a policy for myself and also one for my wife with Metropolitan Insurance Company (MetLife).  The premiums were $50 per month for each of us.  The policies when used would provide for $100 per day maximum for an assisted living home or full skilled nursing home and/or $100 per day maximum for in home care.  I am 78 years old and have been dealing with ET (severe tremor with my hands) for almost 25 years.  In January of 2016 my wife of 54 years was diagnosed with severe cognitive impairment/dementia.  After many discussions with our son and daughter, we decided we could no longer live independently.  With their help, we found an assisted living home that would meet our requirements (Morningside House in Leesburg, VA).  After a thorough review by MetLife, we both qualified for our LTC policies and moved into Morningside House in May of 2016.

I quickly learned that a claim filing for the actual expenses for each policy was required every month.  With both policies, the $200 per day covered about 85% of our expenses at Morningside House. The major reason for the monthly filings is to avoid paying taxes on the monthly payouts.

Everything was going along well but then on June 30, 2017 I received a phone call from MetLife informing me that after a medical review my benefits (not my wife’s) were being terminated effective July 1, 2017.  I was told I would receive a letter in the near future detailing the reasons for this action and also the process to make an appeal.  I was shocked and told the person calling that this was not fair and to take such action with no advance notice was unethical.  She told me that MetLife had the right to take such action in accordance with my policy.

When I received their letter, I learned that severe cognitive impairment/dementia automatically qualifies for LTC benefits but that it was not as clear for someone with ET.  They focus on ADL’s (activities of daily living) which are dressing, eating, bathing, transferring, toileting, and continence.  As most of you know with ET, there are many gray areas with how these areas are affected for each of us.  They singled out the fact that I was still driving my car was an indication that my tremor must not be too severe.  There was a clear lack of understanding as to what problems ET can cause.

In my appeal, a letter from my Neurologist pointed out that with ET when your hands are at rest (as in holding onto the steering wheel) there is no tremor which is not true for Parkinson’s Disease.  Peter Muller wrote a nice email for my appeal pointing out that he has conducted support group meetings for people with ET for a number of years and hundreds of people with ET have driven to these meetings over the years without a problem.  I reached out to 4 of my doctors to see if they would write letters in support of my appeal.  They all very nicely responded, and I know these were very helpful for my appeal.  I submitted my appeal on July 20, 2017.

After many phone calls and several more letters including one from the Director of Morningside House to MetLife,  I received a phone call from my appeal coordinator at MetLife indicating that my appeal was approved and that benefits were being reinstated retroactive to July 1, 2017 and that I would receive a letter to make this official.  I thanked the person calling me and felt like asking her if an apology was being made by MetLife.  I did not ask this and no apology was included in the letter.  I did ask if I had to go through this ordeal every year and the answer was that a review will be made each year.  We will see.  Insurance companies do not like to pay out on their policies and this is one example of that fact.


— Wayne Givens