PAIN. OMG! So just to back track………… Over the last year I’d had a few incidences of weird pain(s); the pinnacle being an exposion of pain throughout my body waking me up in the middle of the night. Anyway………my daughter accompanied me to the Dr, RESULTS: neuropathic pain, not unlike fibromyalgia, more specifically my parietal lobe and pain centers.

So I guess my brain finally said, “Jan, You’ve been doing so well, lets just give you something else to deal with.” Damn Brain and its crazy ideas.

Well let me tell you, my Brain was super serious in its idea to change the course of my illness. AND, I totally hated my Brain like you hate your best friend in grade 4.

The first 2 weeks, as my medication got into my system, I was starting to feel so much better. I could move much more fluidly, so much pain had gone. Then it plateaued.

Those few days of what seemed to be total relief were gone. I was back to spending more days completely in pain and in bed unable to walk around for more than an hour or so a day. Totally isolating.

I would have one , maybe two days out of a week (2 out of 7) days that I could leave the house, get groceries or visit my family, then back in bed, coma sleeping, heaviness in my body, brain and back. Absolutely horrific.

I cried so much. So, So much. It was awful. Truly, Truly awful.

Waking in the night with my body covered in sweat, and I mean absolutely soaked, waking in pain; struggling to get to the bathroom, prepare food or even get a glass of water; just walking was so painful that I set up a stool beside my bed to ease my body down so I could crawl on all four’s to the bathroom. I set my crutches beside my bed to help on “lighter pain” nights and days.

You see, I had REFUSED to go higher than a minimum dosage. I guess it was because, in part, I just don’t want to progress. I don’t want to feel more loss.

My thoughts with regrad to that changed when I had a moment, clarifying my current state. “Self, if you don’t care for your self and ease this pain, you will loose so much more”; I increased my dosage.

Today I am doing much better. I have low pain, low enough to function somewhat normally. My pain tolerance is high so on what my pain is from 1 to 10, I cannot define it, but I feel way better.

Pain in aging Alzheimer’s, it is more often than not overlooked. Sadly, reactive changes in aging Alzheimer’s is often looked at as “part of the disease process” often handled by heavy sedation, sometimes retaliatory abuse.

I want you to also understand, its not always JUST the pain, but it could include SENSITIVITY to pain.

Signs of pain in Alzheimer’s (at any stage or form) include the following: CHANGES in behavior or routine, these could be sudden or ramping. CHANGES in mood, usually getting more grumpy or short tempered; CHANGES in sleep patterns, short out of sort day naps, shorter all over night time sleep, wandering even can be a sign during regular sleep times, moaning during sleep events; CHANGES in eating, less intake or both food and fluids; CHANGES in walking, gait and flexibility. (this happened to me for sure!); CHANGES in reaction time, mental fatigue and understanding. These and so many more changes in your loved ones could possibly mean they are in pain. DON’T ignore these signs. Many persons in later stage OR at stages of non-communication are in, in my opinion, great risk for so many reasons.

Passing this off as the “normal progression of this disease” is a complete injustice. Pain management can increase greater well living, more cognitive days, quality of life, family and viable memories with your loved ones. PLEASE don’t ignore these signs or pass them off. Alzheimer’s is SO much more than memory depletion.

It is the complete body reacting to the changes in the brain; changes that can be debilitating both physically and mentally. I beg you to keep that in mind.

In my case, and perhaps in cases of Early On Set, communication is not an issue. I can freely and most certainly tell both my daughter and my doctor EXACTLY what is going on, therefore, able to manage this part of my disease process.

Further to that, it is a double edged sword. Is knowing whats going on better?

I struggle with realizing, actually realizing how quickly things are changing. I stand defiant on more occasions than what I would like to or even realize, but it always hits like a ton of bricks. That moment, through all the moments of knowing I cannot stop this. There is nothing I can do to stop it, just find new coping methods. Elimination, acceptance, reworking, defeat, sadness and then letting it go. My brain is dying and I know it. Such a shitty thing to know.

All of us with Early Onset have the daily task of routine as above. Its exhausting. For the most part, we keep it to ourselves, its our private Matrix. Red Pill or Blue Pill sort of thing. Some, sadly, succumb to it.

To be brave with this disease is an understatement.

Stay brave my fine feathered friends! I love you.

Segue…………..

So, I’m packing. Well, not so much packing but sorting. Well, not so much sorting, but moving things around. Well……..maybe just making a mess.

