[PaulS]

Thanks Data for starting this thread and for all the thoughtful and helpful replies. I find the gradual loss of my ability to do things I love - strenuous hiking, running biking - and the uncertainty of what lies ahead in the future to be difficult and depressing. I wish I had the answer - However the voices on this board are almost always inspiring.
I try to combat the uncertainty with hope - maybe a drug will work, maybe a BMT will provide a cure, maybe new treatments will be developed. If hope doesn't work, there is acceptance - we are all going to die, its the way we live with what we have that is important - enjoy time with friends and family, travel if you can, engage in actives you love and find other thing to do. The do something positive every day is great advice. I used to plan a lot - business plans, vacation plans etc - now planning is difficult - will I need a transfusion next week? How will I feel in six months -etc - as a consequence, I find it important to seize those days when i feel relatively good - don't waste them - and appreciate the watch wait and worry time - try not to worry too much - there will be ample time for more serious worrying.
Good luck
p