~A Little About Me~

Lori

I was born and raised in Phoenix, Arizona. To this day I still call Phoenix home, as does my mother, siblings, children, and granddaughter. Surprisingly to many who now live in Phoenix, I am a 3rd generation Phoenician.

Growing up seemed to be a smoothly paved road. Although my parents struggled to keep our family floating financially, they always provided me with the truly important gifts life has to offer while maintaining strong values in God and country. I guess you could say I was quite protected from some of the harsh realities of life.

At about age 5 I started dance lessons and continued to dance throughout high school. Today, I still love to dance and enjoy country dance especially. I had and still have enormous love and compassion for animals. Growing up I was always surrounded by cats and my long time friend and companion of 16 years, Zorro, our family dog.

I was married at age 17 and had two wonderful sons, who to this day are my two special angels on earth. As life would have it, I began experiencing some very significant losses. My marriage of 20 years ended. This began a very difficult and challenging time in my life. The years that followed presented many other losses, such as the loss of my health resulting in the loss of my job. The disability I speak of is called Benign Essential Blepharospasm. Below is the story of my personal journey with Blepharospasm.

I believe that this web site is a direct result of the things I was awakened to because of Blepharospasm. Believe me, when your eyes are taken away from you, the things that seeing people take for granted every day,  become a blessing once regained. Once I was correctly diagnosed and with the help of others who suffer from the same disorder, I have gained a clear perspective on how I would like to live my life. The meaning of life became clear through my renewed vision.

In 1994 our family received one of the most precious gifts from God.... My beautiful little granddaughter, Hunter. Just watching her eyes dance when she giggles warms my heart beyond belief. I thank God every day for the joy she has brought to my life.

As fate would have it, I eventually came to live again with my parents. The initial reason for this was due to financial difficulties with the loss of my job and the waiting period required by Social Security Disability. I was fortunate, however, that the company I had worked for had a terrific disability policy to help supplement SSD. I was apprehensive with this move; after all I was 40 years old and had become quite set in my ways. The love I witnessed every day between my parents, and the opportunity to get to know my parents as wonderful friends, turned out to be two years of my life filled with serenity, happiness and a better understanding of unconditional love.

April of 1998 I lost the most significant man in my life, my Dad. He walked with me through pain, tears, joy and laughter. I miss him dearly. The faith I have in God, support from loved ones, and dear friends right here on the Internet have helped me through this very difficult time.

Although the losses I have experienced will be with me forever, I have found great reward helping others through the emotional pain Blepharospasm and other disabilities bring to their lives. My life has been forever enriched by such people and now it is my turn to stretch out a welcoming hand to you.

Looking back on everything, today I can now see......
"All Things Happen For A Reason"

Oh.... I'm not always this serious,  I also love to just kick my shoes off at times and dance to music playing on the radio.  I have found that laughter truly IS the best medicine!!
 


~My Family~

We cannot buy a quart of goodwill,
a pound of love, or a yard of patience.
We can only create such values from within
ourselves by genuine effort.  These are the values that
build love and help make homes spiritually satisfying.

 

~My Personal Journey With Blepharospasm~

I would like to share with you my "Journey," resulting from a quite rare disorder that is continuing to be misdiagnosed by the general medical community. Very often it is dismissed as a psychiatric problem. The disorder I speak of is called Benign Essential Blepharospasm, which can very often render a person functionally blind. I am personally one who suffers from Blepharospasm. However, please understand, I am not alone in the suffering. Many people with whom I have spoken with, share very similar stories. One of who suffered for 17 years without a proper diagnosis, and therefore without appropriate treatment.

Today I am the Arizona State Coordinator for the Benign Essential Blepharospasm Research Foundation. I look back on everything I had to go through to gain understanding, and I want to do as much as I can to help others who may be in seclusion and suffering with desperation to receive an early diagnosis, and subsequent early treatment. Our goal is to educate not only Physicians, but the public as well. There is no known cure for Blepharospasm, and the cause is only speculative. However, we are beginning to learn that the origin of dysfunction is in the basal ganglia of the brain. Knowledgeable physicians also know that this disorder, in some cases, can be progressive. The progression may begin to affect other facial muscles (Meige syndrome), giving the patient spasms and looks of facial contortions. However, many patients never progress beyond Blepharospasm (I feel fortunate to say, I am not affected beyond Blepharospasm). Very often, due to embarrassment many patients will go into seclusion. I will probably not see a cure in my lifetime, but hope with all of my heart that my children may see one in the future.

In 1992 I began to notice some changes with my eyes.   They were somewhat subtle, but troublesome with excessive blinking, watering and burning. I contacted my primary care doctor who felt that I must have an infection, at which time he started me on steroid eye drops. When after months of treatment and no relief, my physician concluded that it must be psychiatric. I was referred to a Psychiatrist, where I was put on antidepressant medication. However, the condition with my eyes worsened. My eyes began to squeeze closed for minutes at a time. I had absolutely no voluntary control. The only way I could open my eyes was by using my finger to pry the eyelid open. Eventually the duration of the forcible closure became longer and longer. I could no longer carry on a normal conversation with people, due to the fact that I could not keep eye contact. One of the very strange aspects in which I noticed was; when speaking in animated conversation, my eyes would open. However, as soon as I would stop to listen, my eyes would squeeze closed again. As you could imagine this brought about curiosity among people I came in contact with. I continued to try working through all of this. I guess I thought it would eventually go away. After all, I was under the care of my family Physician and a Psychiatrist. I also continued to drive, and while on my way to work one day (holding my eye open), I was in a minor car accident. That was the day I realized I could no longer live my life as I had been accustom. At the time I worked as a medical transcriptionist. My eyes were getting worse, but I continued to struggle through the work day. The last day in which I worked in this position was terrifying. My eyes were squeezing closed with no relief at all. A friend that I worked with finally said, enough is enough, and called a neurologist friend of his. I was able to see him that day. This Neurologist, after a few tests, diagnosed me with Myasthenia Gravis and I was put on oral medication.

