Ideas for Exercise – Working with the Kinks in your Body! DySTonia Symposium 2008

Email this to someoneShare on FacebookTweet about this on TwitterShare on Google+Share on LinkedIn
Click the icons to the left to share with a friend.


I recently had the privilege to present an exercise workshop at the September 2008 DySTonia Symposium in LasVegas. I thought I would summarize some of my thoughts for the rest of you that were unable to attend, and stimulate some athletic activity!

Firstly, what are the rules for exercising with ST? Be safe, be comfortable and pace your activities. You need to recognize your own individual needs and modify exercises so that they work for you. Everyone’s ST affects them differently so take this into account when considering whether an exercise is right for you. Think about other orthopedic, neurological or health issues that need to be considered. Finally, if you have never exercised before or just feel overwhelmed at the thought, do not be afraid to get help. If we look at the American College of Sports Medicine (ACSM) Guidelines for adults with chronic conditions, this is what they recommend:

Moderately intense aerobic exercise five times per week for thirty minutes
8-10 strength training exercises 2 sets of 10-15 times, three times per week
Balance exercises
Physical activity plan that takes into account specific things that need to be addressed.
I guess we all have some work to do!

There are two key pieces to successful exercising with ST. Firstly, it is essential for you to learn where your core muscles are and how to use them. Secondly, your posture must be optimal when you exercise so that you use the right muscles and train the right movement patterns. The core muscles comprise of your pelvic floor (yes guys have one too!), transversus abdominus (the deepest of your abdominal muscles) and multifidus (deep back muscles either side of the spine).

Lets practice…. . lie on the floor, sit or stand, inhale, feel your ribs expanding out to the side and into your back, exhale through a soft mouth and feel your breath go all the way down to your pelvic floor, contract the pelvic floor (this is a Kegel exercise for you ladies, for the gentlemen imagine trying to stop passing gas and walking into a cold lake at the same time!) and then flatten your belly button towards your spine. Keep the spine in neutral; none of these muscles are able to pull you into a pelvic tilt. You should be able to maintain this while you breathe in again, but not hold it indefinitely. Practice this frequently, initiate every activity with these muscles, so you can find them easily and improve their postural tone. This will give you a strong base to support your trunk and spine. Low back pain is common in the general population and ST’rs are especially vulnerable to this because of the forces that your neck positions place on the spine.

The better your alignment, the less stress you will place on your joints in your neck and back. I like to use an exercise called “sternal lift” which is a gentle way to align the spine. You can do this sitting or lying. Place a hand on the sternum or breast bone and just breathe normally, feel how the chest rises as you inhale and returns to base line as you exhale. Now, breathe in normally, as you exhale, lift the sternum up into your hand, this will bring your neck and shoulders into alignment, gently stretch the back of your upper thoracic spine and rest your shoulder blades down and back over the rib cage.

Figure 1:
Sternal Lift Exercise
Figure 2:
Stretching the cervical muscles lying down
Figure 3:
Stretching the cervical muscles in a bridge position
Sternal lift with Helen

Stretching was not on the ASCM list specifically, but it falls into the physical activity plan for ST. Why do you need to stretch? It is important to keep the neck muscles long enough to prevent tissue fibrosis or permanent shortening. Stretching allows you to move through your daily activities with greater ease. With a chronic problem like ST the whole body compensates and needs an opportunity to move differently. Stretching works best when you are warm, it helps to stretch regularly, and remember, it should not hurt! Some recent research has shown that prolonged static stretching actually inhibits muscle activity, which is not good if you are about to run a race, but might be very useful if you have an over active muscle!You know the basic neck stretches (see the DySTonia website), but you might not have thought about doing these lying down, bent over or in a bridge. Hold these stretches for at least thirty seconds to get a maximum benefit.

Helen stretching her neck lying down

Stretching the neck in a bridge position.

In our exercise work shop we also addressed stretching for the upper back, low back, hips, gluteals and calf muscles.

Strengthening is key for anyone with neck pain; gravity is a tough force to fight! Your head weighs 10% of your body weight and hanging on to that head is significant work. Balance and function are also tied to strength, allowing you to safely get out of a chair, getting your grocery bags out of the car and climb the stairs while you hold them. Thera-band™ kindly sponsored our workshop and provides a great tool to work with to improve your strength. With all exercises remember careful attention to form is crucial. Start all of your exercises with your best postural alignment and engage your core. It’s helpful to exercise with someone so they can give you feedback or even video yourself so you can see what you are doing. We addressed strengthening for the shoulders and arms, hips and legs and abdominals.

Staying strong through the shoulders will help to support your neck; it will improve your posture and help prevent shoulder tendonitis.

Figure 4:
Shoulder external rotation with Thera Band
Figure 5:
External rotation modifications
Showing shoulder external rotation exercises with Thera-band™, and a modification with improved neck support and less gravity force.

These exercises should start at the shoulder blades, and the neck muscles should be as quiet as possible; focus on smooth, controlled movement. Hold the band with both hands; keep your elbows tucked in to your sides, wrists should be in neutral, rotate out through the forearms and shoulders, and control the Thera-band™ as you return to the start position.

Figure 6:
Thera Band diagonals lying down
Figure 7:
Flies with Thera Band
Figure 8:
Squatting with Thera Band
Showing Diagonals and Flies performed lying down.

You can also perform these exercises sitting, standing or on a ball. Make sure the resistance is correct; if it is too hard you will find that you cannot keep your ears out of your shoulders – you may not be ready for resistance yet. If it is too easy, your strength benefit will be limited.

I like exercises that work a lot of muscles at the same time; that way you can maximize your result with less time.

Shows a squatting exercise with Thera-band™ which strengthens your legs, core, arms and neck – great value for the money!

Stand on your Thera-band™, holding the ends of the band with both hands; make sure there is some tension on the band. Carefully squat down (imagine you are going to sit in a chair), keeping your weight focused down into the heels, knees behind the toes and bend the elbows pulling on the band. The core muscles should be engaged and it is helpful to inhale to prepare, exhale as you squat and inhale on the way back to your start position.

So where do you start? If you have not exercised much before, start gently and work up to more repetitions. Listen to your body; it’s alright to have some muscle soreness from exercising, but not joint soreness or increased symptoms. In general begin with 8-10 repetitions and build up to 15. Progress to two sets of 10 or 15 repetitions and then add weight or increase your resistance. Be systematic, nudge your tolerances and avoid big jumps in numbers or resistance. Physiologically, it takes about 6 weeks for your muscles to change noticeably, however your brain gets much more efficient at figuring out how do the exercise and you will notice changes very quickly.

I hope this has given you some food for thought. I look forward to meeting more of you in Atlanta in 2009. I would love to hear about your exercise experiences and what works for you,my email address is:

My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews