In September 2019, at the age of 54, Claes Buxfeldt was diagnosed with Amyotrophic Lateral Sclerosis, ALS, a neurodegenerative disease characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. When the motor neurons can’t signal to the muscles, the muscles start to waste away, become weaker and eventually paralysed. For Claes, the progress was fast and today, the only way he can communicate is through his eyes. In this article, Claes and his wife Kerstin share their story about the disease and why research in medical science is so important.

In hindsight, the couple recalled Claes to be unusually tired already during the fall of 2018 but the first wakeup call that something wasn’t quite right appeared in April 2019.

Claes fell over when he was out painting during Easter, Kerstin describes. It just happened and he couldn’t explain why. In May, it started to happen more frequently, and we realised that he needed to see a doctor.

Diagnosed with ALS

In the summer of 2019, Claes went through several examinations at the Carlanderska hospital in Gothenburg and was then referred to the Sahlgrenska hospital where he was diagnosed with ALS. This news was hard to digest. Today, Claes receives excellent care by the ALS-team at Sahlgrenska hospital, a high functional and professional team according to Kerstin. He lives at home and has round the clock care by two assistants.

After being diagnosed, Claes read a lot about ALS to find out as much about the disease as possible. Perhaps this was a way to process his new reality, but it came natural for him after having spent 30 years in the pharmaceutical industry.

The importance of ALS research

Before Claes stepped down due to his illness, he worked full time providing strategic advice to pharmaceutical companies at NDA, where he still holds employment. During his long-standing career he held several leading positions within the pharma industry, such as working with Alzheimer’s research at the department of health economy at AstraZeneca in Södertälje.

To Claes, research is the key to find new therapies to treat or cure ALS. By coming forward with his condition and giving the disease a face, he hopes that more people can understand the importance of research and that more resources are needed for science to make progress in this area.

Quick deterioration

Despite the poor prognosis, Claes and Kerstin maintain a practical and positive outlook.

Claes describes ALS as ‘being run over’. Everything has moved so fast; it has been like standing in the express lane. Only three years have passed since the first symptoms in the winter of 2019 until today where he is in an electric wheelchair, breathing through a ventilator and fed through a tube. Both Claes and Kerstin feel that the disease progression slowed down slightly when he got assisted ventilation. The increased airflow became apparent in his gaze and on the colour of his cheeks.

Communicating through eye movements

With the support of Kerstin, Claes communicates through eye movements. She spells out the words and Claes indicates when it’s the correct letter. He blinks once or raises an eyebrow for yes and ‘says’ no by looking to the side.

Claes is still the sharpest knife in the box. He watches TV every day and is very interested in programs about current affairs. He wants to spend time with family and friends which we do and tomorrow we have plans to attend a concert together with some friends, Kerstin says.

*Hjärnfonden (The brain foundation) a Swedish charity that is dedicated to raising awareness and funding research into brain illnesses. Read more