To be disorganized during this crazy brain thing is NOT what s my ideal situation. As I said before, my apartment is a studio, no walls, lots of walking space. During the last few days I have paths like a hoarder. its killin me. So I sorted it to manageable.

An area to just leave what I don’t want. ( Truth be told, I could probable sell lots of it but I don’t want random people in my apartment, so I’m leaving it for the landlord to dispose of hahahahah!) An area of things for the new house and then my undecide pile, I’ll let my daughter help sort that out.

Today, I am actually putting most of the keeping things into boxes , bought a big black marker to mark the boxes and will stack them up. That is my plan. But a nap will probably creep in there somewhere, maybe…….I’m not ruling that out.

Stay well my friends! xo Jan

A great track to listen to below, enjoy the music!

So …. I’ve been working on a project. It’s almost done! I bought an old tallboy, 1920’s. I used clay to design the individual designs and also added sea shells. This is it unfinished. I LOVE IT! I’ll post another pic once it’s done!

That’d be great!……  Fresh crisp smell of the cool Alaska air….. But no, I have to do the dishes and clean the bathroom.  Another day perhaps!

There are days I take people quite seriously, like when hey say ” make yourself at home!”; I just might rearrange your furniture and yell at your kids. Other days, I just don’t care.  People are funny. Some days I’m funnier than others, today I am comical for sure. I think it’s cause I really feel better.

My past week or so has been pretty darn good.  The new meds for the crazy pain signals my brain is producing seems to be working.  I am absolutely more agile ( my cat like abilities are returning hahahah!), Feel much more confident in taking a walk around the city, even a second round in the grocery store is not out of the question, feeling peppy!

My pain threshold has always been quite high, so I’d say it’s staying between 6 & 7 even with the meds. I’m pretty good with that, although I still have a good amount of “unease” in my back and right hip area.  I’ll give the meds one more week then possibly add in one more dose.

My plan?  To handle the immediate pain with pharmaceutical meds, then slowly ween off to CBD oil.  Will be working with a registered Dr. here in my city to find correct strain and dosage, as well as purity, to handle this in a cleaner way within my body.

Just to be clear, CBD oil will NOT  get me stoned.   Honestly, I’d probably be funnier stoned, BUT it’s just not for me.

Lately, I have found that my bed is a place I suddenly remember everything I forgot to do. It’s crazy! I’m trying to change that.

Listen , my bed is fantastic.  It is the most wonderful place in the world.  A great mattress, big soft fluffy douve, fluffy blankies and all sorts of pillows…..it’s the last place I want to remember I forgot things.

There is no way I am getting up to write down something I need to remember.  I am not putting a notepad beside my bed and it’s not going in my phone. Consider it gone.

I know that something will prompt me to do those forgotten things some other day. Sweet happiness, or blissfull ignorance, I’m fine with either.

I think the lack of pain is allowing my brain to engage some functions OR maybe letting thoughts get through. 

I hope at least it will let me pack up my place in an organized fashion.  As I wrote before, my last move was horrendous; I just left things there, could not get my mind focused enough to get it all together.  Hoping this packing adventure will be better.

My Mum is coming for another visit!  Woot! Woot!  Mum will help me organize my jazz for sure!

Segue…..

I like to play this game called nap roulette. It’s where I take a nap but don’t set an alarm.
Will it be a 30 min nap? Will it be a 4
hour nap? Will I wake up tomorrow? Nobody knows…. it’s risky….And I like it!

Here is the link to Dementia Alliance International, please consider joining, it’s free. It is a place for wonderful support. Peer to peer support, we all need that. Xo

https://www.dementiaallianceinternational.org/

Stay well my friends xo Jan
Now dance!
https://youtu.be/-Oyp4R6Rnvo

In the big picture, Dementia, the word, the experience, paints a picture of inability.  That’s ugly.

As I said, I’m trying to change that image, many of us are.

Dementia is an umbrella term for a multitude of symptoms which develop into categories of neurodegenerative decline.

Neurologic decline can happen for several reasons, and it’s not only genetics.

I have Dementia, particularly Early Onset Alzheimer’s Dementia. Each time you read this blog and all that is within, you are reading the words, thoughts and phrases from the mind of a woman with Dementia.

No one helps me write it.  I open an app on my phone and type it in. No proof reader. No grammerly app.

