I was at a luncheon with a group of people today and it reminded me I had written this a few weeks ago. It’s funny that I forgot about it but extremely happy it was “reminded” to me. ( All the gramatical errors in one sweet sentence, lol)

Alzheimer’s gives you the power, let’s say,  to stay in the present, it’s what you might call “mainstream”, in a manner if speaking. Our impulses keep us, at least in the earlier stages, present.  Our regrets fitter away, our thoughts of “what if” or “I should have” no longer hold us emotionally embedded to our past. In the big picture, that’s pretty damn awesome!

In today’s mental health movement, as well as physical health movement, that is what we, humans,  strive for.  To release the hold your past has on you so you can grow and flourish, so you can reach your goals, surpass negativity and self doubt. You can self advocate for a stronger self. To forgive fully of yourself and others. Powerful and proven. If you have the courage to empower yourself to release the fears & emotions that lock you in a place  that you no longer need, do it. Be brave. Love yourself enough to be happy.

Alzheimer’s, as well as many other forms of dementia, forces your hand.  We are in the present, sometimes only moment by moment, unintentionally.  Our past in many forms has never existed. We are in the present experiencing the here and now.

At this point of my journey, I stay in the day or recent days. I no longer actively think of what happened yesterday, during the week or even last month, it just doesn’t come in to play; but it’s still there. Subtle things will remind me of the adventures I’ve had, but I don’t concentrate or consciously think of them.  I remember them when I am asked about them, but not consciously.  It’s odd.

Being fully aware that days past and your life is a conscious thing; it’s just there, in your mind tucked just behind. For me, the door closes, unlocked, leaving the days available to retrieve and remember, but only when asked. It’s kind of surreal.  I’m not sure how long this will last, or when it started happening, but I’m ever so grateful. I would like to think it’s a super power of some kind. Lol!  Living with no regret. Unburden. Amazing!

Realizing this pattern was a big thing for me. It seems I have alot of epiphany moments,  with many things,  realizing that I don’t even know the things I’m forgetting until someone reminds me about a time and place or situation.  I don’t always recall it,  I laugh out loud and always ask for the story. Totally makes my day!

Staying in the present is a healthy action for everyone. You love more, you see more, you feel more, you actually do see the little things. Gratitude grows, and you learn how to truly be thankful. 

Take the time to live in these moments, it’s good for you.  Ill health can compound your inability to care for yourself, the one person you sometimes forget to unconditionally love and treat well. We’ve all been there.

For those reading this as carepartner s for your loved ones, try to understand how the present is perceived by your family member.  Acknowledge that the moment is real and time is no longer equal to your experiences. Stay present and remain patient. 

For those reading this who live with the many forms of dementia, I send you my love and encouragement. You are acommplishing big things every day.

Here are a few things I’ve found to be important:

1. Not everyone will understand your journey. Stay true to yourself and follow your own path regardless.

2. Embrace the idea of missing out. You can’t do everything at the same time, so focus on those few things that matter to you the most, one thing at a time.

3. Life is a running river whose route can’t be predicted. Learn to flow with it and let it take you to interesting new places.

4. The world is to a great extent a reflection of your mind. The more you understand yourself, the more you’ll be able to understand your world.

5. Possessions can end up possessing you. Emotionally detach yourself from them to regain your peace of mind.

6.  Health is your real wealth. Pay attention to your needs and do your best to serve them.

7. Wishful thinking is a waste of time.

8.  Don’t believe what anyone tells you. Do your own research to find out the truth for yourself.

9.  Perfection is like the horizon: the more you try to approach it, the further away it recedes.

10. Don’t try to force change upon others. Rather, inspire them to change by your actions.

11. The past is gone, the future isn’t here yet, and the only moment you ever have is the now.

12. You are what you eat. Eat plenty of whole, organic, plant-based foods.

13. Play as much as you can. It will help you reconnect with your inner child and rediscover the incredible joy of laughter.

14. Concentrate on depth, not width. What matters isn’t how many things you do, but how deep you go into them.

15.  Happiness doesn’t mean having no problems. It means having the skills to effectively deal with them.

Just a few things I’ve been pondering, a few things I read. Hope they inspire you, especially if you are caught up with life. Perspective.

