“Swimming with Kate” Play Well Received

The feedback from those who were there on Saturday for “Swimming with Kate” has been universally very positive. As one woman related to me Mary Cae, the actress, was “right on”. The woman also said that the emotions Mary Cae expressed about living with her ET, the anger & frustration, were identical to what she has felt. The performance was gut-wrenching at times. I felt that it broke through the barrier that many doctors place before us – “you shake a little bit, no big deal, here’s a prescription for propranolol“. In other words, it clearly showed the emotional strain that most of us face in our everyday lives in dealing with ET.

— Peter

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

Meals on Wheels

Sandwich cut in halfMy shaky hands make it increasingly tough for me to prepare my own meals, and I was startled when a friend suggested an obvious source of help – Meals-on-Wheels. They now deliver two meals at about 11am every day except weekends, and I pay them monthly what amounts to about $4 per day. What do I get? An entree with two vegetables wrapped in a tray and aluminum foil that I transfer to a dinner plate and microwave, and a nice sandwich saran wrapped to preserve its freshness. Add to that a container of skim milk, a roll and butter, a dessert, fruit, and sometimes a mixed salad and dressing. The wonderful friendly people who deliver are also a daily check on the well-being of my aging self. How did I get started? I went on-line and was referred to the local chapter. When I told the pleasant receptionist about how my shakes often caused much of my meals to end up on the floor (you know about that) and that I take a blood thinner that makes using knives a potentially bloody experience, she was happy to sign me up for Meals-on-Wheels, and my deliveries started the next day. It’s been a great help and I am most grateful to them.

Walter Ebmeyer

http://www.mealsonwheelsamerica.org/

What Essential Tremor Is Like For Me

Sheila belongs to a Silver Spring, Maryland Essential Tremor support group, and it has been a journey for her in terms of figuring out what she has. She has been diagnosed with Essential Tremor, Parkinson’s Disease and more recently another neurological condition for some non-tremor symptoms. She has tremors in her hands, legs and chin and most of her doctors say they haven’t seen a chin tremor before. If she’s standing she’s fine for a few minutes … it’s almost as if the tremor has to “warm up” before it gets active. It’s upsetting to her that doctors don’t know what she has, but she guesses they’re doing the best they can. Fortunately she usually forgets about the tremor when she gets talking with someone.

Watch video of Sheila discussing her ET.

 

Mary Lou is a part of a Silver Spring, Maryland support group for Essential Tremor. She has a tremor in her head and voice. The head tremor came later in life whereas her first indication of tremor came at age 16. As a teen she didn’t say anything to anyone because she thought it was something wrong inside of her. In her career, she had the good fortune of working where the people were comfortable with her tremor, but once computers came out it became more difficult using a mouse and different kind of keyboard, not as easy to control. Then her voice tremor started affecting her, and some people couldn’t understand what she was trying to say. At age 50 her eye doctor mistook her tremors as delirium tremens and asked her how much she had had to drink. She told him she had had nothing, and he believed her and recommended she see a neurologist for a diagnosis. She’s frustrated that there isn’t a medication designed for Essential Tremor.

Watch video of Mary Lou discussing her ET.

 

Lisa Gannon
Silver Spring Support Group Member

 

Personal Stories – Deb, age 73

Deb’s ET began about 5 years ago. Before retiring from the Navy she had an encounter where the updraft from a landing helicopter picked her up, flipped her over and dropped her on the ground, 3 times.  The ET started about a year after this as a slight tremor in her left hand, her writing hand. It spread more recently to the other hand, and the left hand has gotten worse to where people notice it now. The more she concentrates on not spilling, she spills, ie, when eating a bowl of soup. The soup does not make it to her mouth unless she uses two hands. Deb sings and also notices the tremor impedes her holding sheet music in her hands.

She has hit her head about 5 times in life and has had 3 concussions. Long before the helicopter accident she was in a terrible car accident, in a stopped car that was hit by a car moving at 85mph and threw her vehicle 50 feet. Deb had two compressed discs in her spine, the cranial and lumbar.  However, she definitely attributes the helicopter accident to the onset of her tremor. She went to her neurologist for the tremor about a year ago when it became more noticeable and went on Primidone. She continues to take it but finds it doesn’t seem to work.

She doesn’t recall anyone in her family having had a tremor. She has had her frustrations from ET, such as her writing became so bad that when her bank once asked her to write to get money out, the amount she wrote out was not even legible. Also she tires more easily because of trying to hard to control the tremor.

Before Deb retired she worked in a laboratory and did precise work that required her to be steady. She was thinking of going back to work in the medical field she was trained in to make some money but says it wouldn’t be possible now with her tremor because it makes her too unsteady.

In term of coping, she finds wine calms her tremor down so she will have some at dinner, 3 champagne glasses full. But while wine works, whiskey does not. She has started to do stretching exercises and wants to try Tai Chi. The idea is to stabilize the impulses from the thalamus. She hopes NIH will have their octanoic acid study resume again so that medicine will be made available that mimics the effects of alcohol on tremor without the drunken aspect.

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:
Charley
Sheila

Dale
Doris
Deb

Personal Stories – Dale, age 52

Dale’s symptoms started around age 40 when he noticed a tremor when his hands were in motion. It was initially sporadic and he would shake more at times than at other times. By his late 40s the tremor had become worse, he noticed his fingers would tremor, and he believed anxiety and caffeine made it worse, but not always. His left hand was worse than the right. In Dale’s family his father had essential tremor and his sister has it mildly.

