Positive AFOs experience

[Guest guest]

I have reported over the last 3 months the improvement of both my

activity level, energy and over all since of well being as a result

of Wwaring AFOs. In addition, I have had to face some of the

issues noted in recent postings. How do you tell a date why you

appear to stumble for no reason? While at the same time not

understanding why your feet, knees and legs don't seem to be acting

right. When is the right time to talk about CMT? I have been

dealing with the changes in my moderately effected CMT type 2, 46 yr

old body, in addition to being a single mother of 2 teenagers, in a

profession that demands sharp intellectual and appearance

standards. When do you talk about CMT?

During one of my first dates with a man this past Xmas. We went

for a walk and lunch on South Beach. We walked the 10 block area

and had lunch. After walking a few blocks I became less steady, a

few trips after 20 min " the joke was – I know you have not been

drinking " . And after 40 min – he was holding my arm and we were

headed back to car. My new friend was very polite but I did need to

give a quick summary of CMT and of course hope that I would not been

viewed as sick and weak or???? Great way to get to know someone

with CMT…….

That date has turned into my best friend …. He has been my sounding board for

AFOs or not….. He has witnessed my problems of walking while listening to the

short comings of AFOs-will they create more weakness? Is it okay to not move……?

Or walk – and the weight gain from lack of activity! Not to mention the 100

other health affects that snow ball from the life of CMT.

My weakness was not significant, so I am told, after all I could

still walk and I had decent on demand strength for time. But after

a short amount of time, I was very limited with my ability to walk

and the drain of energy was debilitating for days sometime.

This past week, I walked the major monuments of DC (6 hrs), walked

the beach and jetty of the Jersey Shore (2 hrs), Carefully rode the

subway and walked a bit in NYC, toured Gettysburg in and out of car

(3 hrs) and Next day finished the self guided tour of Gettysburg and

traveled to Deep Creek, MD-rafted 3/4 level rapids for an hour and

wrapped up the day with a few rides down the mountain roller coaster

at WISP Mountain. Gosh.... in Dec I could barely muster the energy

to travel to DC and be dropped off in front of a monument.

I feel great... I am not tried from the activity - I am a little

sore in my quads from my feet bracing my weight to stay in raft. I

also have some raft burns on my legs from bracing before I was

thrown out of the raft by aggressive rafting (for me anyway). I had

so much fun!!

The point- I never imaged I could return to such an activity level

and I attribute it to the AFOs. I will continue my prolo on my

back to further stabilize my SI joint. I hope to find a trainer or

PT who can help me increase my muscle strength safely and exercise

my TA muscles.

Bottom line…. Activity should be valued as gold or oil. My family members who

had CMT did not die from CMT – they die from heart attacks and diabetes and

overweight.

[Guest guest]

Hi , what kind of AFOs do you wear?

Thanks

Elaine