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Activity/fitness with dysautonomia


What can/cannot benefit you - from experience:
Balance exercises - All over conditioning (esp. lower back)Middle of the back to lower back (girdle) exercise - Dystonia - Heat - What to accept and what to fight

This is something I'm qualified to comment on, I am a registered dance therapist and have a working diagnosis of Shy-Drager.  I practice what I preach.  It does require you do them very regularly, if you want to prevent a decline, or at the very least slow the decline.

 

Balance exercises:

The preamble: when infants learn to walk they have and underdeveloped sense of balance, to compensate, instinctively the child uses its toes to firmly grip the ground.  As we get older we are put in restrictive footware which discourages involvement of the toes.  If you don't use it you lose it.

 
In practice: Have him/her work on moving his toes, then press his/her feet firmly into the ground, while sitting and standing supported.  By standing supported, s/he should use as little grip as possible, dancers are trained to use only one finger tip, you can start with the whole hand, but always have the goal to use less pressure.  There are a great number of small muscles in the foot, the more of them you use the better the bloodflow back to the heart (beats support hose and elastic stockings).  Always wear footware that allows the toes enough freedom to help by gripping.  Once the concept of gripping with your toes, stand with the feet about a foot apart (approx. in direct line with the crest of the hipbones).

 
The exercises: Push front of feet and toes into floor hold a few seconds and relax while exhaling (always breathe), repeat a few times (depends entirely on you energy level.  Repeat same exercise while pushing only the heel into the groun, then the outsides of the feet and then the insides only.  Once you've got this down add in dropped shoulders and pulling your spine up through the ceiling without tilting your head forward or backward (as though someone with pointie fingernails pushed up under your ears - ballet teachers always have long fingernails), do not lock your knees.  When you get good at this you will notice improvement in walking, and the exercise is so subtle, you can do it unnoticed while waiting for a bus or the light to change.

 
Toes are very overlooked in general physio-therapy.  Just wiggling them (aand fingers too) before getting up in the morning is very helpful.  Design your own toe exercises, learn to use the channel changer with your toes, pick up a pen, pass a squash ball from one foot to the other.  The point is not to learn to do tricks, but to use your toes, and you can do it sitting down.

 
Most importantly:  tensing any muscle increases its strenghth (you don't need weights), stretching sets bloodflow in motion (nourishes cells of all kinds), bending and flexing (touching your chin to your chest, reaching for your toes, sticking out your tongue) keeps you from becoming rigid.  Go muscle by muscle, awareness is the best exercise program.  Find someone competent to check on posture (through bad habits, wear and tear), if they cannot explain the mechanics for the exercise, they are not competent (as in: what is to be achieved by standing on one leg - when he falls over on two?)

 
I've stuck to this little regimen and have lost no muscle mass over the last four years, even made some small gains in my arms (Charles Atlas was really on to something), despite having to cut down on all my former activities, you can stay fit even if you live most of your life in a chair/recliner.

 

All over conditioning (esp. lower back) for patients and the caregivers who, lift them


Step 1

  • Try to think of this often: turn your palms up, it relaxes the shoulder and neck muscles - fabulous stress buster, anywhere anytime. Improves blood delivery to the brain (works standing, sitting, lying down.)
Step 2:
  • put one hand on top of the other (left right doesn't really matter) and press hands together (lower up - upper downward creating an even tension - now tug your shoulders down a bit and pull yourself up along the spine starting from just behind the ear (siting standing or lying down it all works)  do not tip the chin up or down (added benefit to try - stick your tongue out) EXHALE! and relax  (if you're really working it it should feel tense in your armpits and in the spine just below the shoulders)
  • It is best to do it slowly and deliberately and repeat as many times as you like but not to the point of exhaustion, it can give a bit of a head rush, so if you're not sitting at least lean on something with your calves (couch) or behind.(wall)  purpose of this step is to improve circulation and strengthen neck muscles, which help support blood vessels going to and from the brain, the exhale speeds along lymphatic drainage (with improvements in circulation skin colour and tautness can also improve)  - exhaling is critical because expelling stale air more completely allows for more new air to go in, most people breathe for the most part in a very shallow way - inhaling does not need to be emphasized because a vacuum always fills
        If something is not clear, ask me to clarify.  If something feels odd or painful tell me and I can adjust the routine or explain what you're doing incorrectly.
Step 3:
  • palms up in your lap - step 1  now step 2
  • slowly raise your arms keeping pressure between hands (one up one down) stop when your shoulders start to want to move up or back (everyone is slightly different)
  • stretch your arms as far forward from here without moving shoulders (that is the key, the shoulders shouldn't move)
  • keeping the distance between the hands and chest exactly (no fudgin or cheating) the same - pull elbows (pointy bits in the middle of your arm) OUTWARD as far as you can - at this point breathe out at the same time do the pulling out several times - each time EXHALING (like I said inhaling is automatic due to vacuum effect) - now you're really oxygenating
  • purpose to tighten the upper back, strengthen the back in the correct curvature specific to you, learn what that feels like, walk around (sit around, lie around) holding the posture, whenever you can, it will become habit eventually - you cannot hope to work on the lower spine until the upper spine is alligned (this is where a great many physios do it all wrong)
I worked these out for all levels of disability while I was told I likely had MS, in anticipation of ending up wheelchair bound, or worse, so I could maintain fitness all the same.  So far so good.

 
work again through steps 1-3 thoughfully, remembering to exhale at appropriate time.

