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.

 

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

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?


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

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

Ultrasound Clinical Trials at UVA

I feel like I was one of the lucky ones to be included in the focus ultrasound clinical trials at the University of Virginia. This experimental procedure was done at no cost to me through a federal grant. My sister read about the trials in the Richmond newspaper. When I first inquired about the program the possibility of acceptance was bleak. Hundreds of people were interested and I was pretty far down on the list. However most of these could not meet the designated criteria. Prior to being accepted I had to undergo 3 days of testing over a 3 month period. The tests and interviews were administered by a variety of doctors. I met with the UVA coordinator, the surgeon who would perform the procedure ( Dr. Elias ), a neurologist, a physical therapist, a psychiatrist, and a psychologist. I had to have ekgs, bloodwork, and a catscan of the brain.

On 9/7/11 I reported for surgery. My head was shaved and rubber tubing was placed on my head. The operating room was filled with doctors as well as the engineers who built the ultrasound machine. I was placed in a catscan for about 7 hours. It was a long process for me since it took a long time to line up the scanner before they zapped my brain. I was zapped more times than I can remember.

I had 3 follow up visits to Charlottesville to be checked out by the team. They were genuinely interested in how I was recovering. They were very professional and very caring. What a great group.

Prior to the procedure I was told that it would only improve my right hand and it was successful. I can now write in a checkbook and eat in public. I was hoping it would take away some of my head tremors but it didn’t. Head tremors are most common in women.

I have had tremors in my hands since I was in my 20s and they started in my neck/head in my 40s. Even though my right hand is normal, I still have tremors in my head and left hand and my voice is shaky. If I get nervous or do anything out of the ordinary my tremors increase significantly. ET destroys your confidence and it hard to find jobs. You are also aware of people staring at you in public.

I am extremely thankful to Dr. Elias and all of the others that made this a success. This gives encouragement to those with ET. I hope that this process can be used to treat/cure other conditions in the future.

Becky Epton
Member, Falls Church Support Group

Revealing the ET Secret

This morning, I had to fill out a form for a rebate.  I had just taken a walk.  Sometimes I find that my ET is worse after exercise, especially in my hands.   I like to rest a little before I start with tasks.  I began filling in the letters in the little squares on the form.  It was challenging for me today.  I couldn’t read some of the letters I had written myself.  My intuition told me to go down to the lobby of my apartment building to ask the receptionist to help me.

“Can you do me a favor?” I asked.  “You know I will,” she answered with a smile.  I asked her if she had some white out so I could correct some letters on the page I was filling out.  She handed it to me and I started to shake.  “Do you want me to do it for you?” she asked.  “Sure,” I gratefully answered.  I explained to her that I have Essential Tremor, a condition I have had since I was a child.  I asked her if she remembered Katharine Hepburn whose head and voice shook.  Just like Michael J. Fox is to Parkinson’s, I’ve found it helps to bring up a celebrity when explaining what ET is.

It took me a long time to get over the embarrassment of having ET.  It seemed like the more I discussed it with others, the better I began to feel.  The underlying shame began to dissipate.  As a support group leader, I have found that I really do teach what I need to reinforce in myself.  One lady in my Florida group said to me that before she came to the group she never told anyone about her ET.  She happily explained that now she tells everyone and feels so free to be herself.  The same lady said she realizes that she is increasing awareness of ET with everyone she opens up to.

I remember one time I was getting a rental car after a long flight.  I asked for help in filling out the form because I was tired and my hands were shaking.  After explaining to the man that I had ET, he actually decided to upgrade my car.  “I think my favorite aunt had what you have.  She was so nice but we just thought shaking was part of her.”  I told him about a cousin I have who kept it a secret for years until I began talking about it.  She too kept her physical and emotional pain to herself until she cried and said, “It isn’t my fault, is it?”  I said no and gave her a hug.

As a counselor, I studied the book of diagnoses, the DSM, when getting my Master’s.  As I was learning about different conditions, I noticed that tremor was mentioned in the book.  Along with a short description, it said that people with tremor can suffer from “Social Phobia”.  I could certainly relate to the feeling of wanting to hide from people because of my tremor.  I have talked to some people who actually stay home instead of attending social events because of their tremor.

I felt so much closer to my friend in the office when I shared my secret today.  She shared her secret about how she had lost a lot of weight, but still sees herself as fat.  I reassured her that it takes time to really feel the change inside.  I used to feel different than others and could relate to a sense of isolation with my condition, ET. After developing healthy habits, it took revealing my story and trusting others to become more human.

Joan Marie Barringer
HopeNet Board Member