"Hi My Name is Darla...", Darla
"Everyone Has A Story", Sheri Rogers Bashor
"My Story", James Thomas
"Giving Glory", Joanne Morey
"A Time To Be Born and A Time To Die", Shirley Hodder
"In HIS Service", Steven Hayes
"My Auntie", Bethany Bashor
"MJD and the Sephardic Condition", Sheri Rogers Bashor

I have a disease called Machado-Joseph Disease.

A little personal history about the disease. My great,great,great grandfather was named Antone Joseph he is from the Island of Flores in the Azores Islands. Grandpa Joseph came to the USA in the 1840's. He went gold mining in Columbia, CA and he homesteaded in the Livermore Valley of California. He also brought with him a defective gene called Machado-Joseph Disease. Poor grandpa ~ he probably thought he had gotten away from the disease... since so many of his relatives had the disease, on the Island of Flores, even his own father had this disease!

Now present day.

I started showing symptoms of MJD in 1986 I was 28 years of age. My dad had this disease and so did his father.

I began to loose my balance. I would cough and loose my breath for a few seconds. I had a crawling feeling on my arms and legs. My toes had pain in them and I would have cramps and spasms in my hands and fingers. My driving was unsteady, some days were better than others. I got tired more easily. I began to see double. I would would have stomach cramps from nerves. I went to see many doctors and none of them had ever heard of MJD. I would give them a MJD Fact Sheet and they would read it. I would get so frustrated because the doctors didn't understand about MJD.

I am now in an electric wheel chair and most of my care is done by my sister and my friend. I live with my sister, her husband and their four children. I went through a divorce a year ago. I was married for 22 years. My ex- husband did not understand about this disease. Many people do not want to understand about this disease. I can hardly speak and I have a great deal of trouble eating food. Most of my food has to be ground up like baby food so I won't choke. My body gets very stiff and rigid. I can think fine, but it takes my lips a long time to form my words.

When I was a kid I use to love to ride bikes and horses. I would stay out side as late as I could. I loved to be outside. Sometimes I get up-set that I can not do all the things I used to do... but I am thankful to GOD for HE has helped me so much in keeping the right attitude. I am not sure why I have this disease nor why it has been in my family for so long. Probably more than 500 years. Lots of people have suffered from MJD... I am just thankful that I believe in Jesus and God and that I am only here on this earth in this twisted body for a short time. Soon I will be free...

On June 20, 2000 Darla was set free she died and went to heaven to be with her LORD JESUS forever!

Everyone Has A Story
by Sheri Rogers Bashor

When I was a child life was uncomplicated and carefree. I would hunt for salamanders after a spring rain. My two sisters and I would dress our kittens up in doll clothes and wheel them around in our baby strollers; we had a lot of fun together.

We lived in the Hayward hills near San Francisco, California. I was five years old when we moved into our new home which my dad helped to build. We had all the material conveniences and luxuries that money could buy. My parents over indulged us making up for “all the things they never had.” All seemed perfect and secure (or so I thought) in my simple world.

As time marched on, I began to notice my dad coming home from work earlier each day. He was a carpenter and often came home limping. One time he explained he had fallen off of a ladder, another time it was the scaffolding at work (he had to go to the hospital for that one.) My mom, dad and grandparents constantly made excuses that my dad was "just clumsy" but his falling became more apparent and frequent.

I began to notice my dad walking crooked and holding on to the kitchen counter for support. I would hear my mom's muffled crying and I began to question what was happening to my father ~ soon he stayed at home and did not go to work. The safe, secure, carefree world I knew began to crumble.

When I was 11 years old, my dad entered the hospital for an extended stay. The doctors' wanted to find out what was wrong with him ~ he had a lot of tests done. My family shielded my sisters and I... we were not to know what was happening. My mom wanted to protect us - too much so.

I began hearing bits and pieces about a disease in my dad's family but my mom said "it had nothing to do with girls it only happened to the men; we had nothing to worry about." I didn't understand what was happening to my dad or to my family. The disease became apart of our lives eating away at each of us. This disease not only affected my father but it infiltrated our entire family. I didn't know then that my great grandmother and her son (my grandfather) had died from this same disease. I did not know that my family "had a secret." I found out years later that hundreds of members of my family had been effected and suffered miserably from this same genetic disease; generation, after generation.