 
Step 4 - requires you be stable, sitting, lying down or standing.
  • sitting - with legs comfortably apart (width of hipbones recommended)  feet completely on the floor, or alternately against a floor or a board
  • lying down, legs comfortably apart as above, feet fully resting against any object which if you push down will not give
  • standing, legs as above, weight of body over the middle of the foot - to steady, if needed
  • - a partner can hold you steady with open hands supporting the upper arm (no grabbing, just to supply the missing balance and steadiness) from underneath,
  • without a partner use a wall and a pillow behind your butt to allow enough space to be upright and not leaning or flattening the spine (spines are supposed to curve, each one slightly different),
  • or rest your calves (my favourite) against a couch which is to heavy to give way,
  • or sit astride the arm of an overstuffed couch (my second favourite on bad days).
  • get in and out of this position until you have found the best and steadiest position FOR YOU
THIS IS BIG, while pulling up just a little more under your ears (upward as pressing your head against a glass ceiling), push down in equal measure through your feet and into the floor (EXHALE)

Step 5

  • go through all the previous steps
  • now push additional pressure through the oursidees of the feeet, all the while pulling up and pushing down through the feet
  • repeat to 10 times
  • now repeat and press on the indside of the feet instead another 10 times, a promise better tone in your lower back butt and thighs.
Warning - surge of oxygen and blood if unexpected can really make you a bit woozy - that's ok, just be aware, though odd sensation, it is all good.  If it feels easy, you're doing it wrong (put more into it)

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Middle of the back to lower back (girdle) exercise

This one is simple
  • sit in a chair, feet up or not makes no difference
  • stretch your arms straight up so arms are beside your ears
  • lift your head from under your ears (as opposed to the chin which would have your head tilting back)
  • now as hard as you can exhale and push the middle of your back into the chair back without losing the stretch in your arms and neck
  • then collapse for 20 seconds
  • and do the whole thing again, slowly and deliberately, several times a day.
You can do this lying down in bed also, or in a wheelchair for that matter.

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Dystonia:

  • which is a matter of muscle spasms - is one of the most pressing reasons to exercise - during spasm you can also do damage to the tendons leaving you inflamed and even less able to move.  The way a dancer deals with muscle spasms (as you know dancers don't get sick days), is to superheat the area with a hot towel (or a flaxseed pillow which conforms to the area).
  • Once the area is warms gently move, if you are very immobile have someone gently support (in this case for the neck, your head), do NOT have the person move the neck for you, it has to come from you, push into the pain then stop and completely go slack.  There is movement even when you cannot detect it.  Done dutifully the dystonia should not progress and it may even improve (mine has).  The heat is key.
  • My theory is that our lowered body temperature discourages the muscles from moving full-range and causes the muscle to tense and lock (spasm), one the spasms are unevenly distributed, twisting happens.  It is work, hard work, but the alternative is to lose range of movement.


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Heat

I try whenever possible to heat the parts of the body which require the most movement (large muscles) their movement then sends a higher volume of blood to surrounding muscles.
  • Keeping shoulders very warm, keeps the neck a bit more flexible, hips and upper legs should also be overly warm.
  • In order to dissipate the heat building up (since I can't just control it), I rarely cover my feet, lower legs, arms and head.
  • I also keep a spray bottle with fortified (rosewater and glycerine and water) nearby.
  • Massage (done very gently, no kneading) also helps blood flow.
  • I keep some flaxseed pillows in the freezer (in case of heat crisis) and two minutes in the microwave heats a warm flaxseed pillow.
  • If my body is very cold I wear high waisted vinyl dance pants between two layers of sweat pants.
It is always a bad idea to stretch cold muscles.

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What to accept and what to fight: nonsense-ations
 

Before I even heard of MSA, PAF, PD+, and all the other oddball orphan diseases, I was quite aware (dancer's are very body aware, like athletes), that what I felt (pain stiffness, numbness), did not mean I was immobile, or hurt I referred to it as my nonsense-ations.  I've learned more and more to question what I feel and look to other means for verifications (mirrors, cues from others, mood rings).  At first when my arm would go numb and stiff I would avoid using it assuming it was also weak and incapable.

 
When the Dr. told me I had lost muscle (wasting 2") in my arm, I was devastated.  Went home and started re-training my arm working through the pain and numbness, and although I am clumsy my arms are once again symmetrical.  I cannot feel the ground with my feet either, but this does not mean I can't walk.  I cannot feel the temperature, but I can see the mottled skin, or feel as though my skin is too tight when I overheat.  I look grey when I am cold red when I'm hot.  I'm on manual override, but it is a lot of work to now consciously do what others can do without any attention or effort, I think this is why I am so tired.  The mantra remains, use it or lose it.

 
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index for this site plus a plethora of links
last update 03/2005

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