I’ve always been a very active person with a huge social network. That is why this illness is not only a complete change in my life, but represents a personal catastrophe.
Every year 3 out of 100 000 people receive the devastating diagnosis of ALS (Amyotrophic lateral sclerosis).
ALS is a debilitating disease characterized by rapidly progressive weakness, muscle atrophy and fasciculations, muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia), and difficulty breathing (dyspnea) etc.
In the end, you are locked in a paralysed body with an active mind. Unfortunately, ALS is not treatable.
Statistically, as an ALS patient, you might survive 3 years after your diagnosis. Together with my family it was decided that I should continue to live my life with the aid of a ventilator.
I had never been fond of technical equipment, and despised working with a computer.
But VS Ultra (ventilation machine), EEG cap, brainwaves and BCI have become a normal part of my life.
BCI (Brain-Computer-Interface) is a pioneer making technology, which allows me to create art and therefore, reconnect to my old life.
BrainPainting is painting with the help of my brain activity and a specially created computer programme.
Canvas, brush and colour palette are digital. Concentration and my mind produce expressive paintings.
For the first time, this project gives me the opportunity to show the world that the ALS has not been the end of my life!
Before my illness, I often visited the west coast of Scotland. The tiny island of Easdale near Oban is a special place for me.
Easdale Island in its Community hall gives artists the chance to show their art in unique surroundings to a growing public.
An exhibition in that context would be the ultimate fusion between sick bed and global village.
The proposed exhibition in the gallery is timed for July this year.
For the first time, my paintings would be shown in Scotland.
As everyone can understand, the organization of this exhibition goes hand in hand with a huge logistical effort.
An international audience will not only see the new possibilities of a groundbreaking invention and a new art form, but a woman who does not give up, but keeps a stiff upper lip. A tough cookie!
Projects like ours give disabled artists back their pride but also the chance to use their creativity in a new way.
This is only possible with the use of the most modern techniques and the support of many people.
Only a handful know what ALS means to the patient and their families and research into the disease is just in its infancy .
Peoples poor knowdledge and inhibitions often lead to the ALS patient losing touch and becoming isolated.
We want to break this vicious circle!
My project is an appeal to all fellow patients, relatives, friends and last but not least medical science not to let us down.
My point is: Brainpainting is just the beginning!
And the start of developing meaningful communication for ALS sufferers.
The money will be used for the printing and framing of the works as well as for posters and other publicity. Due to the nature of the illness we will need things beyond a normal budget. This starts with the travel and accommodation arrangements for our nursing team, the special transport from Glasgow Airport to Easdale Island and back.From lots of medical equipment to a generator which would prove to be vital in a power cut.
Should the money from the supporters exceed these costs, it will be used to finance further exhibition projects in Leipzig.
The team has already collected some money during the last year. However, this is not nearly enough. That’s why we need your support!
At this point, we would like to mention our other supporters, without whom this endeavor wouldn’t have been possible:
• First of all, our nursing team from GIP (Gesellschaft für medizinische Intensivpflege mbH / corporation for medical intensive care) who are not only accompanying us on the trip but are essential for BP at home.
• Guger Technologies, who are providing the technical equipment;
• Seafari Adventures, who are providing free transport across the water.
The artist and her family, Easdale Island Community Hall and Community, scientists from the University of Wuerzburg especially Elisa Holz, Loic Botrel and Professor Andrea Kuebler, Guger Technologies from Graz/Austria, Ghalia Asaid, Lucy Johnstone, Christiane Wolf, Lars and Anne Scharnholz with kids, Kerstin Breuer.
We are deeply grateful for your support. It will help us to make this wonderful and unique project come true.
Only 2 days to go until the preview and opening of the exhibition! We're busy with cleaning and preparing the frames and getting the artworks organized. The press was already here. We'll keep you posted, see blog later on for photos! Nur noch 2 Tage bis zur Eröffnung der Ausstellung! Wir sind mit Rahmung, Hängen und Vorbereitungen gut beschäftigt! Die Presse war auch schon da. Wir halten Euch auf dem laufenden, Photos posten wir im Blog!
We've got only 2 days left in our project and have reached our target and you're still supporting us, today we are at 111%. Family, friends, fans and supporter -you are just phantastic! We are all deep in preparation for the trip and exhibition as you can see from the many blog entries. To keep it short and sweet: THANK YOU :-)
Wir haben nur noch 2 Tage Projektzeit und haben unser Ziel schon erreicht und es geht ja immer noch weiter, heute waren wir bei 111% . Familie, Freunde, Fans und Supporter - ihr seid einfach phantastisch ! Wir sind alle kräftig bei der Vorbereitung der Reise und Ausstellung, wie ihr ja aus unseren zahlreichen Blog updates entnehmen könnt. Daher erstmal nur kurz: DANKESCHÖN :-)