Re: how I found out about my CMT - to Patty, everyone

[Guest guest]

Hi Patty,

Thanks so much for the email. I miss my mother a lot sometimes - she never

seemed to let things get her too down. She was a huge fan of napping when she

was tired - something that I think I may take up! - and she was so stubborn

sometimes the little things that remind me of her - like when I dig my heals in

- make me laugh!

It is great that you are thinking of giving nursing a try. You can always start

part time, see how you feel, and then consider other things or leave if it is

too much. My mother also contemplated private care for the elderly too. And my

aunt took her skills and worked in a school clinic giving shots to young

children and also then worked in an AIDS clinic to help patients.

There are lots of options and paths for us - we just have to find the right one,

and make some choices about how we approach life - at least that is my

philosophy.

I learned I had CMT in April of 2005. I had wanted to do a marathon

(walking only - running feels like wading through molasses I just feel like I

can't lift my legs quick enough) and did a half marathon but my feet hurt badly

after, so I started to see an orthotist. My initial private orthotist did some

inserts but they were horrible and a waste of money so I went to my GP (in

England health is free but there is a whole system to go through and long waits

too) and one visit - first to the orthopaedic doctor to see why my foot hurt -

led to another visit to an orthotist, a neurologist, an EMG

technician for nerve velocity testing, more orthotics work, an MRI, and finally

after starting to see people in September 2003 I got a diagnosis in April 2005.

I did the marathon though in May 2004 as thankfully the first

cast orthotics were ready then, and after my diagnosis did a 60k walk in

September 2005.

Anyway, I know it is easy to feel down about CMT. Personally I know I have very

mild symptoms (they even say I am presently almost asymptomatic but that is only

because my walking is not so impacted) - mine hit me in strange ways, like

twitching muscles, shaky hands, really bad knees, wobbly on my feet especially

first thing in the morning. But I also think I am starting to feel fatigue

which is tough - but I am still not sure yet if this is job related (I travel

ALL THE TIME for my job - I am in London for a whole week this week for the

first time in months!).

I think for me CMT means having more insight into why I am the way I am. I have

always known I had limits. But now I know why some of these limits exist, and I

am better able to manage within them. I like to look at a total approach - so I

am learning about better nutrition, targeted exercise, adequate rest. I think

for me the whole condition is just a matter of learning how to understand what

works for me and what doesn't. Like I know that one glass of wine is fine for

me and quite enjoyable, whereas others would disagree.

Anyway, I am originally from Hawaii and have lived in Japan, the east coast of

the US and now London. I love this list as it connects us to people from all

over and it is a positive place to ask questions, seek advice, and to learn from

others.

Welcome again and feel free to email any time, on or off list, and I will do my

best to reply in a timely manner (although I travel a lot so my replies can be

sporadic).

Donna in London