i dont know what to expect or not expect what to plan or not plan

My husband is 42 and in the same boat as you, only we know how it happened. 9 members of his family have been diagnosed and passed away all before the age of 50. I can only give the advice plan for the future but live one day at a time. MJD right now is the "mystery killer" in the disease world they've only as of 1973 found the gene that caused it. A cure is around the corner just not yet You can only get MJD if one of your parents had it and their parent had it and so forth, it doesn't "skip" but not everyone who has it shows the symptoms, though it seems to affect males more than females but knowing from experience in our family it hasn't been choosy.

I have 3 children myself and since my husband has it, they have the gene but only a 50% chance of showing the symptoms and having it progress, if they don't show the symptoms they might be lucky and not pass it on to their children. If you have children,have them tested for the gene, leaps and bounds have been made for medications that alleviate and in most cases can prolong the onset of many of the more serious symptoms. Our frustration right now is not alot of doctors even know this disease exists let alone how to treat it.

I'd be happy to answer more questions since it seems my husband's Aunt is the foremost authority of it it seems in the world right now, our family was one of the men the disease was named after, Antone Joseph. I'm learning myself along the way though watching my husband go through it.