Hi my name is Jessica im 24 years old im from West virginia. married with 2 children my husbands mother ,grandmother,an aunt all past away in there late 30s with this rare alz disese famial alz. we resently found out my husband has the psen1 gene also an now my kids have a 50 percent chane of haveing it im so worried an scared im looking for pople who may have more info on this disease or may have a simaler story im new to this site so thanks for any of your help

Jessica,
Welcome. You have come to the right place for support. I am sorry you have to be here, though.

I am also just starting this very frightening journey. I am 42 and my hubby is 41. He has been diagnosed with memory loss, most probably EOAD. We also have two children, aged 15 years and 7 years. My DH is adopted so we do not have any family history. I worry every day about whether he has the gene, and whether my kiddos do as well. We will probably get him tested, just haven't done it yet.

I really understand the worry you have. I have had to not think about the risk to my children, at the current time...otherwise I think I would fall apart. The really good news is that there is a lot of very promising treatments on the horizon. I am pinning my faith and hope on this...perhaps our children, even if they carry the gene, will be able to hold off this horrible disease.

Remember, not everyone who has the gene, develops the disease. You didn't mention if your husband has symptoms or how old he is. I highly recommend that you and your hubbie do all the research you can on ways to keep the brain/mind healthy. There is A LOT out there. Diet, exercise, supplements, etc. can be extremely helpful. Also, managing stress as much as possible. You are so very young to be facing this (I thought I was!) and I feel so sad that this reality has entered into your and your children's and husband's life.

But, my Dear, you can do a lot to help your family. Do not underestimate the power and love that the woman of the household is blessed to have. Read as much as you can. Make maintaining a peaceful atmosphere in your home a daily goal. And, above all, cultivate your ability to take care of you!

Looking back at my marriage, I believe that some of the damage of this disease started occurring in my hubby (and therefore to our marriage) probably 10-15 years ago. I wish I had had a heads up that some of our issues could be related to ALZ...I would have handled things much better and probably would not feel so depleted now. I definitely would have learned to take care of myself then. However, I am starting to now. I have started taking Pilates and being intentional about bringing my family and friends into my life on a mostly daily basis.

I hope this helps you, Jessica. I know there are much wiser people on this board than I, and they will be able to provide other gentle suggestions. But please, please, please, cultivate self-care now. It will be the greatest gift you can give to yourself, and to your children and your husband as you navigate these stormy waters.

Peace and Love,
Kirsty

Kirsty thank you for all your suggestions an support with this My husband is 24yrs old with no symptoms yet i hope the gene does not mutate but the way his family histry is with this disease im not sure. I will keep you an your family in prayers. i no it said that god doesnt give you nothing you cant handle. But i dont no how much more i can i almost lost my husband once before in 2004 his lungs was bleeding an he was vinalted for 6 months now he only has 55 percent lung capacity i even had him flown from a hospital in wv to a hospital in pittsburgh pa an they still cant tell me what caused it. then we found out about this gene. but please keep in touch thanks agian

Peace an love
JESSICA