This life, although different from anything we ever expected is great. Follow your heart and capture your dreams. Keep your attitude sassy and smart. Improve your argument, don’t raise your voice. Educate yourself and those that are willing to listen, but don’t waste time trying to do so with those who cannot see the bigger picture of your substantial life. SASSAFRAS!

What if one day you go to read this bloggy thing and it makes no sense. 

It could happen

What if one day you read this bloggy thing and you say, ” what the hell is she talking about?”.

That could happen.

Funny isn’t it?  Just a random thought I had. Wanted to share it .

Maybe I should call myself Jan-Random-Bar-Berrra.  It’s catchy.

That,  too, could happen.  

Hahaha! Hope your day is fun!…… And random.

Here is a great song by Joss Stone, enjoy!

Stay well my friends, Jan

In the end, only some things matter. How much you loved, how graceful you lived and how finely you let go of the things that don’t matter. These things are important.

As we struggle to conquer our ever-changing minds and habits, our focus can often move in a direction of self sabotage.  When focusing on what can no longer be done in the ” usual” way, we take away from the amazing accomplishments we make every day.  Staying focused on what is, instead of what was, is vital.

It’s the small habits, how you chat with yourself, who has access to you and who you share your energy with; how you spend your mornings, what music you listen to, the books you read and what you eat, that is what allows you to stay whole.  Making good choices to remain healthy both in body and mind will free you to love yourself and your accomplishments, and as well, adjust with greater ease to the ongoing changes.

Today I declared it ” National Stay in Bed, Read , Sleep & Do Whatever Day” .  I hope it catches on lol. It seems legit and should be in the lineup of holidays.  Tell others.  It can become a thing.

In the theme of continued inspiration, learn to be ok with people not knowing your side of the story, you have absolutely nothing to prove to anyone.  I know so many of us struggle with friends and family ( even doctor’s) not understanding or believing our diagnosis. ” you are so capable”, “you are too  young to have this” ” you don’t look like you have dementia”……..arrrgh!  I’m 54, I look like I did 10 years ago. I take care of myself, I eat well, I paint and revamp all sorts of furniture to resell, I photograph, I do all the “things” . But my life is complexed in ways not even my family sees.

I get frustrated at the new ways I have to accomplish even simple tasks.  The “knowing” of changes can make my days stop in its tracks; I just can’t move forward, for hours sometimes. I can see where the task path should go, but the path remains broken often for days. My house is a mess right now. No one sees me like this, I’m not ready to show it. Thus, my family thinking I am so capable, that is a horrible mask I wear.

Don’t get me wrong, I am in most areas, but there are things ………  Huge things I find unbearable.  I can’t always talk about them, if ever.

There is a big change coming in my life in the next few months, I am terrified.  I am trying to find ways to cope early so I won’t be overwhelmed. My efforts to do this are not  working the way I had hoped.  Self preservation of mind and body will be key for me. Coping with big  change while dealing with day to day change can be debilitating, I am doing my best to free myself from the angst. It’s hard.  I’ll work it out, I’m certain, but in the mean time…….

I try to keep reminding myself that everything that weighs me down is not mine to carry.  I hope that means something to each of you, letting go of those things might just clear up all the junk mail I have in my head, perhaps for you too.

I have always been a happy person, though circumstance has often zapped the happiness right out of me and I go into fight or flight, self saving mode.  I have fought, I have walked away, whichever gave me the most strength, at that time,  I chose what was best, not easiest.

I choose to be healthy, relaxed and living well. I’m doing my best, just as I know all of you are doing your best.

There are many people in my on line family, I read their blogs and I read their posts.  My heart stays steeled with each written word. We are connected, even though never having met. It’s a happy feeling. Faith.

All over the world, people connect with similar stories and life events, tragedy and overcoming odds.  It’s magical.  Real people with real lives just trying to get through, change lives and just make things better.  We are not the news, we are real humans baring our souls with real life things. No matter the subject, no matter the reason, we all need to support the lives of those we love. Encouragement.

