Ataxia has defined most of my life. I was born with hereditary spinocerebellar ataxia and I am a third generation ataxian! All of the girls in my family are affected. The progressive nature of this disease has affected my speech, balance, fine motor skills, swallowing, intestinal movements and my mobility.
About ataxia is a term for a group of disorders that affect coordination, balance and speech.
Any part of the body can be affected, but people with ataxia often have difficulties with:
But the greatest personal loss was my operatic career at the age of 38. After my diagnosis I was deemed a risk to be on stage, which left me devastated and feeling forced out of not just a career but something that I truly loved. Living in Germany, I was given a disability pension and offered a retraining programme in theatre management. Sadly, in time, ataxia forced me out of this programme too.
My partner was a huge support to me during this incredibly dark period. In fact, we even moved from a cold Germany to the warmer climate of Spain to try and help with my quality of life. As the disease progressed, we bought a mobility scooter to aid me.
To keep myself busy and active in Spain I threw myself into a project. I was involved/started the first palliative care hospice service on the Costa Blanca called Sweet Charity Hospice Fund. Unfortunately, due to stress and health issues (I had breast cancer and a mastectomy; my ataxia also continued to progress) I had to step away from the project and the service was discontinued.
Driving change and helping others with ataxia
At the age of 70, it is highly improbable that the wonderful new stem cell and genetic research into ataxia will benefit me, but leaving a legacy is important to me. My daily needs have helped me to understand the needs of others, and I want to help create a brighter future for people with ataxia.
It is through my experience, knowledge, passion and commitment to help that the idea for the Ataxia Care Project grew. The project aims to support people with ataxia through crowdfunding, making a difference to their living situation by funding home improvements, providing equipment and care assistance.
The Australia challenge—a virtual mapped mission from Melbourne to Sydney
Raising funds for ataxia care and research inspired me to develop a virtual fundraising challenge. The challenge combines sports, climate change, raising disability awareness and charity work, all of which are important issues to me—you could say I have found a way of joining the dots and combining my passions in one virtual event!
The Ataxia Care Project have utilised the expertise of Zento Event to create a special fitness virtual mission to raise funds and global awareness for ataxia. The event has been created to be inclusive for all ages and abilities. You can do it your way—run, bike, walk by yourself or in team of up to 10 people. The virtual mapped mission from Melbourne to Sydney, along the golden south west Australian coastline gives, participants access to Google Street View along the entire route.
The challenge is to virtually complete the route between now and 1 September. That’s a mere 1,250 kilometres!
Not one to shy away from a challenge I am taking part in The Challenge and I’m hoping to inspire others of all abilities to do the same. Due to my health and because of the weather, my participation is limited, but my caretaker is my nominated person to help me complete the challenge, and so far between us we have completed 120km since the 15 February.
Participants pay 25 euros to participate and after the 7 Euro admin fee to the website hosts, the fee goes to raising funds for care and research into ataxia and we are also working with the organisation One Tree Planted who will plant five trees for each participant who complete the challenge by the 1 September.
“Since hereditary Ataxia made having children genetically impossible on my own - the One Tree Planted organisation has given me the opportunity to create a new living legacy. These five trees planted for every participant of the virtual fundraising challenge are my gift to climate change and make a living legacy possible.
ShieldUs are joining campaigners all around the UK calling for our Learning Disability Community to be given priority for vaccines and the right to shield.
Following the Guardian's article on the 13th of February “Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities” we learned that younger people with learning disabilities aged 18 to 34 are 30 times more likely to die of Covid than others the same age from Public Health England.
This coupled along with the Analysis by the Office for National Statistics showing that 6 in 10 Covid-19 related deaths were of people with a disability, desperately proves the need for action to protect and save our most vulnerable.
These figures are staggering especially given there are approximately 1,130,000 adults with a learning disability in the UK, 351,000 are children.
The Care Quality Commission said in December that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had caused potentially avoidable deaths last year. The CQC warned in December that some of the “inappropriate” do not attempt cardiopulmonary resuscitation (DNACPR) notices applied in the spring may still be in place and called on all care providers to check with the person concerned that they consent.
DNACPR should never have been used in this way and it's horrifying to hear that Mencap are still hearing this practice is continuing even after the CQC warned in December that vulnerable lives had been lost.
The CQC is due to publish a report on the practice within weeks. Our shielding community and people with learning disabilities have suffered horrendous discrimination throughout this pandemic.
It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before Covid died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out. The JCVI and government must act now to help save the lives of some of society’s most vulnerable people by urgently prioritising all people with a learning disability for the vaccine.
Now is the time for action, especially as our Clinically Extremely Vulnerable children many of whom have learning disabilities cannot have the vaccine! ShieldUs fully support this call to the JCVI and all the Devolved Administrations to act now, and protect these vulnerable lives by:
For more information and to get in touch with ShieldUs go to:
Rare Revolution Editor