In this page you will find a complete list of the most common questions answered by the top EDS specialist in the country Dr. Marcia Perretto, PT, DPT, COMT. From what to expect on your first visit to how the Actify Method works, Dr. Perretto covers from complex conditions, such as Ehlers-Danlos Syndromes, Dysautonomia, MAst Cell Activation Disorder, Chronic Fatigue and Chronic Pain syndromes and their treatment protocols, the techniques and approaches used to help you recover your health, and how our unique whole body system approach will help you achieve your goals.
If you have any specific questions that are not covered in this section, do not panic! All you have to do is click on the bottom below and request a complementary phone consultation and we will make sure to answer all your questions.
What to expect from my visit?
Sessions may vary from 55 to 110 minutes depending on your individual needs. Your treatments are always one-on- one and we do not assign any part of your care to a technician or physical therapy student ever. Initially your sessions may require more manual therapy time, however there will be time allocated for Vagus nerve tonification exercises and your Foundations Home Program education. Better vagal tone has been associated with improved physical health, mental health, cardiovascular functioning, immunity, and digestive function, so you will also have a home program for Vagal toning.
During the manual therapy portion of your visit multiple techniques may be used including myofascial release, trigger points release, positional release techniques and visceral manipulation among other techniques inspired by lineages like John Barnes, Ida Rolf, and Thai massage. We will also be working on the improvement of the quality of your breath by incorporating ribcage and diaphragm releases as well as the extremities and the spine.
For the first few visits it is not uncommon that you may experience some mild soreness for the first few hours following the treatment, followed by improved symptoms. Feeling tired and sleepy has also been reported with some frequency, and in rare cases a temporary increase symptoms may be experienced, followed by an improvement of the baseline symptoms within the next 24 to 48 hours. You may start noticing changes in as 3 to 4 visits, but for the most chronic cases changes it may take 8 to 10 visits for changes to start to be more evident.
How many times do I need to come in for treatment?
Each person has different needs so the treatment frequency may vary. In general for all chronic illness cases I highly recommend at least one weekly visit for the first 8 weeks, so we can make the biggest impact on your musculoskeletal system and re-regulating the autonomic nervous system. After the first 8 weeks, we can review your progress, reassess the plan and make changes to the frequency of visits if it applies. The goal is to not only improve your symptoms and overall joint stability and strength, but also make sure that you are becoming more confident on your day-to-day life, minimizing your risk of injuries. The entire program can last anywhere from 3 to 6 months, with the average person falling at around 4 months of treatment before transitioning to a wellness based program.
What types of complex conditions do you treat?
ActifyPT is the first physical therapy and wellness clinic in the country exclusively dedicated to the treatment of a wide range of complex conditions, including:
Ehlers-Danlos Syndromes (EDS)
Hypermobility Spectrum Disorder
Dysautonomia - including Postural Orthostatic Tachycardia Syndrome - POTS, Orthostatic Hypotension, Vasovagal Syncope
Mast Cell Activation Disorder (MCAD)
Chronic fatigue syndrome
Post-exertional Malaise (PEM)
Tethered cord syndrome
Ernest and Eagle’s syndrome
Irritable Bowel Syndrome and other bowel disorders
Pelvic floor dysfunction
High risk pregnancies in patients with EDS
Complex chronic orthopedic conditions including complex hip and shoulder labral tears
If your diagnosis is not listed and you would like to know if we treat your condition click on the bottom below and schedule your complementary phone consultation to find out how we can help you.
I have EDS, how can you help me?
Collagen is everywhere in the body and for that reason EDS patients have symptoms that will affect not only the muscles and joints but also many other systems like the nervous and digestive systems for example. For that reason when treating a patient with EDS we have to take into consideration the whole person. At Actify we focus on addressing multiple body systems that are rarely considered during the standard physical therapy approach. It is essential that before we even start considering the strengthening aspect needed by patients with chronic conditions, that we first address the "fight and flight" (also known as sympathetic overdrive) that most of these disorders cause to the human body. A chronic disorder causes a state of chronic stress to the body, leading the system to a constant "fight and flight state", which overtime will cause tissue inflammation, and affects your digestion, sleep, leading to headaches, chronic pain and chronic fatigue. Over time, too much sympathetic dominance (think alarm, adrenaline) can lead to the inability to absorb nutrients from food, overweight, poor blood sugar regulation, anxiety, depression, learning issues, chronic exhaustion, insomnia, aches and pains. By addressing first the autonomic nervous system, more specifically activating your parasympathetic system, you will experience improved daily functions like your resting heart rate, and your general metabolism; it will regulate your breathing and it even helps you with your sleep. Not to mention the improvement you will experience in generalized joint and muscle pain and inflammation.
In parallel with the ANS regulation, you will be learning strategies to facilitate your day-to-day activities, exercises that will help you re-learn movement utilizing correct movement patterns and overwriting movement compensations that your body adopted in order to function while in dis-ease. Just because you are hypermobile it doesn't mean you don't have to work on the mobility of your body. As a matter of fact normalizing muscle tone to the areas in "spasm" or underactive, followed by our movement retraining protocol that includes stabilization and proprioception training, will be always part of your visits, and will be followed by specific exercises that you must practice at home (our Foundations signature program) to continue to advance on your progress.
