ET, Balance, and Falls

Seven people with ET that I have known have died from falls. While the cause was not exclusively ET, it was a factor in all cases.  Personally, my balance and gait have gotten worse. It is a combination of my ET’s progression and the consequence of the surgical treatment of my ET.

I was proud of myself because I had adjusted my balance to prevent falls. I was using my hands constantly while I walked or rose. I thought it was working, but it wasn’t. I had a very serious fall going up the stairs in which I seriously bruised my kidney. I was doing just about everything wrong!

Realizing that, I did something. First, I joined a water aerobics class. Many years ago, Jan Helper in the Columbia ET support group had told the group how well water aerobics had helped her. Finally, I started and immediately saw the advantage of doing it – the buoyancy.

Second, I started doing neurological physical therapy – with the emphasis on neurological. The practice I go to only handles people with neurological disorders. My young physical therapist fully understands movement disorders and their effects on the body. While she is nice, she is tough – constantly pushing. I had Marine Drill Instructors in the Navy; she is nicer but pushes just as hard as they did.

When I started, I walked like an Emperor penguin. I leaned forward – my shoulders were tense. My arms were out to the side, particularly my right one which was tense. I used my hands for everything. I took short steps. I needed to use my core to walk properly. I needed to relax, specifically my shoulders and arms. I had to quit using my hands and learn to rely on my legs.

It is not easy to learn how to walk again. It takes a lot of repetition and strengthening of the legs. Of real importance is to relax, relax, relax.

When my therapist learned I did the water aerobics from 9-10am twice a week, she scheduled me from 11:30-1pm on the same days. It takes me the intervening time to change and drive. An important part of the therapy is that I must be tired. At the end, particularly on Thursday, I am!

 It is a long-lasting effort. I must remain committed and persistent.

As I have said repeatedly, everyone’s ET is unique. This may or may not be right for you. However, alternative treatments for ET do work!

Peter Muller

Essential Tremor Observations, by Bruce

Impact of Severe Influenza on Essential Tremor

Leading up to and during a very severe influenza illness, I noticed that my tremor was triggered more often and with greater intensity.  While I have been fortunate that my tremor has not been as severe as many others, this was not the case during my illness.  Simple tasks, such as eating, holding a cup, and writing were even more difficult.  Also, before the flu symptoms appeared, tremor triggers became more noticeable but without an apparent cause.  Tremors continued to increase as the illness progressed.  For two days my sense of balance would occasionally be disrupted, though this could have been due an unnoticed inner ear issue.

In the two months since the flu, my tremor has decreased but not to their previous levels.

This raises questions:

  • Did the flu virus itself have a direct physiological impact on tremor triggers?
  • Or did it simply raise the stress factors in the body that can trigger the tremor?
  • Regarding recovery, can major life events that create excessive stresses have a cumulative effect on a person’s tremor over time?

Pets and Their Tremor

Some cats we have owned over the years (generally, those with small statures) have shown a body tremor when full stretching while standing.  Age was not a factor. However, this has also appeared lately in our son’s elderly dog when he stretches.

Question: 

  • Is this a pattern and a clue to a possible mechanism that is inherent and a necessity for survival (reaction time signals), yet can become dysfunctional through age or excessive stress?

Could Cerebral Spinal Fluid Imbalance Be Linked to Tremor?

MRI focused ultrasound

Bruce, at a HopeNET meeting, shared this story:

A friend in the Midwest recently brought up a conversation with her older sister who had onset of balance, mild cognitive, and tremor problems in the past couple of years.  Her sister’s doc ran a brain MRI after she fell and struck her head last week and diagnosed her with cerebrospinal fluid (CSF) build up in the brain’s ventricular system.  This can apparently cause her symptoms.  It should be mentioned also that she was previously diagnosed with spinal stenosis (narrowing of the spinal canal).  Apparently, CSF problems can be hereditary in varying degrees.

This story led me to question, could CSF imbalance, including from birth, be an element in the onset of ET?  CSF appears to have an influence on the effectiveness of the brain and the spinal cord.  https://en.wikipedia.org/wiki/Ventricular_system

Remembering Sara

I met Sara about 5 years ago when she came to our Silver Spring, Maryland support group meeting with her sister. I’ve known a number of women with severe voice tremor. Sara was the worst case ever. I could not understand a word she said. Sara was very helpful when HopeNET made its presentation to Congressional Legislative Assistants for Healthcare. The Congressional staffers were awestruck when Sara got up & spoke. They saw firsthand how severe Essential Tremor can be. Sara came to a few more meetings but soon stopped coming. Recently her sister contacted me & told me Sara had died in a nursing home. She had choked to death in the middle of the night.

Lou Devaughn in our Falls Church, Virginia group was the first person to bring the connection of swallowing & ET to my attention. Since then, I have found anecdotally that it involves a lot of people who have ET.

In speaking with Dr. Paul Fishman of the University of Maryland, I asked about the connection. He said that he felt that there was one. Of interest, he said that currently the cause of death for Parkinson’s is pneumonia & choking.

I have heard repeatedly that ET is benign – you don’ t die from it. I now take exception to that statement. I believe Sara died from ET. I wanted so badly to be of some help to her. I’ve thought a lot about her since I found out she died.

 

“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

Hi ET Community,

December 1 will be a watershed event for HopeNET & Essential Tremor. In addition to the play, Swimming with Kate, which is our fist step in increasing awareness of ET especially among doctors, there will be a distinguished panel of doctors – Drs. Haubenberger & Fishman. In August 2016, Focused Ultrasound was performed on me. Dr. Fishman was the neurologist. Dr. Haubenberger has subsequently studied the result. He & his team then created a poster. They displayed the poster at the annual Movement Disorder Society in June in Hong Kong (find it attached). As you can see, it has my MRI’s taken prior & post the procedure. This is your opportunity to ask questions about this treatment as well as others for ET.

Don’t miss this!

— Peter

MDS_Poster_V1.5

 

Experts Review Surgical Treatments for Essential Tremor

We are fortunate that ET experts recently reviewed surgical treatments for ET to write this paper entitled Surgical Treatments for Essential Tremor. They include DBS (deep brain stimulation), FUS (focused ultrasound surgery/ablation), SRS (stereotactic radiosurgery), and radiofrequency ablation treatment. The authors detail when surgical treatment is an option (when tremor symptoms are severe) plus they cover complications and outcomes, including limited effectiveness and possible need for repeat or additional surgery. Details are also included for those with voice and head tremor. Patients may have tremors bilaterally, that is on both sides of their body, however certain surgeries are found to have better outcomes if the procedure is done unilaterally, meaning the outcome affects only one side and is therefore a partial solution.

For a better understanding of what is happening in the brain of someone with ET, read the paper’s introduction. It explains how the tremor signals travel along a communication loop in the brain known as the corticobulbocerebellothalamocortical loop. It also tells how the surgeries for ET target the ventralis intermedius (Vim) or the posterior subthalamic area (PSA) right below the Vim, and surgical stimulation in these spots disrupts the signals in the loop, lessening tremor.  If we can locate a visual image of this loop we will post it! The authors’ key issues, conclusions and expert commentary are worth reading especially for those interested in surgical options with supporting data. Overall, the authors, Elble, Shih and Cozzens comment on the rapid improvements being made in surgical treatments.

This paper was supported in part by a grant from the Illinois-Eastern Iowa District Kiwanis Neuroscience Foundation.

Surgical treatments for essential tremor

Research Study Focus on Improving Treatment of ET with the Use of Mobile Devices

Five months ago in October New Touch Digital, LLC, a software company with a vision for improving Essential Tremor treatment through technology, came to several Maryland ET support groups to express their research study ideas. By collecting measurable data about ET symptoms on tablets or computer devices, information on a patient’s symptoms could be conveyed to the patient’s neurologist.  This data gathering process is understandably important since ET symptoms are not always readily apparent at a short doctor’s office visit. See New Touch Digital’s easy-to-understand description of the research by clicking here.  They are about to embark on their study in the D.C. Metro area and plan to select a limited number of participants, therefore the participation inclusion criteria for the study is given below.

ET inclusion criteria and time line