As the years passed by my mom had to go to work and my dad was constantly in and out of the hospital. My grandparents (my mom’s folks) lived with us which was a real blessing. Our lives drastically changed; there was a lot of fighting, crying, worries and fears. All of our material possessions disappeared ~ and reality began to sink in; life wasn’t so simple.

I watched my dad physically and emotionally change. He had to use a wheel chair; he couldn't walk any more. He had numerous operations and tried a lot of different medications. My dad became a human guinea pig; he encouraged the doctors to try "anything" in order to find out what was wrong with him. The doctors complied ~ they probed, poked, and operated; they found they couldn't help him. My dad became bitter, angry and fearful. He could no longer protect and support his family. He did not feel like a man, guilt set in. My parents’ relationship became extremely strained.

When I was 14 yrs old my mom and dad got a divorce. I was devastated at how much my life had changed ~ all because of some kind of illness my father had. We did not have a name for this disease; this robber of life. We did not understand how it worked... we only knew it kept progressing and destroying. It was overwhelming how it had affected all of us. Life was not the same, my dad moved to a Convalescent Hospital. Sometimes my mom would take us to visit my dad, it was a two-hour drive one-way. My dad looked so bewildered and sad when we saw him. It was a pathetic place; it was not for a young man in his mid-thirties. When I was 16 yrs old we moved closer to my dad, he also moved to a Veteran's Hospital. We got to see him every week ~ we watched him waste away but his attitude began to change.

My dad was very popular at the Veterans Hospital where he lived. He would always joke with the nurses and everyone really liked him. His bitterness and anger subsided as the disease progressed. He had finally accepted his lot in life; there was no more fight.

I watched my healthy father who loved his family turn into a very weak, frail man who could not communicate with any one. The frustration was always there: his healthy mind and emotions imprisoned in a body that did not work. My frustration never able to help him...

One night I got a phone call from my grandma that my dad had contacted pneumonia and was very ill. We rushed to the Hospital ~ as I stood by my dad's bedside I remember holding his hand, his eyes were closed and he looked peaceful. Dad I said "I love you" I felt him squeeze my hand back as if to say "good-bye Sheri, I love you too"... a few minutes later my dad died. I was 19 years old.

And another victim of a family secret was laid to rest...

In memory of my dad
George Rogers Jr.
May 1933 - Jan.1973

My Story
by James Thomas

As a little boy growing up in the American home town of Plymouth MA I had three brothers and one sister and the best mother that GOD has ever put on this earth.

My mother was the glue that held my family together. My father was in a wheelchair from my very first memory of him. I can only recall little things about him like the time my brothers took my father and me to the movies, they put him in a wagon and pulled him to the movie show.

I was five years old. As time went by the state put my father in a "nursing home" where he died Aug 8,1955 all alone in a far away place with no loved-ones around.

Without saying, my family was the poorest family on the street ~ but we were the richest family in the world, WE knew about our LORD and we were taught that it did not matter what religion a person was as long as GOD was in it!

As the years rolled by my next to the oldest brother began to have trouble walking and the doctors said that what my brother had was not the same thing as what my father had. So my brother got married and had 4 girls.

Next my brother who was just two years older then me had trouble walking. He was in the service ( Army) and he could no longer march in line ~ but more heartbreak was to come, because now my oldest brother who also was in the service (Army) could no long march in line and they came home to "ma".

My oldest brother got married before this 'thing' took over his body and he had one girl and one boy, then my only sister came down with it ~ and I waited for the axe to fall on "me".

Well it did not fall ~ not until my whole family was gone. Even though my mother did not have this disease the disease helped take her life.

I can recall a time when she and I worked at the shoe factory and the weeks she was sick showed up in her pay check and I would trade my check for her check.

In 1989 I began to notice that there was something going on in my body and I did not want my mother to know that ALL of her kids had this disease. So I moved to FL and she never knew that I too like all my brothers and sister had this disease, it was every important to me that she never knew.

