RE: Update: Hip Flexor Research

[Guest guest]

Please keep us posted is any one in us doing research? I assume you meant

in England is where the research is being done>

Thanks

Kim kessing

From: [mailto: ] On Behalf Of

Donna DeWick

Sent: Tuesday, May 19, 2009 9:00 AM

Subject: Update: Hip Flexor Research

Hello everyone,

I just wanted to pass along an update with regard to the hip flexor research

project at the National Hospital for Neurology and Neurosurgery (Institute

of Neurology).

The study is specifically for genetically confirmed patients with CMT1A who

are seen through the clinics at the national. They are still seeking

volunteers. It is a 10 month commitment. If you are at all interested

please let me know and I can ask the researchers for more details.

The first session, which is to get baseline readings, lastest for about 2.5

hours for me. The work is thorough, taking measurements on muscles and the

force you demonstrate. It also was accompanied by a total sensory

evaluation. I always find this amazing as I just cannot feel certain things

in my feet, on the right side, which is always a little freaky. I also

learned that the pain nerves in your skin / feet are not the same as the

peripheral nerves impacting CMT, as I said I couldn't understand why I had

so little sensation but could feel every crack in the pavement / felt hot

sidewalks / no longer could stand walking barefoot. Who knew?

The commitment is 10 months, with a monitored exercise routine and home

visits by the researchers monthly to measure progress. I am excited to help

with specific research into improved hip flexor strength and how this

translates into gait and movement for CMT patients. Even though my case

seems mild, I know that any work they do is measured against my own personal

baseline, so am super curious to see how the results go.

Will keep you all posted.

Best wishes,

Donna from London

[Guest guest]

Sorry I haven't written in a while everyone.

I am participating in the hip flexor research at the Institute of Neurology

at the National Hospital for Neurology and Neurosurgery in London England.

I can't write about the research in too many details (about what I am doing)

because of the way it is structured - there are two groups of people, one

starts with no exercise, one starts with exercise, and the researchers do

not and cannot know which grouping the participants are in. So I can't

write about it!

The study involves having strength (basically a torque of your hip flexor)

measured to set weights. The participants will then be given weights for

home and reps to do, which are done four times a week, and monthly (for the

four month period) there is a visit to remeasure torque and re-set the

weights (as the participant gets stronger - or that is the theory that

happens after exercise - the weights are re-set).

It is basically a follow on from an earlier study done by the same team at

the ION where they showed that CMT folks use hip flexors to walk (50% more

than non CMT people). This is to see if hip flexor strengthening can

improve speed, gait and endurance in folks with CMT.

I will keep you all posted.

In the meantime I have also launched my blog where I am tracking my training

for triathlons + CMT + other life and balance issues. I hope you all will

click through and enjoy it! I am using it to raise funds for the CMTA STAR

research as well, so trying to do my best to educate and fundraise and

improve awareness of CMT. Every little bit of all of the above counts.

All the best from London!

Donna

www.myfitnessyear.com