But wait…..it may come to mind ” she is not too far into the disease, that’s why she can do this”. I hope that’s not what came to mind.

What I hope popped into your head was something like the following…..
” This woman, WOW!”.

You see, Dementia is my constant companion. I live with a Functional Cognitive Disorder. We live together, intigrated.  But it doesn’t boss me around.

It’s not about disparity it’s about accomplisments, not giving up but pushing through, not about hatred, but about love and living. It’s about the Mindfield.

Yesterday I signed all the paperwork for Power of Attorney, Living Will, End of Life Direction and all the other stuff. Yesterday I planned my death. 

Today I’m writing my blog, I’ll be on a video call with my friends, I’ll eat dinner, finish the dresser I just painted and a bunch of other stuff.

I write to you about my journey.  It’s an  important dialogue for others with Dementia and carepartners.  My form of this disease hopefully provides insight to others as it seems the symptoms I have usually do not appear until much later in the disease, perhaps when a person cannot communicate, my journey is hopefully providing insight, a possible care prospective.

I could absolutely shut down and live the image of this disease as it is pictured throughout the world, we all could. BUT WE DON’T. 

There is no question, it can really be a struggle, but it’s a struggle we all champion Every Damn Day. 

What is inevitable is inevitable, there is no changing that, and that applies to all humanity.  Those things you “see” about this disease absolutely have a possibility of happening to me, but not right now.

So here is a shout out to all those who manage this like a GD Boss!

Let your Mindfield groove.  Let your soul shine.

Stay well my friends xo Jan
Thank you Christine , the link below is a beautiful song.

https://youtu.be/IzRF3cDIPQw

What if……

Throughout your childhood and adolescence, perhaps continuing into adulthood, your parent (s) abused you mentally or physically.

You endured this life and every single thing , emotion and effect.  Then, that parent ( s) is diagnosed with Dementia.

You have contacted the police numerous times, you have made reports, you appeared in court and bared your soul tell all those who were there the intimate deals if your life.

You have isolated yourself from them, no one for years has had respect for that family member.  There has been no contact, no connection but deep down that connection, that deep family pull to care finds its way to the surface.  Your parents have no one…..but you.

Despite the horror you faced you make the enormous choice to change your life, not nessesarily forgive, but change your life to care for your parent, a parent that nearly destroyed you.

This happens. This is real life.

Dementia in all forms does not discriminate. Let’s be real.  There is no etherical divination.

Care, in all forms needs to be examined.  In the above real life situation, dual priority care needs to be realized and administered.

An examination of the current prospective and guidelines for care that our world society creens on, in my opinion, is misplaced, outdated.

Care, at every stage, development and crisis point is vastly different. The need for specific care at each stage as vastly different and dynamic as the personalities you are caring for.

What if…….

Your parental relationship was so absolutely wonderful for your full life.  You grew together, enjoyed a life of endearment and complete love and respect. Then at the year of your mom’s 50 yr span on this earth, you notice things……odd thing’s…..changes so unlike her character, personality and life long habits.

That is what happened in our lives. 

How do you define the type of care needed for myself and my daughter.  It is certainly different.

Understandably, horribly even, the care needed at the end and nearing end of this disease is painstakingly similar; all carepartners will endure tasking bathing their parent, ambulatory assistance, nutritional assurances and incontinence upkeep. But have you ever truly understood or thought of what life changes that child has made in order to make sure their loved one is loved without barrier, judgement or second thought.  Then you must make even bigger desicions and choices once you can no longer balance the greater need and love….you have to give your loved one away.  That is asking so much of any person. Who will help guide you.

This whole, entire gigantic life altering bullshit is just pissing me off.

Honestly, who is looking at all the first steps, all the time prior to this disease taking our selves away from our own existence; the time before we become the over stated and off the cuff ” shell of a person”.

The mainstay Alzheimer’s groups asking for your donations are predominantly still focused on aging Alzheimer’s.  The information available clearly reflects my statement above.

Early onset of all forms of Dementia have been growing exponentially for more that 20 years.  It is now verging on epidemic.

Carepartners in the PRIME GROWTH of their lives are now, in all aspects, careing for parents in the PRIME of their lives. It is unforgivable.

Sequestering the available unrealistic sanctions of professionally prescribed care attributes no longer works.  The ideas are outdated and somewhat redundant.

