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

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 book gives great information with excellent photos of the exercises you can do to strengthen your body.

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.

I heard about Kevin's book while doing research after my diagnosis of Ehlers-Danlos in 2015. Both my former pt and I purchased his book and began the protocol. I had so many set-backs, which Kevin mentions is common for those of us with EDS, that after almost a year of working through the exercises, my pt suggested I see him in person. I visited Kevin and was impressed with how much he knew about EDS as well as the secondary issues that come with it. My one time visit with him (I'm located in the south and he's in Rhode Island) was very validating and confirmed even more how aware he was and what a wonderful hands on physical therapist he is. I've been using his book for almost a year but due to my set-backs, didn't progress as far as I had hoped. After visiting him I am feeling more confident that I can make it through his protocol, even if it's slow and steady. I am only able to visit a physical therapist so many times a year due to my insurance, so I am not able to visit a pt 2 times a week, as suggested in the book. I am very thankful that Kevin wrote this book for both physical therapists and people like me that have EDS and are frustrated with the lack of understanding or help available to those of us that don't live near him and aren't regular patients. I feel his protocol is sound and I like that he offers alternatives to exercises if you are struggling with some of them. I wish that there were more pictures showing certain exercises although pictures along with instructions are in his book. In my opinion, some need more explanation and additional photos. For instance, some of the pictures show a man in shorts but his shorts are covering his knees and need to show more detail. I don't regret my purchase of his book although some parts of it do feel a bit rushed. I'm happy that he wrote it so that other physical therapists have guidance on how to help us without harming us.

I have had problems with joint pain / multiple dislocations and subluxations for years. I've been in PT mulitple times and it has never been particularly helpful - in fact, I usually wind up more injured than when I first started. About a year ago I had a doctor insist that I needed to go back to PT with the purpose of developing and implementing a full-body strengthening program. I begrudgingly went because he wouldn't drop it and lucked into seeing someone who understands connective tissue disorders and how to go about treating them. It has been life changing. Unfortunately, we haven't been able to work on a full body preventative strengthening program because we have been dealing with multiple injuries. I bought this book to see what I could do at home to augment what my PT is already having me do. It is a great book, and the only one of its kind (that I am aware of, at least). I do have some quibbles with it, though. Negative: * The author makes it clear in his introduction that you are to use this book with a physical therapist. He says this will take 2-3 visits a week for 6-12 months. I don't think this is practical for most people. My insurance pays for 20 PT visits a year. After that the cash pay price for my PT is $75 a visit. We can swing 1 visit a week paying cash because PT allows me to function. $225 a week for PT is not in our budget. * He is also adamant that you need to follow the protocol of progression of exercises exactly, without skipping around to address things that hurt NOW (chronic injuries). On some level I understand this reasoning because dealing with a long string of chronic and new injuries is what has prevented me from figuring out a whole body program with my PT. However, I don't think a rigid approach is practical. For example, I injured my shoulder. It was so painful that I could not sleep. I couldn't lie down on my back because it hurt too much. I also couldn't raise my arm. This was not a brand new injury - it has been an issue for years. It never really healed after the first time I dislocated it, and then got worse and worse until I couldn't ignore it. If I had a PT tell me that they wouldn't help me with my shoulder until I had gone through back exercises for the sake of protocol / the larger picture, I would find a different PT. As a patient, I think there needs to be a balance between keeping the chronic injuries under control and working on the preventative. * I am disappointed by the pictures in the book. They aren't very high quality / resolution. I suspect that having better pictures would have dramatically increased the price of the book. (Which, by the way, I think is a fair price. This is basically a textbook for a physical therapist. To reach more people the author went through and also included a translation into normal person speak. The price is less than 1/2 what a typical medical textbook costs. It's comparable to a couple of co-pays, or less than one of my cash visits with my PT. You also have to think about what a narrow audience this book addresses. I don't see it hitting the NY Times best seller list.) In addition to the quality of the pictures, the model is wearing a baggy shirt and shorts that obscures his knees and elbows. I wish I could better see what his knees and arms are doing. * He states that you need to have a geneticist diagnose hypermobile EDS and then after the diagnosis you start the protocol and assemble your team. The problem with this is that the geneticists that *know* connective tissue disorders are swamped. Having to wait over a year to start to get things going is too long. My PCP diagnosed me, referred me to genetics to confirm and also sent me to several specialists (cardiology, GI, allergy, PT) to get the ball rolling while we waited for genetics to have an opening (which wound up being 18 months later). Those specialists did things and gave me information that immediately improved my quality of life. If I had to wait for genetics to confirm my diagnosis I would still be waiting. The positive: * This is a whole body program. Seriously. There are face exercises. It is INCREDIBLY comprehensive and takes you slowly through different levels of exercises. He gives modifications and instructions on what to do if you can't tolerate something. * The author really and truly understands EDS. He acknowledges things that are unique to EDS, like coming out of PT more injured than when you started and the weird injuries that don't happen to typical people but are rampant in those with EDS. He gives instructions to the physical therapist on how they need to modify massage and mobilization techniques to avoid accidentally injuring you. He talks about POTS. He talks about who you need to have on your medical team and why. It's pretty incredible. * The non-medical speak explanations of the exercises are easily understood so that you can do this on your own (even though you aren't supposed to.). The medical speak is in there too and isn't inaccessible if you have a medical dictionary or google handy. * He includes a protocol on adding cardio to your activity. This is great for POTS and for people who have a hard time pacing themselves. I always feel great when I am exercising, decide to push myself a little bit harder, and then wind up feeling like I've been hit by a bus a few hours later. * There are lists of what you need to do each day when you are working through the protocol and for when you have worked through all the exercises. It's a great book. My issues with it are pretty picky. I wish Amazon allowed half stars because I would give it a 4-1/2. I am planning on using the book mostly on my own to augment my current PT program. I am going to have my PT double check my form on the exercises before I start doing them at home and I do plan to work through the protocol as it is written. For me this is a reasonable approach, although it is not exactly what the author recommends.

