My name is Kevin Muldowney, PT and I am the owner of Muldowney Physical Therapy in Cranston RI. I have been treating people with EDS for ten years now. I have written a book entitled, “Living Life to the Fullest with Ehlers-Danlos Syndrome.” This book was written for the person with EDS to bring to their physical therapist so they can both systematically go through the book together.
This book outlines an exercise protocol designed specifically for people with EDS to help stabilize the many subluxations associated with this genetic disorder. Although it does not instruct you on what to do if a joint (like your hip) subluxes, it does take you through exercises to prevent a joint (like your hip) from subluxing ever again. This book is written in a language you can understand and describes every subluxation in your body and what exercises are best to fix it. I also wrote sections of the book addressed to the physical therapist treating you which describe how they can help you while you are going through my exercise protocol. Anyone who has failed physical therapy in the past needs to buy my book and give physical therapy one more try. The results will be very different this time with my book. The reason for this is that my book teaches both you and your physical therapist how to best treat you during each physical therapy session.
Chapter One describes in detail what is going on with your body that causes subluxations. It also gives you a list of other healthcare professionals who need to be on your healthcare team. Most of my patients copy this chapter and give it to their primary care physician so they can better understand how to help you. Chapter Two begins explaining the exercises and taking you through the exercise protocol. I divided the body into three sections. Chapters Two, Three and Four will go over each section of the body and explain how each joint subluxes and what exercises are needed to stabilize each joint. I also wrote a section in each chapter for the physical therapist explaining what techniques to use to decrease your pain while you are exercising. In my clinic, my patients who have completed my exercise protocol typically report a pain level of zero to one (out of ten) in their joints with all of their usual activities. I wrote this book so that you and your physical therapist could achieve the same success as my clinic has had for years. My goal is for everyone who buys my book to have decreased pain.
I understand there is some confusion about the book and, recently returning from the EDNF Learning Conference, I now understand why.
First, I want to tell you how I developed the exercise protocol outlined in my book. Then, I will answer some common questions that I received about my book at the EDNF Learning Conference in Baltimore. I am a trained manual physical therapist who understands how to align all joints in the body using techniques such as: Muscle Energy, Craniosacral Therapy, Mulligan Techniques, Visceral Therapy and Myofascial Release. I always look at the body as a whole and I analyze how one body part affects another. When I began treating EDS ten years ago, I utilized manual therapy techniques to help re-align the joints of my patients with EDS to reduce their pain. They would feel great after each of my treatment sessions, but would eventually sublux again and their pain would return. This cycle would go on for the next five years for these patients. I truly believed the best I could do for my patients’ well-being was to give them a few days of decreased pain. My patients were appreciative for these few moments where their pain was managed for a short time. However, I felt I was never fixing the true underlying problem which was their muscle weakness, I was just treating their symptoms.
Finally, five years ago, I decided to break this cycle and throw out everything I was doing with my patients with EDS and work on helping them, not just for a few days, but for life. I began to look at what muscles I could strengthen to help the subluxations that I had been aligning for years with manual therapy techniques. Once I understood which muscles needed to be strengthened, I then had to decide how to divide the body into regions so, that while a person with EDS was exercising one region of the body, another region would not be adversely affected. Once I understood this, I needed to look at every physical therapy exercise and pick those exercises that would safely and effectively strengthen the appropriate muscles needed to stabilize the many subluxations associated with this genetic disorder. The reason why my protocol is so effective for the EDS population, is that I identified the muscles needed to be strengthened while also developing the proper sequence in which to safely strengthen them. Every exercise in this protocol was hand-picked by me to not only strengthen a specific muscle, but also to ensure the safety of other areas of the body, so not to adversely affect these other areas of the body while performing each exercise. Here is an easy example of this process. One of the first exercises you will do in my protocol is supine (lying on your back) clam with tubing, which is different from the sidelying clam exercise, which is considered to be a staple exercise in the physical therapy world. Both exercises strengthen the same muscles in the hip, but by placing a patient with EDS in sidelying rather than in supine (on their back) this will place an increased risk for the patient to sublux their shoulder or sublux their sacroiliac joint while performing the sidelying exercise. The reason why I chose the supine clam exercise over the sidelying clam exercise in my protocol was for the protection of the shoulder and sacroiliac joints. This thought process was repeated for every exercise in this protocol which separates my protocol from other exercise routines like Pilates, Feldenkrais and yoga. Such popular exercise routines are not designed for a person with EDS’s unique issues and may exacerbate symptoms. To my knowledge, my protocol is the only protocol designed specifically for the EDS population that takes into consideration all of your unique issues.
