When I last met with my neurologist, she stated my diagnosis was A-Typical.

My immediate thoughts went to A & B personality type straightforward definition ( I am B, = Type B personality traits are relaxed, less stressed, flexible, emotional and expressive, and have a laid-back attitude.) A-Typical Alzheimer’s, easy definition,  in my mind it made sense, straightforward diagnosis.Wrong.

A-Typical is not an easy diagnosis. In a sense, my Alzheimer’s works backwards.  It’s rare, only about 5% of EOS have this type; no familial line, no clear cause.

My last meeting was in October 2019.  I just never looked it up. When I did it totally made sense.  For some time now I’ve been questioning my diagnosis as I don’t seem to be following the “regular path”.

My online family, we discuss all of our symptoms.  Most of my pals have been diagnosed longer than me, but I notice my symptoms are equal to or worse in some areas,  but also that I’m missing some things.

I know completely that this disease manifests and progresses differently for everyone, though that was it; but mine was so unlike the many documented paths I have read and the early experiences of those I chat with.

As I said before, my memory is pretty much intact.  Once I finally had a diagnosis, the bubble burst and my life flooded back…..stress. ( perhaps?).

With A-Typical , the memory portion of my brain ( Hypocampass + other  ) and my Axon ( your brain super highway) are not at this time effected, usually those areas are the first, but not for me.

My Mum kinda had a hard time believing I had EOA, she said, “your recall , processing and intent are not in line with this, maybe it’s something else”. It was hard for my Mum to understand the struggle I was having…..remember the curtains? 

My daughter, after researching, Dr visits, contact with other children of parents with this disease, seeing me and monitoring me, I think she had a hard time seeing EOS as being definitive, but she certainly noticed everything else.

I was exhibiting portions of this disease, but things that should systematically happen later.

A-Typical discribes me to a “T”.

Having said that, I will still get all the “things”, just in a different order.

Definition:

Atypical Alzheimer’s disease

In some people with Alzheimer’s disease, memory problems are not the first symptoms. This is called atypical Alzheimer’s disease. It is still caused by plaques and tangles, but the first part of the brain to be affected is not the hippocampus.

In addition to that:

Posterior cortical atrophy (PCA) – this develops when there is damage to areas at the back of the brain. These areas process signals from a person’s eyes and help with spatial awareness. This means the early symptoms of PCA are often problems identifying objects or reading, even if the person’s eyes are healthy. Someone may also struggle to judge distances when going down stairs, or seem uncoordinated (for example when they’re getting dressed).

Logopenic aphasia – this develops when there is damage to the areas in the left side of the brain that produce speech. The person may have problems finding the right word, or take long pauses while they’re speaking.

Frontal variant Alzheimer’s disease – this develops when there is damage to the lobes at the front of the brain. The symptoms include problems with planning and decision-making. 

These things I have, they came first, not the memory loss. ( And more, but I’m trying to make it short ) Not so much the first one, but spacial awareness is becoming an issue.

My daughter noticed I couldn’t figure out how to put a diaper on (front to back) with my granddaughters.  It took a couple of attempts ( on numerous occasions) but I still got it. Soon there will be no more diapers, for now, I’ll be more attentive or ask for help.

My speech, I pause longer and search more, looking at the sky for answers ( like that would help lol) while my brain searches and my mouth tries to spit out the words. It comes in bits and pieces, but eventually, it will worsen. 

I have moments when it’s so fluid, other times I just listen and smile. It’s wierd, I can actually feel when things aren’t gonna come out right, do I don’t talk much till the feeling goes away.  My conversations are usually short now; not the usual bantering.

So, I’m a bit backwards, nothing new hahah!  I’m doing things differently, in a different order, it’s always been the way my life has been, I’m not so worried.  This evolution of me is progressing, that’s for certain.

Today I will be working on a new painting. At least that’s my plan.  Once it’s finished, I’ll post a picture of it.

I closed my dresser drawer, finally.

Between my daughter and Google, I’m eating more regularly. We’ve talked about assistance from VON.  If I can’t keep a good schedule, we’ll make a decision.

I had previously mentioned, I don’t get brain fogs anymore, still true ( yeyyy! Serrapeptase) but my spine burning is getting worse. Debilitating. It’s lasting sometimes two days or more.

Also my hip. So annoying. Can’t walk long, some days more than others. I don’t go out alone as much, I’m scared I won’t make it back due to pain, I don’t get lost at this time.

When I shop with my daughter, we always use the same path in the store, it works. Once we had to go around again cause we forgot a few things, I nearly died.  I was white knuckling the cart.

Initiating tasks is still a thing with me. But, I look around and see most everything is done so I’m more at ease.  This is the longest I have ever taken to settle in a new place. I keep telling myself, ” no new projects you take too long to finish them” , ha, I wonder how long that will last.

The guilt and unease of seeing incomplete things is unbearable…… especially when your mind and body cannot connect to finish them.  I keep telling myself, get up, just do it…..but no, it doesn’t change a thing. I just wake up one day and finish things, days or weeks later. I’m fine with that now.

I have come to learn that there are numerous, NUMEROUS things related to EOA that no one, not even Doctors tell you about.  Point blank doctor’s don’t tell you much.  People living with this disease tell you everything.

There is one line of ( currently struggling to find the word)……..the only word in my head is “duality”, but that’s wrong.  I’ll explain the thing then I’ll either find the word or you’ll just know what I mean.

There is loss.  And the self mourning period is long and drawn out…… Oh, and always hidden from everyone.

This was recently discussed during an online campfire, a portion of the loss.

When you are a mother, you nurture and help grow, as an employer or coworker, you guide and ensure learning, as a friend, you encourage and lift.  ( Each role is basically the same, United in the efforts to see others succeed)

When you cannot do all those thing as you were able to do so before, when you see your capacity to clearly navigate basic lifeskills fade, when you participate less, when you realize you cannot do things as before, when you understand you actually negotiate with yourself, when you understand that you are constantly reworking life long methods, ……you experience loss so immense, so frightful that you can’t even talk about it.

That mourning period last so long. It last so long that sometimes when you finally let it out it becomes a surprise to those closest to you because people see change only, no one thinks of the emotional burden.

I mourn the loss of me, absolutely.

I have been fortunate to have a family that listened, but the pain is still the same.

I have grieved the loss of my sister and my father, both died very young. It was aweful.

But this pain, it has been in me for years.  It floats silently way down.

We all feel this.  Long, much longer than anyone knows.  Those years of trying to get diagnosed, the years of struggling never knowing what’s wrong, and all the time, loosing yourself, bit by bit, pieces of you just dying away. It’s a long, tiring process.

It is the one thing we, all those living with this, have completely in common. The ultimate common thread. ( Insert the word I’ve been trying to find here.)

For those who read this and have a family member diagnosed, please think of this. I hope that it opens a window of foundational understanding, beyond what you understood before.

For those living through this loss, I once again send you the warmest hug.

Segue…….

There are two people.

Two people I have been struggling with, in my mind, to reconnect with. I’ve decided not to.

Distance dosen’t separate people, silence does.

I know both of you probably read this.

Stay well my friends xo Jan

https://youtu.be/l7GnVHmTiI8