Initially, you may not experience a significant progress, and even some muscle soreness or a little more fatigue may occur while we fine tune the program to your tolerance level, and your body starts the healing process. One of the most common reported improvements by our patients is the decrease in pain and the increased interval where the pain is at its worst, along with better movement and postural awareness. As the treatment plan progresses, you will experience improvements with activity tolerance and endurance, improved joint stability, and increased muscle strength. Because each person is different, it is important to keep in mind that your progress will also differ from another person due to the different co-existing diagnoses and level of deconditioning. Ultimately, by being complaint with the program you will experience progress and will be able to experience a significant improvement in your symptoms.
How does your program works?
The Actify programs are focused on a whole body approach model. That means we view one's health, acknowledging the physical, mental, emotional, social and spiritual factors in a person's ability to thrive, not merely survive. We support the journey to total health & wellness by focusing on what we refer to as the Four Pillars of Whole Body Health.
Hippocrates once said, “Let food be thy medicine and medicine be thy food”. While we intuitively understand the importance of food in causing and relieving health issues, most doctors are much more knowledgeable about prescribing drugs than foods and the ‘food as medicine’ philosophy has been largely overlooked. Because healing depends largely on what we put in our bodies as nutrition (and the digestion and absorption of the nutrients, which we will talk more later about), part of our approach is to make available to you the knowledge you will need to make the right decisions for your health. Along with the Autonomic nervous system treatment, adding the right nutrients to your body will significantly improve your levels of inflammation and energy as well as modulate your pain levels. Research has continuously been showing the implications of gut health on the treatment of chronic patients.
While all forms of exercise have physical and mental benefits, many today are also seeking a ‘mindful approach’ to movement which starts as a philosophy, is practiced as a discipline and often leads to a lifestyle that works to achieve harmony between mind, body and spirit. In addition to a whole body exercise approach, mindful movement will help you to achieve better proprioceptive awareness also known as kinesthetic sense – exercise that couples muscular activity with mental focus to improve our body’s ability to sense where we are in relationship to our surroundings.
The approach also incorporates breath-centering. The breath is the primary centering activity in mind-body exercise and essential for patients with chronic illness as it will facilitate the activation of the rest and digest phase. The program also focuses on a multilevel structure of anatomic alignment mini sequences, such as spine, trunk, and pelvis, focusing on proper physical form. Disciplining oneself to a particular movement pattern or spinal alignment holds true for many forms of mind-body exercise. Muscle activation focus is also part of the Actify Method. The development of awareness and attention of one's muscle activation and movement will retrain your brain to the correct pathways of muscle response during activity. Mindful movement is an important part of whole body health. The health benefits alone of regular, mindful movement are realized by improved sleep, reduced pain, gains in flexibility and strength, reduction in stress, increased energy, better cognition and mental function. These milestones are essential before we introduce you to the larger muscle group exercises or more advanced and complex movements. Once your body has mastered our "Foundations Program" you will be progressed to the next level always taking into consideration your individual needs.
The first level of your program can last from 4 to 12 weeks depending on your condition when you start the program. On this first level of the protocol we will focus on the autonomic nervous system regulation and the brain body connection by making you aware of your body's position, activation and use of the correct muscle patterns and postural alignment. This is done through the use of neuroscience based techniques and neuromuscular reeducation exercises and activities. In this phase we focus on the quality of movement over the quantity of movement, and the rest periods may be a little longer, while number of exercises performed will be less than on the next levels. This happens because we need to overwrite the unhealthy deeply engraved movement patterns and habits and replace them with the new ones that require at first a very conscient effort before they become subconscious and automatic. On this phase you will be required to perform a set of exercises two times daily, ideally in the morning and then later afternoon always being mindful of your energy levels to do not exacerbate any co-existing diagnoses (MCAD patients may require a less intense protocol to control the histamine release in the body due to physical activity). Contrary to the traditional physical therapy, we will be focusing on a sequence that truly addresses the root cause instead just the symptoms. In this level we will also teach you to adopt a regular routine of "quiet time" and for those who really enjoy we will add meditation practices to your day, all this to stimulate your mind-body connection.
The second level starts when you meet the required milestones for your level one graduation, and this may happen in between weeks 5 to 14. Level two essentially builds on the first level and progresses the exercises to more functional positions (POTS patients do have a variation on progress to address their special needs as their protocol may have a few extra steps), progressing strengthening and stabilization exercises to a higher level including an added cardiovascular component (don't worry it is tailored to your specific needs). At this level you will continue to develop your body-mind connection and dive deeper into mindful movement practices.
Once you have met the milestones required for graduation from level two, you will be transitioned into level three, this usually happens in between weeks 6 to 16. when you get to this level you will be functioning at a much higher level, but yet not quite ready for that Disney park or Super Target shopping spree. Here we will start tailoring the program exactly to your specific needs and goals, so the sky is the limit.
Keep in mind that when suffering from a chronic illness it is imperative that you understand that you will need to keep a healthy lifestyle by eating healthy, practicing mindfulness and exercising several times a week so you don't loose your progress. Even thought flare-up of symptoms may be way more spaced apart, you still may experience bad days, the major difference will be that the bad days will be much shorter and the symptoms may not even be as severe as before.
Because each person is different, not all individuals will experience the same exercises and activities, or all steps of the program during the treatment progression. Each phase has 3 to 4 different strategy levels, and the entire program may have 9 to 12 steps for different individuals. Keep in mind that results may vary as we are all unique and have very individualized needs and motivation factors.