Title: HARD DAYS: My Life With a Neurodegenerative Disease
Author: Branko Lugović
Genre: Medicine/Health
Book Blurb:
This book follows a patient's journey with a rare, but deadly neurodegenerative disease. The book covers the full journey, from the early days of the disease, first symptoms, and multiple wrong diagnoses to treatment, which has helped the patient live a 'normal' life. The disease is a rare neurological condition that can cause problems with balance, movement, vision, speech, and swallowing.
Excerpt:
Neurodegenerative diseases are various incurable conditions characterized by the degeneration of nerve cells in the brain and spinal cord. The consequences of this degeneration cause various health problems such as problems with mental functioning (dementia) and loss of coordination of muscle movements, which causes difficulties in movement, speech and breathing. In addition to causing challenges for individuals, neurodegenerative diseases also impact their families and those around them. It is believed that there are more than 50 million people suffering from neurodegenerative diseases in the world, and that number will increase up to three times in the next few decades. Men are slightly more affected than women, and diseases appear in all age groups and in all geographical regions. The primary known risk factor for many neurodegenerative diseases is age, followed by inherited genetic changes and environmental influences, such as prolonged exposure to pesticides, toxins, and various chemicals.
Progressive supranuclear palsy (PSP), the diagnosis of the author of this book, belongs to the group of parkinsonism. The symptoms of PSP are like those of Parkinson's disease, especially at the beginning of the disease, but with slightly different neurological signs, so it is often called Parkinson plus disorder.
This book was written by a patient with a clinically confirmed diagnosis of progressive supranuclear palsy (PSP) and is intended for patients with the same diagnosis. It is also designed for other patients who have a neurodegenerative disease, that is, patients in whom nerve cells in the brain are damaged. It is about a patient with basic knowledge of medicine such as pharmacology, physiology, pathophysiology and pathoanatomy. Based on this knowledge, he describes and explains his own symptoms of the disease and how to control them.
This is not text from a scientist who is writing about neurodegenerative diseases, while citing literature data for his fellow scientists, neurologists, or medical students. This is not a book written by a neurologist for his colleagues or for patients with a neurodegenerative disease. This book was not written by a professional writer who knows the proper techniques. Finally, it does merely describe the difficulties a patient goes through to share them with other patients. It is about much more.
In writing this book, the author’s desire was to describe his knowledge and experience with one of the neurodegenerative diseases. The information is intended for those whose quality of life has been reduced due to degenerative changes in the brain caused by these diseases. Of note, the information is also intended for those who live with these patients or have them around. He seeks to make readers of this book aware that ordinary life, a life of a happy and successful family, can change in a very short time. Also, his intention is to help patients and not simply accept this serious disease and the imminent end of life, but instead to fight until the last day.
In this book, he openly shares his personal knowledge and own experience in fighting against a very serious disease. He wants to help others with the same diagnosis, and with other neurodegenerative diseases, with potential treatment and, as much as possible, in maintaining the best possible quality of life. In some places, he has added a bit of humor to show that there is still a bit of serenity in illness, although the diagnosis is serious and the prognosis uncertain. Humor makes you laugh, even when you make fun of yourself, but it also provides entertainment at times when no one feels like having fun. With humor, we satisfy desires, no matter how unreasonable such desires may be.
For eight years now, the author has been fighting a neurodegenerative disease. His symptoms have been developing gradually, at the beginning with lower intensity but later much faster and more expressed. In the late phase, the development of the symptoms even slowed, which is unusual. His experience shows that the disease can be fought, the progression of the symptoms can be slowed down, and an acceptable quality of life can be ensured - a life worthy of a seventy-four-year-old.
Buy Links (including Goodreads and BookBub):
Amazon
What’s your favorite thing about autumn:
I love the changing of the leaves and the cooler weather. It reminds me of when I was a child.
What inspired you to write this story:
The main reason I wrote this book is to help other people with my own experience. There is no cure for neurodegenerative diseases. My own experience says that it makes sense to fight and keep the signs of the disease under control. The book shows and describes more than 70 exercises with which it is possible to keep the muscles in good condition, that is, to prevent muscle atrophy.
Giveaway –
One lucky reader will win a $100 Amazon gift card.
Open internationally.
Runs September 1 – 30, 2024
Drawing will be held on October 1, 2024.
Author Biography:
The author spent 40 years working in research, academia, and the world of business. Following his PhD, he started his professional career as a lecturer and researcher. This led him to become the head of Virology Department and to work in laboratories in Croatia, Switzerland and the USA. During the late 80s he replaced the white lab coat with a suit and tie and started a 20-year long corporate career leading him to the position of a division director at the largest pharmaceutical company in the world. Since retirement, he spends his time working in the vineyard and olive groves.
Social Media Links:
Facebook, Branko Lugovic