I derive inspiration from each of the human stories I read.  You keep me going. Xo

When I was first diagnosed, I limited my life. I limited it to one year of living.

I approached my family and told them that over the course of the next year I was going to accomplish many things I had put off. Then, I would take my own life.  I expressed that I will not live not knowing I am alive.  I refuse to live not knowing I am living, and choose not to be a burden, financially, emotionally or in any other way to my family.

The latter, I am still on board with. BUT. I will remain living longer than that year .

I have found ways to ease my life. To grow and remain relevant to myself.  I encourage myself through laughter and happiness.  I am choosing what is best.  Focusing on life as I know it not what it once was……. for even if you don’t live with this disease, life changes in leaps and bounds. It’s just life. Equal to.

I have lost many connections during the course of these choices, I’m ok with that.  As I said above, it’s ok to be ok with people not knowing ( or understanding) my side of the story.  In the big picture, perhaps I kept you (them) in my heart for too many years hoping for all the right things, that, sadly,  turned out to be the wrong things. I wish you all well.

……I just read back on this entry, some of it seems so dark and sad.  That was not my intention.  I hope you are able to read between the lines and see inspired messages. 

I’m gonna attempt tidying up my house, but after a nap of course.  I’ll get it done!

” By the power of Greyskull!”   Hahahah!  I’ll just yell that to get me motivated.  

So I’m gonna keep going, and I hope you will to. We didn’t come this far to stop now. Peace.

Here is a good song.

Xo

Stay well my friends ❤️ , Jan

Days now can be so complexed. My soul stands true with yours.

I live alone.  I love it, but I’m not gonna lie, it can be hard.  Depending on someone ( myself) who’s actions, although reasonable but often not patterned,  is daunting.  I can laugh with myself alot, but it gets old some days quicker than others. But I still laugh, often loud lol!

Being so young, that is hard. 

For those of you reading this who do not have EOAD, there are millions of us.  Statistically, however, we only make up 5 percent of those living with Alzheimer’s.

We are the friends you have lunch with, the friends you vacation with, and your friends in your neighborhood, your coworkers, young mothers and fathers, we are your brother’s and sisters.  In some cases, we are the friends you have forgotten.  ( Jagged little pill right there)

We live with so much more than memory loss, it’s not all about memory.

For most of us, at first it was that uneasy, innate knowledge of knowing something just isn’t right.  Moving forward, combine this with physical pain, worry, bouts of anxiety……some have never been able to rid themselves of that anxiety, it is now part of everyday living for so many. So much more than memory.

It’s new routines.  The dreaded new routines.  Our brains have rewired themselves for years without us knowing. But now we know.  Now we understand why we do were doing things differently.  The knowing “why” is always bashing at our hearts. Imaging having that knowledge and trying to be ok with it. ( And when I say things I mean,  a plethora of things). We change our lives daily. Everyday in every aspect. Daunting.

It’s social behaviors. I myself was quite social.  I loved meeting new people, staying in touch with my old friends.  During my search for answers, I slowly pulled back, dropped out in a manner of speaking.  Many of us hate, can no longer deal with,  the simple act of grocery shopping.  The last 5 years of my career I audited all the major grocery, drug and big box store chains here. Now, I cringe at the thought of the lights, noise , high ceilings and ever-changing shelves. But I need to grocery shop.

Forcing “a place for everything”. Habits.  Arrrgh!  If I have to create one more “habit”  I’m gonna scream!  On the flip side, if I can’t find my keys one more time, I’m gonna scream! It’s a strange balance.

Pain.  This is something Drs never let you know about.

Getting ready to go out.  Are you kidding me? What in hells name has this become?  It’s like pulling the wings off a fly and throwing it in the air to see what it will do.  It takes me HOURS! And once I’m ready, I’m exhausted. I don’t want to go ANYWHERE. 

