Much of my life has been pre- determined by the neurological disease Spino Cerebellar Ataxia. My professional and personal life was been impacted by this situation. Only 36 years of my life had any sense of normalcy and routine. From child prodigy in Broadway musicals to classical music studies. On to an operatic career and theater / cultural management. A pioneer in hospice care and charity director on the Costa Blanca – Spain. Then on to new projects as a solution project seeker ! ( see the website biography )

All of these endeavors have been impacted along the way by the progression of the neurological disease Ataxia. But nothing has added more satisfaction than the knowledge that the impact of my efforts with the Solution Project and my website in 2020 has affected many people in a very productive way.

Now at 70 years old much has developed in the research of Ataxia and the Spino Cerebellar Ataxia types. Since the timeline of my Grandmother and my battle with this disability – much has changed ( for the good) in the research area. Genetic studies and treatments have advanced the understanding of Ataxia and how we can cope with this neurological disorder on a daily basis. But there is still no cure! We will see what the future holds.

Life in Germany before Ataxia – 1983

Caught between 2 Worlds my Yiddish grandmother from Brooklyn NYC would always say to me “ ach kind, du bist a bisschen Meshuggah. “

In Germany in the summer of 1983 a German tourist office out of Munich engaged me to guide American tourists all around Germany. I was hoping on and off sightseeing buses and attending to every need the people had while they were on holiday in Germany. It was a great opportunity to introduce the American tourists to the new Germany I had grown to love and understand.

I found the American tourists to be terribly spoiled and very entrenched in their views about Germany even nearly 30 years after WWII . But they were very interested in the new ways of this new Germany and at the end of the trip they were very generous with tipping.

It gave me plenty of time on the bus, as we crisscrossed the German Autobahn , to inform them all about the German social healthcare system, the culture and daily ways of life. But eventually discussions came around Hitler, the Dachau concentration camp and the German mentality then and now.

To boot I was Jewish ! A baby boomer from 1951. Trying to be honest to my Jewish roots while trying to educate about the past and move on to the future of reconciliation. Being a tour guide was a chance to educate others.

It brought the teacher out in me . I had a captive audience! But my biggest joy was talking about music and German culture. Here I was in Germany defending my position!

Dear Elin . OUR HISTORY TOGETHER IS UNDENIABLE July 8 , 2023

You can’t make up a story like this! Bear with me on this as I attempt to show you how all the pieces of the puzzle come together !

Ever since I went to Germany from New York City to sing in the opera houses, in 1973, I was tied to the cultural way of life in Europe. It was heavenly! Germany gave me 22 years of vocal bliss ! Then in 1986 my fate began to change.

After nearly falling to my death off a swaying bridge in Madame Butterfly at the Cologne Opera, I was forced to visit a neurologist to confront this situation. All my appointments were pointing to the University of Bonn Neurological Clinic. At age 38 I was attended by the chief neurological officer of the university clinic.

Dr Thomas Klockgether sat at the side of my bed in 1987 and gave me my full diagnosis. It was olivopontocerabellar atrophy. Very rare indeed! He also was the one who told me I had to cancel all my engagements on stage and apply for disability benefits with the German Health care system. At the time it was a devastating situation for me. Ataxia research and what we now know about Ataxia wasn’t so far along!

In 1986 my ataxia situation got me pension disability insurance for life which increased as the progressive nature of the disease progressed and my work ability dwindled. There wasn’t anything like the SARAHOME measuring capability. So my life with Ataxia Disability benefits went from singing to living with ataxia and writing information websites in 2021.

My website connected me to you and the Ataxia studies. Now in 2023 the recognition you have accumulated due to the new prize you just received has brought you together with the Ataxia Global Initiative and the DZNE. There we all are – Dr Kloczgether, AIG, DZNE, you, me and an Ataxia website!

You just can’t make this stuff up ! The puzzle goes from 1973 to 2023! Incredible!

We are all helping others! Regards Martha

Ataxia for me then and now (1988 – 2023)

In 1988 when I was first diagnosed with Ataxia, researchers weren’t as far along as they are now. The type of Ataxia I had was a hit and miss level. It ran the gamut from Friedrichs Ataxia to Spinocerebellar Ataxia to hereditary Ataxia . Exactly what it was the doctors couldn’t say. After a barrage of tests they finally settled on a type of Ataxia they could agree on: olivopontocerebellar atrophy was their final decision.

Since then and now reaseachers for Ataxia have come a long way. One thing for certain is that the disease still has no cure ! Charities for Ataxia, the Ataxia app developed by Aparito for Ataxia studies and the Ataxia community have all put a new spotlight on the need to raise awareness of this Ataxia disease .

Purely by coincidence – the Dr. Involved with my Ataxia diagnosis back in 1988 in Bonn Uni Klinik was the same Person who helped the app developers from Aparito. Dr. Thomas Klockgether directed my future life and the future of Ataxia. We are all coming full circle.

Tal and Me ! We go back a long way!

Hi once again to all choir alumni!

