Author Chronicles Journey with ALS, ‘Writing’ with His Eyes
A new book offers a poignant look into life with Amyotrophic Lateral Sclerosis (ALS), detailing one man’s struggle and resilience as the disease progresses. Claudio Marchesin presented his work, “The Divine Comedy traveled against traffic. From Paradise to Hell my slowed down journey in Dante’s footsteps,” on Thursday at Palazzo dei Trecento, revealing a unique method of communication born from necessity.
Marchesin powerfully recounts the moment of his diagnosis, describing a wave of despair shared with his partner. “I suffer from Amyotrophic Lateral Sclerosis. When the professor tells me the diagnosis in front of me and my partner, the smiles are not there. I look at her and see that she is desperate. I would like to run, cry, scream,” he shared. This raw emotion underscores the profound impact of an ALS diagnosis.
The book itself is a testament to the enduring power of the human spirit. Since receiving his diagnosis in 2018, Marchesin has lost the ability to use most of his body, but remains connected to the world through his eyes, heart, and brain. He “writes” each page using an ocular pointer, a technology that translates pupil movements into text and speech. This innovative approach allows him to continue expressing himself and sharing his story.
Rising ALS Diagnoses in the Marche Region
The presentation of Marchesin’s book also highlighted the increasing prevalence of ALS in the Marche region of Italy. Approximately 30 new cases are diagnosed annually. Healthcare officials are working to provide comprehensive care for those affected.
“We currently have 98 patients followed with almost 3 thousand services guaranteed to them annually,” explained a director of Ulss 2, Francesco Benazzi. These services include crucial diagnostic tools like magnetic resonance imaging (MRI), as well as ongoing support from speech therapists and other neurological specialists. Around fifteen hospitalizations are linked to the disease’s progression each year.
The Challenges of Early Detection
Despite advancements in medical care, diagnosing ALS remains a significant challenge. “The diagnosis of ALS is one of the most difficult to make,” stated Gianni Sorarù, head of the Monteneurone reference center of the UniPd hospital. Early detection is critical for managing the disease and providing patients with the support they need, but the subtle and varied initial symptoms often make it difficult to pinpoint.
Marchesin’s story serves as a powerful reminder of the realities of living with ALS, and the importance of continued research and support for those affected by this devastating disease.