Well to get back to my first brother that came down with the disease. He was only 16 years old but that did not stop him from fathering 4 girls ~ three got the disease the oldest girl was 16 when she came down with the disease and her son was 16 when he too came down with it.

Another one of my brother's daughters could not stand it any more and she ended it, leaving behind a beautiful little girl.

When my brother died he died in my arms, and not alone in some far away place.

My own father had the disease and died ~ then his father (my grandfather) came down with it and then my uncles and aunts and cousins all have had it.

The axe was falling every where and we had no way to stop it. So far I have seen 16 family members die and another 8 have it.

Please keep the faith and the hope for tomorrow... Jim

Giving Glory
by Joanne Morey

My grandmother, my father's mother, was the first person I saw go from a walker, to a wheelchair, to bed and then death! Because my grandmother had MJD my father came down with it also. With my father having the affected gene he passed it to me! One of his seven offspring! My other brothers and sisters have a possibility to come down with MJD but have not showed signs of it as yet! Praise the Lord!

I'm 50 years old and have had symptoms of MJD for twenty years now. My husband helped me with all my personal hygiene because my hands had little mobility in them. When I began to see my father in a wheelchair and me on a walker, I decided I needed to do something! I talked with my doctor and asked him to monitor me on an all veggie and fruit lifestyle to see what would happen to me!

I started this lifestyle on June 12,2000! It is November 16, 2000 and I would like to share what has happened to me thus far: I have gained the feeling back in my legs, feet and hands, I've lost fifty pounds, and I can do all my personal hygiene again! I still have a big problem loosing my balance and getting tired but I Praise the Lord I use just a cane when I am outside by myself!

The Lord tells us in His word that the herbs are for the healing of the nations ! I don't know what is in store for me, but with the Lord how can anyone loose!

Whoever reads this I give all the glory to my God! Because without Him I am nothing!

A Time To Be Born and A Time To Die

By Shirley Hodder
June 29, 2000

A time to be born and a time to die.
We have no choice in either, only in our destination.
I took care of Darla at her birth, I took care of Darla at her death.

We scattered her ashes, her dad and I at a most wondrous place.
The view of the mountains is unsurpassed by their majesty and beauty.

It was off the Pacific Coast Trail, we laid Darla to rest.
When a view of the mountains came into sight, we knew this was the place.

God's creation before us in all it's splendor and Darla His little creation too!

Wild flowers grow at her head and an old unusual pine at her feet.
As we place more wild flowers at her rest and said our parting prayer ~
Darla seemed to say, "Thanks Mom and Dad that was special."

We believe God led us to this wilderness area and majestic mountain site ~

We rejoice in Him, knowing He is our Lord...
On the way down the trail a song came to mind.

"I Lift My Eyes Up Unto the Mountains"

Psalm 121:1

(Shirley Hodder was Darla's mom)

In HIS Service
by Steven Hayes

My name is Steven Hayes, and I am afflicted with MJD (Machado-Joseph’s Disease.

I have been showing signs of this disease for approximately 11 years, as of about 4 years ago I have been confined to a wheel chair, before that for about 4 years I walked behind a walker.

My daughter who was in grammar school at the time drew a picture of me depicting me with a walker. My children, who are in high school now, are compassionate to people who are in wheelchairs, now.

I trust in the Lord, for my healing for me as well as that of my children’s.

I am 43 now, my mother died at age 53 of complications affiliated with this disease, I figure I have about 10 years left on this earth. If you are interested in contacting me my email is hayesops@earthlink.net.

I thank the Lord above for each day I can spend in his service.

My Auntie

Joseph Disease is a very bad disease. My Auntie Darla had it. But she is dead now. She was the best Aunt ever!

We got to push her around in her wheel chair. It was fun! But it got worse - I couldn't sleep at night because her room was next to mine and she kept coughing. So I got up and rubbed her back then she would stop coughing. But it got worse we couldn't understand what she was saying, it was hard for her.

You should always be ready for something to happen. She died June 20, 2000. She died 14 days after my birthday. I was so sad when she died.

Well bye for now.