Here are some questions that came up at this year’s EDNF Learning Conference:
1. Who should buy this book?
Any person with EDS or joint hypermobility syndrome:
• Who wants to feel better.
• Who is currently in physical therapy and their physical therapist does not know what to do with them.
• Who has already failed with physical therapy or who has been hurt previously in physical therapy.
• Who cannot find a physical therapist in their area who understands EDS.
• Anyone who thinks they cannot exercise because of their pain.
• All who have EDS or joint hypermobility syndrome who want to take one last chance at living life to the fullest with less pain.
2. Why is this protocol better than any other exercise program like Feldenkrais, yoga or Pilates?
To my knowledge, this is the first exercise protocol developed specifically for the EDS population. Unlike other exercise programs, my protocol takes into consideration the many challenges faced by healthcare practitioners when treating a patient with EDS, while trying to safely and effectively strengthen someone with EDS. My exercise protocol begins slowly and systematically progresses you at your own pace. Each exercise was carefully chosen by me to strengthen a specific area of the body while protecting all other areas from injury when performing each exercise. It is my personal experience that no other treatment program can do this. It is, by far, the safest and most comprehensive exercise program for the EDS population that exists today.
3. Is this just an exercise book for a physical therapist?
Absolutely not. This book was written to educate you, your physical therapist and your primary care physician about EDS. This book educates you and how your body works with EDS. Also, it explains to you what you need to do to take back your life. EDS is bad, but it should not be debilitating. You need to take back your life and this book will show you how. You may not agree with all of the concepts in it, but just give it a chance and the book will help you.
This book educates your physical therapist by outlining your major problems and how they can help you. I tell them step by step what physical therapy techniques are most important for you to help you through the exercise protocol. All physical therapists want to help you, but they are afraid of hurting you. My book will take their fear away by educating them what to do with you so that they can concentrate on helping you.
My book will help your primary care physician by educating them on the many complex issues that are involved with EDS. I also listed for them the healthcare providers they can refer you to for specific problems. Finally, my book will legitimize your pain and tell other healthcare professionals it is real and not in your head and explain to them how to fix it.
4. Can I just do the exercises in the book without a physical therapist?
No. You should not do this exercise protocol alone. You need the guidance of a physical therapist. I chose common physical therapy exercises for my protocol so that most physical therapists would understand how to properly teach you to perform the exercises. Remember, this is your home exercise program. Therefore, you will need to bring the book with you to each physical therapy session so your physical therapist can make sure that you are using proper technique with the exercises. For every exercise, there is a section entitled, “For the Physical Therapist,” which outlines adjustments the therapist can make to protect your joints if the exercise hurts while being performed. I also listed alternate positions for some exercises to help individuals who have trouble getting into certain positions. The physical therapist can determine which adjustments are best for you as well as if the alternate positions are appropriate for you. Finally, physical therapists can use muscle energy techniques to align your bones. Such techniques will decrease your pain and place your muscles at an optimal length, which in turn, will allow you to strengthen quicker. The combination of a physical therapist performing manual therapy techniques to align your joints, while also performing the exercise protocol outlined in my book will allow you to achieve the best results possible. My book will outline what manual techniques work best for specific joints.
5. How do I use the book once I buy it?
Once you buy the book, read the first chapter. Read only the sections listed, “For the person with EDS.” It will explain what is going on with your body and how to find a good physical therapist in your area. Next, make a copy of Chapter One for your primary care physician. This will help them better understand what issues need to be addressed for you. Also, it gives them a list of healthcare providers who are experts in treating your specific issues. With the help of your primary care physician, you will begin to develop a team to help you treat problems that affect your whole body. Next, once you find a physical therapist, have them read the sections in Chapter One entitled “For the physical therapist.” Then, both of you should read Chapter Two. Once both of you have read Chapters One and Two, begin the protocol. If your physical therapist is having trouble treating your sacroiliac joint, have them watch my webinar, “Sacroiliac Dysfunction in the EDS Population.” This will guide them through the muscle energy needed to align your sacroiliac joint. If they have any questions, they can post a question on my Facebook page which will be up and running by October 1, 2015. Do not be afraid to write in the book. That is why there is so much space in it. This will keep you organized while going through this protocol. Putting book marks on the exercise levels that you are currently working on in the protocol can help you easily access your exercises each day.