It’s Christmas again in 2022 and all the seasonal music make me think about 1 thing – choir !  Blue and grey satin robe’s slowly approaching the risers. Travels to the Washington D.C.events and searches for the finest pianissimos. This is a tribute to the one person who probably had the most influence and importance on my formative years musically – Mr. Thayer ! A God to many of us who lived under his spell for 3 glorious years. There was no social media back then to be nasty with or distracted. How privileged we were to all have lived under his musical spell.

The story for me goes back to the 50’s when the choir did The King and I and I was in the 6th grade at Camp Avenue elementary school. Tal picked me to be one of the Siamese children. From then on all I could think about was getting into choir. In 1967 my luck and prayers of getting into Choir were answered. My holy journey was about to begin.

I will never forget as we all learned the news that our fallen choir solider , Fred Burns , died in Vietnam. Even his bullets , like the coloratura of Haste the Nymph couldn’t save him. Senseless! Oh how we all cried. How tightly I held his hand to steady his position on the Christmas concert risers beneath my robe during the choral outburst REJOICE in the O’ come , O’ come Emanuel! Fred was mesmerized just like the rest of us ! -steady soldier – I muttered.

My musical development was about to begin and lead me to becoming the 2nd student conductor in the history of the choir in 1969. Singing was always a joy for me. But my preference for Broadway musicals shifted to the classics of J.S.Bach, Sweelink, Brahms and Randal Thompson – amongst many others. Being a part of the choir was pure joy. Tal opened up a whole new classical avenue of music for me.

All this took me to European opera houses in 1971-1988 singing mezzo soprano in some of the greatest works of the Operatic literature. But singing the Lorely softly on a river Rhine boat with Tal and Patrick was a highlight of my operatic touring trip. Leading a group of Opera lovers throughout Germany as a tour guide for Tal was a fantastic way to put all my abilities to work. Being able to arrange a musical meeting of the Regensberger Domspatz boys choir was truly a miracle!

Now at age 71 in Spain, Ataxia has totally affected my singing abilities and walking abilities – I can still listen to music and find happiness and joy! My ears still work and allow me to love and hear the music on the radio or player.  I can hear and feel the music that means so much to me.

Thank you Tal !

Doomed from the Beginning

Most of the story until now has centered around my singing career. But my second love was GOLF ! Two things that ultimately influenced my destiny were:

1. Not knowing that the Gene of Ataxia ( olivopontocerebellar atrophy) was inherited in me at birth and that it would affect my life’s choices no matter what I did.
2. Girl’s didn’t make sporting decisions about career choices in the 50’s or early 60’s like they do today. Anyway, my university acceptance grades for a scholarship would have been too low back then.

Looking back, I had no choice! Ataxia is more devastating for people and their families living with a Neurodegenerative disease. Some day there will be a treatment or a cure for others . Donations to Ataxia Research will help scientists get a grip on things. 🤞

My Ataxia and Golf!

My Ataxia (olivopontocerebellar ataxia atrophy ) was first diagnosed in 1986/87 . At 1988 my singing career in Europe came to an abrupt end. But before all this I had a pretty normal life. Music and Sports were high on my list of study choices in college. The thought of going to a university to study and have a golf scholarship was the furthest thing from my mind. New York City and all my musical/ vocal prospects were close to home.

It’s a shame because I was a gifted golfer! To get a golf/study scholarship meant going to Florida, Texas or California . Music won out and I stayed close to NYC. But I forever loved the game of Golf. Ataxia had a different future for me . Still my senses are aroused when I go past a golf course that has freshly cut, wet grass and perfectly manicured greens. How wonderful it would be to participate in a major golf event to fundraise for Ataxia!

Someday! 🏌🏼‍♀️🙏🥰

Independence Lost Forever

On July 17 th, 2015 – Ataxia took away the one last function that I loved and still allowed me to do – DRIVE! My license ran out and I was put in the unfortunate situation of having to declare any deficiencies with co-ordination due to Ataxia. So naturally any renewal of my driving license was in peril. Driving was out of the question!

This meant that my abilities regarding driving were under scrutiny. This also limited my sphere of travel. The only function I could do was to ride and manage my electric scooter. The limitations affected my shopping and restaurants. Thank God – technology has created a small lightweight scooter that can be stored in the back of a car. I had to live with my limitations. No more DRIVING!

What is olivopontocerebellar atrophy Ataxia?

This hereditary form of Ataxia was first diagnosed in my mother and grandmother. Again it was diagnosed in me in 1988. This is a rare hereditary disease form of Ataxia. OPCA is a slow moving progressive hereditary Ataxia that has an overlapping disease likeness with the Spino cerebellar ataxias.

But neurologist still cannot categorize it. There is only occupational therapy available for the progression of balance, gait, mobility and speech. No cure is known !

Continuing story!

There is more to add to the olivopontocerebellar atrophy story than we ever thought. The NORD database made it possible for this information to be available. Only since 2012 can researchers pinpoint to similarities of OPCA to a very rare form of cerebellar ataxia. This form is called Multiple System Atrophy. The recessive gene is passed down with 50% certainty with every pregnancy. Most people are affected by the time they are in their 30’s. All women affected are made aware of the hereditary possibilities of having children. But like most people affected with MSA / olivoponto-atrophy there is no known treatment or cure for this disease.