Debra’s View Alzheimer’s Association

What continues to baffle me is why people don’t immediately go to the Alzheimer’s Organization once they get a diagnosis.  Let me tell you what happened to me.

When Mike got his diagnosis I was stunned.  I didn’t know what to do.  I didn’t know who to talk to.  I was shocked into silence.  Mike would have been the one I normally would talk to about my deepest concerns but at the time I didn’t feel he was the one person I could turn to.  He was the one with Alzheimer’s. Would I want to add to his burdens?  Unless I could get myself straight with the diagnosis I couldn’t be the help mate I wanted to be.  I wanted to be as helpful as I could possibly be.  But there was no way at that moment I could be the person I wanted to be. What on EARTH did I know about this disease?  It was a lot to take into my little brain at one time.

I’ll tell you what I knew about Alzheimer’s.  Old people get it, then they move into nursing homes and they die…alone.  I had horrible, horrible thoughts.  I did NOT want this for Mike.  I need a briefcase full of information, people I could count on for back up, I needed help!  I was NOT going to let Mike be part of any story I thought had already been written.

We soon got a call from the Nebraska Alzheimer’s office.  I thought, “Oh big deal.  What are they even going to be able to tell me that I can’t find on line?”  I was so wrong.  So, so wrong.  I really think the only reason I went to the initial appointment was that Mike had already been thinking about his potential role as a peer support volunteer for the local chapter.  He already had formulated a plan!   I had none of those thoughts at all.  All I could see was a very dismal future.

We were asked to go sit in a conference room. Which was not that big of a deal in the long run but you have no idea how many brochures were lining those walls.  And you have no idea how much that simple fact calmed me.  Information!  There were even more books that could be accessed.  If I could tell you how quickly I was calmed down I would. Did it take 10 seconds?  Did it take 3 seconds?  Yup.  It was that fast.

I stood up and started pulling things off the shelves. I had brochures and books piled up on the table. And that was the beginning.

Diane, a trained therapist came into the room and spent over an hour with us.  Her main concern was our marriage.  How were we dealing with the diagnosis?  What could she do to help?  Are there resources she could help us find?  Did we need financial planning?  Did we need additional counseling?  Did we need an attorney?  What do we do when we are stressed?  She wanted to know if there were tips she could share with us to help us cope with Alzheimer’s.  I was stunned.  I was thrilled.  I was overwhelmed.  Ultimately I was comforted in ways I didn’t expect.

This was my initial experience with the Alzheimer’s Organization.  I want to stand on a street corner and tell everyone what I know about this organization. They are wonderful.  And that is why I simply don’t understand why people delay going to see them.  I’m sure there are a number of reasons; very personal reasons and I don’t want to intrude. But, I hope whatever the reasons you have can be overcome them if you make the call.

Our communities are made up of so many people. We don’t know the half of what any one person has to deal with on a daily basis.  We are part of that community.  I want to be part of that community. That is why I will continue to speak out about Alzheimer’s, why I will campaign for more studies and a cure.  It is personal to me and it should be personal to you.  You don’t have to look very far to see how Alzheimer’s has altered some family‘s life.

The fact remains; there is no cure for Alzheimer’s. We need to educate ourselves about the process.  We need to be proactive as much as possible.  There is different material to access on line.  However, at the time of the diagnosis human contact was essential.  I will say the combination of material and the hour spent with a therapist was just what I needed to get my head together.

The Alzheimer’s organization must be on your list of to-do.  My hope is that you will find the people there to be just as helpful as I found my local chapter to be.  My hope is that you know you will not be alone during this disease.  Please help yourself with any additional education you find.

Mike Hughbanks Video Series

The video series produced by Chris and Diane Silva is now available on YouTube. I have attached the video on this post. It aired on Positive Momentum TV March 9th. It is a series on Alzheimer’s Disease, Show 1 featured an interview with a caregiver. Show 2 is an interview with me as a Person with Diagnosis.

Future shows will address Debra’s perspective, Elizabeth Chentland from the Alzheimer’s Association, and the 25 minute presentation that I give at speaking engagements. We are working on more shows along with a live call in show coming soon!

I will post the video on my blog as each episode is available.

March Update

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.

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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.

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