Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS

My physical therapist who specializes in working with EDS patients (and who was the first person to suggest I might have EDS) recommended this to me. It’s broken down into sections based on areas of the body it focuses on and is divided into levels of difficulty, beginning with the most basic onward. It also is written in the progression you should do to get the most efficient results (so it has a section on the sacroiliac joint and core muscles that you should build up before moving on to limbs or other areas. This also decreased the chance that you will injure or dislocate something while you work through the progressions.Each section begins with a page to the physical therapist explaining things, in addition to sections to the PT under the individual exercises. It gives you clear images and written instructions on how to perform each exercise, what it does, and instructions on how you should increase your repetitions or duration safely.My favorite thing about this book is definitely that it doesn’t require you to go out and purchase any expensive equipment. For the entire book, all you need is an exercise mat, a set of 1 pound, 2 pound, and 3 pound hand weights, a yoga ball, a couple of exercise bands, a normal ball (like a school kickball or soccer ball), a pillow, and a towel. I bought all of my supplies at Five Below.The one downside to the book for me personally was that, since it’s a PT book, it doesn’t have a lot of exercises that target the fingers and hands/wrists. My fingers and wrists are big problem areas for me so that was a little disappointing but considering those are primarily OT issues, it’s understandable. The rest of the book was just so helpful that I wish Mr. Muldowney would release an OT companion book as I have yet to find any OT resources like this.This book on its own is incredibly helpful. If you want to get the maximum results possible, I would definitely suggest working on it with a PT who can make sure your form is good and make adjustments as needed for your individual needs. But for anyone who can’t afford a PT, this book is the next best thing and honestly seems like it would be better than working with a therapist who isn’t knowledgeable about EDS or HSD. It’s worth every penny.

This is a very helpful book for those with EDS/Hypermobility Spectrum Disorder/hypermobility. I would even say it might be helpful to those with conditions like POTS who struggle to find a good strengthening program since most of the exercises are done lying down or reclining. The balance ball exercises are challenging but the book even suggests doing them in a hallway/near a wall so you can catch yourself.The author is very clear and provides a good amount of information for both patients and physiotherapists. I personally like reading both sections, but I have a science background. The author is clear that the protocol should be done under the supervision of a therapist. I've done PT many many times. I can't really afford the cost or the time investment any longer. However, a lot of the exercises in this book are similar to ones I've done before so I feel confident to follow the protocol on my own. The difference between this protocol and my previous PT is that Muldowney sets out a very specific progression for the exercises. It does also build up to a whole body approach that will eventually set up a comprehensive home exercise program.The book itself is large, the size of a regular textbook. I lay it flat on the ground next to me while I exercise. Print is large, easy to read. The photos are okay, I can see clearly what I need to do for each exercise. They're black and white, not anything huge or spectacular, but they get the job done.

This is an excellent, well-thought-out book that is supported by science and clinical experience. It is invaluable, simply because of the insight that Mr. Muldowney has into EDS which is absent in the vast majority of the medical community. I have not been able to find a single health practitioner who really understands EDS. This book, in addition to being useful on its own, is helpful as a conversation starter with healthcare professionals. Mr. Muldowney not only validates the EDS and joint hypermobility experience but also gives us tools to help ourselves beyond pain management. In response to other criticisms, this is not a glossy, glitzy publication. However, there is absolutely nothing like it out there and the author has done a great service to this community by publishing it. And yes, many of us do not have access to a physical therapist who understands this condition and who has the skills of Mr. Muldowney. To try to get around that, I bought a copy for my physical therapist and she is willing to try to learn from it. Still, because of the high cost of physical therapy and because of the misunderstandings about EDS,I am hoping that his next book will be a user friendly version of this that patients who cannot engage a knowledgeable PT can do on their own. That would truly be a godsend.

I bought this for one of my children. It has been life changing. If you or someone you know has the symptoms of Ehlers-Danlos, then buy this book.

Compre el libro con mucha ilusión, Pero es un tanto "limitado" de en las técnicas que ofrece, creo que es ideal para personas que necesitan hacer terapia física en casa y no están familiarizadas con estas disciplinas, pues plantea ejercicios seguros y muy explicados. Si estás familiarizada/o con terapia física integral para sed no encontrarás nada nuevo e incluso quizá bastante desactualizado, pero es ideal para personas que no se dedican a algo relacionado con las terapias físicas!. En mi caso fue de vuelta, lo peor, lo vende amazon y me cobraron devolución! un chasco

Finally I Got a book where the author have expirence with Ehlers Danlos Syndrome and what kind of training is good.I am so glad

First of all, a huge thank you to Kevin Muldowney for writing and publishing this book! I am so pleased that there is finally a clear, step by step physical therapy program available for purchase, and I am delighted that the book was written for both therapists and patients. This is important since the key to successful EDS therapy is communication with your medical professionals.Before beginning the program in the book, I trained with a personal trainer for 3 years to build muscle strength (with POTS, Chiari & 2 slipped discs in neck) and made slow but steady progress during this time, but we were both essentially flying by the seat of our pants. This book has been extremely helpful in structuring my fitness plan, and my results since beginning the book have been truly exceptional and even exponential compared to the first 3 years without the book.I have made a couple modifications to the program, that I want to share with other EDSers in case someone finds them helpful:- While the book insists on daily exercises, I do them only ONCE weekly, to allow for sufficient recovery time. Any more often was out of the question as the exercises are deceptively challenging and demanded a long recovery time before the post workout aches went away. Remember, even EDS experts can't be the expert in your own experience, they don't live in your body!- Chiari - the author states that the shoulder & neck section of the book is counterindicated for those with chiari. I have to agree, with a caveat. I have chiari and, at first, the exercises did indeed cause chiari symptoms, so I stopped doing the exercise that was causing these symptoms (specifically the TYI series) and worked on the other exercises which did not aggrevate my Chiari. What has been working for me so far is to split up the first stage of shoulder exercises into three phases, each which must be completed according to the books rules before moving on to the next phase: 1. all exercises EXCEPT TYI (they did not cause a chiari flare for me) 2. MODIFIED TYI (performed while standing to remove the additional resistance gravity adds when laying down!!) 3. TYI laying down as in book. (Make sure to continue doing the SI joint maintenance excercises, this will help, too!)If you have questions, feel free to message me on inspire (mssingtime)

The book looked as if it had literally been printed off a home printer and the contents page was full of errors and spelling mistakes bad quality considering how much it cost so it was returned.