Balance

ET, Balance, and Falls

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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

Could Cerebral Spinal Fluid Imbalance Be Linked to Tremor?

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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

Highlights from Oct 6th ET Support Group Meeting – Columbia, MD

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Peter opened the meeting by telling us about a new digital technology firm called NEW TOUCH, who has created an introduction powerpoint for the HopeNet community that will soon be on the website blog at thehopenet.org.

Peter said things are happening now, things are moving along. We [HopeNet] received a $10,000 check to be used for funding research here [Columbia]. We will be the test subjects for a study.

Peter told us about a conversation he had with Dr. Haubenberger who told him about a new study about how alcohol can help with Essential Tremors. Harvey mentioned that he had participated in an alcohol study for E.T. at NIH, and that the University of Maryland has a balance study.

Comments and questions throughout meeting:

Kinetic jerk as opposed to a tremor.

How does caffeine affect it?

There is a connection between cerebellum and fight or flight.

ET is heritary.

Can there be ET in the eyes? a movement disorder in the eyes. The visual cortex is involved in the loop that causes ET.

What is the biggest problem we come up against? Doctors – yes doctors.

Cranial tremor is more prevalent in women then men.

There will not be a meeting in November. We will meet again on the first Friday in December which is the 1st. The discussion will be about New Touch technology by the people from New Touch. Also, we are not funding the New Touch team.

There is no date set yet for the physical therapy study that Dr. Janice Sallit will present regarding balance and gait is. Dr. Sallit has to complete her “proof of concept” in order to get the funding for the study. Peter is working with a lawyer to put together the process & procedures for setting up the grant.

Someone asked Peter how he is coming along after being assaulted earlier in the summer. Peter said he is scheduled for 2 more surgeries on his right eye. One is to remove fluid, and the second one is cataract surgery, still no arrest.

Then we went around the room so each person can tell of any problems they are experiencing.

Mary Jane – has now developed a tremor in her left hand, still has trouble eating and uses a spoon, still has trouble writing, so she now prints when she can. She does not have any problems using the computer. She said she is open to having the focused ultrasound procedure done.

Ellie – This is Ellie’s first visit to our meeting. She said she has problems typing [double typing]. Dave suggested she change her keyboard setting to either sensitive or non-sensitive.

Harvey – spoke about the sensations he felt when he had the FUS done. He said he felt like he was elevated, with the head lower than his feet. Harvey had a newspaper article regarding a Canadian study having to do with ET.

Les – Les said that the tremors in his hands are getting worse, and so is his gait. Peter said if you walk on uneven surfaces [i.e. grass, sand, etc.] it becomes an issue for the feet to send messages to the brain, therefore causing you to have problems with your gait.

Jonathan – Jonathan re-interiated to us about the time back in the summer when he went on a trip and fell ill. The intravenous antibiotics they gave him in the hospital caused his tremors to diminish over a period of time. He was able to stand straight, lock his knees, and hold his head up. Something he had not been able to do in a very long time. Unfortunately, the effect is wearing off and now the problems he had with his gait before falling ill is coming back. Whatever the antibiotic was that the doctors had given him, may just be a lifeline for people suffering from E.T.

Doris – Doris told us that the tremors are getting worse. The medication prescribed by the doctor just exacerbated her condition. She now had a bottle of Primidone that she cannot use.

Judy – This is the first time Judy has attended our E.T. meeting, so a big shout-out welcome to Judy. Yeah!!

Judy told us that she has tremors in her throat, head and neck. She has had them for 35 years and no doctor can help her. It was diagnosed as spasmodic dystonia and Essential Tremors. Kathy went to Google while typing up these minutes, and typed in vocal tremors, one of the listings that came up was voicedoctor.net. In addition, Judy said the tremors are now starting in her hands.

Peter said she got bad advice and knew immediately when she came in and spoke that she had essential tremors in her voice. Also, he told us about a study in Syracuse of octanol and voice tremors. Kathy asked Peter what octanol was and he said it is the 1-Octanol. Google search -Octanols are alcohols with the formula C8H170H. A simple and important member is 1-Octanol, with an unbranched chain of carbons.

Dave – Dave brought in a special pen that he got from a website titled Pen-Again. The pen is made to stabilize your writing when using a pen. Another Google search and located it. Also, it is available as a pencil. You can find it on SmileAmazon and make a donation to TheHopeNet.com at the same time.

Kathy – Kathy brought in a magazine from University of Maryland Baltimore Washington Medical Center and gave it to Peter, with an article about Essential Tremors, listing the names of doctors some of you are already familiar with. She then mentioned another article she saw in the Howard magazine regarding boxing and Parkinson Disease. Unfortunately she did not bring it in. And then she had a question about pets and essential tremors. It seems her 11 year old poodle mix has developed a tremor in her hind leg. Can pets get essential tremors?

