Brian and the stress of life with LHON

Brian has had a couple of pretty stressful months at work and the longer he tries to hold on to this job, the more stressed he gets.  He hasn’t had one of his life stopping headaches in two months and he’s had no improvement in his vision in the last two months.  Monday he came home from work with a headache that put him in bed for 2 days and he was actually happy about it, he relates the intense, severe migraines to getting back more vision.  We don’t know if there is anything to this, but the more severe the headaches, the more vision he has recovered.  Most people laugh at this but it has been his experience.  The Doctors in Miami want him to have an MRI as these headaches aren’t normal to LHON.  When they tell you LHON is painless, who with LHON can agree with that?  I have seen my son go through the most painful eight years, which has caused me extreme pain and grief.  I still feel responsible, but I didn’t know.

On the other side of things, Brian has enjoyed his summer, went out more with friends and is trying really hard to live a normal life.  He is taking the bus to places he wants to go and that is a huge improvement.  The stress he has been feeling is from his job and trying to work in an environment that isn’t really set up for him.  One of his best friends from High School helped him get the job and is working on creating another job just for Brian that will be far better suited for him.

My daughter is having her first baby in a couple of weeks, it is a boy!  She tested for the LHON mutation before she got married and has the same mutation as Brian.   We are hopeful that with the research and knowledge that we now have that LHON won’t be a problem in the next generation.

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3 thoughts on “Brian and the stress of life with LHON

  1. Andy

    Brian I hope you feel better. I think of you often and the leadership you have displayed for our community. Your willingness to share your experiences had made my family’s experience with LHON an easier journey.

    Reply
  2. Joe Partain

    Brian’s website has been a real blessing to a close friend of mind and I’m sure many many ohers with LHON. And I have seen first hand how it affects their loved ones around them. Brian and you are in our prayers. Keep up the good fight! It is making a difference by giving hope to others.

    Reply
  3. Abell

    I understand how you feel as a mother blaming ourselves for something unknown to us. I still cry and pray every morning when I drop my son off to take to metro (our local transportation) so he can get to his job, thinking how brave he his getting on and off the train and getting to his work location. Praying that he is safe as though he is still a little boy, but he is a man. A man of courage. I pray for each and everyone of LHON
    Affected people and hope that there is a cure soon. GOD Bless Brian

    Reply

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