6. How do I find a physical therapist in my area who knows how to treat EDS?
This is very difficult in most areas. Therefore, I did not write this book for a physical therapist who understands EDS. I wrote it for a manual physical therapist who is not familiar with EDS. My book will guide a physical therapist through the process of how to best help you achieve your goals. A manual physical therapist who is willing to follow the exercise protocol outlined in my book will help you just as well as a physical therapist who already understands EDS. In Section One of my book, I list what you should look for in a physical therapy practice. I also list what questions to ask the physical therapy facility before you book your first appointment. Choosing the right facility is just as important as finding the right physical therapist. Once you find the right manual physical therapist, they will align your joints using manual therapy techniques while you strengthen the muscles around the joints to stabilize them.
7. Do I have to begin with the sacroiliac joint protocol even though my neck hurts?
Yes! This is difficult to understand, but the sacroiliac joint is considered to be the keystone of the body. This means that if there is a problem with this joint, it will affect the joints above it (low back, mid back, neck, head, shoulders, wrists and hands) and below it (hips, knees, ankles and feet). You should never work on any body part before the sacroiliac joint is stabilized using my exercise protocol. If a physical therapist works on your mid back before your sacroiliac joint is properly aligned, soon after your mid back is fixed, it will be twisted again, causing your pain to return. The reason for this is, that if your sacroiliac joint is not aligned, when you stand up, you will have a scoliotic curve in your spine. This is referred to as an “apparent scoliosis” and is caused by your body’s compensation of the mal-aligned sacroiliac joint below. Until the sacroiliac joint is corrected, this apparent scoliosis will continue to exist. It is the apparent scoliosis which is the major cause of neck pain in most people with EDS. Until the apparent scoliosis is corrected, the neck will continue to have pain. Think of your body as a house. The sacrum and pelvis are the foundation of this house. Your mid back represents the walls of the house and your head and neck are the roof. Your neck can never be aligned as long as your foundation (sacrum and pelvis) is crooked. For those of you who have had treatment for neck and mid back pain and are not getting better, it is probably because the physical therapist did not fix your sacroiliac joint and low back first. Once they address your sacroiliac joint and low back per my protocol in Chapter Two of my book, then you can follow my Neck, Mid Back and Upper Extremity Protocol in Chapter Three to help your mid back pain. After this is completed, Chapter Four outlines exercises for the hips, knees, ankles and feet. By the end of the book, every joint will be stabilized due to these exercises.
8. Does everyone get better with this exercise protocol?
No. EDS affects many structures in the body and other issues may inhibit your ability to strengthen, such as: Tethered Cord, Chiari Malformation, Cranial Instability, Gastrointestinal problems and POTS. If you are unable to complete this protocol, it is not because your EDS is really bad, but rather some other issues are interfering with your ability to strengthen your muscles. You will need to seek out other specialists, who are listed in Chapter One of my book, to address these additional issues. Addressing these issues will allow you to strengthen more effectively and decrease your pain.
9. Will this protocol eliminate all of my pain?
No. As previously stated, EDS affects many structures in the body. This protocol will address the many subluxations of the body and use exercises to stabilize them. For most people with EDS, this is responsible for a majority of their pain. You can still have pain from other areas in the body, for example, the digestive tract. This protocol will not do anything to help pain from the digestive tract and you will need to see a gastroenterologist to address this issue. Chapter One has a list of doctors and specialists that someone with EDS should have on their medical team to help with the numerous issues that can arise with this complex disorder. I have my patients with EDS copy the first chapter of my book and give it to their primary care physician to help their primary care physician understand the many issues associated with this genetic disorder.
By October 1st, I plan on developing a Facebook page where people can ask specific questions about the book. This way, I will be able to help people through the process. Also, physical therapists using my book can ask me questions to better help their patients. I believe this book will help more people with EDS than I could have been able to help by myself. Everyone who cannot find a physical therapist to properly treat them or has a physical therapist who does not understand how to help them needs to buy this book today and begin the process of living a better life. Never let EDS interfere with your dreams.
Thank You,
Kevin Muldowney, MSPT