Dale saw a neurologist for a diagnosis at the age of 42 and was told it was benign essential familial tremor and it was nothing to worry about health-wise but it could be a nuisance. He was prescribed Primidone which did not work for him. Since then, for 8-9 years, he has been taking Propranolol. He was also prescribed medicine for anxiety which runs in his mother’s family and takes Clonoxopan as needed (hasn’t taken it for a couple of years).

He does not think his ET was a result of any trauma and does not have other movement disorders, but he did experience a softball injury and underwent surgery, had scarring, and then years later a seizure which indicated abnormal electrical activity, but he was told this was not related to his ET. He has no unexplained symptoms that could relate to ET.

Dale does get self-conscious and embarrassed when others see his tremor and while they might be understanding of the condition, they wonder if the shaking means he is nervous. He says his writing is a scribble. He’s been told exercise can help and alcohol can help but knows alcohol is not the solution. He experiences frustration but not depression, counting himself fortunate to look at the bright side of life.

He wonders why there aren’t medicines that really work .. the Propranolol he takes does not work completely.

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:
Charley
Sheila

Dale
Doris
Deb

Personal Stories – Charley, age 63

His onset of essential tremor symptoms was at 12 years old when he noticed he fumbled. His ET got bad quickly, he doesn’t know how extreme it was but certainly he cannot hold peas on a fork. His left hand is worse than his right but fortunately he is right-handed. As a teen and in college years he was an actor and was typecast as a drunk or anything that involved a spastic character. In later years, the past 5-6 years, his voice is quivering when he sings. One thing he found interesting is that he has to urinate frequently in the middle of the night , saw a urologist for this symptom and the urologist thinks it has a neurological cause and is related to the tremor.  He has been on Primidone but has also tried other things like Resveratrol which is naturally found in red wine. He found some red wines would work better like the sweet ones. Also, a shot of a mixed drink will work for a short time to alleviate the tremor.

Around 1990, Charley’s occupation was a house painter and one of his customers was a neurologist who termed Charley’s tremor “familial benign essential tremor”. Up to this time, Charley said there was no name that he knew of for the condition. Mentally the ET has had no real effect on him whereas emotionally at times he gets so frustrated that, as a teacher, he has avoided going to the teachers lounge to eat. He says to his new students as a way of introduction and explanation about his shaking that he’s not afraid of them, that he has this condition.

He shakes more when he knows he has to do something very dexterous (whether by himself or with others). The tremor is enhanced around others. Recently, at his third son’s wedding, he was convinced by others to take a few shots of alcohol beforehand since he knew he would be singing and speaking. As a result he was fine and not effected by tremors at the wedding. When Charley works out at the gym, if he works out like a bandit someone will come over, both during and after, and ask if he’s okay. Other times he notices the tremor is when he writes checks .. they are not legible and has had his signature rejected because it did not match.

In terms of what Charley has tried to alleviate the tremors, he took advice from a Hungarian doctor who focused on ketones in the body, and tried a long-term fast where he had nothing for 3 days, then water for 3 days, then raw fruit juice mixed with oil. He went as long as 48 days fasting. He also used Pat Robertson’s weight loss drink that he adapted for himself. He noticed that after maybe 7 days of fasting he lost his tremor.

For 19 years he has worked in the county school system and recently someone wanted to meet with him for accommodations, to make available a mobility device you can speak into which will automatically write what you say.

In Charley’s family, his mother-in-law had ET and wife’s sister’s son has ET and Parkinson’s Disease.

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:
Charley
Sheila

Dale
Doris
Deb

Personal Stories – Sheila, age 70

We are starting a new series of personal stories of people’s experiences with Essential Tremor, generally including age of onset, symptoms, neurologist’s diagnosis, medicine prescribed, alternative therapies tried, how people respond to their ET, how ET affects them mentally and emotionally, coping, and family history of ET.   The individuals interviewed below are from ET support groups.

Sheila, age 70
Sheila’s tremor started with a couple of episodes while living in Korea around 2006. She went to the emergency room – they did an EEG but symptoms had gone away by the time the doctor saw her.  She remembers trying to sleep and feeling the tremor start, without knowing why.  Seems when she gets urinary tract infections, it triggers the tremor. If she gets busy in the morning and can’t find time to eat, the tremor gets better. She saw a neurologist for the first time in 2010, and Propranolol was prescribed. Besides Propranolol she has had other prescriptions but has taken nothing that she’s been comfortable with.  She gets angry about the tremors sometimes wondering, “why is this happening to me” and feels sorry for herself. Her hands started trembling first then her lip started trembling … emotions  such as those caused by relationship conflict are a trigger for a tremor episode. She takes Clonazapam, prescribed for depression she attributes to the tremor.

Less than a year ago she was diagnosed with Parkinson’s and started taking medicine for that. She also takes Zanax which was prescribed for anxiety related to the tremor, and it is the only medicine that really has helped her tremor. She feels she’s been around the mulberry bush several times with doctors trying to see if something will work.

None of her friends or family has acted adversely to her tremor.

Next week’s story – Charley

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:
Charley
Sheila
Dale
Doris
Deb