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Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS Hardcover – July 17, 2015
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* 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.
* 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.