I’m glad I live alone during these events.  I need to take my time, not be rushed.  Let me tell you how this goes……
I do my makeup in sections of time, hair & clothing  too.
I cannot stand in the bathroom getting ready, I need to wash my face, clean the windows, put cream on my face,  have a tea, put on  foundation,  make my bed, sit and read, put on eyeliner, fold my clothes, wash my dishes, change my mind,  put on mascara, read my emails, put on lipstick and tie my hair up, choose clothes, lay down, find socks and choose shoes, call my daughter, check the weather, change my mind, put on perfume, video chat with my mum, vacuum, get dressed, change my mind, sit down and do nothing, look at the time, wonder where it went, find my goddam keys,………….  Be on time. 

Sometimes I just wanna say, I’m late. I sat staring at the wall for 39 minutes, in a towel.

Change after change, symptom after symptom. Every. Day. Living.

If you sit back and think of all your loved one does JUST to spend a day with you, you would be humbled.  Humble yourself.

To all my Warrior friends.  I got you!  I stand with you through our young ages.  A great friend of mine often says, Together we are stronger.  We are. Strong, capable, loving, living human beings dealing with unimaginable change.  We accomplish, we succeed, we endure.

My life is crazy sometimes.  I still love it.  I don’t kick myself for the craziness, I embrace it the best ways I can.

Some days are best spent in bed. I love my bed.  Make sure you have a comfy bed with lots of pillows to choose from,  big fluffy blankies and weighted blankies. Sometimes you just need a hug and when you live alone, heavy blankies add comfort and security.

Being so young and living with a disease of such magnitude, a disease not one professional truly understands, can be overwhelming. Is overwhelming. 

Our experiences are painted together through each others stories. We rely on our ability to connect through in person events and most assuredly, our on line families.  Virtual campfires. ( Dubbed by my online family ❤️)

Staying connected is not always easy, but do your best. It’s important.  Share your stories and reach out to others struggling in their day. Send love and kindness and reap the warmth given by others.

On those days that this takes so much out of you and all you did was hold yourself together, I am so proud of you.

Please listen to the song below. From me to you. With lots of love. Xo

https://youtu.be/5LWpw3CMCEg

Stay well my friends!  Jan

That title comes from a line in a Beatles song.

When I was a kid, we called sweaters “jumpers”.  I love that phrase! Wearing my jumper keeps me warm, in a good headspace.

Today’s bloggy thing has obviously started out randomly, ha!  It’s a funny way, I guess, to get to my idea. Let’s see what path it takes shall we?

I’ve been sick with some crazy cold bug for the last few days, annoying.  My cough sounds like a Canadian goose. Honk Honk!

I have worn my a jumper for all these days. It’s like comfort food for the body.

I was on a video chat with some Warriors today, and let everyone know I would be periodically taking off audio so they didn’t have to hear me honk.

Wellness, in my opinion, is our own responsibility. No matter the diagnosis, it is our own ultimate responsibility. Whether a cold or fatal diagnosis, it makes no difference.

Drs are there for many things, so are family. Advise on wellness and good living is always in the air. 

I know sometimes it’s just so overwhelming to have a constant barrage of ” good doers” & “well wishers” all wrapped up tightly in a bow labeled ” they are only trying to help”
But honestly, if you could translate that into ” this is how much I love you, care for you” , advise on wellness and good health would be an easier pill to swallow.

It’s always perspective.

Being mad about this diagnosis is natural. It totally bites large ass. We are told we have this then sent home whilst being told ” get your affairs in order”.  Brutal.

I am still, however, responsible for my wellbeing.  I am the only one who could ever hold me back.

Taking the initiative to improve my wellbeing is a powerful thing. Listening to advise, I do it,  but in the end, it’s all me.

It’s the same as any decision you make in life. The key to any success is to ACTUALLY MAKE the decision and FOLLOW through.

New year’s resolutions, total different story. I stopped making them like 25yrs ago.  Each time I would make one, I never followed through, made me feel bad about myself, so I stopped.  I eventually navigated to each of those resolutions, but only in my own time, not in one crazy day of the year. Self awareness and forgiveness. Healing.

Whether it’s small mini steps once a day, or once a week, no matter! 

I have taken to making homemade soup. I love soup.  Nutritionally sound. Easy to make. Tastes spectacular.

Having the courage and knowledge that you really do deserve to live well is often hard to grasp, but let me tell you, you deserve it.