Someone has to take a stand. This is the beginning of my stand, my platform and my voice.  To be clear, I am one of many.

Collectively, we, those diagnosed and those providing the vast ever-changing care perspectives will make those changes.

Step by step. Story by Story.

To remain stagnated in the aide provided in all levels and the suppression of critical care objectives is offensive and unjust.  The suppression of those with voices, personalities and the gumption to share the most relevant and intimate knowledge has to stop.

The ” mainstream” professionals must move beyond their ego of self and professed knowledge and start asking all of us …..  The carers, the families and those living through the movement’s of this terminal disease.

Companies “Re-Brand” all the time, well, let’s RE-BRAND this illness.  Instead of statements suffering, chose living well, start saying Functional Cognative Disorder instead of the usual damming alternative.

After you choose to care for your parent out of pure love, no matter the circumstance, because it all comes down to love; your life changes.  From your career, to your finances, your home, your children, your dreams and goals…. your concept of life.

At diagnosis, you are left alone , pushed into a life of publicly defined desolation. How would you deal with that?. There are no words.

Our, those diagnosed, our thoughts gravitate towards our families and the immense landslide about to launch. How do you talk about that? 

Who is listening.?

Perhaps a graduated approach to care?  I’m not a professional, I don’t make the charts.
BUT I CAN TELL YOu what the charts need to include. 

Without a doubt my knowledge, my daughter’s knowledge and the millions of people living with this diagnosis can provide you with everything you need. Build the business, if you will.

I wrote once about the statistics, it’s still ONE in THREE.  1 in 3.  Those statistics will only continue to narrow.

At this stage of progression, I am still able to perform most of the basic daily living skills .  But I cannot perform them completely or on a regular schedule.  I hope you see the scope of dispair associated with that. 

I am not here to sway you to one ideal of thinking, I am only asking you consider the collective message that has run through the blogs I have written.

I will never bandstand, but I will stay true to my beliefs and convictions, my opinions and real life stories.  I will thread each blog into an enormous book of stories with small, meaningful chapters. This is one chapter, a piece of the blanket.

There are layers and layers, it’s truly only not what you see.  Reach out.  Give a hug and a helping hand. Don’t ask what your friend caring for their parent needs, just drop off a homemade dinner or groceries.

Be kind, be good. Gain insight. Learn where to donate and how to truly support each other.

Thank you for reading this and staying connected, supporting me, it means alot.

I usually post a connective song, today I am posting something a bit different.  I asked my daughter if she may have a thought on a sing that would be condusive to the message I am sending, she gave me the below link.

Alicia Keys, her music has always ment so much to me, this interview and song has greatened my connection to her.  If you choose, start the video at 8:33, but the whole video is worth the watch.  The messages are incredibly moving.

Stay well my friends. Xo Jan

https://www.facebook.com/story.php?story_fbid=513517569200965&id=538649879867825

It’s true; and that’s how I write my blogs.

I have many good intentions to write a blog everyday, but squirrel moments invade my space.

So many “things” invade my linear line of thinking. I start my days with intention to complete tasks, like writting a blog, and it just never works out that way. It’s kinda funny.

I rarely follow rules anymore. Nothing harmful, I just came to the conclusion that rules were made to keep us from feeling the things we need to, so I choose the rules I will follow.

I write my blog entries on my phone.  Ha! I like the app and feel more connected with my words as opposed to a true keyboard.

I have written a list that has good blog ideas in it but have never written about any of them. Once I connect FULLY with a thought or idea, I just write that.  I’m sure I’ll get to the list one day.

I’m feeling pretty good today, no pain.  Dr. Gave me some meds to manage it.  My daughter came to my last visit.  I’ve not felt connected to my GP lately,  her random off handed comments made me want to punch her in the face, I’m glad my daughter came this time .

During the visit, the Dr asked me to highlight on the chart of the human body ( front and back ) of where the pain I was experiencing was……. Apparently I highlighted all the meridians on the body.  She finally believed me, and with a few “Clear” words from my daughter ( love her) I might ad.  , I’ll keep on the meds and hope they work…..seems ok so far.  More on this if anything changes in the weeks to come.

Oh yeah, it’s my brain misfiring pain signals.

Anyway…..  I’ve always been kinda random so things are not too much different; but things go random quicker now.

Lately, my daughter pointed out changes in our conversations.  We’ll be talking and out of no where I’m on to another subject with absolutely no connective substance.  Like we are talking about , say, cooking chicken, then in the middle of it I am telling her my vacuum broke.

