Re: Orthotics in London -from Joana to Donna

[Guest guest]

Hi Donna

How are you? Nice to hear from you!

I don't know how to start hehe

First of all thank thank thank you so much!

I used to attend the NHNN for many years ( more than 15 years) and now has been

more than 4 years I don't go there anymore.

The reason I left the NHNN is because I used to go there and they use to

monitoring, studying me and all the students used to look at me like if I was an

ET...oh dear!

That was the way I felt for a number of years, I used to leave the hospital in

tears.

One day I decided never go back!

At that time I could far walk much better, Yes, very much better, but now I

don't take the underground, most of the times I am stay home or get a taxi to go

to somewhere near me.

I know that is not the answer for this but recently I have been felling so tired

of all this ...I just go to the gym and that is it!

I hope I will improve my mood and start go around and about again Donna.

For years I used to go the National and also at Northwick Pk Hosp and never been

to any Orthotics clinic ..maybe because it wasn't so bad my walking at that time

....

Donna, I really hope that they will help you with the insoles...

Soon I will go to Brazil ...hoping in Brazil I will find a nice pair of shoes

there!!!!!!!!!

and just today I found a orthotics clinic close to Kensington, I will go there

and have a good look too.

The problem is that I can not have any shoes heavy, has to be very flexible

always and the SIZE is a BIG PROBLEM...

I have a petite feet indeed...like kids almost hehehe

Here in UK the ladies starts with 36 and I am 33 understand?

When we talk about kids shoes, well, I found even harder to find a shoes in this

country.

I never bought shoes here ...NEVER! but now is changing everything, I think my

feet got larger and bigger because I am used to be with no shoes at home...

I am most of the time without a shoes, I love to be with my socks even at the

gym I am with my socks...bad habit in one way because

everytime I have to wear a shoes I get into a state of panic!

Another thing is ...last time when I was in Brazil I have done a Insole ...with

this carbon print etc, but never try this one yet because I could not find a

very good, proper shoes to try on.

Right now I was looking at this MBT SHOES...I have no idea if you know...

Maybe is heavy ...that is the problem and I did not see small sizes either...

I will phone them next week!

http://uk.mbt.com/Home/Benefits.aspx

Well, Donna thank you again and again ...

Have a lovely weekend and all the best wishes for all your help and support!

Kind Regards

Hugs

Joana

Ps: remembering ...many years ago seeing this shoes made in hospitals

they were kind of heavy ..hard leather type

:

The shoes I wear for so many years in my life was like a feather but used to

have a small heels and now I realized I can not stand on them...so pity because

I have more than 7 or 8 pairs of them.

I also being trying to change the heels on them ...but now I can not have any

insole with them because they are quite small.

I got then years ago!

Hugs

Jo

::

>

> Hi Joana,

>

> I go to the National Hospital for Neurology and Neurosurgery at Queen's

Square. Your GP can refer you to the specialist CMT clinic there. Ask to enter

Dr Reilly's clinic (although all the neuromuscular clinics are attached /

related, my own doctors are Prof Hanna and Parton).

>

> At the clinic when you are first accepted as a patient they normally do a day

admission / assessment for all aspects of your CMT. A baseline EMG, neural

biofeedback (like a nerve sound machine), physical therapy, occupational

therapy. They will then arrange an appointment for foot impressions for

orthotics as required.

>

> I am in the process of having my orthotics re-done at the National. It is a

time consuming process. But I have a lot of faith in their specialists. For

what I am doing, I am getting inserts but also having complete gait assessment

done and considering carbon AFOs (rather than the simple flexible Push Aequi

AFOs I use now).

>

> Personally although the idea of carbon AFOs slightly horrifies me I am 100%

willing and accepting of them as they will allow me to do what I want to do,

push my boundaries, and live the way I want. Learning to live with and accept

CMT is always a challenge, this is another of the mental challenges I have

accepted along the journey. Also anything that can help me to manage associated

foot pain is worth it in my opinion.

>

> Good luck.

>

> Donna from London

> www.myfitnessyear.com

>