Fredericks

Chapter 2D
Exercise and Friedreich's Ataxia (FA)

At first glance, exercise seems to be ridiculously impossible for many (if not most) FA'ers. One should not speak of chronic ailment and exercise in the same breath. I do so, because I believe the benefits of exercise make it absolutely essential for us to exercise¹ - and exercise often! However, this effort cannot be embraced to the detriment of adequate sleep. And sleep varies considerably from season to season^a, and according to Dr. Irving Dardik (www.dardikinstitute.org or www.lifewaves.com ) daily rest is critical. [He was the chief medical officer for the American Olympic team at Atlanta, USA.]

If an FA’er decides to exercise, we can make adaptations to the kinds of exercise that are promoted as healthy. We must also look at our own capacities and develop programs to suit both. The forms that programs of exercise take are very much determined by our blood-type. This seems like an unusually strange statement. However, this idea is developed by Peter D'Adamo in his 1996 book 'Eat Right 4 Your Type' (1996). More than any section of this book, this chapter strongly reflects a Type-O bias [which is my blood-type].

It is clear that we FA'ers are not going to play regular sports like basketball, hockey, soccer, football, baseball, or golf, and probably not sky-diving, nor bungiejumping. Probably not volleyball, nor tennis ... maybe not even 'bar hopping' is in the cards for us.

The view of an FA exercise program is even more difficult to accept because a lot of people (including us) measure status by what they can 'do'. This is sometimes called 'achievement'. FA'ers can pioneer a 'hard lesson' - re-learn how to become human before becoming 'achievers.'

The benefits of physical work and exercise are not only seen in the body builder or the athlete, but are the primary way that energy is made and used. Our bodies were built for movement. To stop physical activity is to invite death. A living being is one in motion! In proper brain development, motion is more necessary than the stimuli of sound or light².

Exercise can be as simple as pushing and pulling a wheelchair; or, causing a cycle of contracting and relaxing stomach muscles^b. Sitting and watching TV is not exercise!

Types of Exercise

A) Isotonic. This form of exercise builds strength and tone in the muscle groups exercised. It is probably the easiest and most convenient for FA'ers to do. This exercise consists of pushing or pulling against an object that is difficult or impossible to move. Examples are pushing one hand against another, or trying to lift the seat you're sitting on. You hold the pressure for about 5 seconds then release. Repeat often throughout the day. Grab different objects and pull - push in different directions. Pull a rope, squeeze a ball ... or try laughing 'til it hurts.

B) Body Building or Weight Training. The benefits of this type of exercise for FA'ers has mixed reviews. One fellow says that it helped to slow the progress of his FA. Another said that he now feels that it had actually hastened his degeneration.

Physical stress of this kind should be monitored closely by an assistant, and you should be careful not to do too much. Exercise will help you but it won't cure you. Nutrition is particularly important for the FA'er, especially if he or she has a tendency toward diabetes with a risk of hypoglycemia.

A very important consideration is that weight training is often a community sport and takes place in a public or private gymnasium. This can help overcome the sense of isolation that many FA'ers feel. Talking and joking with others doing some of the same exercises improves both morale and self-esteem.

NOTE: Generating a lot of sweat/body-heat depletes the body's store of zinc. In particular, weight training calls for adequate nutrition tailored to our unique needs.

C) Stretching and Balance. This form of exercise can help a number of coordination problems associated with FA. It is most helpful to be guided by knowledgeable teachers. This is especially true in Yoga or T'ai Chi.

Prof. Schmid highly recommended swimming for FA'ers. Exercise in the supporting medium of water permits a wider range of movements, involving more muscles, than those carried out on "dry land."

D) Aerobics.^c Without doubt this kind of exercise (for Type-O's)³ is the 'king' when it comes to health benefits for the exerciser⁴. However, jogging, dancing, crosscountry skiing, and the like, are simply not practical for most FA'ers.

We need, I think, a closer inspection of the mechanics of aerobics before we ‘give-up’. It is estimated that through the oxygenation of cells, ‘normal’ mitochondria will produce 46 units of energy for every unit of input. FA'ers have two problems here: 1) they haven't even got that one unit of energy input; 2) they don't have the muscle coordination demanded by this type of exercise.

One of the most efficient and effective motion for aerobic exercises is the updown- up motion - in exercises that involve the least jarring possible. [I’ll talk about the other, newer one, below.]