She laughed at me and said, ” Mumma, you only said all the things in your head to yourself, you gotta say them to me too!  I can’t follow you!  Hahahah!  “.   We made a pact to try to keep me focused, and saying all the things. Lol.  It was beautiful that she told me that.

Finding the beauty in this disease is not entirely easy, but there is beauty.  The simplicity that fills my life now is quite beautiful.

I am rarely dragged down by so many of the things others are…… The thoughts on all things are fleeting.  Except love.  That stays with me always. Never fleeting.

It’s clear to me that my life has changed since finding out exactly what’s going on in my brain.  But honestly, my life has changed in a way many or most of you, the readers, would not expect.

Successfully, perhaps oddly,  I have written two blogs simultaneously.  The content of the  next entry will follow on the heals of the thoughts written here in, providing a clear insight to my life and the life of many others living with this disease.

My connections through peer to peer conversations has allowed me understand with great attunement just how misunderstood this disease is, and I will share my thoughts and opinions on that in my next blog.

I, as well as so many others are going to work toward changing the misconceptions associated with this disease, absolutely for the greater good. It’s going to be quite an adventure, I hope you choose to follow.

My fleeting thoughts have purpose and significance, they are relevant. I just have to maintain the realization they need to be written down or they will disappear.

In the real world, it’s never what you think it is.

Piece by piece, story by story. 

“The dog days are over “.  Definition: a period of inactivity or sluggishness…..

It’s my story, here comes the twist.

Stay well my friends xo Jan
https://youtu.be/iWOyfLBYtuU

Hey everyone!  It’s been just over 2 weeks since my last post, it’s been a pretty horrible 2  weeks for the most part, but as always, wonderful moments in the mix.

Last night, OMG. 

I’ve been dealing with this back and hip pain, I wrote about it a couple of times before.  I’ve been trying to manage it, but without any input and shoulder shrugs from doctors, as with so many things with this disease, I’ve been left alone to figure it out.

To be clear, VERY clear; even though you receive this terminal diagnosis, you are left to deal with it.  Sure my neurologist said this pain is caused by spinal/cerebral fluid but she neglected to tell me anything else…..like what to expect it how to handle the repercussions. 

So Google it is…..and peer support.

Anyway,  over the past few weeks things have gotten worse.  It exploded last night. 

I’ve spent a total of 9 days in the last two weeks unable to function properly.  Pressure, numbness and pain that has went from subtle to annoying to intense to last night’s excruciating nightmare.

Every nerve in my spine area, down through my arms, down my legs.  It just went BANG.  Systematically crawling down my body.  I couldn’t move. My body was burning up, my skin red in patches.  Bawled my eyes out.

My nurse at the Alzheimer’s Society reached out to my neurologist last week and she is yet to respond.  My GP, although initially helpful, just seems so disinterested.  I need a new Dr. 

I’ve looked things up this morning, I guess it’s a thing, a nerve thing.  I’m not a doctor, but my symptoms are text book.

Neuropathic Pain. Often caused by too much fluid and causes more damage and pain.  Lots of information available and the importance of the correct management both with medication and physio and massage.

I think back to my first real significant incident ( around March of last year) and trying to remember the feeling.  I know for sure it’s gotten worse progressively, more frequent and lasting hours more.  It’s aweful.

I guess that receptor (s) in my brain are now being effected.  I don’t have a cold or infection, no other organ in my body is in anyway ill or damaged,  but it is entirely possible it’s also inflammation or inflammatory response in my body to something in my brain. Now taking more of my natural inflammatory stuff.

My thought process is to find the inflammation. ( The source of all illness).  Drs want a spinal tap to measure the AB proteins.

Look.  I have EOA. I know I have AB plaques and proteins.  That’s a given.  Sticking a needle in my spine to take 1lt of fluid so you can measure the amounts will NOT help with my daily living.  Help me manage this.

In a strange way, my A-Typical diagnosis might just help carepartners manage their loved ones symptoms.

Since my form of this disease sort of works backwards; in other words, I experience with full cognitive awareness and communication the symptoms that ” normally” happen later at a time when a person with this disease cannot fully communicate the issue, I can.  It’s an odd sort of happiness.  I can hopefully provide insight but at the same time……well , you get the point.

