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  • I am so sorry for what you are going through and you and Frank are in my prayers. I read your comment about supra nuclear palsy and your son's very understandable fear. Has your husband been tested for genetic defects in the last year or so? My family genetic defect c9 orf 72 was only identified in late 2011. It can also cause psp I have an aunt who has it. You might want to consider testing for it. It would give your son the option of testing when he is an adult. If he knows the gene and it is negative it would enable him not to worry. Gene testing is a very personal choice but if the family gene is unknown there is no way to find out. I am sorry to bring this up but it sounds like this will be an ongoing issue for your son
    Again you are in my prayers
    Nikki
    Punkie, I am happy you found us. You are NOT alone. Your faith has not deserted you. It's still there, just kinda pushed aside because of the stress and pain. You'll see.
    If you wanted to reply to Jane's visitor message, click on her name and post reply on her profile. This will ensure she is automatically notified of your message.
    Thank you for your heartfelt wishes and prayers (I hope he will be at peace - he has definately earned it). Missing him will be the hardest part to deal with in the end.
    Punkie, my heart breaks for you and your family. I am not sure if this message will perhaps help but felt I had to try.
    A young man in our area was in about the same condition as your dear Husband. He was in pain and decided to have his vent removed.
    I wanted you to know that he was given a sedative and then was disconnected from the machines. His death was calm and peaceful. I am quite sure his family was grateful for his peaceful passing but it must have been very hard for them.
    My hope is that you will find some measure of comfort knowing that his passing for him should be calm and peaceful.
    My prayers will be with you
    Jane
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