Too much time has slipped by since my last update. Between speaking engagements, house projects, and disability issues the last several weeks just flew by.
“A New Normal” was a presentation I did in Kearney and also Grand Island in February. We were expecting 25 -30 people at each event, in the end we had over 100 at each. I am still amazed at the turnout. The event was co-sponsored by CountyHouse and the Alzheimer’s Association. It was a long but very productive day. The sponsor’s did an excellent job of organizing the events.
Both groups were interactive during the time of questions at the end of the presentation. I was surprised at the number of people remaining after the event was over to talk about their individual circumstances. There were some heartbreaking stories, but also words of encouragement. It was good to hear people share their appreciation for the event. Many thought the time and sharing of my life experience was of value.
I continue to be surprised at the number of people recently diagnosed and are told their next appointment is at least 6 months or possibly as long as a year away. What bothers me is that they are not told of any other resources available to them in the interim. I am going to highlight a few questions and comments that were common from the presentations in Kearney and Grand Island.
People were asking me about medications for instance. Many of those diagnosed or their caregivers have never heard of Aricept or other medications. These medications may not be a cure nor can they slow down the progression but in my case, it helps clear my thought processes. I have mistakenly commented before that Aricept is generally used only in the early stages. That is no longer the case. It is now believed that Aricept has advantages into the later stages as well. It was explained to me like a sliding scale. As the disease progresses, Aricept continues to be effective in that it will continue to help with the thought processes. I may see declines over time, but even as time goes on, I am better with Aricept than without. I was told by my Dr. to plan on taking Aricept the rest of my life.
Tests was another question that was frequently asked. I am continually surprised at the lack of information about neuropsychological exams, spinal taps, genetic tests, and even brief memory and cognitive tests. Many people are admitting now they had signs of Alzheimer’s many years before their official diagnosis. They were not offered or the tests simply were not available in their area. I can’t stress enough how important it is to insist on testing if you feel that there is something wrong. We have to take control of our health care. “Among all people living with Alzheimer’s disease, only about half have ever been diagnosed. “(Alz.org).
Those of us who live in larger metropolitan areas should feel fortunate that we have the medical specialties close by. Many do not have local memory clinics, gerontologists or neurologist. Out of the hundreds of people I have encountered over the last 5 months, I can count on one hand the number of people that have had a spinal tap or a Neuropsychological exam.
Social Justice is the view that everyone deserves equal economic, political, and social rights and opportunities. I think this a noble thought and idea, but we are not there yet. This is one of the causes that needs continued support and attention not just on the local level, but also at the state and national level.
An advocate is someone who speaks on behalf of a cause. We can all be advocates for Alzheimer’s Disease and other dementia’s. You don’t have to be a person with the diagnosis or their caregiver to be an advocate.