I am back online again

[Guest guest]

Hello everyone, it has been a really long time since I posted! Starting at

the end of August we began to finish our house building works, so since

then, when we were finally able to unpack and settle, it has been non stop -

combined with a job that requires travel, my home laptop screen dying, and

finally figuring out a work around solution to get back online - it has

taken me about 6 weeks!

So a long overdue welcome to Amy Hodge, Lesley mother of , Bethany with

the blog, Graham, , Sama, Jaimie, Tonya, , , Peggy, Marcia,

West, and Brittny in Illinois, , , , Anne, Meg,

Carl, Sharon and anyone else I might have missed while I was offline!

And a belated happy birthday to !

Thanks to Matt in Utah for sharing his tips and wonderful outlook and

positivity.

Hi Nilufer how is your Vitamin C going?

how are the doctor's at St ' doing with treating your breathing?

How was seeing Reilly - I have finally found my neuro appointment stuff

and plan to make a follow up with mine at UCL and then ask to see her for

Vit C too.

Reema - do I owe the group a list of homes? I love reading your thoughts

and catching up! And I do have a wonderful other half - I believe when you

meet the right people you bring out the best in each other - he is perfect for

me!

Ed from NH, I missed your wisdom!

Gretchen - how are you, I owe you another email, I hope your garden is ready for

winter.

I hope you are doing well and ok and coping with the loss of your husband.

from the Keys I hope you are well - depression is a horrible thing,

and sometimes the fatigue we feel combined with lethargy from depression

just makes life physically and mentally unbearable at some times. I have

been thinking of you.

Congratulations in Canada for your dream job.

Peggy I hope your grandson is understanding more about CMT - you are

wonderful and caring to reach out to us to help him.

Jo - I have not heard from you in a while - everything ok?

Other news from me is.

I am still trying to find a routine and balance in my work and life. I

guess it is like flossing teeth, you just need to get into the routine to

make time for exercise, work friends and family. The same goes for getting

to the gym. Aspirationally I would love to do a triathlon, but in reality I

need to just get and stay fit and healthy. My work travel disrupts the

course routine. I am hoping to start to get into work early then just take

a few hours out at lunch every other day to get into better habits. Finding

the balance in my time is the real issue.

I have been to a great stretch doctor, but I have to figure out how to make

sure to do the stretches every day as a matter of habit, not just for the 3

days after the appointment. The therapist also had a great machine the last

time I was there, working on proprioceptive exercises in particular around

my ankle. I am going to work with my builder and my furniture guy who uses

steel to design a machine like it. It was weird - like my brain could not

tell my ankle muscles to move. By the end of the session though they were

working again - I think they were the peroneal muscles. That was a true

positive in my life in early September.

I also decided to get a new diagnosis for my walking shoes. My orthotist

" finished " for now with me (they have to close files eventually and then you

can make new appointments) and the inserts are great. So I took them and

went to the shoe shop where they watch gait, and I bought New Balances, the

700 series. They are super light compared with my ASICs shoes and they also

fit my orthotics better (ASICs were totally chewed up by the new ortho inserts).

I also read the book " Melodies of my Life " by Denedra Banks about her life with

CMT. If anyone else wants to borrow it from me I am happy to post to them

and we can create a round robin for the book seeing where it will get to in the

world. Just drop me an email with your address and I will post it along.

Donna in London