With love,
Bethany Bashor
Age 9
November 2000

MJD and the Sephardic Condition

by Sheri Rogers Bashor

Personal Thoughts

A question that continues to arise in my mind is the origin of MJD (Machado Joseph Disease). A disease that once was thought to be contained in my own family and thought of as our "family secret" is now known as a "common ataxia" through out the world.

In twenty-five short years a disease that was hidden for over "500 or more years" has now sparked the interest of medical professionals world wide.

I am not, nor do I claim to be a medical professional but I would like to present some facts that I believe have a definite connection between a genetic disease (which has been in my family for centuries) and many Sephardic Jews.

Machado Joseph Disease (MJD) is an autosomal dominant neurodegenerative disorder. In layman terms a genetic neurological disease or stated simply an inherited disease of the central nervous system. It was first thought that this disease originated in the Azores Islands. If your parent has or had the disease you have a 50/50 chance of getting the disease. This disease does not skip generations nor is it a respecter of persons.

This disease progresses year after year, the affected person becomes wheel chair bound, their body becomes stiff, they must depend on others for their primary care, and they are unable to communicate or be understood. The intellect is usually intact which means "one is trapped in a body that does not work; a virtual prison." My father had this disease (he died at 39 yrs. of age), as did his father, generation, after generation. My sister now has this disease.

As I was looking on the Internet for up-dates on MJD. I was amazed to see a connection materialize as to the origin of MJD.

I present to you the following information.

From a medical paper (OMIM ENTRY 109150) it was written: "The possibility that the Joseph family was originally Sephardic Jews" was raised by Sequeiros & Coutinho (1981) Mainland families originated in a mountainous and relatively inaccessible region of northeastern Portugal where large communities of Sephardic Jews settled at one time. The Joseph family was from this area.

Another medical paper "Origin of the Portuguese Mutation" written about MJD expounds on this. From unpublished data, from Sequeiros and Sa Miranda "there is some preliminary evidence that the frequency of the Tay-Sachs disease gene is increased among Portuguese patients with MJD and their relatives. Tay- Sachs has a high frequency particularly among Ashkenazi, and well as Sephardic Jews."

It has been reported that MJD is found in Portugal, with the largest of these families along the Douro River, as far north as Freixo-de-Espada-a-Cinta to the Atlantic coast in Porto. MJD has been found in families in Brazil, Angola, France, and Germany. One Brazilian patient claims to be of Jewish descent from Amsterdam (Coutinho, unpublished observation). Other reported families are from Japan, India, China, Australia, the Netherlands, and Israel!

I found a document written in 1994 with the caption "Machado-Joseph (Azorean) disease in a Yemenite Jewish family in Israel." Goldberg-Stern H, D'jaldetti R, Melamed E, Gadoth N ..."we report the first Israeli Jewish family with MJD, originating from a remote village in Yemen."

From OMIM ENTRY 109150 Goldberg-Stern (1994) ~ Machado Joseph disease in a Yemenite Jewish kindred that originated from a remote village named Ta'izz. This family, incidentally named Yoseph, had no documentation of Portuguese ancestry. Portuguese trade connections with the Yemenites most likely did not reach Ta'izz which is far from the coast and is almost inaccessible because of a wall of high mountains.

The Sackler Faculty of Medicine in Tel Aviv, Israel reports a RESEARCH PROJECT titled "The Israeli Pocket of Machado-Joseph Disease." Natan Gadoth, Professor.

I found medical research articles written about MJD in 1996 and 1997 from the Department of Human Genetics, Hadassah Medical Center, Hebrew University Medical School, Jerusalem, Israel.

There is one hospital in Israel which provides care for patients with Machado-Joseph disease.

What does all this information mean? I believe there is a definite connection between MJD and Israel.

Why is this important? Over the past year I have discovered a group of people known as the 'anusim', Conversos, Marranos, 'New Christians'. These people were Jewish and lived in Iberia (Spain & Portugal) over 500 years ago. Their descendents are scattered throughout the world. These people were and still are a stigmatized people.

I believe MJD will be shown to be a genetic marker for these people and be used to give credence to their true heritage.

MJD Stories