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

by Kevin Muldowney, Kathleen Muldowney PT

Kevin Muldowney, MsPT has been treating people with Ehlers-Danlos Syndrome since 2005. As a physical therapist, he has developed an exercise protocol to help stabilized the many joint subluxations/dislocations associated with this genetic disorder. This book is intended for the person diagnosed with EDS to both inform them about the healthcare team needed to properly treat them as well as to guide both the physical therapist and their patient with EDS through the Muldowney exercise protocol. This book will cover such topics how joints sublux in this population, how to find the right physical therapist, how to exercise without injury and what physical therapy techniques works best. By the end of this protocol people with EDS should be better informed about what is going on with their body and how to make it better.

Genres: Health, Nonfiction, Disability, Medical, Reference, Personal Development, Self Help

400 pages, Hardcover

First published July 17, 2015

Reviews

[Benjamin Bookman · Rating 5 out of 5]

Absolutely life changing! This book isn't perfect - there are some editing errors and formatting issues - but the program it contains is amazing. It has, with no exaggeration, literally changed my life. I have been working through the exercises for over a year now, and can see such a huge improvment in my strength, stamina, posture, movement, and day to day function. I can work again, I can sit in a chair like a normal human being, I can hold parts of my body in place. I know, I know, it sounds too good to be true. But after years of failed medical and exercise/therapy programs, this one really does work. I can't say enough about this book.

[Rachel · Rating 3 out of 5]

**2.5 stars**

This book was recommended to me by one of my physical therapists. It helped out with the sacral instability issues I was having, but my concern is that it comes across as being one size fits all for Ehlers-Danlos patients. I would never be able to complete the upper extremity work recommended with the extremely poor condition of my shoulders. One surgical repair done and one soon to come!

The progression is very regimented and while that can sometimes be a good thing, at other times it is not. At one point, the program has 90 minutes of stretching per day. That is really over the top in my opinion and would be very hard for a large number of people to find time for. If you are unemployed and home bound, I'm sure you would have the time. Many ED patients have jobs to keep and families to raise. I barely squeak out 30 minutes of exercise a day!

Additionally, I found the production to be fairly amateur. Taking the pics in front of a blank/white/gray/etc... screen would likely have been more useful. Exercise/stretching pics with the model wearing big baggy shirts and shorts don't really work for me either. Even the size and weight of the book was an issue for me! I would have preferred a large paperback that could be easily opened to a specific page instead of a huge hard cover. It was crazy expensive, and hard for me to hold at times.

I do feel that I will use the book again in the future, but I believe there are many improvements that could be made to make it a much better resource for people struggling with this crazy disease.

[Stephanie Crescenzo · Rating 3 out of 5]

Lots of useful information in the book for anyone who struggles with EDS yet lives an active lifestyle. However, I can't say I agree with the author's advice to EDSers to never lift anything heavier than 15 pounds. Muscles only grow under tension, and as such they won't become stronger when you plateau at the same weight for a long time. Increasing my weights VERY gradually over several years has been the key to lessening my bad days. I'm pretty sure I would be in pretty bad shape right now if I never challenged myself and stayed in my comfort zone of tiny dumbbells and HIIT cardio classes. I agree with other reviewers that Muldowney suggests mostly a "one size fits all" approach to exercising with EDS. Not everyone with EDS is the same though, of course, so it's a bit disappointing that a supposed leader in EDS doesn't know this already. Regardless, most of the information presented here will do more good than bad, so it's worth a read if you're a fellow EDSer.
(Also, I find it pretty funny that the author advises people with EDS not to participate in high impact activities such as running, yet the cover image is of a man...running...)

