In early May EHA travelled to Germany to visit a clinic specialized in neuropsychiatry. The clinic sees many Huntington’s disease (HD) cases each year. It is involved in Enroll-HD and serves beds for patients with HD. They try to focus on the complexity of the patient’s needs – to see the person behind the disease.
EHA was invited to visit Taufkirkchen in Germany and the KBO Klinik Taufkirchen (Vils). It is a clinic in the Bavaria region specialized in neuropsychiatry. For EHA this clinic can be an important collaborator in a lot of different aspects related to Huntington’s Disease.
The visit was initiated by neuropsychiatrist and senior consultant Alzbeta Mühlbäck. She is EHA’s own doctor: the doctor that answers questions asked through our Ask the Doctor.
Find out more: Any questions about HD? Ask the doctor!
It was our first visit to the clinic. We entered eager to learn and left full of enthusiasm. We really want to extend the collaboration with our new friends in Taufkirchen.
We met a lot of patients at the Huntington department. They were in the early to late stages of the disease. They looked happy and satisfied despite their personal situation and everyday challenges.
Enroll-HD
Taufkirchen has enrolled 200 patients in Enroll-HD – and the numbers steadily increases. The clinic is now ranked as number 4 in Germany. To reach out to the participants the Enroll-HD team with Dr. Mühlbäck in Taufkirchen has developed a unique strategy; in addition to traditional consultation at the clinic they offer to visit Huntingtonians in their homes and perform the procedures in safe and well known surroundings.
“This has been a very good experience for us,” Dr. Alzbeta Mühlbäck states. The approach has lowered the threshold and being part of the Enroll study is experienced as a positive and much less threatening thing to do.
As the head of clinic and its medical team, Dr. Ralf Marquard said: “We try to individualize the treatment and we focus on the complexity of the patient’s needs”.
The Snoezelen Room
Another service that impressed us in Taufkirchen was the Snoezelen room. Snoezelen originates from the Netherlands and is a method aimed at the sensory system. It is a special equipped room with a lot of different options – aimed to relieve daily stress. It is a world of calmness, stimulation of the emotions and an opportunity to be alone with your partner or family when they visit the clinic. There is beautiful light, music, visual stimulation, water bed etc.
Rudolf Dengler is one of the pioneers in nursing of HD. He wrote the first guidelines for nursing as early as back in 1993. He is head of the nursing at the clinic. “We want to create an atmosphere far from what the patient normally have sitting in their chairs or lying in their beds. We actively use the Snoezelen room to create a kind of balance where body and mind are in harmony,” Dengler states.
Collaboration
Dr Marquard also states that research is an important part of Taufkirkchens strategy: “We had participants in the Pfizer Amaryllis trial which was finalized late last year. We also have patients in a Deep Brain Stimulation trial. In addition Dr. Mühlbäck is doing a Phd study on voice analyses where also the Q motor measurements are used in collaboration with George Huntington Institute”.
The President of the Bavarian HD Advocacy group, Roswitha Moser, participated in the meeting together with the vice-president of the German Huntington Association Michaela Grein.
“Thank you all for the work being done! I hope we can extend our partnership and that you will strive together with us to find a treatment. We all need to be partners and friends – to be Huntingtonians united. We have to collaborate across borders. This is the only way for us affected by HD to become stronger together,” President Astri Arnesen states as she left the clinic. Arnesen hopes to see EHA’s new friends in Sofia this September.