Just received a diagnosis of early onset alzheimers for my 41 yr old son.....this is my third time dealing with this disease, but I feel more adequately prepared thanks to Joan and all the wonderful people on this site. I peek in occasionally, and still get my heart torn out reading about others having to deal with this. However, there is life after eoad, and lots of happiness still left to grab. Phranque
Phranque so sorry for you and your son. (((hugs))) for all of you. Are you the one that had genetic testing done on your wife? I know one of the guys here did. How is your son handling the diagnosis?
Phranque, I'm really sorry to hear about your son. That is extremely young. Good to hear from you though that there's lots of life to grab. It's beginning to look that way over here. Stay strong.
Phranque, it is difficult to find words. after reading about your son, it is truly shocking to think that you will have to walk this road again. All I can say is that you are in the hearts of so many here and you have brightened our days often, with your wit .May there be much joy for you and your son, before there is sadness again. Love, Cassie.
I have avoided genetic testing, because I would rather not know...my daughter is also sometimes showing some signs, but she rephuses the testing...So we wait patiently and hope it will skip at least one oph my kids....I do not have the courage to endure it two more times...I pheel guilty announcing this here because I am violating the rules of the site...phor spouses only.....heck, at this rate I may ophphicially have a liphtime membership....
Heartbreaking news to read about your son. I guess all of us with children fear it might strike them. I will keep you and your son in my prayers. I am so sorry you must deal with this again, but glad you have found some happiness in your life.
Phranque, so glad to know you've "grabbed life by the horns". I too am so sorry to learn of your son's EOAD diagnosis, it must be hard for all of you. I don't know how anyone goes through this journey more than once, but you are strong and a wonderful father so I wish the best for you all given the circumstances.
Phranque, the site is for spouses only (or widows/widowers), but that is what you are. So why would it be against the rules for you to post on this site? I think you're going to need the support now more than ever. I guess my question is this: How much responsibility and involvement will you have to take for your son, if any? Is he married? Does he live nearby, or will this be a long-distance thing?
He is not married,and has no children fortunately. He does live alone, but I suspect he will not be able to soon. He lives nearby, and his sister is also nearby. The responsibility will be mine, and shared by my daughter. He is awaiting ssi disability, and have a lawyer this time. Believe it or not, many lawyers are not aware that alzheimers is an automatic approval, and is also fast tracked as compasionnate care. Two reasons for this....This lawyer looked up alzheimers and could not find it as a reason for approval.....duh.,.,,look under early onset alzheimers.......(success!!!!)...she was not aware that it was even there.... I also told her that most ssi judges have never seen a case because usually the alz patients are already on medicare, or social security. Very few apply for early onset and most judges have never seen a case..... Saved the day!!!! Our lawyer is now actually working!!! Instead of waiting, and piling up paperwork. I will be screaming again on this site, and keep saying "not again, not again...... W He wants to enroll in every clinical trial available, so that will be our goal....and just in case, I am filling my pool with coconut oil.....(aproximately 123,000 coconuts), and three machetes.....
Phranque, EOAD is genetic in my DH's family. So my heart is aching for you. The gene in his family is a known eFAD mutation. If this is the case in your family, your son may want to look into the DIAN Observational Study. Www.dian-info.org this is an international study with the top research facilities participating. They are enrolling biological adult children of a parent with a mutated gene known to cause dominantly inherited AD.
PHranque, I am heartbroken to hear this. Over the years after we both joined this 'club'- you have made me laugh and made me cry and you were always there for all of us. You are one of the strongest men I know. Your strength,courage and humor will see you through this nightmare again. Sending love and hugs.
Like everyone, hard to know what to say. After the road we've traveled, I guess we are--to at least some small extent--better able to handle life with the needed zen-like attitude, but my heart still sunk for you.
I do, of course, worry about my kids. Our case was not familial, gene-based, AD...it was PCA--a neurological anomaly along the lines of Parkinsons or ALS...but I can't help thinking about genetic vulnerability.
I am in a great place in life--enjoying it, moving forward through it with tremendous appreciation--but I carry, and will always carry, a sometimes sad, sometimes fearful, awareness the fragility and impermanence of the whole gestalt.
"moving forward through it with tremendous appreciation--but I carry, and will always carry, a sometimes sad, sometimes fearful, awareness of the fragility and impermanence of the whole gestalt"
Thank you. Those are precisely the words that capture all of it's essence for me.
Frank,
As you can see we stand ready to support you. I urge you to continue to allow us to do that.
So sorry to hear about your son old friend,you were such an inspiration to us all the way you took care of your wife,my heart aches again,as my mom use to say "theres a special place in heaven for you",I don't come back as often either so this was really a shock to read about your son,my wife had four sons I wonder..........