Coping with a Myositis Disease [Paperback]

James R. Kilpatrick (Author)

Book Description

Publication Date: September 1, 2000 | ISBN-10: 0970167105 | ISBN-13: 978-0970167101

Myositis refers to inflammation of the muscles ("MYO" means muscle and "ITIS" means inflammation). Myositis is a mystery disease in several diseases:

Polymyositis (PM) means inflammation of many muscles.

Dermatomyositis (DM) means inflammation of many muscles and skin

Inclusion Body Myositis (IBM) means inflammation of many muscles with "Inclusion" (abnormal protein deposits) and vacoules (holes) in the muscle cells and fibers. Virtually 95% of physicians are unlearned about this chronic, lifetime muscle disorder. So little information is given to the patients after they have finally been diagnosed, but offered no further information about the future expectations might be.

The four Myositis diseases have individual case reports from patients with the diseases, telling how the disease affected them, their families, their working and the dark future that no physician had told them would happen.

The Myositis patients are telling their stories to help newly diagnosed Myositis individuals learn more about the disease, what to expect. Several Neurologists who have read the stories have said the book will be a great teacher to the medical profession because the stories give a glimpse into the daily life, the philosophy on the mind and inner workings of the patient's body; whereas the medical profession can only ascertain what they learn through diagnostic procedures.

Editorial Reviews

Review

"...These finer details from the patient's perspective can not be found even in the most specialized textbooks..." -- Dr. Aziz Shaibani, Director, Nerve & Muscle Center of Texas, Houston Medical Center

"...will be of great importance and a learning tool for physicians." -- Dr. Richard Barohn, Chief of Neurology, University of Texas Southwestern Medical Center of Dallas

About the Author

James R. Kilpatrick was diagnosed with IBM August 1991 in Dallas at the age of 59. Because there is so little knowledge about Myositis, he sought patients and medical professionsals as he explained his project of wanting to have such a book as Coping with a Myositis Disease. His response and encouragement were overwhelming.

Mr. Kilpatrick has earned four university degrees from Ohio and one from a Louisiana university; has been a certified Hospice counselor to AIDS patients for 13 years before the Myositis disease was diagnosed. At time of diagnosis, he was Comptroller of seven 501(c)(3) non profit-organizations. He is/was a professional organist, on TV and radio for 25 consecutive years.

The Kilpatricks began a Myositis Support Group in 1996; now one of the largest such groups in the country. They have been married 47 years, have a married daughter, son-in-law, and two mid-teen grandchildren in the Dallas area. The Kilpatricks make their home in Athens, Texas.

Product Details

• Paperback: 172 pages
• Publisher: Kilpatrick Publishing Company (September 1, 2000)
• ISBN-10: 0970167105
• ISBN-13: 978-0970167101
• Product Dimensions: 8.3 x 5.4 x 0.5 inches
• Shipping Weight: 8.8 ounces
• Average Customer Review: 4.6 out of 5 stars  See all reviews (16 customer reviews)
• Amazon Best Sellers Rank: #1,230,941 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

9 of 9 people found the following review helpful:

5.0 out of 5 stars Coping with a Myositis disease, September 27, 2000

By 

Karen Cuozzo (Lake Hiawatha, New Jersey USA) - See all my reviews

This review is from: Coping with a Myositis Disease (Paperback)

When i started reading the book, i have found peace within myself. Jim K's "Coping with a Myositis disease, has shown that i am not alone, and what i am going through is real. His presentation was excellent, using personal stories, of which i can relate too. I have found in the last few days, people who have read the book know exactly what i am going through. I just left a copy with my Rhematologist. He looked at it and said he would read it too. I feel that Jims book has opened my eyes and i have started the acceptance stage of this illness. I was in denial for at least a year. Jim Has done a great job in his presentations of all the myositis' forms. I know now that what happens to me through the book is really real. I want to take this time to personally thank Jim for his effort and fine Job.

8 of 8 people found the following review helpful:

5.0 out of 5 stars A must-read for any Myositis patient, caregiver, doctor, September 27, 2000

By 

Ralph Becker - See all my reviews

This review is from: Coping with a Myositis Disease (Paperback)

This book is unlike any other written for the Myositis patient or caregiver. It's a compliation of stories written by the patients themselves, in their own words. There is a section for each major type of Myositis (Dermatomyositis, Polymyositis, Inclusion Body Myositis, and Juvenile Myositis).

Each of the stories has their own value and rhythm and style; some are concise and factual, some are long and filled with emotion. Together, they create a tapestry of struggle and support and hope. The stories are verbatim accounts from patients; as a result, there are plenty of spelling errors and grammatical mistakes. Rather than detract from the stories, they add a sense of realness and honesty to them.

There is so little affordable information available about this disease that this book is an absolute must-read for anyone faced with it. Caregivers, too, can gain insight into what their loved ones are going through. Doctors could better understand their patients. Even sufferes of other, similar diseases would benefit from reading this book. Highly recommended.

6 of 6 people found the following review helpful:

5.0 out of 5 stars Book is One of a Kind, September 22, 2000

By A Customer

This review is from: Coping with a Myositis Disease (Paperback)

When a person is newly diagnosed with a chronic disease as Inclusion Body Myositis (IBM), the world suddenly comes apart. Gone are your hopes, your dreams and aspirations.

We are scared beyond belief because we know there is no cure, no medication, no treatment for IBM. Not having any thoughts of this incurable disease, our lack of prepartion for the changes in our lives, our families, our lifestyles, our finances, the realization that life will never again return to what it once was.

The Myositis patients in this book talk about their respective disease with accuracy, sensibility, compassion, and practical knowledge that all good things must come to an end and we have to accept the day-by-day acceptance and endurance of the disease.

I understand that Mr. James Kilpatrick brought to fruition the idea of the book until it was actually in book form in just less than seven months. What an accomplishment!

Those Myositis associationals groups on the Internet should jump at the chance of offering this book to their memberships.

Best wishes to Mr. Kilpatrick and to the thousands of sufferers of having a Myositis disease.