Peter said he did not see why not, and suggested she contact University of PA. They have a pet medicine department.

Then, Peter asked Ellie and Judy if they found the information helpful. Both were impressed with the information that was discussed and the helpful suggestions that were given.

Remember no meeting in November, next meeting December 1, 2017.

Respectfully submitted,

Kathy McElroy

 

Is Having Essential Tremor a Real Risk for Falls?

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By Dr. Janice Sallitt, PT, DPT, NCS / JVS Rehab.

The answer to the above question is not a simple yes or no!

As is often the case, it depends on several factors: one of them being where the tremor is located in an individual. The most current medical view is that Essential Tremor (ET) is a syndrome, with tremor being the most obvious symptom. In some cases, it may be the only symptom.

Recent research has shown that tremor of only 1 arm did not show increased risk for imbalance; tremor of the head, jaw, and/or voice did show increased imbalance and fall risk.

Another factor in increased fall risk and/or increased imbalance in a person with ET is age. Persons with ET who are older than age 70 also correlated with increased imbalance and higher fall risk.

At this time, there is little evidence to show the effects of a physical therapy balance/fall prevention program in people with ET; however, in other neurological syndromes, there is a significant amount of evidence over the past 2-3 decades showing decreased fall risk. There is an assumption that, if studied, there would be a high probability that a similar physical therapy program to address the balance deficits would help to lower fall risk.

I hope you find this information helpful and that we can begin much needed studies in this area of ET.

(The above information was a summary of my June 2nd talk to the ET support group in Howard County, MD.)

Your Donations Sought to Support Essential Tremor Projects

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For the past two years. HopeNET has not actively solicited donations. We have been able to do so because we are an all volunteer non-profit.

However circumstances have changed due primarily to two projects:

* A formal study of Essential Tremor and balance and gait. There has been very little research on this issue even though it is a critical issue facing many who have ET. The study is tentatively scheduled to begin this fall. It will be conducted by Janice Sallitt, PT, DPT, NCS. She specializes in Orthopedic & Neuro PT. The study will center on HopeNET’s Columbia, Maryland ET support group.

* In an attempt to increase awareness of Essential Tremor, Mary Cae Asay is going to produce a play about Katherine Hepburn. Because of Mary Cae’s ET, she can make her voice sound identical to Hepburn’s.

More details will follow. These are very exciting times for HopeNET. Please continue to follow our Facebook and Blog as HopeNET continues to take active steps aimed at improving the lives of those with Essential Tremor.

Your donation will be greatly appreciated.

Peter

Personal Stories – Deb, age 73

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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

Balance Problems

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I’ve been seeing a neurologist regarding recent episodes of balance problems. The situations were similar in that I suddenly felt like I was leaning uncontrollably to the right and fell. No dizziness, more like a sudden weakness, pulling sensation.

When first I saw the neurologist, he didn’t see anything obvious until I mentioned I would also feel faint during a deep coughing fit. Further exam found a significant drop in blood pressure when I’d turn my head in one direction with the arm over my opposite shoulder. Scans found the carotid arteries in my neck a little more constricted than normal, no abnormalities in the brain. Apparently, the condition is not unusual.

What interested me about a possible relationship between tremors, a loss of balance, and the diagnosis on me is:

  • My son is a 2nd Degree Black Belt in American Kenpo and one of the more serious submission holds taught to law enforcement and military involves squeezing each side of the neck along the carotid artery. Properly positioned, it can bring unconsciousness in only a few seconds and death very quickly thereafter. Much faster than a typical loss of blood flow. Apparently, a major nerve pathway also runs along the same line.
  • Since my exam and scans, I’ve had a sudden loss of balance walking up the stairs accompanied by my feet becoming uncoordinated / tangled so I was unable to recover in time. Very unexpected.
  • My tremor and memory seems a bit worse this past year.
  • Researching online, I found that Vasovagal Syncope can also be brought on by stress (tremor psychology?) resulting in a chemical imbalance in the body between adrenaline (higher heart rate) and acetylcholine (lower rate).
  • Carotid Sinus Hypersensitivity (from turning the head) has apparently been observed to also include leg jerks in some people.
  • Nerve impulse can cause the muscles along the carotid artery to constrict.

My wonder is whether tremors could be influenced / affected by constrictions along the carotid arterial / neural pathway. Either as a cause or through reaction feedback.

Thoughts on Balance from Bruce Edwards, Support Group Member

Balance Problems

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I’ve been seeing a neurologist regarding recent episodes of balance problems. The situations were similar in that I suddenly felt like I was leaning uncontrollably to the right and fell. No dizziness, more like a sudden weakness, pulling sensation.