After a week at home and still no relief, my employer called to tell me they were letting me go. At this point I did not have the emotional strength to fight. I returned to the neurologist and cried that the medication was not helping. He told me to discontinue the medication. However, he was steadfast that I still had Myasthenia Gravis. I was told to just wait, it would go away. I was angry, hurt and confused. Why was no one helping me? I was beginning to sink into a deep depression. I could not even walk across the street for fear of being hit by a car.

I went into seclusion, with little income, sleeping for many hours and feeling very alone. By this time my eyes were clenched closed all of the time. I thought I had done everything I could to find help, with no relief. My family could not understand. "Just open your eyes," they would say. Believe me, I would have If I could. I looked at my future, and at age 36, did not know how to live like this. For approximately two years I battled with the question; What is happening to me?

Finally while being treated for depression, my psychiatrist referred me to Barrows Neurological Institute in Phoenix, Arizona. I was frightened and a bit apprehensive. Were they going to tell me to just wait and it will go away? I was examined and told that I did not have Myasthenia Gravis, I had a disorder called Benign Essential Blepharospasm. He explained to me that the disorder was not fatal, however there is no know cause. I asked;  "So how do you fix it?"  Unfortunately, because there is no known cause, there is not a cure. However, I was told that there may be relief from the spasm with injections into the muscles of my eyelids. The medication used in the injections is called botulinium toxin (or Botox), developed by Allergan pharmaceuticals from botulism toxin. I began my injections shortly thereafter. After about 10 days my eyes began to relax, I could open my eyes again. How ironic, I thought, that one of the most deadly toxins known to man, may very well give me my life back. I was also given the name of the Benign Essential Blepharospasm Research Foundation, and was told that there were local support groups for this condition.

After suffering for two years alone and in seclusion, I finally spoke to another Blepharospasm patient over the phone. I cried with relief. She went through as much as I did, before receiving a proper diagnosis. Since that time I have had to go through a grieving process to finally gain acceptance of life changes. After a while Botox injections were only lasting 4 to 6 weeks, at which time I began to consider limited myectomy surgery. I did my research and came to the conclusion that the best place for me to go was to Salt Lake City to see Dr. Richard Anderson. In April of 1996, I received a limited myectomy (removal of part of the muscle that controls closing the eyelids) by Dr. Anderson. The results have been astonishing, however I  still need Botox injections every three months. Botox is now more effective since surgery, and I can go a full 3 months. I have learned, with the help of the Foundation, other patients, and experienced Physicians that my condition can be managed.  Because of the wonderful Physicians, the Foundation and others suffering from Blepharospasm, I have now regained a large portion of my life.

Today I assist the Research Foundation , on a volunteer basis, by organizing support group meetings in Arizona, speaking at Physician and patient conferences as well as assisting patients with Physician referrals. Currently, along with Physicians and staff from Barrows Neurological Institute, and Mayo Clinic, I am involved in the initial organizational plans for the Foundation's International Conference to be held in Scottsdale for the year, 2001.   It is a challenge, but I believe my heart is truly in it!

My heart sinks every time I receive a call from a new patient with Blepharospasm. Hearing their stories takes me back to my days of suffering. However, I tell them that we are here to help, and they will now be able to rebuild their lives, with appropriate treatment. My goal now is to get the word out. There needs to be more awareness on this disorder by the general medical community and the public. Recently there was a small article published nationally by Dr. Donohue regarding Blepharospasm. In response to this article, the Foundation in Beaumont Texas received over 500 letters and phone calls from people who believe that they may be afflicted. Many of whom have gone without a proper diagnosis for many years.
Although Blepharospasm is not fatal in itself, the depression and despair may very well be. The despair and helplessness was very real. I have now learned to integrate Blepharospasm into my life. I know my limits and I know my strengths. I know now that I am not alone, and a part of my future will be found with continued research for a cause and cure for such a potentially disabling disorder as Blepharospasm. Unfortunately, and due to lack of education, there are still people out there, very much alone with the sufferings of Blepharospasm. We all can help. Let them know that there is help and they don't have to live in the dark any longer.

We cannot all make "Waves," but we can surely makes "Ripples." The ripple effect can produce a much greater impact.

Please take a moment to learn more about Benign Essential Blepharospasm at our national web site:  The Benign Essential Blepharospasm Research Foundation or visit our Arizona BEBRF Support Group web site:  AZ BEBRF Support Group

~A New Strength~

There are times in every life
when we feel hurt or alone......
But I believe that these times when we
feel lost and all around us seems to be
falling apart, are really bridges of growth.

We struggle and try to recapture the security of what was, but almost in spite of ourselves, we emerge on the other side with....
a new understanding,
a new awareness,
a new strength.

It is almost as though we must go through the pain and the struggle in order to grow and reach new heights.
 

Love To All,
Lori


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