Many aerobic exercises embody this up-down-up motion: skipping; bouncing on a pogo-stick; or bed-bouncing - a motion that children love. So do several forms of dancing: polkas, square dancing, some traditional African dances. Jogging, walking briskly, and aerobic exercise classes incorporate much up-down-up motion. Some of these, as I have noted, may not be practical for most FA'ers.

There are also ways in which the up-down-up motion can be achieved even when the exerciser remains passive. Traditional Eskimos used a blanket-toss. And today disabled people are riding horses; the gait of the horse bounces the rider up and down, and in the process delivers an aerobic workout!⁵

The trampoline is often part of the equipment seen in modern gymnasiums. Today, a mini-trampoline, called a rebounder, is being sold for home use.

Instead of bouncing high as the trampoline, the exerciser bounces only a few inches only more often. The exercise is unique because the aerobic workout affects every cell within the body. Each cell is stressed by repeatedly altering the gravitational forces acting upon it, improving its respiration and health.

The benefits of this exercise are not limited to the bouncer, but to anyone (or part of anyone) on the rebounding surface. Above are several diagrams depicting the ways that a person with limited capabilities, can use this format (if they can solicit the help of someone to do the bouncing).

This system has many benefits, not the least of which is the reasonable price - about $300 Canadian for a ‘good’ unit. Its main drawbacks are:

a) the need for an "assistant bouncer" to do the bouncing; you may prefer several short (lasting about 2 minutes) bursts each day, and your "assistant bouncer" may not always be available. This might be a serious drawback because the exercise must be done repeatedly, over many years, in order to do any lasting good.

b) Present design of this device makes access by a wheelchair, onto the elevated rebounding surface, impossible - about 10" high. Transfers ‘on’ and ‘off’ may prove too discouraging.

Developing New Devices

If the present rebounder isn't a practical way of achieving adequate "rapidrhythmic vertical oscillation," then there is nothing stopping us from originating and developing our own ideas as to how to achieve the desired result. Why not design and build a machine that provides enough rhythmic up-down-up motion while remaining wheelchair accessible? [I DO NOT KNOW HOW HARD THIS WILL BE ON THE JOINTS OF A WHEELCHAIR!]

The theoretical model (below) is based somewhat on the belief that the fundamental rhythm of the heart is not solely for that muscle, but the strange doublepumping pulse actually delivers some energy to all living tissue aside from its bloodpumping abilities. Years ago, I saw a documentary on premature humans in their incubators. Each baby was given a Teddy (which they hugged tightly). It was explained that a recording of a strong maternal heartbeat had been sewn into each Teddy. The Japanese researchers found that the babes’ hearts would soon synchronize with the recording and would regularize (remove arrhythmia) and strengthen the infant hearts. I am hoping that this same phenomenon can happen in adults as well!

After thinking about this a bit, I thought: a) maybe, much of our heart’s habits are ‘learned’; b) this learning is taught to the developing infant by its mother and so, has influence even prior to the existence of the fetal-heart; c) at this level the thumpthump offers a cadence (a timing) to all living activity. The blood pumping delivers nutrients via the blood network and also, the heart’s sound to all cells, the timing is indispensable to co-ordinated activity.

So this rebounder exercise would (mainly) happen as just one part of the ‘day’ wherein the beat may be sped-up for aerobics purposes (see below).

[OPTION: an electric motor will provide power for the necessary-bounce session. A number of rhythmic up-down sessions can be employed by the user miming a horse trot; a heartbeat; rope-jumping; polka; belly-laughter; etc. An off-on switch or timer gives the user safety control.]

Description of Control Panel for ‘Bounce’-motor:

A) THE SPEED: Faster than usual may be essential for aerobics workouts, so increasing the rate (the number of beats per minute) may be controlled by the operator.

B) THE INTENSITY: The strength of a beat/workout may also be controlled. This would mean just how hard the machine pulled.

C) THE STYLE: The heartbeat pulse may be the ‘norm’ but other rhythmic frequencies can be employed, if the machine pulls at the prominent beat-signal of a recording.

As one example: Perhaps, there may be 4-6 actual buttons. Button #1 selects 'rest'; #2 selects 1" height (like the 'priming' action of skipping a rope); #3 selects another rest; #4, a 2" height pull. A selection of 'Repeat after #4' will repeat this sequence. [Variation of sequence selection will be according to user's desires.]

Fine control is provided by centring-ropes that are pulled or released by a user.

Safety Features

It may also be important to have additional control safety features, e.g., A) a maximum time of 20 minutes for one session (after which the motor automatically stops); B) an external on-off switch for an attendant.