Staying well and in good spirits allows you to strive through all the bad.  If you are not healthy enough to understand yourself and circumstances; your health or your state of mind, this can change everything.

Wellness is big. It comes in many forms. I listen to music; the kind music that reaches my soul. I constantly heal my soul.

I stay away from red meats and canned fish. Small things. Moderation for everything else therefore never depriving myself of the foods I love. Healthy from the inside. 

Exercise, I walk.  I also have this spinny thing that I can stand on and twist ( keeps me slim and my belly loves it).  I look at the 5lb weights I have sitting by my bed…..I’ll get to you, one day…….maybe. probably not.

Vitamins, I take all the B’s, 1000mg of vitamin C everyday, its a great antioxidant, works great on your skin, blood, arteries and brain.

We have to stay well.  Make the desicion to be good to yourself. Wear your jumper.

“I am he as you are he as you are me and we are all together” 

Some days I am the egg man, others days I am the walrus, “goo goo ja goob”!

Stay well my friends!  Jan

https://www.facebook.com/Love-You-Lots-Like-Jelley-Tots-104623814327320/

Stay well my friends! Jan

The Gravity is pulling me down…
Down, down toward the bones of Earth
deep beneath my feet;
it is beginning.

Damp, cold and looming,  it swells and envelops me;
Invisible weights in the air heavy on my body;
My Ego, my centre self, gone,  dropped…..
I  become part of the fog;

Heavy and forceful, I enter the fog and it enters me;
It is lingering and exhausting; I am scared;
I am drawn into it’s depths like a rock to the ocean floor;

It’s relentless waves….sinking and rolling; pushing me side to side;
It wraps me in its dreary crests; I am scared again;
It pulls me down deeper; it is my pitch black abyss.

Fusing into one entity, I am no longer me,
I am the fog, I float within myself;
There is nothing more, nothing less, we are one….
One feeling, one way, one being.

Within the fog, time moves, although I am not aware of the hours, it is irrelevant,
Do not move….do not worry…do not think, just be;

I cannot open my eyes, it is too surreal….
keep still, stay in the nothingness;

In the hypnotic….I release myself to its realm….
I calm myself from the pain, centre myself from the confusion; it is so difficult;

….just….stay…quiet…..

wait for the passing of the fog….

I dream……
I am enveloped by its illusion, although there is no sleep;
I breathe…..
through the rushing and angst I feel, big breaths;
I still……to escape floating away, although I remain forever motionless, steeled
I grieve…..the loss of so many things…..time, energy and life;
I reflect…. on the lonliness of these moments, although I see the beauty of my life;
I forgive…..to reach my soul, to calm my inner being, to save my mind;
I wait….in patience and fear; I cannot do anything else;

I emerge….  I separate,
I am filled only with me…… slowly.

Some days I don’t know if the sun has shone until 5pm…..
Each time I am gently pulled  back into this world, it is a beautiful day.

© LoveYouLotsLikeJellyTots2019

This still haunts me, this poem.  Everytime I read it, I am brought back to the moment I wrote it.  It remains a terrifying time.

When I was diagnosed earlier this year, my life changed quickly.  I had to set up my life for what I knew was coming.  It may not seem like a big desicion, everyone changes plans. True. But not everyone plans the next 5 years in one day. Only us.

When I was told by those two neurologists in 2017 that nothing was wrong, I worked to better my life status, to raise my income, net worth, self reliance.  I worked over 60 plus hours a week. I pushed away all the things I was feeling, found new ways to overcome all the shit, I was coping only because my brain rewired itself to do that…..I had no idea.

When my brain had reached its rewiring capacity, the overload switch tripped and it shut down.  That was when, as I said in a previous blog entry, I needed help.

Prior to the ” in black and white” diagnosis, I made plans to move closer to family.

I had asked for a transfer within my main job back to my original territory. I had just 10 months prior accepted a new position in a new city within that company: not possible, no transfer, quit that job. They had almost 2 months notice from me. The industry I was working within had tons of opportunity, I was not concerned. My skillset in the service industry was also another option, still not concerned.

