What to do...

February 27, 2006

I appreciate this forum very much. For many of us with CMT there is

not a whole lot to do other than accept that this is our lot, our

thorn in the side. But sometimes acceptance means having the ability

to just vent frustrations. This and other support groups are perfect

for allowing us to do this from time to time.

I am 45 year old male from Alberta Canada. I was diagnosed with CMT

when I was 3 years old. I've had to deal with it all my life. My

symptoms are not as bad as some and worse than others. It mainly

affects my feet and lower legs , however lately I have also had

probelms with my sight and my hands. I have been wearing AFOs for

about 9 years now - a god send.

I used to twist and sprain my ankles at least once every day since I was about 8

years old. Finally when I was about 37 years old I got a good fitting pair of

AFOs and I have never twisted my ankles since.

However another problem has a risin. Because I no longer use the muscles in my

feet to walk and balance myself, they have pretty much completly atrophied. And

now I twist my knees. A couple days ago I went for a walk, (it is cold here in

Feb and there is lots of snow and ice) and I did something to my knee that I

have never experienced before.

When I came in from the cold I stood in a warm room for a couple of minutes.

Then when I went to move my knee locked solid. It felt like a tendon streched

and I experienced excrusiating pain from my knee to the base of my foot.

I was able to walk home, albeit very carefully, but my leg is

now in very bad shape. The numbness that I usually experience has

pretty much taken over my entire leg and even though I can still

move it and put weight on it, I can barely feel any sensation in it

at all. To be truthful, it does feel kind of dead. I don't know if

this will last or if it will go away in time and I will get feeling

back. There is no use trying to see my doctor because he has a one

year waiting list on his schedule. I do have an appointment to see

him next October.

I guess I'm wondering if anyone has had similar experiences and if

they can recommend some exercises that can help me strenghten my legs

with out causeing strain on my knees. Has anyone had experience with

a stationary bike? I have no money, I can't afford a gym membership

or a physio theripist. I'm just going to keep on keeping on and try

to get over the depression that this disease give me from time to

time.

Thanks for the chance to vent a bit... I feel a bit better even

now.

Jeff from Alberta

April 25, 2011

>

> Hi Bee and everyone,

>

> This is my first post ..I live in Australia..I have been reading and starting

all of Bee's work...thank you so much..an answered prayer!!

>

> I have made major changes and started the suppliments over the last few

months...it has been really difficult with the physical healing reactions but I

know it is the only answer for me and my children too.

>

> I am 39 years of age......health problems for over 25 years..anyway I won't go

into it all to keep it short as possible.

+++Hi . Welcome to posting on the group. : ) That's wonderful you've been

working hard to make the changes necessary to get healthy on my program, for you

and your children!

>

> 1. I have no thyroid (thyriod cancer at 19) and was wondering ...after being

on oroxine for 21 years...100mg per day...how will check my dose is correct ( i

usually get this checked every 3 months from a blood tests) after reading blood

tests are a waste of time..and is there any where you know of in Australia I

could obtain the animal/more natural alternative that you are on Bee?? (or could

I order it from the US???).

+++I do not have any thyroid either, since 1986-87 because of over-treatment by

doctors when I was curing my candida. My thryoid tried to normalize but since I

was taking meds and iodine it went from low to extremely high (Grave's disease).

I didn't know any better then, so my thyroid was killed with radioactive iodine.

+++I do not know of any other test for thyroid hormones than the blood test, and

since we must have a prescription by a doctor they are only allowed to go by

blood tests.

+++Since you've been on synthetic thyroid hormone for so many years you may need

to take a combination of natural dessicated thyroid and synthetic. I take a

combination available here in Canada, that may you may be able to order online

if Australia and Canada allow it - check out this link that explains a lot about

how to get it; you may be able to get it from the US too:

http://thyroid.about.com/b/2009/08/25/natural-desiccated-thyroid-prescriptions.h\

tm

+++I take 3 pills at 3 different times of the day which is important for keeping

blood levels up. My doses have been the same for about 12 years and I'm doing

good on them. I take:

-30 mg dessicated thyroid in the morning

-0.025 mg synthroid mid-day

-30 mg dessicated thyroid in the evening

+++I always have them in my purse too.

>

> 2. How does everyone cope with entertaining and birthday parties at your home

or going to social occassions that are a toxic nightmare!!!....my kids are on

the program too but I feel frustrated and stressed with 3 recent events and

sometimes I feel forced to cater for others even though I don't want junk around

my kids or to have to buy it for others....it is a battle during these times

with my children too as they look at me with the 'sad' face .....then people

notice they don't eat or they look unhappy with me.....and I have to

explain the 'diet'...which I don't like to do at times ...as it opens up

criticism etc..Do others drop their guard when parties are on and let their kids

have one or 2 things??....I have a big family and church family..sometimes

we have social events on 2-3 times a week!

+++That can be a very difficult challenge. I suggest you post another message

with a good Subject Line so it will get other member's attention. I don't

believe you need to explain anything to others. If asked simply claim allergies

or whatever to back other people off.

If you involved your children in their own health by education and having them

help with planning foods, cooking, and experimenting, they won't get such long

faces when they cannot have poisonous foods. They will be proud they eat

healthy and be less likely to feed bad when criticized.

Our wonderful Moderator, , writes a lot about how she involved her son at

3.5 years old so he understands and sits in day care calmly having his eggs or

whatever at snack time, while kids around him are having fruit juice, cookies,

etc. He tells , that food is bad for me, huh Mom?

>

> I do wish we could all just live in a Bee friendly world with none of this

food that is killing us and our kids...!! I don't want to become a hermit but I

wouldn't mind for a 2-3 years.lol!

+++I like your " Bee-friendly world. " Wouldn't that be wonderful!

The very best to you and your children,

Bee

April 25, 2011

Hi ,

I've been on the program for a almost three months and I have found the same

challenge as you, in my case, I'm divorced, so I had to get my ex on board with

the kids' diet, but I know that when they're with him, I have no way of knowing

exactly what they're eating.

I'm fully on the program, but I am transitioning them more slowly just so that

it's a more gentle process, I started not buying certain things little by little

and offering them other foods that I know are better choices, I try not to freak

out too much about what they're eating with their dad or at school, and I know

it will take time for them to adjust, it's easier with my daughter, she's 12 and

she loves meat, and eggs, whole milk and she's actually more on the diet than my

son, who is 5 and does not like meat that much, the only meat he'll eat is

chicken, so I try to make it a lot, and there are some awesome recipes on the

website that you can try with your kids.

I've been talking to them about food and nutrition, and I've explained to them

that I believe I was wrong for a long time (I was a vegetarian for about 6

years) and they are getting involved, but I don't want to force the issue to

where it becomes a battle. I'm making changes and it will take time for them to

get fully switched over to the diet, butI'm confident that eventually, they

will.

As far as explaining things to other people, I usually don't, but there are some

people that are a little nosy, so I'll say that I have food allergies because

people seem to understand that better and in my experience they back off

immediately and actually try to help, like at restaurants, that works really

well for me. Also if you are going to an event, like a church gathering, could

you take your own food? Maybe, if you feel like you want to explain, tell people

about your " food allergies " and offer to take something that is totally safe for

you and your kids to eat.

I realize that my diet weirds some people out, but I don't care, I feel the best

I've ever felt, I do get retracing and healing reactions, but I've realized that

this is a way of life, it's not just not eating certain things, it's part of a

whole lifestyle of not being a victim of the pharmaceutical companies and the

food industry.

Hang in there, you know you're doing what's right for you and your kids.

I hope this helps,

Caroline