unsteadiness, vision, shoes - CMT variations

[Guest guest]

Hi Roman,

Perhaps the unsteadiness is related to your balance, the vision is

related to your proprioception (which affects balance) and as for

shoes, you might perhaps consider visiting an orthotist or

pedorthist, have both legs measured, have your spine measured, you

may have one hip higher than the other (I do and about 5% of the

entire population, not just CMT persons have this).

Then, perhaps the orthotist can make you some in-shoe orthotics to

wear after taking molds of your feet, he will know exactly what your

gait is like, and these orthotics should be different for each foot.

If they are made right, they will help with balance and

proprioception, as mine do. OR your orthotist MAY recommend Ankle

Foot Orthotics, but first inquire about those made to go inside your

shoes. AFOs help people with 'foot drop' and I don't know if you've

got this. There is also a British invention - the SAFO - they are

silicone AFOs - sort of - they slip on over your ankle, to give

support there, but do not appear to give the foot underneath any

extra support for toes, metatarsal pads or heels.

As for shoes, I don't know what brands you are buying there, but

besides New Balance, I also recommend Rockports, Mephisto, even Ecco

shoes. Matter of fact, your orthotist might work with a shoe maker to

put orthotics directly in a pair of shoes - they would not be able to

be transferred to other shoes though.

Walking in the wrong shoes with no support for feet can cause damage

to the entire neuromuscular system.

As for variations, I think once you get the " mechanics " of your body

worked out, and get stable shoes that work well with necessary

adaptions, you may find there aren't so many variations. Although CMT

is a very unique, individualized experience depending on one's own

particular genetic code.

~ Gretchen

[Guest guest]

Hi Gretchen,

Thank you for this broad panorama of the question. I have visited

plenty of orthotists and pedorthists, each having his own idea about my problems

and each time I walked out with new shoes and/or new orthotics and after a week

or a month the trouble started back again.

Nobody measured my spine or maybe I'm wrong as some analysed my gait with

computer. They all seem not to know much about CMT which means I have not found

a right man yet. The other side of my unsteadyness is a sudden onset of weakness

- mostly at thighs level - which seems to be mostly a nervous, not a muscular

problem. I don't know how this one can be helped.

I've tried Mephisto's that increased my limping, Salomon's that helped for a

while and many others, maybe I'll try New Balance shoes … All this costs

plenty of money and as I'am about to loose my job, it all becomes complicated. A

bag of gold sent from Above - and I'll come to US and find proper equipment!

And thank you for your second letter concerning eyes.

Roman