While Amyotrophic Lateral Sclerosis (ALS) is a relatively rare condition that only affects a small percentage of the world population, several books have been written on the subject.
These include resources about living with the disease, as well as first-hand accounts by people who have been diagnosed with ALS or are caring for someone who has it.
Some books are more practical and focused on the disease itself, providing tips on how to deal with a diagnosis and cope with the many hurdles that will inevitably lie ahead. Others are more personal and show how individuals have dealt with ALS and met the challenges with love and compassion.
Here we take a look a list of books that explore living with ALS, many of which provide practical and supportive advice that may be useful for anyone who has recently been diagnosed with the disease.
Often considered the standard text for ALS, this book was written by Dr Hiroshi Mitsumoto who is the medical director for the ALS Center at Columbia University.
Despite being written by a medical professional, the guide gives a fairly easy to understand overview of the disease and what individuals can expect from it.
The last edition was published some nine years ago so it doesn’t include the latest information related to ALS research, but it’s certainly a good place to start for anyone looking to gain a solid understanding of the disease.
The ‘Ice Bucket Challenge’ raised a lot of money for ALS research and put this previously unknown disease into the limelight with the general public. It also highlighted the life of former baseball star Pete Frates who was diagnosed with ALS.
In Pete’s book you will find a story of courage and determination in the face of adversity and how much can be achieved even if you have a life-threatening illness. It’s also a story of hope – great advances have been made in research thanks to the money that was raised from the hugely popular ‘Ice Bucket Challenge‘
Lou Gehrig was a hugely successful and famous baseball player who was part of the New York Yankees between 1923 and 1939. He was diagnosed with ALS and following his diagnosis, worldwide awareness of the disease increased significantly, so much so that ALS is still often referred to as Lou Gehrig’s disease.
This is an honest biography, not just of Gehrig’s battle with the disease, but his life before he was diagnosed and his success as a baseball player.
Despite its rather downbeat title, this is another honest and heartfelt autobiography by Jenni Berebitsky who was diagnosed with ALS in 2009.
The book was published in 2018 and sadly Jenni passed away a year later after having lived for 9 years with the disease. The book is not only about sharing her life experiences but it also provides sage advice to those who are coping with an ALS diagnosis.
More technical books about ALS are few and far between. This book is a recent addition to the collection, with further advice and updated research that both patients and caregivers will find useful.
It’s written by a neurologist with 30 years’ experience in dealing with the disease and someone who has been involved in delivering full-time care to an individual with ALS. It follows a question and answer style and presents information in an easy to understand format that answers many of the issues patients and caregivers are faced with.
It’s also a book that doesn’t shy away from difficult issues such as how to handle the later stages of the disease with end of life care and hospice choice.
If you are searching for a more upbeat message about ALS and solutions for dealing with it pragmatically and positively, Nadine Sands has been blogging about the disease after her husband Michael was diagnosed with it for a few years.
While the book covers difficult subjects such as dealing with Mike gradually losing his ability to move and speak, the overall message is positive and it’s a story of love and courage and well worth a read.
ALS books provide an insight into living with this disease. They offer not just valuable information about what to expect, but also deliver a sense that individuals diagnosed with ALS are not alone and that there is a lot of support out there.
While there is plenty of information about coping with the disease online nowadays, it’s worth taking a look at some of these stories whether you have been recently diagnosed yourself or are caring for someone with ALS.