This is the context of the memo I prepared following the appearance of Diane and I in Washington DC in June 2009. I have amended recently to incorporate the findings and discussion of the NIH aberration they call a conclusion
We need some action on the Alzheimer's front, more that what has been occurring.
Early Stage Alzheimer's Afflicted (ESAA) need a different kind of care than the support and the care community has been delivering. It is in the Community's Interests to keep ESAA in Early Stage. While in the Early Stage we do not require the degree of care and cost of care we do when the go into mid and late stage. It also enhances the quality of life for those of us with AD if we can stay in early stage longer.
So, how do we get this done?
Care and Support Groups and Agencies serving the needs of Alzheimer’s Disease (AD) should direct people with the knowledge and know how to design and establish programs needed for those of us in Early Stage. These programs could fill the void of those that do not now exist.
I suggest the following. This is in no way limited to or suggestive of the best:
1. First Stop Programs: A Place With People such as Early Stagers that patients just diagnosed can come to and learn about AD and how they and families can deal with it. This could be supplemented to Alz.Assoc with a resource list of services. The existence of this should be circulated throughout the Health Care Community.
2. Support Groups: A Place With People where Early Stagers agree to attend with regularity and be open to the public designed for Early Stage offering support, camaraderie and regularity.
3. Volunteer Coordination: We need to put together a central source to find volunteer opportunities for Early Stage AD where they can be directed to do volunteer work in the range of their respective ability.
4. Structured Wage Earning Workgroups: Something comparable to Sheltered Workshops for Early Onset AD’s to provide both work and wage when they have lost their jobs, still need gainful employment. Not everyone has disability and not all disability is enough. Social security can take two years to get if at all.
5. Creative Programs: To Stimulate the Minds and Prolong Early Stagers in Early Stage. These need to be structured in such a way that they are social, creative, intellectually stimulating and such to capture a person still functional and in need
Dispute is rampant that no tests have proven these measures work in any way. The National Institute of Health (NIH) recently conducted an evaluation and rendered its conclusion that they do not work.
Unfortunately this was a step taken too far. The NIH takes a negative, namely, insufficiently convincing evidence. It is on this negative they formulate the conclusion medication and other measures taken to prolong one in the early stage do not work.
This is irrational! It is erroneous in this: Determining evidence insufficient does not determine it is groundless and wrong. At best they should be saying, “A conclusion cannot now be drawn.”
We Know what We Know! Myself, I know this of my own experience:
1. Arricept and Namenda taken together increase my cognitive acuity. I know this because I know the difference before and after and once in between when I tried it without Namenda.
2. I had an early diagnosis. With a positive attitude of acceptance I dove into doing everything I could to stop the digression I was encountering. It worked. More than four years since I can read, write, do artwork and function quite nicely. My cognitive acuity remains strong, my interest engaged, my attitude is that things are good!
3. Creative, intellectual activities do work as do social of which I need more.
This has worked well with me and is believed by me to be responsible for keeping me far more cognitive, buoyant and functional than I would otherwise be. I believe this; I see it in others of my peers and believe it of them.
It is certainly anecdotal evidence that is not scientifically sufficient to prove the fact. All other things equal, choosing to believe this affirmatively gives my attitude support and reassurance as I suffer one of the most intolerable diseases possible that is robbing me of my mind, my life and my loved ones.
If in fact it is not scientifically proven dispositive, it is psychologically sufficient. Its efficacy is sufficiently suggestive of contributing to my prolongation in Early Stage. It enhances my Quality of Life helping me to stay in the present lane as slip into the next more debilitating lane.
My alternative life style is depression. Having it and waiting for the next shoe to drop does nothing but hurry its fall. It produces further debilitation into the more harmful stages of AD. That fall is mid-stage, late stage, institutionalization, mindlessness then death.
This kind of depression is predicated on the proposition “Why not get on with it if nothing can be done for it, get it over with for god’s sake!”