It’s wierd.  I really don’t know what I’ve forgotten. 

I feel my memory is intact, but secretly…..I have no idea. 

I went back and read my blogs, I forgot I had written so many of those thoughts.  Super strange.  A recent comment had prompted me to do so.  The person commented how they have ” followed my journey”; I thought, what has my journey been?

To be clear, I am completely aware I have written blogs, no worries there; but the intent and content only came back once I read them.  I hope you understand what I’m saying.

My memories have always been associated with visual, scent, time of day ( like sunshine and warmth or dark and chilly) season and especially feelings. I’m loosing that.

As I’ve previously written, my days are spent in the present, I don’t think beyond that.  But it became a bit too real for some reason, just today.

I’m not overwhelmed, I know it is what it is….but surely, it’s a big thing.

As per most people living with this disease, long term embedded memories are still there, it’s just odd to realize that my current realities are changing, like really realize it.

Next……it sort of goes with the above thoughts.

I recently read an article from the author Gayatri Devi, M.D. They wrote a book, a pretty good one, I read part of it on Google books, I’ll put the link below.

The book is titled, The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias

In the book the author discribes Alzheimer’s as a “spectrum” disease.  This , to me, makes so much sense.

The author writes, ( I’ll paraphrase), a person with kidney disease is treated for the kidney. The kidney has a specific function in the body, there is focus.  A person with Alzheimer’s or other related dementia has numerous interrupted functions of numerous organs simultaneously, often spontaneously, but often without similarity to others,  or even warnings, as the primary organ governing ALL organ, the brain, is dying. Memory could be a significant component ( as with Alzheimer’s ) however memory may not have the greatest impact. It’s the accumulation of various attributes of the dying brain and it’s multiple effects or impacts on normal body functions and normal daily living functions.

Whoa!.   Boom!.  Huge Spectrum. 

Segue……

Not quite sure what to write about.  Things have been pretty uneventful.  This part of my bloggy entry should be quite random, lol!

I went over to visit my grandkids earlier this week.  My grandson and I watched HR Puffinstuff, a 70’s tv show that I suddenly had a memory of.  It was my absolute favorite when I was a kid! 

My grandson was in “awe” ( total disbelief) of the show,  to say the least, but watched it anyway.  He is so kind. I love him.

My grandkids don’t know of my diagnosis yet. I agree it’s to early to tell them.  I’m still functional, still mostly the same.  I’m sure they notice the subtle changes, however, they are kind and helpful and I feel they accept me and those changes without question.

We used to go the forest and explore every chance we had.

I chose not to drive anymore in mid 2019; I got lost once while working and it terrified me.  I knew I was heading to a specific city but I had a sudden and overwhelming feeling of emptiness in my brain and body; everything vacuumed out and I was left feeling like I was floating, with no idea where I was. I stopped driving shortly after.

Not driving stopped our forest visits.  Even when I lived in another city, each time I would visit, we went to the forest. 

We talk about the forest alot and how much we miss going there. Our adventures were amazing!  Wild deer would walk across our path, it was epic!  I taught them about the forest, how life exists there. Watched them as they learned to feed wild birds from their hands as the birds perched on their fingertips. The amazement on their faces….. breathtaking.

I miss the forest for all the reasons.

Next……

Recently, my story was featured in the 2020 January Awareness campaign for The Alzheimer’s Society, I put the link below if you want to read it.

My friend Lisa had seen the article and noted what I had written regarding friends, she disagreed with it.  I agreed with her disagreement, if that makes sense.

My words were written around June or July of 2019.  ( Maybe August, lol, I have no idea) Even though they had told me it was going in the January campaign, the time span was a blip, and totally forgotten about. ( Imagine that!)

Friends have reached out since writing this blog, Lisa being one of them. Lisa is a long time friend of mine; we lost close contact for a number of years, but never skipped a beat each time we ran into each other…..mostly at events where we were both photographing the stage. 

Lisa is a great friend.

And now this…..

My nose runs all the time. ALL the time.

I went into my purse yesterday and no word of a lie!……. Bunches of used Kleenex. BUNCHES.

It hit me right then how intense this has gotten.  I Googled it, of course, all the time thinking about all the places I just pick up random napkins and steal Kleenex and lengths of toilet paper from everywhere I go…..also thinking why the hell haven’t you emptied your purse.  Oh ma’ brain.

A runny nose is unusually associated with Lewy Body Dementia, I don’t have that. It can also be related to medications. My nose adventures started in 2018, now they are just worse. My medication started in April or May of 2019.

As the breakdown in the brain continues, the “signalling” becomes broken or divided.  Apparently my brain to nose highway  ( I guess that’s one way of putting it) is breaking down.  I got potholes.

Another issue, prevalent with this disease, bladder control. That’s all I’m gonna say about that. Also a mid stage experience.

Both of the above are clinically and scientifically measured at mid – stage of this disease. That is scary.

I’m sitting here wondering if the A-Typical diagnosis I recieved is my true backwards evolution or am I entering mid stage. So many things line up but so many things are not typical. Is my natural anti- inflammatory medication masking some more prevalent ” lucidity” tell tale signs? Is it just my journey with this?

I know that being off that anti-inflammatory for those few months showed me a horrible glimpse of living with fog events, but honestly, where am I in this disease.

I’ll probably write more on this in the future.

Stay well my friends!  Xo Jan

Music link,  GET UP and  dance!

https://youtu.be/gtavI1VTp4U

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This is the link to Google books, a portion of piece mentioned above:

https://books.google.ca/books?id=npTfDQAAQBAJ&pg=PA1&source=gbs_toc_r&cad=4#v=onepage&q&f=false

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The link to my thing for Alzheimer’s Awareness month:

https://ilivewithdementia.ca/janet/