Breaking News…from the ietf

We interrupt Tuesday Trivia to bring you a special message from ietf…

March is National Essential Tremor

Awareness Month

What is Essential Tremor?

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. It is often confused with Parkinson’s disease although essential tremor is eight times more common.

From essentialtremor.org website

I have essential tremor. Here is my story:

Sometime in the 1970’s my sister asked me, “Why is your arm twitching?” Since I had always seen her as a bit of an alarmist, I shrugged it off and forgot about it. Whether that was a precursor to my Essential Tremor (ET) I would never know as I was not diagnosed for another 10+ years.

When I first visited a neurologist, I was around 50 years old. The doctor was a pleasant, small older woman. There were only two rooms in her suite, a waiting room and her office. The rooms were drab and dimly lit with no windows, no receptionist, and no other patients. It was unlike any doctor’s office I had ever visited. She was kind and compassionate; we talked about my symptoms and family history. She did the typical (as I have come to know them) tests – draw a spiral, left hand, right hand; touch my finger, touch your nose; tap your foot, left then right – and explained ET. She diagnosed ET.

I saw her several times, then she retired. My tremor at this point was minor and exhibited only in my hands. After trying several different medications, we found it was easily controlled with propranolol. After she retired, I did not see another neurologist right away and my general physician managed my prescription. Eventually my tremor progressed, and he referred me to the local medical university’s Neurology Department. The treatment I received there was borderline incompetent, attended primarily by residents. After a couple of visits, I never saw the overseeing physician again. The residents never seemed to know what ET was or how to treat it. I kept going back because I felt it was my only option. Finally, on my last visit, this arrogant female resident came in and told me to quit drinking, then walked out of the room. She obviously was so ill informed that she didn’t know alcohol can temporarily stop a tremor.

Years went by before I saw a neurologist again. I tried to ignore it. I thought if I ignored it or didn’t talk about, nobody would notice. I was embarrassed and thought people were thinking the same as the female resident. My tremor continued to get worse until I was no longer able to perform my administrative support functions. It was January 2015 and I was 66. I retired.

My husband and I moved to South Carolina in February 2016. The search for a doctor began almost immediately due to two bad falls where I hit my head. The general physician I found was compassionate and caring; she didn’t know very much about ET but was always eager to hear about my experiences. She promptly got me a referral to a neurologist. An appointment was scheduled for December, several months away. I anxiously waited. By this time, I needed two hands to drink from a glass, could not write my name, and my voice was shaky and weak. My husband explained my condition to people we met.

Two days before the appointment I received a phone call from the doctor’s office. My appointment was cancelled, the doctor was retiring within a week; there was no referral. It was a disappointing Christmas.

After more phone calls my doctor was successful in getting me another referral and I got an appointment almost immediately. I met with the doctor and he spent over an hour discussing my past and current history and a possible path for the future, that future involved DBS (deep brain stimulation) surgery. This was beyond frightening. It was impossible to think about having brain surgery. But, with the encouragement and assurances from my husband and our new friends, I agreed to talk to a surgeon. I met with him and agreed to come back with my husband. Apparently the surgeon’s understanding from our meeting was different from mine because when we went for the appointment he was prepared to put the screws in my head for the helmet I would wear during surgery. Maybe it was better I did not have time to ponder that exercise.

With that done all the testing began, MRI’s, CAT scans, testing for Parkinson’s, blood tests and surgery was scheduled for May 1, 2017. I would spend one night in the hospital after the surgery for observation and then go home to heal. In June I would go back to have the DBS programmer implanted in my chest and all the wires connected. The DBS would control my left and right sides by two probes and  the programmer.

Surgery took over 5 hours; I needed to be awake for a large part of the time so they could test and make sure the probes were being placed correctly. No words can describe what a fascinating experience that was for me. The surgery was successful and everyone was very pleased with the result. Recovery seemed slow and was not without some concern of infection, fortunately none developed; the incisions healed, my hair grew back.  It was time to start programming the device.

I would spend the next 2 years working with the neurologist and his staff getting my DBS programmed and tremor controlled. My tremor would progress between visits and adjustments were needed every 3-6 months.

In October 2019 my husband and I moved to the beach. Since it would be a 3½-hour drive back to my neurologist, he referred me to someone closer. While it is about a 2-hour drive, it is important to have someone knowledgeable with my care.

At the present time I have a head tremor and continue to have some tremor in my hands. Adjustments continue to be made to my DBS, and we are revisiting my medication. After taking 60 mg propranolol twice a day for years, it has been cut to once a day with hopes of controlling my tremor with the DBS. Botox was suggested as a treatment for my head tremor; but because it would have to be injected close to the DBS wires in my neck, it has been ruled out. Head tremor cannot be controlled by the DBS.

There is no cure and there are no medications specifically for ET. I accept my condition and manage as best I can, still finding it difficult to start the conversation, “I have essential tremor.” I feel fortunate that it is not a life-threatening condition; and I am able to enjoy life at the beach, gardening, golfing, and writing a blog where I practice my newest interest – creative writing.

What can you do?

Visit the Inernational Essential Tremor Foundation website to learn more. If you know someone who may have essential tremor, ask them about it. They may be as reluctant as I was to admit it or discuss it. Share my story.

2 thoughts on “Breaking News…from the ietf

  1. Gosh Judy. I’m shocked at the level of care you received at the beginning. It must have been so frustrating and maddening for you, not to mention worrying!
    This brain surgery you had is quite recent. That’s a bit scary, but isn’t it wonderful what can be done when you have the right person for the job!
    It’s not that long ago that I was watching an interview on tv with a woman who had brain surgery. I couldn’t believe it when she said she was awake during her surgery. I didn’t think it was possible.
    Judy it’s great you’re accepting of your condition and grateful it’s not life threatening. Enjoy your activities. Golfing and beaching…..hey, thats the life! 🙂
    Ps. You’re a wonderful writer too.

    Liked by 1 person

    1. I am fortunate that I chose the right city to move to and found very good doctor’s there. Being awake during my surgery was a bit of an out-of-body experience; I don’t know how they do it. Perhaps that’s a topic for another story. Thank you for your compliment. It’s always encouraging to get those from the experts.

      Liked by 1 person

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