My other job, a part-time job, I was able to transfer.  I called my daughter, told her how much I missed her and I want to move back, told her my plans. ( Still not diagnosis at this time) my daughter was happy I was moving back.

I asked to stay with her for a few months, spend time with my grandkids. It was no problem. She said, “mum, there’s lots of room”.  At that time, she my expecting my newest grandbaby.

I figured the downtime would get me back on track, I’d take days out for job interviews, no problem, things will work out , even -steven like always. 

Packing was a complete disaster. I just couldn’t do it. Not physically, but my mind and body wouldn’t connect. I was freaking out.  Time was moving quickly and with each passing day, I packed less or not at all.  What the hell was happening?!

Near the end, I just threw shit out.

During all this time, I worked my 60 plus hr weeks, altering my days to 12 or 14hr days; in this job I drove sometimes 700km a week and more, town to town auditing store after store. I had two incidences where my mind just vacuumed out, that  champagne effect I previously described.  I had no idea geographically where I was. Scared shitless.

I travelled back to my Drs which was  2 hours away while visiting my family at least 2wice a month for almost 2 months , had new tests run.

Quite organized on the outside, freaking out on the inside.  Something was still changing and it was undeniable. Still not diagnosed.

Then, Diagnosed. Moved back. Crashed physically and mentally within 2 weeks.  I can honestly say Alzheimer’s was still unknown to me. I had researched the disease but not yet associated the tell tale symptoms to me.

At first it was slow, the uneasiness.  I equated it with the busy few months I had.  I would just rest more. Warm blankies and rest. Denial.

I told my daughter I was feeling weird. I tried to describe but it was so hard.  I could see she was scared. She told me just yesterday that during that time she was just not ready to accept what was happening, it was too soon, it was too much. She couldnt understand the decline.  She had never seen me like this, I told her I hadn’t seen me like that either.

It is obvious to me yesterday my daughter knew what I was experiencing was the effects of this disease, she knew what was happening. I had not yet put it together.

I started staying in my room more. I wasn’t spending time with my grandkids. “Seriously, what the hell is happening to me?!”

But this thing, this feeling was looming in the back of my head more and more, getting stronger, lasting longer.  It was like I was on the edge of a hangover ever couple of days, then everyday . ( I don’t drink anymore, haven’t for years, just gave it up.  In the past 11 years, I have had 4 glasses of wine and a few beers. It’s never bothered me. I just let it flit away. It became irrelevant.)

Then one day BOOM. I was totally out of it. I was completely scared shitless now, not a little, A LOT. I kept searching my mind for previous events. Only a few I could think of that were similar,  but nothing like this.

In 2015 when I started my quest to find out what was wrong, one test showed I had signs if arteriosclerosis. Oh hell to the NO!

My doctor, of course, wanted to shove pills, beta blockers, cholesterol drugs and statins into me. Hell to the NO again!

I told her I’d research a natural was to handle it, she said there isn’t one. I called bullshit.

For almost four years I’ve taken a natural supplement, and it killed that disease, ate it away.  I strangely was getting better from all those pills and effects of those heart pills the other doctor gave me. Unknowingly, it has helped my brain too.

Looking back, all those times I ran out of it, I got that nagging feeling back, never knew what it was. 60 hrs a week can cause lots of exhaustive traits, it was probably that. None the less, I kept taking that supplement making sure I cleared my body up.

In January of this year I stopped taking it completely. Within 4 months I knew what Alzheimer’s had done to my brain. I wanted to kill myself and almost did.

I lived for a few weeks whirling and disabled. I couldn’t think, function, shower, eat, have a sensible conversation. I couldn’t sleep, I couldn’t laugh, I couldn’t live with any quality if life as I knew it. I cried every day, I was absolutely broken. I had no idea what was happening. Was it stress? Anxiety? ( F-b0mb right here) still not correlating Alzheimer’s to my symptoms.

In a moment of clarity, I realized what Alzheimer’s was doing to me. I realized that the many images of my brain I had seen were true. I realized what it was doing to me. I realized what so many others endure. I realized with great clarity where I am in this disease, what I was in store for me and how it was going to end. This is the truth.

