The Survivors – When it comes to AD what does it mean?

I ran across an exchange of posts on an Alzheimer’s Disease (AD) bulletin board I follow that really caught my interest. It spoke about "surviving" Alzheimer's as an idea whose time has come. It didn't explain precisely what surviving was about. A few of the people on the mailing list, referred to as “Survivors” are people with whom I have been in contact. Each of them whom I know have had the curse for some years, slowly progressing, but they are still withstanding in the functional state of Early AD.

It is this fact that has prompted me in the advocacy of my writing to encourage the initiation of programs to prolong as many as possible in the early stage. This included medication, the Best Practices, viz. Eat Right, Exercise Daily, and Become Involved in Stimulating Intellectual, Social and Creative Activity.

There is so much than can be done, starting with early diagnosis, which is now being emphasized, that can be done to assist those in the early stage to stay in the early stage.

The discussion I speak of has had to the with the very recent Adoption of A National Plan by Congress for the treatment and care of AD. I have posted an article from the New York Times announcing and describing the bill. I have marked yellow certain key phrases that grabbed my attention as I read it. The article is entitled: With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan.  Click on it to read it on my Archive where I have posted it.

This of course is fantastic to see things as this finally start to happen. They are sorely needed. The needs of AD are far greater that in the singular effort to date to raise money to find a cure.

The response that I quote below captured the greater attention from me. It was from people I know or people with whom I am well acquainted. They are people like me going ever so slowly in this deterioration. Their existence suggests answers to questions I ask of myself. Why do I progress to slowly when others around me are progressing so fast through the debilitating stages of AD.

The comments to which I refer to are Morris Friedell's initial one concerning the passage of the National Health plan and the supporting statement made by one the sponsors Rep Markey who said in support of the bill:

….patients can’t lobby for themselves, and the person close to them cannot lobby because they’re home taking care of that person. There are no Alzheimer’s survivors        

I can certainly excuse Rep Markey in his choice of supporting words, none of us make the best lobbyists, were are best in the lobby being intelligent, articulate specimens of what AD is not, and able to stay this way, at least for some time. And, yes there are survivors, but not the type and kind couched by the descriptive word of no survivors. The fact is we who consider ourselves survivors are not really that, we are but surviving the ravages of the unrelenting progress of debilitation associated with this disease.

The real value of the comment line is the first time the concept of survivorship in the field of AD has been named and categorized. It has existed in general terms as I have applied it to myself and others but never qualified, never distinguished.

There are those of us who do survive longer than others, who can maintain a better quality of life longer than others. We all who I know work hard at the practices recommended for prolonging early stage.

We are not being helped by anything other than  our own doing. This is needed so badly and does provide the collateral benefit as stated in the article I have posted:

Delaying symptoms for just five years… “we will cut down tremendously” on the number of people who live long enough to develop Alzheimer’s.

I need to learn more about the survivors and will be talking more of that on this blog. I close this comment with the statement on the boards that caught my eye:         

I think we should all respond to Rep. Markey and other bill sponsors with our thanks and with our pointed correction about both our lobbying capabilities and our successes in surviving and living with AD.  

Morris, you are one of the first to talk about "surviving" Alzheimer's as an idea whose time has come.  Many of us are doing it -- and we're not stuck in waiting for the cure.  And more of us have been talking about the reality of surviving with Alzheimer's.  When Jim Cook, Chris Baum Van Ryzin, and I introduced the idea in our conference call with Robert Egge a couple of years ago --  when he was executive director of LEAD, before he joined the Alzheimer's Association -- he seemed to be intrigued with the idea of "Alzheimer's survivors" and positively inclined toward the ideas of "survival" and "survivor."

The challenges of those living with early Alzheimer's are little understood.  Moreover, the fact that millions of people are living for many, many years dealing with its early disabling early symptoms, before and after diagnosis, is yet little known or understood.  But it's the wave of the future, at least, until there are effective treatments and ultimately a cure.

I agree with Morris that it's terribly important that we, as a group, in our own words and with our own examples, correct the prevalent notions that people with Alzheimer's are helpless victims.