My husband is going thru the process of diagnosis now. When I read Susan Schneider William's account, it is a precise description of what my husband is going through. My husband is 51, I am 51, and we have two children, ages 15 and 12.

The significant challenges in the short term are:

1. Getting our legal, financial, and health care directives in order.
2. Choosing someone who can take guardianship of the kids if something happens to me.
3. Finding a neurologist who is experienced with young-onset LBD and coming up with a care plan that works.
4. We both are working still, though he probably will not be able to much longer. My husband is a computer systems engineer. He is also an accomplished musician who has over 50 copyrighted songs. Right now, we have a goal that he can play his guitar for at least 2 hours per week. I am a remote sensing scientist with a masters in chemistry. It is my goal to maintain employment until 57 when I can retire. I have to provide for my kids, and health insurance from my employer is a blessing.
5. Finding a competent and compassionate family therapist. Raising teenagers is hard enough. We are going to need help.

Thank you for your post. It is very different when you are young because all the focus seems directed toward elderly LBD patients. Its not easy for anyone, young or old. Hopefully there is a cure someday.