I can communicate all the things, but still, there is little help.  I can manage taking pain medication and know when I need to take it, but honestly, this whole thing is taking a toll.

I miss time spent with my family. 

I can only hope that I get this to be more manageable; that I’m able to find a new routine, exercise and whatever else I need to keep me living well.  I am doing the best I can for me, trying so hard to keep my life normal in-between these setbacks, it’s tough. 

I’m resilient though.  I’m not a martyr. I don’t give up, never have.  I’ll keep you periodically updated on how I’m doing with this.  Thanks for listening.

Segue…..

I’ve been eating more regularly.  That is to say, I still don’t eat normally, I just don’t get hunger signals like hunger pains, also my brain doesn’t tell my body to eat, but I’m doing better.  I’ve set Google Mini to remind me to eat, it’s helping.

My daughter has contacted VON to arrange food drop offs and in home check ups to make sure I’m eating.  That starts next week I think.  I love her.

In a few months, I’ll be moving in with my daughter and her family.  It will be so nice to have daily company.  I’ve lived alone for almost 20 years.  ( wow! That’s a long time lol.) If I had not had this disease, I would have certainly waited another 15 years or more to accept an invitation to live with my family, but now, I am eager to be with them.

I did a photo shoot with a group of kids and my eldest grandchildren the other day ( a wellness day needing time away from this illness).  It was wonderful!  I’ll be finishing the photos for the client today ( so long as I can manage my symptoms well).  I hope they like them!

Health does not always come from medicine. Most of the time it comes from peace of mind, peace in the heart, peace in the soul. It comes from laughter and love.

I do all I can, quite successfully, to integrate all those beautiful things in my life, no matter the circumstance.  The uncomfortable moments of living with this disease are eased greatly with this beauty.

Remember to leave the light on for your loved ones and friends.  Answer when they call and open the door when they stop by.  When someone needs to talk, be there, listen , really listen.  Disease and illness of all kind changes lives, no matter if you are the diagnosed or the loved one.

Sometimes you just need to talk
about it – not to get sympathy or help, but just to kill its power by allowing the truth of things to hit the air. 

Stay well my friends xo Jan
https://youtu.be/nqnkBdExjws

Well, the TV and radio spot are done.  It actually went well!  ……  Much to my surprise.

I was quite certain I’d freeze, but I didn’t, not outwardly anyway.  It is airing this Monday coming, so I’ll post a link for you to view and listen once I have it if you’d like to hear it.

There was a specific question I was asked, ” how does EOA affect your daily life?, What has changed?”

I did not answer that question fully.  It scared me to death actually. I froze secretly. I’m not sure who noticed.

Each time I write a blog, I write about the things in my life that are happening in the present.  I have actually never put together all the things.

In the moment he asked me, I paused and ALL THE THINGS I cannot do entered my head all at once.  I had to pause, filter it and answer with whatever my brain left in the forefront. 

I spoke about eating.

I spoke about my brain not telling me that I’m hungry.

What I wanted to add was the magnitude that 55 years of living with the habit of eating 3 basic meals a day is no longer part of my life. It’s gone.  Not just the point of eating, but the need, the act, the habit, the action and the craving. Honestly, that’s pretty huge.

And there are so many other things too.  Habits , rituals, daily living skills, learned skills, it’s a pretty big list…..not to mention body functions and abilities.

So. I’ve decided to put together a list.

Eating. Math. Penmanship. Driving. TaskCompletion. Task Initiative’s. Walking/Gait.  Daily Hygiene. Cooking. Laundry. Sleep. Planning. Speech. Organization. Visual Interpretation. Recognition of objects and faces. Short term Memory. Time Span /Lapse. Mobility. Small Motor Skills.  Decision Making. Spacial awareness. Dark.Light. Colour. Smell. Taste. Timing. Clutter. Lists. Nose Running. Bathroom Urgency. Coldness. Muscle Atrophy/Loss. Pain. Weight-loss. Attention Span. …and so much more.

That’s quite a list.

I’ve stopped doing so many things as my small motor functions deminish.  Things even like opening cans with a can opener.  I don’t buy cans of anything now.

I don’t plan; I don’t make a mess so I don’t have to clean as much, I actually don’t use my whole apartment, I use a small focused area of it; my inability to complete tasks or jump from one to another has me exhausted running around like a squirrel from nut hole to nut hole, I do small things.