Because such motion as this machine produces has not been tested on disabled people, wearing a neck support at the beginning may be advisable if such is normally used.

NB Anyone who decides to have a working model built does so at his/her own risk and expense.

Important Factors in Therapy:

It is difficult to underestimate the role of the cerebellum - that structure in the brain responsible for the coordination of muscular movement - in the expression of FA-type diseases as well as several other disorders. The human cerebellum normally achieves maturity after birth, and its healthy development needs both the right nutrients and the proper stimuli. Among the latter, as infants we need cuddling, bouncing, rocking and attention.

In terms of this book, in PHASE 3 - the period following birth - we need: 1) human breast milk containing zinc, taurine, essential fatty acids (both families), etc.; and, 2) rapid up-down-up motion, for proper cerebellum development. Such development, if consciously undertaken as adults as a therapeutic or remedial measure, requires much the same ingredients as in the earlier period. Dietary supplements (NOTE the discussion on SAMe in the chapter on Drugs and Supplements), together with controlled 'vertical oscillation' (as produced, for example, in the machine proposed above), may well effect the desired changes in the cerebellum. In addition, it may be even more effective if sound and light were coordinated with the motion of the machine or even have the heartbeat recording of a pregnant woman.

[This rhythmic sound is ‘THE TEACHER’ for an infant’s cadence and so, is precardiac. It is ‘deeper’ at a cellular level and not only on an organ-level. Perhaps we who are FA’ers (who have very little cadence) or who are ‘older’ can still benefit from such stimulus. I believe this basic-pulse that provides cadence is the basis for all coordinating of muscle movement. The pump-pump of the heart is only one; we also need coordinated breathing, speaking, swallowing; we also need to stand, crawl, walk, and run. These are but two of many coordinated muscle actions.]

[To foster the active participation of the person receiving a 'therapeutic bounce,' it would be best to incorporate simple physical movements while the device is in operation. Gentle exercise can exert a positive influence on many conditions. For example, a simple bar might help to hold a person in an erect stance.]

UNIQUENESS OF THIS EXERCISE FOR DISABLED FOLKS

The rebound motion - while seemingly similar to other forms of exercises - has a few features that make it an ideal format for disabled people.

First in importance is the cellular level of this exercise. Most exercise forms operate on the aggregate-tissue level and therefore uses nerve control of muscle groups in order to function. If there is a problem with the nerves, then there will be no activation of the muscles-of-the-exercise. Shifting to a cellular level permits exercise in every kind of cell ... whether nerve controlled or not ... any person then can benefit from this movement. For example, a severely retarded person and a person with quadrapelegia and someone with cerebral palsy can bounce together and each have very different benefits from the very same bounce.

Second: there are a wide range of disabling conditions - both brain-related or strictly physical that prevents a person from having a ‘controlled’ bounce. Employing a mechanism would open this format to them.

MORE RECENT, PASSIVE-AEROBICS

I loves this machine, because it is so ‘passive’ all that is required is that I lie down on my back. Apparently, the aerobic workout comes from the side-to-side motion of the feet. [The motion mimes that of a fish in water.] This feet-movement is done by the machine, called: The Chi Machine. Much more about it is read at: http://healthy-vend.tripod.com/ChiMachine.html

What I’ve found is that it is very good at assisting in wasting and slowly firms leg, lower back, and stomach muscles.

a. The book ‘Lights Out’ by T.S. Wiley while speaking mostly about artificial forms of light. It is about this energy input and its tendency to interfere with natural sleep patterns often dependant upon hormone release.

b. The American NATIONAL ATAXIA FOUNDATION promotes a series of exercises specifically for us called: Frenkel's Exercises for Ataxic Conditions. Tel 1/800/876-9646.

c. There are two authors I know that is under-impressed with regular aerobics. One is T.S, Wiley in Lights Out (Feb 2000) pp. 11-16, 96, 163. The other is V. Frolov in ‘ENDOGENOUS RESPIRATION - medicine of the third millennium’. He insists that most common forms of exercise is actually dangerous and will severely shorten/restrict both life and longevity.

Endnotes:

1. Mind Food & Smart Pills, by Ross Pelton (1989) p.246-247

2. The Brain - The Last Frontier, by Richard Restak, M.D. (1979) p.144

3. Eat Right 4 Your Type, Peter D'Adamo (1996) pp.91-94

4. Pelton p.250

5. Rebounding Aerobics, by Morton Walker & Frank Angelo (1981) p.174

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