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Living with MCI
Posted: Thursday, July 19, 2018 9:56 AM
Joined: 7/17/2017
Posts: 342

Before I start, Im well aware that my issues are not comparable to those of you with dementia. The only area we have in common is at one point, you all went through the MCI stage.

2 years ago, I was diagnossed with MCI. Since then, 2 annual lengthy Neuropsychological testing sessions has confirmed the diagnosis, and also 2 different Psychologists and 3 Neurologists  also concurred. 

Im at the point where I never trust my memory, and rely heavily on elctronic reminders, and doing things at the moment I think of them vice waiting till latter when I will probably forget. I know in the last 2 years I have progressed, but to what level, Im not sure anymore. My wife also agrees with this.

I’ve  read as much as I can on EOAD and MCI, and symptoms of progression. Im at the point now that I wish I knew what my future holds. Many of my symptoms and behavior issues according to my research, seem to indicate I will cross the line eventually. Then again, I can run everyday, no balance issues, and at 61 im getting faster, and entering races. My Neurologist thinks running is helping slow the progression down, so who really knows?  I have read about several people still running daily even after a diagnosis of AD with Greg O’Brien being the one I read the most about.

I guess what Im trying to say in this rambling, is Im tired of waiting for the what ifs, and simply want to know, good or bad news. If my future is bad news, I have learned from many of you that there is still quality time even after diagnosis.

What a strange disease this is, and with no regard to who gets the diagnosis. Some of you were teachers, Doctors, Lawyers and many other important fields. Who would've thought back in your 40s what your future would entail. For me, what keeps me from screaming out is my faith in God, so I know my ultimate future is going to be beyond what I could ever imagine or deserve.

Posted: Friday, July 20, 2018 7:50 AM
Joined: 5/20/2014
Posts: 4406

Andrew, sometimes I feel the same way and at other times I try to stay focused on the here and now. I have to do things the moment I think of them also or I will forget. That and constant note writing is key to my survival and functioning. I cannot remember a phone call from two minutes ago? Who I talked to or what the call was about?

It feels like pressure always having to write everything down and trying to get things done before you forget.

I choose to take the spiritual path also which for me involves having faith the future will not be as bad as some project it may be. And if it is bad then who am I to think I should get a free pass when others suffer in this life all around me? Who am I to think I should get a free pass when even children pure and innocent suffer? Whatever the future holds I'm not there yet.  I can live and enjoy all that I have in each moment. God's got this Andrew. I know he wants me to enjoy and most importantly be aware, hyper-aware of all the blessings that I have in this moment. He wants me humble and grateful.  

I'm prone to pity parties now and then but he dislikes my selfishness. He wants me to come outside of myself and help others. There are others less fortunate all around us. -Peace

Mimi S.
Posted: Friday, July 20, 2018 8:26 AM
Joined: 11/29/2011
Posts: 7035

Hi Andrew,

My motto is one day at a time. Now that I have a diagnosis, when I make a mistake, I shrug and mutter ... AD.

Iris L.
Posted: Friday, July 20, 2018 5:37 PM
Joined: 12/15/2011
Posts: 16444

Andrew, what helped me was coming to the realization of being a Dementia Pioneer.  I decided to fight for my life.  I decided to do whatever I have to do to maintain my independence and to keep functioning.  This means planning and taking steps.  (Best Practices and other steps.)

I also spent a great deal of time absorbing wisdom from the other members here who have gone before me and who are here at the same time as me.  (alz+, Mimi, Michael, Ilee and many others.)  I'm learning to look at my life in a different way that accepts my condition as what it is, not as a failure or defeat.  We did not come here to stay.  I think about my legacy.  

There is more, but I am at a public library, and I can't write more  now. 

The neurologist has me down as minimal cognitive impairment, but I am way more than minimally cognitively impaired.  I also have other medical conditions that impact my cognition which the neurologist doesn't talk about now.  There really is a limitation as to what they can do.  It's up to us to live the type of life we want to live.  No one can tell us how long we have.

Iris l.