Monday, May 11, 2009

HBO Documentary

Yesterday, today and tomorrow, HBO is airing some very insightful, interesting and true to the core stories about families afflicted with Alzheimer's Disease. Strangely enough, this special was something we could have been a part of. About a year ago, we were notified that an "Alzheimer project" was underway and filming in NYC. We were asked to consider attending. Time being as precious as it always is, and our situation being as difficult as it is, I wasn't able to coordinate getting there with the kids. I am pleased that HBO has taken on this project, but I can honestly say that I am sad that the Early Onset aspect of the disease has yet to be addressed. I get so caught up with the commonalities of this disease, I tend to downplay just how difficult it is dealing with this disease at such a young age.

Last night, as we watched the first part of this series, they introduced us to a few patients and their families - they were all older. The youngest patient was 63. Now I KNOW there are younger families dealing with AD, I'm friendly with some of them - where were they? As difficult as it is the watch, the story MUST be told. If the general public got to see the TRUE reality of the disease, then more funding and the support for Alzheimer's Disease research may increase. No one wants to see sadness, fear and isolation - but the time has come. I need to remember that the war we fight everyday against Alzheimer's is a long and difficult one. My husband and my family are NOT like all the others. Because Early Onset Alzheimer's Disease is in the news more and more, I sometimes forget my original make people aware that this disease is not just for the old. No matter how much is presented on the disease, more needs to be presented regarding the Early Onset aspect of Alzheimer's. The disease itself is named after a doctor who first came across the illness in a 55 year old woman. Alzheimer's originated as a YOUNG ONSET illness. Somewhere along the line, it became synonimous with "old age" and "senility". While the affects of the disease are similar, no matter what the age, dealing with a husband who's forgetting himself and his family at the age of 36 is FAR MORE devastating then dealing with that same loss at age 85. I never felt comfortable saying that, because I felt it would somehow appear to trivialize what the "mature" patient goes through. But there is no denying the fact that my children have been consistently losing their father, one minute, one day, one week, one month, one year at a time, since they were 7 and 9 years old. THAT is unique and THAT is the reason why I speak out. This has been the longest, most difficult journey I believe I will ever encounter. Our life had not even started, when it came to an end. My husband is in the final stages of Alzheimer's Disease and he's only 44 (diagnosed at 36). Let us not forget, that this is definitely NOT just an old person's disease.


Carl in NC said...

I agree! Everything you said is so true.



trish said...


Keep watching.... Bob and I saw the screening of the science portion a week ago. Dr. Klunk (co-inventor of the Pittsburgh compound) was shown with a family he followed for years that had eFad. Five out of the six children had eFad and they were in their mid-late fourties. What suprised me was the sibbling without the genetic mutation was shown helping the mother and the afflicted siblings. This is quite unusual since most unafflicted siblings tend to stay in denial and run in the other direction.

Take care & stay strong!