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.

This book has been a life saver! I had surgery last December and, instead of healing, I started dislocating random joints left multiple times a day and accumulating injuries. I had no idea what was going on. Long story short, my physical therapist started questioning if I had EDS and told me to research it. I did and stumbled across this book. I kept having lots of set backs in physical therapy but once I started following this book and learned to take things slower, I gradually began to get better. I still have a ways to go health wise and in the book but just being able to see improvement, feel better, and have a guide on what to do is so great. When I started the book I was having 5-15 joint dislocations a day and now I'm down to 1-2 dislocations a day. If you have EDS, especially if you are newly diagnosed or think you might have it, I can't recommend this book enough. It's a great resource and has been invaluable to me.

This book actually gave me my life back! I bought one for me and one for my physical therapist. During covid I did an entire year of PT via computer with my therapist who is located 80 miles from where I live. We carefully followed the protocol outlined here, and I went from walking with a cane and needing two hip and two knees replaced, to now riding my bike again daily, without pain! This book is powerful stuff. Written by a well known PT who practices in Rhode Island, Kevin Muldowney, it is specifically geared towards those of us suffering with the connective tissue disorder known as Ehlers-Danlos. I was diagnosed with hEDS a few years ago, and thought it was a death sentence, but with this protocol and my wonderful PT, I'm a new woman!

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

Amazing - magic! I started to follow the protocoll and several months after I feel so much better. I especially appreciate that the protocol is written by a couple, thus integrating female and male views. The protocol starts by core and pelvic bracing as foundations for exercises while the exercises are shown by a man. This indiciates that we - especially as hypermobile folks - need to overcome gender stereotypes and focus on movement that supports our actual anatomies.

Living life with EDS is hard enough but the lack of movement each day makes it worse. It has info to make awareness yourself of the condition and how to navigate it, but also to hand to your physio. Its a great book for anyone with a CTD or anyone with a chronic condition keeping you in bed-- except the extraneous info on EDS specific issues, but the exercises have great progressions from extremely basic and focuses on stability of core first.

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)