[Jenny · Rating 3 out of 5]

EDS is one of those things that likes to pair with Celiac Disease, and we have suspicions that one of our children has it (it's tricky to definitively diagnose), so I'm in research mode. Living Life to the Fullest with Ehlers-Danlos Syndrome was recommended to me by a PT friend (thanks Jarel!). It's a specific PT program aimed at adult patients who are dealing with significant physical struggles relating to their EDS. So, thankfully, it's not something applicable to us now. I'm not a PT, so I can't speak to the value of the specific program Muldowney proposes. I don't love the insistence on a one-size-fits all approach, but he seems to be one of the bigger names in EDS treatment, so it's a book I'll keep in my back pocked (not literally--it's huge) if it should become needed in the future.

[readingcactuss · Rating 3 out of 5]

It is a fairly good book. The writer explains EDS well but these exercises are not for everyone. If you have frequent dislocations or have problem standing you cannot do more than half of them (I couldn’t).

[milo · Rating 3 out of 5]

Ce livre est à la fois amateur, mal conçu, un peu cringe et pourtant extrêmement bienveillant et encourageant. L’auteur est kiné, pratique avec beaucoup de patients SED, et on sent vraiment qu’il veut aider. Le livre est très didactique et l’auteur explique simplement comment fonctionne le corps, comment se créent les douleurs, et comment y remédier d’une manière compréhensible pour le patient. J’ai pu comprendre comment je fonctionnais et ça a complètement changé ma perception de mes douleurs, pourquoi certains trucs type massage/manipulation peuvent me faire plus de mal que de bien. Tout fait sens maintenant (pour les concerné-es : les ligaments trop souples forcent les muscles à être en spasmes constant pour maintenir les os ensemble).
Il contient un programme complet de rééducation à étaler sur un an.
C’est à partir de là que je suis moins enthousiaste : le programme inclus une heure de sport quotidienne, encadrée. C’est beaucoup beaucoup, surtout si t’es censé-e avoir une vie avec d’autres activités (qui de toute façon vont te bousiller le corps). Puis faut trouver le kiné qui est prêt à lire un pavé de 500 pages (et qui est dispo pour un suivi quasi quotidien), sur une maladie génétique rare, en plus d’être peu connue et donc peu diagnostiquée. Donc qui lui resservira probablement pas dans sa pratique (j’aimerais bien vivre dans un monde où ce genre de soignants est courant mais lol). D’autant plus que le livre est pas très bien ficelé. Il est séparé avec une partie patient et une kiné. Éditer deux livres différents aurait été bien, reliés ensemble au pire. Sauf que là ça alterne d’un paragraphe à l’autre, c’est criblé de mauvais copié-collés, on se tape les images en double, c’est ultra brouillon. Les photos au passage sont cringes, et c’est vraiment cheap, mal cadré, pas droit, mention au modèle en jogging super large donc on voit pas bien les postures, les exercices à faire sont pas toujours clairs. Mais c’est plein de bonne volonté, juste j’ai l’impression de lire une procédure écrit pour les collègues ou un support accompagnant une formation.
Du coup, j’imagine que le livre est parfait si on est kiné en hôpital ou clinique dans un service spécialisé SED où suivre des patients quotidiennement pendant un an est envisagé, lu par une personne capable de combler les lacunes des photos concernant les exercices.
Mais après c’est une vraie mine d’informations, l’auteur fait un gros travail de vulgarisation, il rend accessible ses connaissances auxquels on a « pas le droit » d’avoir accès habituellement quand on est un patient. Perso je testerais pas les exercices seul mais peut-être que pour certaines personnes c’est ça ou rien, et c’est bien que ce genre de livres existe. Puis l’auteur est très encourageant, bienveillant, et les exercices ont plein de noms bêtes haha (genre chicken danse, superman, the matrix). Mais je recommande pas spécialement l’ouvrage cela dit.

[Tine Putzeys · Rating 3 out of 5]

I do not have a PT or 90 minutes a day to just train, nor will I ever be able to afford either of those. So I guess this book is not for me.

It also seems to assume that all people with EDS are weak. Just doing the exercises as prescribed wouldn't benefit me much, as I've been strength training since I was a teen. Spoiler alert > I'm still in pain and injured a lot. That said, my body does feel much better when I train and training up the muscles around a painful joint tends to improve the pain. So I do expect this would help someone starting from zero.

I'm not sure a book is the best format for this program, as it's very very repetitive and mixes the advice to the PT and the patient. But if it's all you have, I'd still recommend using it as a guideline, if you are at the beginning of your strength training journey.

[Jenna Montgomery · Rating 5 out of 5]

Was fairly simple to follow and good sized text. Directions mostly simple and was able to find the parts I needed to read and just glance over the parts for the PT. Will update my review after the PT reviews it and sees if it is doable.

Does list some EDS specific movement restrictions, some that last just until you get to the part of the protocol that works that skill, and some that are lifelong for EDSers, so would have preferred to have those in one place (like at front of book somewhere or even just referenced to an appendix list) instead of scattered throughout.

[Asher · Rating 4 out of 5]

I imagine it will take a long time for me to get through all of the exercises listed in the book but I feel confident reviewing it since I intend on getting a personal copy.

This is a useful book for anyone with hypermobility although the one size fits all approach for the regimen is likely not genuinely going to work for everyone. But the exercises are explained in a clear, detailed manner, as well as examples of how joints can be affected by hypermobility over time and what might help with correcting the compensation. There's a lot of good recommendations in this book.

[Sandra · Rating 5 out of 5]

Staring this protocol and seeing physical therapist Kevin Muldowney has been life changing for me. He identified my need to see a neurosurgeon for tethered cord syndrome and other common EDS issues. Using his upper body and lower body core strengthening protocol modified to my ability with autoimmune dysautonomia and myasthenia decreases pain and improves my quality of life. So much gratitude to Kevin for helping so many EDSers with his knowledge and skills.

[Amber Hume · Rating 4 out of 5]

I will be using this as a reference for a long time. I just wish there were some instructional videos to look up to help with understanding some of the methods described.

I use a lot of the PT in my daily life and it helps

[Lady Katie · Rating 3 out of 5]

I love the cover. The artwork is beautiful, and I like that it's hardcover.

Between pages 1 and 33, there is an entire page that is repeated word-for-word, which is disappointing.

This book needs a proofreader, as evidenced by the following sentence on page 33, "This maty cause compensatory ERS/FRS dysfunctions throughout the lumbar, thoracic and cervical spine."

There are also exercises that have label and description that don't match.

I'm somewhat disappointed in the navigational information, as the book directs you to a section, but it would be helpful if the navigational directions included page numbers. It's clunky having to go back to the table of contents for that information.

Although I have gripes about the book, the book has great value. It has value for people with EDS who need to advocate for themselves with a physical therapist. It's also good for physical therapists.

I cannot say how impressed I am that this protocol information is so accessible to therapists, because there aren't words to convey this. Usually, people who create protocols to treat specific conditions charge and arm and a leg to instruct other providers in the protocol, making it expensive to treat and receive treatment.

I'd like to see this book with an updated edition to include new information about EDS, and if changes are needed to the protocol.

[Emily · Rating 5 out of 5]

Reading challenge category - 2024 Hoffbensen: Related to the spine or medical condition (EDS)

This was the outline for the PT program I completed this year for EDS (thanks, Kelsey!). The modifications and adjustments for people with hypermobility were super helpful for an overall PT program to help begin movment and gaining strength without furthering injuring or bodily harm.

[Barb Todd · Rating 5 out of 5]

lots of great information

I bought this as a kindle, which it is poorly formatted for. However the information is priceless. I suggest you buy as a hardcover.

[Rocky Woolery · Rating 4 out of 5]

This was a very informative, though very repetitive book. I wish I would have realized that it was all a physical therapy book though. I was hoping for exercises that I could do on my own from the start. I also think that many of the exercise pages could have simply given the next strength without having to reiterate every last detail of the exercise. Also, the book was quite large for someone who is dealing with wrists that hurt most of the time and less redundancy wold have made the book much more accessible.

Over all it will be a good resource for making life more manageable.