Disease I think affects each of us very individually because of the brain
cells it chooses to attack -- each victim different and yet the out come
will be the same it is just the path which differs. I think sometimes many
of us try harder to do more and to be seen and recognized as we are so
frightened within about having Alz.D and knowing it's consequences that
we strive to be recognized, validated as alive, as rational, as productive
human beings. And yet others will choose to ignore, to hide from and thereby
deny its existence. Because at diagnosis we are immediately discounted
-- our views are discredited because of Alz.D.
I chose to speak openly about having Alz.D for many reasons - for one, many of my peers are unable to speak anymore, another reason is that the treating drugs will have little or no effect if started later in the diseases progression, another reason is the need I feel to put a 'new face' on Alz.D -- to let people know that it is not 'Old Timer's Disease' but strikes many in their 40's & 50's and some even younger, also I want them to realize that this is not an inevitable disease, nor is it one of consequence.
Not too long ago I was invited to attend an Alz. conference, not to speak this time, just to attend. As usual there were the ever-present exhibitors, and I made my way around the room perusing and stopping at each display. Of course they all want to know your affiliation. It doesn't matter the great engaging conversation we've had, invariably when I disclose that I am the patient they become stuttering messes! They have patients services, products and homes, they have caregiver resources, support, but dan if they can figure out how to converse with a patient! After I have been identified...we may have had the most engaging wonderful exchange before ... the conversation abruptly ends. At times amusing, always disconcerting as this is a group gathered specifically for Alz. awareness and yet they themselves are at a loss......... how can I expect more of the general populace? I could choose not to identify myself, but what is the value in that? Perhaps 'they' will see that Alz. D is not just a product, not just a service, not just a means to making a dollar, but that Alz. D is real, is alive, is a human being.
At this time I also choose to be alive. This is one of the harder issues of having been diagnosed early, and of ferreting out knowledge of the disease and it's progression and being involved with peers and caregiver's who are father down the road with this disease. From the outset, as I mentioned, you are discounted and become invisible during most conversations. The guilt that is heaped upon the patient is enormous, not intentionally of course -- through no fault of our own we have Alz. D which will cause untold misery for our caregiver's. More than anything this is hammered into you as you seek eldercare attorney advice, Alz.Assoc. support and counseling we are only in existence to make them members of this society of caregivers! I did not ever hear any support or sympathy for what will be my losses in a life ended with Alz.D. Where is the dignity in a life that after diagnosis has no value, in all subsequent conversations only my caregiver's needs were given any validation through the support, counseling and respite offered. Oh, yes there is no question that those days will come, but I am not (and was not) to that level of incompetence merely because a diagnosis had been made. I do not want my husband, children and grandchildren to suffer through the end of this disease with me. And yet I am selfish enough to want to be here as long as I can, to enjoy them as long as I can. And yet I hope I can remember and know when is then. So even though you may not think living is a hard choice, for those of us that know the consequences of this disease and the devastation it reeks upon all it touches, and the guilt with which we live just being alive with the Alz. D diagnosis, for me it is a choice whose judgment I question often.
If I could choose how I as a member of the Alz. D and dementia society wish to be seen it would be enough that within the medical field and affiliated services for this 'society' that we be seen in an optimistic and not fatalistic light. That now with the extremely rapid changes that are coming about with new medicines, gene mapping of chromosome 21, cell rejuvenation therapy, etc., etc., that Alz. D be seen now as a manageable and treatable disease. Yes, I know that there is still no cure, but, there is no cure for diabetes, high blood pressure, liver dysfunction ... and yet there are courses of treatment that will control to a degree and manage the disease. Perhaps this approach will take the stigma away from the disease, and get more people to come forward and accept and seek diagnosis at a younger age when present drugs can be affective. I myself am proof of the new generation of 1st time Aricept users ... 3 years now my testing has held basically steady, albeit slight slipping in some areas, for the most part the diseases progression has been forestalled. And perhaps if forestalled long enough, there might even come a time when there might be a halt to this monsters progression. You know better than I then rapid fire advancements we are now seeing.
Now these are perspectives of an EOAD, I find many within the field are not comfortable with the fact that I and many of my peers have not continued down a predictable course of decline -- progression into Alz. D was expected, was somewhat predictable in it's timeline to death -- That challenges the Alz. Caregiving community to revise and renew their thinking. We have come to accept the death of a person with Alz. D as matter of fact, and have prepared the road well, modern up-to-date facilities just for Alz. caregiver resources and respite -- now we need to prepare the road for living with Alz.D. Patient support and counseling -- family, marriage, legal -- crisis intervention. These are needs people 'living' with Alz.D. need to maintain their dignity as viable, productive human beings not life's discard because of a disease.
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