When first I saw the neurologist, he didn’t see anything obvious until I mentioned I would also feel faint during a deep coughing fit. Further exam found a significant drop in blood pressure when I’d turn my head in one direction with the arm over my opposite shoulder. Scans found the carotid arteries in my neck a little more constricted than normal, no abnormalities in the brain. Apparently, the condition is not unusual.

What interested me about a possible relationship between tremors, a loss of balance, and the diagnosis on me is:

  • My son is a 2nd Degree Black Belt in American Kenpo and one of the more serious submission holds taught to law enforcement and military involves squeezing each side of the neck along the carotid artery. Properly positioned, it can bring unconsciousness in only a few seconds and death very quickly thereafter. Much faster than a typical loss of blood flow. Apparently, a major nerve pathway also runs along the same line.
  • Since my exam and scans, I’ve had a sudden loss of balance walking up the stairs accompanied by my feet becoming uncoordinated / tangled so I was unable to recover in time. Very unexpected.
  • My tremor and memory seems a bit worse this past year.
  • Researching online, I found that Vasovagal Syncope can also be brought on by stress (tremor psychology?) resulting in a chemical imbalance in the body between adrenaline (higher heart rate) and acetylcholine (lower rate).
  • Carotid Sinus Hypersensitivity (from turning the head) has apparently been observed to also include leg jerks in some people.
  • Nerve impulse can cause the muscles along the carotid artery to constrict.

My wonder is whether tremors could be influenced / affected by constrictions along the carotid arterial / neural pathway. Either as a cause or through reaction feedback.

Thoughts on Balance from Bruce Edwards, Support Group Member

What Physical Therapy Can Do To Help You With Balance If You Have ET

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We had our Falls Church support group meeting at Little River Glen Senior Center March 14, 2013. Our speaker was Jordan Tucker, DPT, Fair Oaks Hospital, Outpatient Clinic.  Below are notes and handouts from that presentation.

Balance is often a problem for people with ET.  Decreased strength and flexibility, which often come with ET, can adversely affect balance.  Flexibility is important because the ability to stretch one’s leg, calf, and chest muscles affects balance.   Similarly, lack of strength to easily get out a chair can result in falls.  Scoliosis and gait issues may make the body lean in one direction, throwing you off balance.  ET sufferers also have more trouble dual tasking, i.e., walking and talking or walking in one direction and looking in another.  Ankle instability, high or low arches, knee or gait issues, weak ankles, and hip problems also affect balance.  Physical therapists work with patients to deal with all these problems.

Physical therapists experienced in working on balance with patients who have neurological issues tend to be found in hospitals.  Call your local hospital to see if they offer it.  Be aware that, if you are on Medicare, there is an $1800 cap on PT.  However, there are exceptions to this limit, such as a change in your diagnosis or treating multiple problems.

Physical therapy involves an initial evaluation followed by a plan for exercises done with the therapist and a plan for exercises to do at home.  The course of treatment will take place twice a week for two weeks or longer.  It typically involves stretching, strengthening specific muscles as needed, and balance exercises.  You can get a prescription for physical therapy from any doctor – your primary care physician as well as a neurologist. Just ask.

Physical therapy can retrain the three systems that have to do with balance:

  • Eyes and vision – cataracts can be a problem affecting balance
  • Feet – neuropathy (pain and tingling in extremities) interferes with the feedback from your feet that helps maintain balance
  • Brain – reaction times

Tai chi, yoga, Pilates, and water therapy are also useful in improving balance.  Jordan Tucker suggested joining a community exercise group.  She also said that people with ET and balance problems may benefit from using a cane, a walker, or walking sticks.

An audience member said that he uses walking poles successfully.  They are available in sporting goods stores, but the poles in sporting goods stores tend to have narrower rubber tips than the ones sold online for balance.  He found information about poles at http://polesformobility.com/ and https://www.exerstrider.com/product-category/poles/.  The poles are pictured below (but picturing smaller tips than those used by the audience member).

Group of people walking using walking sticks for balance.The audience member said he wears a backpack to carry things since his hands are engaged with two balance poles.

Jordan Tucker handed out a questionnaire on balance confidence and a home safety checklist with tips on using stairs, railings, grab bars, and avoiding reaching for far-away objects (which we may do in the kitchen).    Some obvious points are often overlooked, such as the need for good lighting in the home, especially near stairs. Night lights in the bathroom can be useful, too.

Her presentation and two handouts that she passed out are listed here (pdf format):

How a Physical Therapist Can Help Increase Your Balance

Home Fall Prevention Checklist

The Activities-specific Balance Confidence (ABC) Scale*

Joyce Letzler, Support Group Member