Month: March 2013

Balance Problems

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

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 selected poles made by Tom Rutlin at http://www.walkingpoles.com/content/view/28/40/.  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

Congressional Neuroscience Caucus – March 18, 2013

On March 18, I attended the Congressional Neuroscience Caucus meeting on Capitol Hill on behalf of Tremor Action Network. The subject of the meeting was “The Science of Mental Illness: Correlations between Mental Illness and Violence”. It was just as informative as the two previous caucus meetings I had attended. The speakers were Dr. Thomas Insel, Director of the National Institute of Mental Health, Dr. Elizabeth Childs, a child & adolescent psychiatrist in private practice in Boston, and Dr. Raquel Gur, Director of the University of Pennsylvania Schizophrenia Research Center.

The meeting was a response to the shooting that occurred at Sandy Hook Elementary in December. It was well attended with the majority of the audience being legislative assistants for members of Congress.

The three presentations tied together very well. They focused on the psychosis of males between 14 & 24 – the ones responsible for many of the mass killings. A point was made that it is not an issue of gun control or arming teachers. The problem started years before in these boys. Using a comprehensive model that includes early detection, better access to care, monitoring, and patient-related outcomes, countless more tragedies can be prevented from occurring.

Dr. Gur’s presentation was enlightening. She showed how they have used imaging of the brain to see how the brain functions in someone with psychosis. These recent findings can play a key role in early detection of the problem. Early detection is critical because the sooner that treatment starts the better.

Remarks for the Congressional Neuroscience Caucus by Elizabeth Childs M.D., M.P.A.

Mental Illness and Violence: A Neurodevelopmental Perspective by Raquel Gur, M.D.

Summary of Neuroscience Caucus Briefing The Science of Mental Illness: Correlations between Mental Illness and Violence

Peter Muller
Executive Director

American Brain Coalition Board Appointment

I was just elected to the board of the American Brain Coalition – www.americanbraincoalition.org. It is a real honor. I will take my position on the board at the fall membership meeting in San Diego for a three year term. While advocating for all neurological disorders, it will give me an opportunity to increase awareness of Essential Tremor as well as CMT (Charcot-Marie-Tooth). Rose Schooff is the person behind HopeNET’s website. She has spent many selfless hours on it. I can not express my appreciation enough for what she has done. Rose has CMT as does her son and grandson. CMT is similar to ET in that it is neurological, hereditary and few know what it is.

Kathleen Welker of TAN deserves all the credit for my being on the board. It was her idea to begin with. She nominated me and then wrote a glowing cover letter. She & I continue to work closely for the benefit of those who have ET.

Being on the board of ABC will expand my exposure to what new brain research is being conducted and provide contact with researchers & clincians involved in every aspect of the brain. Provided I can grasp it all, it should result in you getting more extensive and meaningful information.

Always feel willing to contact me with any suggestions you may have.

Peter Muller
Executive Director

Essential tremor sufferers seek answers and help

The following is an article that was in the Vero Beach 32963 / February 14, 2013 Newsweekly by Siobhan McDonough, Correspondent.

Hector Rocafort remembers the day 15 years ago when his right hand started trembling for no apparent reason and from that point on mealtimes were a disaster. “I couldn’t eat properly,” he said of his efforts to use a fork with his dominant hand. “While eating a salad, a piece of lettuce would fly in one direction, a piece of tomato in the other. I’d be lucky if I could get a cucumber!” the 84-year-old retired police officer said last week at the Essential Tremor Awareness Conference hosted by the Alzheimer & Parkinson Association of Indian River County.

Dr. Roberta Rose and Dr. Fatta Nahab at the Essential Tremor Awareness ConferenceRocafort was one of 160 people who went to Northern Trust Bank on Thursday to hear doctors detail symptoms,
causes, treatments and research associated with essential tremor, a progressive neurological disorder characterized by uncontrollable shaking of the hands and arms and sometimes other parts of the body including the legs, trunk, head, voice and chin. Some 10 million people in the United States have essential tremor. There is no known cause. Symptoms range from mild to severe and the condition affects mostly older people with symptoms worsening as they age. However, children can also experience essential tremor.

Joan Marie Barringer, a professional counselor, was only five years old when she started to tremor. She would have occasional episodes, especially during gym class when she was tasked to walk on the balance beam. “I was terrified. My whole body would start to shake.” She didn’t know what she had and was unable to supply an educated answer to family members, classmates and others who queried, “Why are you so nervous? Why do you shake so much?” “I felt frustrated and very alone,” said Barringer, who was eventually diagnosed at age 32 and later realized that she wasn’t the lone sufferer of essential tremor.

“It is a big secret for a lot of people,” she told the group, many of whom closely identified with her personal account of “feeling embarrassed and alone.” She encouraged people to attend support groups, to try a holistic mind, body, spirit approach to treatment in addition to a medical one, and to evaluate their diet and exercise.

Dr. Roberta Rose, a neurologist who practices in Vero and Sebastian, also spoke to the audience, offering an overview of essential tremor. While the condition can be debilitating it does not shorten a person’s life span, she said. It also doesn’t mean someone will develop Parkinson’s disease if they have essential tremor, however some research suggests that essential tremor can also occur with other brain and nervous system problems such as dystonia, parkinsonism and certain nerve conditions passed down through families.

There has been no medicine developed specifically to treat essential tremor, she said, however Propranolol, a beta blocker, and Primidone, a drug used to treat seizures, have been widely used and proven effective in some cases. Both drugs can have side effects.

In studies, alcohol and Botox have also shown to be effective in reducing certain tremors in patients. There is no single test to diagnose essential tremor, but a person with frequent tremors should have a thorough physical exam, have blood work done and a family medical history taken.

Rose implored those diagnosed with essential tremor to take things in stride. “If you take the right attitude, anything you are confronting will be easier, and that is as important as any medicine.”

She also discussed deep brain stimulation, a surgery for those with severe tremors that’s done to inactivate the thalamus, a structure deep in the brain that coordinates and controls muscle activity, without purposefully destroying the brain. Experts think that the abnormal brain activity that causes tremor is processed through the thalamus.

With brain stimulation, electrodes are placed in the thalamus during surgery. The electrodes are connected by wires to a type of pacemaker device called an impulse generator that is implanted under the skin of the chest below the collarbone. Once activated, the device sends continuous painless electrical pulses to the thalamus, blocking the impulses that cause tremors.

Patients can externally turn the generator on or off with a special magnet provided to them. Stimulators may last for several years, and the generator replacement procedure is fairly simple.

The stimulation provides moderate relief to about 90 percent of patients with essential tremor, studies show. Still, brain stimulation should only be considered in cases in which tremors significantly impair one’s lifestyle. Rose cautioned that surgery has risks, and the procedure is not for everyone.

However anxiety-stricken Jerry Peterson, 71, of Sebastian, was about having deep brain stimulation in 2009, his tremors had gotten so bad – he had lost his job in retail, and his fine painting skills were greatly diminished – he felt it was time to face his fears in the hopes of a favorable outcome.

And favorable, he got. “It was worth it,” he said after detailing his surgery with others. “It’s changed my whole life.”

Dr. Fatta B. Nahab, answers questions during a Essential Tremor Awareness Conference hosted by the Alzheimer and Parkinson Association of Indian River County. Dr. Fatta Nahab, a neurologist in Miami, wound up the conference with details on recent studies on essential tremor, and a status report. The bottom line: Whilst aggressive measures are being taken by researchers to pinpoint causes and origins of essential tremor, it remains largely a mystery.

“Essential tremor is at a very critical time,” he said. “It’s a very difficult time for the field.”
No gene has been identified as associated with essential tremor. There is no known cause. No one knows how to customize treatment for what kind of tremor a person has. There are no medicines developed specifically for essential tremor. There is limited understanding of the causes, brain regions, medications and how the med[icine…]

“There are a lot of unanswered questions,” he said, urging people who are able to, to participate in case studies. “We need your help …… research moves forward, science advances because you all get involved.”

For Rocafort, brain stimulation was a step in the right direction. He has no regrets about his decision to have surgery, so much so that he is considering having another one done to improve his left hand’s functionality.“I feel like a new man,” he said buoyantly of the first go-around. “It’s a wonderful feeling.”