Time is irrelevant. My handwriting is aweful; and I loved my penmanship, like REALLY loved it.  So big, flowy, artistic.  Now it’s horrible.  Totally sucks.

I pause when I chat. Can’t walk more than a city block without pain. That cramps my style.

But listen.  Even though this list grows long, it is NOT my focus.  Absolutely not.

That’s probably why I’ve never written a list before.  It’s not that important.

Throughout life, anyone’s life, skill sets fall off. Mine, and those living with EOA are accelerated.

For me, it’s like inside my head it’s no big deal. It’s wierd.

I do not focus on that shit.  I honestly do my best to recognize either that is no longer a skill I have or , unknowingly to me, my body just compensates in other ways and I develop the secondary nessasary skills as a work around. I segue, in a manner of speaking. My brain is still helping me. It’s amazing.

There is a vacant spot in my heart regarding all of this and more.  But I endure.  I don’t look too much for answers to questions I cannot receive, I just let it be.  I live, I love, I accomplish and remain free of what is interpreted as a burden.  It’s a choice. It is freedom.

To the Warriors of this life, ( you know who you are xo) I stand with you, united and connected. keep on keeping on!

I’m happy with never writting another list.  I’ll just keep things in the present and let you know what is happening in the now. It makes for better stories.

My daughter was amazing during her portion of the interview.  My heart broke completely though.

Seeing her hold back tears and a trembling voice as she discussed my diagnosis, what it meant to her personally, how it’s changed our family and what the future holds, was extremely hard.

I didn’t want to say anything to her. I didn’t want her to have to stay in that moment for a second longer.  That is for another day. 

I love her with all my heart.

Stay well my friends, xo Jan. 
https://youtu.be/pCiYoBoyUYU

I had a dream the other night. A woman I was familiar with was in the dream. She was holding yellow flowers standing in a beautiful garden filled with warm sunshine and wildflowers. She said to me, ” I’m in the flowers, but I won’t be here long.” She was smiling, she looked wonderful, healthy and very happy.

I attend the Day Program at the Alzheimer’s Society once a week.  I chose rather early to attend, I suppose, in the big picture.

When I asked to be a part of this program, Rose, the nurse at the Society, had asked several times if I was “sure”. I always said yes.

You see, all of the guests at this program are in various stages of this disease; Rose, lovingly and professionally,  was concerned for my well being in seeing first hand the inevitable changes that would occur in my life, perhaps seeing these changes first hand  too soon.

I assured her that this was part of the journey, my personal journey,  I wanted to take.

There are times I cannot attend due to my overall wellness, mostly due to my burning back issues, but I was there yesterday.

When I arrived, I went in to chat with Rose and firm up the details of the Friday interview with the radio, now there is a TV spot.  More on that later.

We chatted about my A-Typical diagnosis, she knew exactly what that was, I was happy to hear that.

Rose walked me to the Day Program area and gave me a hug.

After my usual hugs and hi’s within the group , I sat down.  I scanned the room looking.  I chatted a bit, and listened to the general chatter. Then I looked over the room again. She wasn’t there.

I went and sat with one of the employee’s, Deb.  I asked her where the woman I was looking for was. I told her about my dream.

Deb said this lovely woman, her family had made the hard choice to move her to a long care facility,  a facility with the word “garden” in its name. Deb was speechless.

I was so sad right at that moment, immensely sad.

Although that feeling lingures, I am still at peace with my journey.  I will still attend the weekly opportunities to be with my friends. I am grateful to know each wonderful human being there.

Segue….

My son in law LOVES food.

On Friday, after the tv and radio spot my daughter and I are going grocery shopping. I promised I would cook for my son in law. Lol. He’s excited!

I’m making Morrocan Tagine, a great plant based dish.  Also, cauliflower wings as a starter, they taste awesome. 

I’ll also prepare a very hearty salad that my son in law loves…..no lettuce involved.

I switched my diet to plant based ( mostly, but I still love butter , yogurt, and cream in my coffee, Haven’t found a suitable substitute yet) and my daughter’s family is moving to the same type of menu. 

Can’t wait!  Greatness with family.

Have a happy day everyone, spend time with those you love. I hope you introduce yourself to a stranger, you never know how impactful YOU will be to their lives, or them to yours.

Enjoy all the moments of greatness.

Be good and kind. 

Happy listening, stay well my friends. Xo Jan

https://youtu.be/Jl5vi9ir49g

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/