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Marfan's Syndrome & Lifting?

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R ... <rsmith34@...> wrote:

<In December at the ophthalmologist I was told that the lenses in my eyes are

subluxing. A failed thoracic echogram (my chest wall is too thick) and a

failed trans-esophageal echogram (my gag-reflex is too strong) later, I had

an MRI which resulted in the discovery that I have an enlarged aorta

(everything I have is enlarged, duh!).

My doctor has enlisted a geneticist and a cardiologist to tell me that I must

stop lifting (nothing over 50 lbs) and replace it with swimming ( " because

it's the best overall exercise for the body " ).

Their concern being that I have Marfans Syndrome, a disorder of the

connective tissue that might cause my aorta to come apart at the seams under

stress from a blood pressure spike (like the one that occurs at the bottom

of a squat).

Swimming is no replacement for lifting. I am also insulin dependent diabetic

and nothing controls my sugar like lifting. I don't want to stop lifting.

However, I also don't want to have an aortic rupture in the squat rack.

Lifting is one of the things that I enjoy most about living. I can live

without it, yes. But not as well....>

------------------------

First of all, here is a website on Marfan's Syndrome:

WHAT IS MARFAN'S SYNDROME?

<http://www.marfan.org/>

Here are a few extracts from this site. Note the last one which is the one

focused upon in Mr 's letter.

<The Marfan syndrome is a heritable disorder of the connective tissue that

affects many organ systems, including the skeleton, lungs, eyes, heart and

blood vessels. The condition affects both menand women of any race or ethnic

group. It is estimated that at least 200,000 people in the United States have

the Marfan syndrome or a related connective tissue disorder.

The most serious problems associated with the Marfan syndrome involve the

cardiovascular system. The two leaflets of the mitral valve may billow

backwards when the heart contracts (mitral valve prolapse). This can lead to

leakage of the mitral valve or irregular heart rhythm.

In addition, the aorta, the main artery carrying blood away from the heart,

is generally wider and more fragile in patients with the Marfan syndrome.

This widening is progressive and can cause leakage of the aortic valve or

tears (dissection) in the aorta wall. When the aorta becomes greatly widened,

or tears, surgical repair is necessary.....

Every affected person should work closely with his/her physician(s) for their

customized treatment plan.

However, in general, treatment includes the following:

1. Annual echocardiogram to monitor the size and function of the heart and

aorta.

2. Initial eye examination with a slit-lamp to detect lens dislocation, with

periodic follow-up with an ophthalmologist.

3. Careful monitoring of the skeletal system, especially during childhood

and adolescence. Beta-blocker medications may be prescribed to lower blood

pressure and, consequently reduce stress on the aorta.

4. Antibiotics may be prescribed prior to dental or genito-urinary

procedures to reduce the risk of infection in people who experience mitral

valve prolapse or who have artificial heart valves.

5. People who have had aortic surgery must take blood thinning medication.

6. They also need to take antibiotics by injection before dental work, and

in other situations in which bacteria could enter the blood stream.

7. Lifestyle adaptations, such as the avoidance of strenuous exercise and

contact sports, are often necessary to reduce the risk of injury to the

aorta....... >

--------------------------

Here are some more wesbites on Marfan's Syndrome:

<http://go.drkoop.com/conditions/ency/article/000418.htm>

<http://www.looksmart.com/eus1/eus65300/eus65303/eus77824/eus541028/eus54857/eus\

54928/eus70180/eus964733/eus89791/eus329845/eus517876/eus274611/r?l & pin=010221x2\

d6f493453190a6e131 & >

<http://www.marfan.ca/links.htm>

-------------------------------------------

HISTORICAL POINT OF INTEREST

It has long been speculated that late President Lincoln, as suggested by

records of his physical characteristics, may have suffered from Marfan's

Syndrome. Here is a story on this topic:

<http://www.post-gazette.com/headlines/20000725lincoln8.asp>

Extracts from this news report are as follows:

<Lincoln's health draws scrutiny

Tuesday, July 25, 2000

By Woods, Post-Gazette National Bureau

Would a hereditary disease have killed Abraham Lincoln within a year even if

Wilkes Booth's bullet had missed?

Scientists are poised to move ahead with genetic tests on specimens of

Lincoln's blood, bones, and hair to answer the question, according to the

chairman of an expert panel that gave a preliminary go-ahead in the 1990s.

....... Lincoln's physical appearance led modern scientists to hypothesize

that the 16th president suffered from the genetic disorder Marfan syndrome.

At 6 feet, 4 inches tall, Lincoln was unusually tall with limbs out of

proportion to the rest of his body. He had other typical features of Marfan

syndrome, such as long, bony fingers; unusually large feet; a gaunt,

elongated face with large ears and nose; and a sunken chest.

The relatively rare condition, which occurs in about one out of every 10,000

people today, can lead to a fatal heart and blood vessel defects.

Marfan syndrome is perhaps best known for causing the deaths of Olympic

volleyball star Flo Hyman and University of land basketball player Chris

Patton. >

----------------------------------

Here is another story about the possibility of Marfan's in another famous

historical person, the great Pharaoh Akhenaten:

<http://exn.ca/egypt/egyptstories.cfm?Special=rulers>

<One of history's most enigmatic characters maybe one step closer to being

understood, thanks to the research of a fledgling Canadian Egyptologist.

