The Carriers – Hereditary Disease Unstoppable!
My family, mainly on my moms side, goes back with Ataxia to the early 1900’s of my grandmother. My mother and other aunts and cousins new something was wrong with their balance, speech and motor coordination. But what exactly it was – neurological doctors couldn’t say. Generations of Ataxia research was just being developed.
Only as of myself and my sister in the 1980’s was anything really known about Ataxia. My father kept assuring us that his good genes would offset those of my mother. Little did he know then that he was carrying the gene in him that shows Ataxia has been passed on with a 50% chance. Both I and my sister have been affected by the Ataxia disease.
My sister unfortunately has a girl and a boy. Time will tell if they too are affected by the neurological disease. I on the other hand chose not to have children. Hopefully with me this is where the buck stops! But research still has a ways to go.
A dream is shattered!
My dream of singing was to be a means of making my life independent. The many years of musical and vocal studies now had to be replaced. Once a consummate musician with sport like physical attributes , was all being attacked by the disease of hereditary cerebellar Ataxia.
My precision of articulation was affected by the onset of disarthia and disphonia. I was now “behind “ the musical beat! Rolling an “ R” in the Italian text was impossible to produce. Passages requiring rapid articulation were hampered. The technologies of the opera house stage were moving beyond what my progressive Ataxia could cope with. I couldn’t stand without falling. Moving parts of the operatic stage and raked slopes were becoming increasingly more difficult to cope with. Imagine being told by a stage director that I was a threat to others on stage!
My dreams of singing some of the Mezzo Sopranos greatest roles of R.Wagner, R. Strauss and G. Verdi were lost forever. But my love for the music remains!
The Hospice Dream – Talking My Story Up
In the years n Spain I was founder and the inspiration behind the Sweet Charity Hospice Fund. This was in the time of 2004-2008 . This time gave me the experience of speaking to and with thousands of people about my Hospice Services dream and my own personal story! I presented this idea to groups, on t.v. and radio. I was becoming the face and voice behind the Hospice Dream for the Costa Blanca Spain.
Working on this hospice project gave me the chance to deliver a necessary service of home nursing care for the elderly on the Costa Blanca Spain. The Angel Nursing Network was created to started in collaboration with local hospitals, family counseling services and clergy alongside of our campaign to build a standing Hospice.
Running the Sweet Charity Hospice Fund
The Sweet Charity Hospice Fund needed a strong message and expertise in salesmanship in 2004 on the Costa Blanca. I had the necessary British community behind me. The colonial British mentality about the views of running a charity mixed with Spanish protocols and my American energy – just didn’t gel together. My personal qualities to get this dream off the ground and make it a reality were acknowledged but not fully accepted or encouraged by some people.
Running any business, especially a charity, requires many helpers , exact Spanish protocol and an astute business and financial background. The concept of a standing Hospice was a totally British thing ! Still, I managed to get many people on board. Even the Spanish families supported my efforts. By having hospice home care services “ the angel nursing network “ desperate families got the nursing care they needed . From bereavement services, to UK repatriation, clergy and so much more – the Sweet Charity Hospice Fund did it’s work throughout the south Costa Blanca.
In the 4 years we were active ( 2004 – 08 ) over 300 families we’re serviced. Due to the stress involved in this endeavor, my health suffered greatly. The resistance to my ways became too much for my soul and body. A mastectomy due to breast cancer in 2007 put an end to my dream. But life went on!
The Ataxia Diet since 1986 !
Ever since 3 generations of women have been affected by Spino Cerebellar Ataxia – In 1986 my mother, sister and I took part in the research of Dr. Susan Perlman at the Los Angelos Ataxia Center. We were asked to be a family based study of the Ataxia Diet. The diet study is today the basis for further research into the nutrition of Ataxia patients. This study formed the basis of my personal commitment to finding everyday solutions to living with Ataxia.
Now that I and others have poured time into genetic studies, solutions and hope we are all interested in finding a cure for Ataxia. Being 70 years old – we still don’t have a solution to the issues facing Ataxia. Organizations and charities such as Ataxia UK, the National Ataxia Foundation of Minnesota USA, FARA – USA and FEDES – Spain, have struggled to find treatments and ways to deal with this neurological disease Ataxia. But after more than 50 years of my lifetime searching – we still don’t have a cure.
Maybe it’s time to add a new technologies like Grace the nurse assistant or Robear of RIKEN research of Japan to help with the daily issues of this progressive neurological disease in private homes and elderly care homes. We need to look at every phase of the disease progression . With elderly patients in mind – the Solution Project and I have expressed a willingness to find researchers to help in the search for solutions to the everyday issues facing Ataxia patients. The new technologies are crucial to the future of Ataxia. 🙏
Body betrayal – coping!
My mother told me a story about the beginnings of Ataxia.
#1 – Ataxia ( which she didn’t know about ) and how her body betrayed her at the age of 13 years old. Her brothers played a nasty trick on her while ice skating. She lost her balance a lot while skating and her brothers left her to get up from the ice all wobbly and out of control of her movements.
# 2 – She always was left sitting by a fire when my father took me and my sister sledding or skiing. Wet and cold slippery surfaces we’re not her thing ! My mother made sure that Southern California and South Florida was the place to live were regional areas of dry and safe walking conditions existed.
#3 – Ataxia being in her life was a hard adjustment. Back then ( 80’s ) the mobility services were limited. But one story of joy sticks out particularly when she lived in Florida . The Disneyland people had her lead the main street parade on a scooter.
You can choose to be miserable or choose to be joyous! CHOOSE !