Nisan and Ivetta,

 

I am very sorry to hear of your recent diagnosis.  It must have come as a big shock.

 

From my research, there are different levels of severity of this disease and I think that the progression of this disease has been very slow for me.  When researching on the internet, I have come across other people who cannot walk up stairs by the time they are in their twenties.  So for me, it does not limit my life at all at the moment.  I am able to do everything including sports, but I notice that my calf muscle is gradually shrinking.  I have been told by my doctor that it might be many years before I need assistance in walking, and that I might never need this.  The biggest indicator of how quickly the disease develops is the speed of change.  I am 40 years old, and although this was only diagnosed earlier this year, it is clear that I have had symptoms for at least 12 years.

 

There are two things that I am doing to combat this disease.  I try to make sure I exercise every day, by going for a walk up a hill behind my house, or a gentle run.  I keep a record of how long the walk takes so that I can measure if I am becomming weaker.  So far there is no difference.  As there is no cure to this disease, I also make sure that it does not affect my life mentally. I think that with any disease, you are better off by remaining strong mentally.  On the positive side, this disease does not decrease your life expectancy.  I am living my life as though this disease does not affect me, but appreciating things that I do now that might be more difficult in the future.  I will visit a specialist once per year to monitor any change.

 

Let me know if I can answer any other questions.  My heart goes out to you as I know this is difficult news. 

 

Stay strong.

 

Tristan

 

 

 

ivettanis <ivettani@...> wrote: