I know this is a strange thing to say, but I am at an age now where I find a lot of my friends and relations are succumbing to terminal disease.

I love going to weddings and still do, but there comes a point where you realise you are going to more funerals than weddings.

I have already lost my eldest brother and sister to cancer before they reached the age of 60 - yes they had myotonia congenita - but its not that that killed them.

Both my younger brother and sister (who don't have MC) are over 60 - but both have had treatment for cancer - in fact my brother is very ill with it at the moment (pray for him - he's called Patrick)

But I have been extremely lucky - in since childhood - having a very healthy life.

The last time I was admitted to hospital was 47 years ago.

Maybe this is connected to the attitude I took - not to give in and not to take any drugs for it. Just fight it and hide it - so that you can lead a normal life and not be considered a cripple.

I will be 55 next month. I am the youngest of 5 - and I am determined I will outlive them.

I have seen my doctor on 3 occasions over the last 15 years.

The first time - was when I moved to the area - and he gave me check up - and he said - you are O.K. - but your blood pressure is rather high - but not high enough to prescribe drugs.

I said - O.K. I have just moved to the area - and I will buy a bike and get really fit.

I am fortunate in having the most wonderful wife and two wonderful kids - now 20 & 17 - perfectly healthy in every way

My wife was brought up initially on a Farm in Northern England - and has always insisted on EVERYTHING being Natural and Fresh.

When our kids came home from school (still now for my daughter)

They typically find a fresh carrot to eat rather than an want an aspartame coated candy

Our kids drink fresh fruit juice

They really aren't that interested in coca-cola - and I ensure they are not interested in DIET Coca-Cola

So - well my first target is 72 - My Dad worked all his life till 3 months before before he died of cancer.

My second target is 86 - My Mum was incredibly fit and healthy until just a couple of years before she died. I felt privelidged to see her almost everyday over the last 15 months of her life.

I felt especially priviledged to actually be holding her left hand at the moment she died - whilst she was holding her crucifix of Jesus Christ in her right hand.

I found it an incredibly uplifting moment. The entire World seemed to be at Peace the moment my Mum died.

My Mum made 86

I am determined to beat her

I will settle for 100

Myotonia Congenita makes me try much harder to stay fit and eat a good healthy diet

Charlie,

Thanks for your post. I know that having MC from a young age made me more of a survivor. I have two other rare genetic diseases, cancer (which is not growing - yeah!), neurological complications from West Nile Virus and a bunch of other issues. You kind of learn to tough it out and take a day or even a minute at a time.

When I was about 20 I saw a doctor who told me that I would feel much better if I cut the sugar out of my diet. Well that was a major food group for me at that time, but I did it and raised my family that way, too. It does really help to eat basic healthy foods rather than heavily processed stuff.

I feel like the grim reaper has been breathing down my neck for quite a few years but my faith keeps me strong and my family is amazing. I could have easily died in March but I know that I still have things to accomplish and helping others understand and live with MC is one of those things.

My mother with MC (86) is still strong and healthy except for diabetes now. Her father with MC also lived to an old age as did other family members with it. I almost feel sorry for people who are very healthy and pain-free most of their lives and then suddenly get an illness or condition that knocks them flat. We got an education in "suffering" at a young age, both the emotional and the physical aspects of dealing with MC.

Jan

Jan,

I'm really sorry that I couldn't read your website for around 2 years.

And then when I could - I read you got West Nile Virus which nearly killed you.

Don't worry - you have survived it and will get stronger and stronger and make a full recovery.

My wife Julie really wants to go to Central Africa

We have travelled to Asia several times - India, Maldives, Thailand where mosquitos are always a threat to be taken very seriously (we don't use drugs - just loads of zeet)

But Central Africa (where we would love to visit - because we both Really Love VERY old traditional African music and culture) but The Death Rates from Mosquito Bites is absolutely appalling

In many Central African Countries Over 50% of Children don't actually live to the age of 5 Years. It's not war, poverty, starvation or AIDS that kills most of them

But Malaria

The anti-malarial drugs simply do not work reliably any more and Africans could never afford them anyway (they can afford DDT which works - but aren't allowed to - by US environmentalists - protecting the mosquito rather than the Child?)

Malaria was endemic in the Southern US States - until virtually conquered by DDT around 1947

We would both really like to go to Africa - but I'm convinced if we did - its incredibly likely we would get malaria

I guess I'm a bit of a coward really

My wife really wanted to spend her 50th Birthday floating over the Equator in a Hot Air Balloon over Central Africa

We could afford it - and I worked out the travel details of how to do it.

Neither of use were afraid of the balloon flight ( we have both done airsports)

But the Malaria death in rate in Africa really scared me

And I Really Love My Wife

And I think all human beings across the world are of equal value and should have the same chance to live and achieve their destiny

Charlie, how fun that you've been able to travel so much with your wife. How did you do with required vaccinations? I don't tolerate tetanus at all but have never gotten all the other vaccines for going to high-risk areas.

West Nile Virus is really understated by the CDC and the media. I know so many people who were infected when I was (5 years ago) who are still disabled by it. Those first two years were a nightmare I don't ever want to revisit.

Have you had cases in the UK? After it reached New York and started moving west it got more virulent and dangerous because of the different type of mosquito that was the carrier. I don't blame you for being concerned about malaria but at least the treatment (quinine) also helps MC :-)

My husband would love to be a world traveler...he was able to see England for the first time a few years ago and can't wait to go back. Both of us descend from John of Gaunt and Katherine Swynford so we have loads of interesting history through the Plantagenets. He really wants to see Wales on his next trip. It looks like the MC in my family is through a Scottish line.

You should put up a website or photo album of all your travels for me to link to so visitors to the forum can see the possibilities even when you have MC!

Jan

OMG - Do you REALLY believe that we American environmentalists put a stop to DDT to protect mosquitoes? My head is reeling. Lois