Alwyn Burridge, an Egyptology doctoral student at the University of Toronto,

has been dogging the mystery of the strange appearance of Akhenaten, the

" rebel pharaoh " who was one of history's first recorded monotheists. Her

persuasive theory suggest she suffered from the genetic disease known as

Marfan’s syndrome, and not only offers insights into his odd physical

characteristics and short lifespan, but into the philosophical and cultural

revolution that he visited on the Egyptian society of his day.

The life story of Pharaoh Akhenaten, who reigned from 1356 to 1332 BC, has

been shrouded in mystery since the first evidence of him was uncovered little

more than 100 years ago. Influential writers, including Sigmund Freud,

equated him with legendary figures such as Moses and Oedipus, inspired by his

heretical role as the instigator of a wholly new Egyptian religion.

Akhenaten, the son of Amenhotep III and born Amenhotep IV, changed his name,

built a new capital, and founded a radically new cult. It worshipped the sun

as a single monotheistic deity called Aten, and displaced the then-dominant

pantheon of gods ruled by Amon, along with the power structure associated

with it.

It's little wonder, then, that after Akhenaten’s mysterious disappearance

(his tomb and remains have never been found) the cult of Amon was restored,

and every available trace of Akhenaten’s name, rule, monuments and images

were destroyed and defaced. His young son Tutankh-aten quickly changed his

name to Tutankh-amen. ........ >

-----------------------------------------

WHAT ABOUT EXERCISE?

As the medics have noted, any person with Marfan's Syndrome has to be

especially careful about adversely stressing the aorta of the heart and other

key blood vessels, something which is associated with large or sustained

increases in blood pressure and intrathoracic pressure. These increases

generally associated with the breath holding process against a closed

glottis, called the 'Valsalva Manoeuvre'.

In other words, if you do any form of exercise, you have to be careful not to

forcefully hold breath or use maximal muscle efforts which can increase blood

pressure and local ischaemia (deprivation of free blood flow).

While your doctors' advice about swimming is in the right direction, they

should have pointed out that sprint type swimming with epochs of large force

development with breath holding can also be unwise, as can sprinting,

jogging or taking part in any activities which can markedly increase the

stress on the circulatory system. I, too, consider swimming training to be

excellent for cardiac and general training, which is a major reason why I

built a large heated lap pool at our home.

If we examine the effect of weight training on the circulatory system, we

have to note that it is not simply the load that is used (like the 50lbs your

medics mentioned), but the way in which you use the weights. You could use

HIT or 'superslow' methods accompanied by breath holding during the latter

stages of the action and still produce unwise stress on your aorta. On the

other hand, you could handle much more than that load while breathing fairly

normally and not straining to any marked extent, so that the stress on the cir

culatory system might actually be less than under the slower, more endurance

type activities that I mentioned earlier.

What I did after my quadruple bypass (I lost 64 percent of my left

ventricular function, by the way) was to do exercises in very short, brief

modules of no more than 3 reps with a short rest between each rep and

adequate rest between each rep (even with unloaded activities like push ups

or partial squats). I never tried flat-out 1RMs, but aimed at increasing the

ease with which I could carry our whatever I was doing, no matter how light

that was relative to my original competitive standards. All the time, I

ensured that there was no strenuous breath holding or suffering under load.

If you would care to read about my own individual rehab program, it is

described on the following website:

<http://www.worldfitness.org/drmelsiff.html>

What I found exceptionally helpful was to do modified martial arts and Tai

Chi type movements whose effect on the muscles I could alter by incorporating

some deliberate bodybuilding type posing tension during various phases of the

movements. This I based upon Russian research which showed the strengthening

value of " loadless training " accompanied by powerful visualisation (Siff MC

" Supertraining " Ch 4 2000, p228). If you are not already doing that form of

training, you might indeed profit by trying Tai Chi, especially because of

its allied mental and health benefits.

Since Marfan's Syndrome is associated with a gene that affects the connective

tissue, then you also need to follow a suitable nutritional program which

suits your condition. Connective tissue and cardiovascular system integrity

depends on nutrients such as:

L-carnitine

Coenzyme CoQ10 (100-200mg a day)

Vitamin C (2-8 gm a day)

Vit B complex (50-100mg of most of the Bs)

MSM

Glucosamine

Vit E (mixed natural tocopherols)

Magnesium (as magnesium potassium aspartate)

If you have high blood pressure, elevated blood cholesterol and other heart

problems, then it is useful to add nutrients which control these factors as

well. Such substances include a small amount of aspirin (80mg a day), garlic

extract capsules, fish oils, hawthorne berry, gotu kola, ginkgo biloba,

niacin, ginger, creatine, betaine (trimethylglycine or TMG), folic acid, beta

carotene, lecithin and grape seed extract.

Do remember that any decision to implement the use of information like the

above should be done in collaboration with your doctors, who have the best

personal knowledge of your condition. That is what I did in designing my

weightlifting program after my cardiac rehab, but I must say that they were

all against my doing heavy lifting. Nevertheless, using principles like

those outlined above, I have managed to remain very strong and fit - but,

then again, our conditions are very different, even though we both have

hearts which have to be treated very carefully and sensibly.

You would also benefit by following some appropriate meditation and/or yogic

regime to control stress and allow you to create mental conditions to facil

itate healing of your tissues (see books like " The Relaxation Response " and

others by Herbert Benson on the value of meditation).

Do remember the bottom line of all of this - healthy as possible survival for

many years to come - not the ability to lift heavy weights or look like a

competitive bodybuilder. Design all your training, life activities and

eating with this in mind. Very best wishes.

Dr Mel C Siff

Denver, USA

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