I ran to my daughter and told her I need to go to the health store, I was crying. She took me.

Not a word of a lie, within 2 weeks, I was back to “normal”.

I wrote the above poem during the two weeks it took to feel better. When I read it, I am back to those moments.

I no longer have fogs. During that healing process, I did however have strange new things happen. My spine started burning. My ACTUAL spine. Inside.

It would get so intense that my daughter could actually pass her had inches above my back and spine and know exactly where it was burning it radiated so much.  My skin was never red or anything, no visible clues.

I asked my neurologists about it, I was told it was probably the effects from the cerebral fluid reacting in my body. She told me it is not common but not unheard of.

Over the 4 year time I took the natural supplement for something completely different, I kept this all at bay. The times I ran out of it, I had felt the beginnings of those  sensations often, (I put it off to all sorts of things)  I had always gotten another bottle never knowing I was helping  something I never knew I had. I never knew the impact it was having on disease I never  knew I had for 4 years.  I was keeping myself and my brain well, symptom free,  unknowingly.

I haven’t yet mentioned the name of this supplement because I feel I must say a few things.

Obviously, I am not a Doctor.  I can let you a few facts about my disease given to me by my neurologists and the progression though!

The years between MRI’s,  2015 & 2017, my brain died a whole bunch.  Between 2017 & 2019, my brain stopped atrophying, no size or volume change, only that small amount on the left temporal side. My first post says more about that.

Inflammation is the source of all illness. 2015 till now, not one doctor has searched for the source of inflammation in me even though I’ve asked over and over again.

I researched for arteriosclerosis (it’s an inflammatory response disease, imagine that)  natural healing and rabbitholed to Serrapeptase. That is what I take.

I am not promoting this supplement. I can definitely say it has changed my life and the course of my disease. I am not saying it will work for you. I remain hopeful.

I can say the one other person I know taking it has improved her quality of life with this disease. ( She was the only person with this disease I told about it in detail). I can also say that earlier this week my daughter read a post in the caregivers page she is on and there was a daughter in there saying she independently put her mother on it and her mother has improved immensely.

I can also say that my neurologist, one of Canada’s leading doctors, top in this  field,  took serious note of this supplement in my last visit asking her internist to research it for possible protocol.

If stopping/slowing the inflammation associated with disease will allow me quality if life, I choose to have that life. If it is possible to delay this disease, I will do it.

Remember, I am secretly trying to stop it. ( Previous blog entry)

I am setting links below to important information. I want to make it easy for anyone to get to.  There is lots of info out there.

DO YOUR RESEARCH! Don’t rely on my statements although everything I said I have experienced is true.

My choice is NOT your choice.

I do however want you , and me, to have as many choices as possible. This is one choice or possibly.

Side note: I had to call my daughter to ask how to spell bomb ( f-b0mb). That, to date, is my first spelling thing.

Stay well my friends. Jan

https://www.ncbi.nlm.nih.gov/m/pubmed/23821590/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5790697/

https://www.ncbi.nlm.nih.gov/m/pubmed/19943340/?i=6&from=/19388344/related

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/

https://www.sciencedirect.com/science/article/pii/S181808761630160X

https://www.researchgate.net/publication/267323885_MIRACLE_ENZYMES_SERRAPEPTASE_AND_NATTOKINASE_MITIGATE_NEUROINFLAMMATION_AND_APOPTOSIS_ASSOCIATED_WITH_ALZHEIMER’S_DISEASE_IN_EXPERIMENTAL_MODEL

https://nattokinasehearthealth.com/633/serrapeptase-and-brain-health/
( This one is good article but it promotes a specific brand, I am not promoting that brand, it’s just an article)

Since being diagnosed, I have wondered, ” how can I use my voice to help change the stigma associated with EOAD? How can I make the world see it’s not what they know?”

It’s a question I ask myself over and over. EVERY.SINGLE.DAY.

My diagnosis has never only been about me, ever. It’s about my family. It is, to me,  about perspective and how I apply that perspective.

As I had said previously, I move through this new life with a peaceful heart.  Now having said that, it’s not that I don’t  hate having this, I absolutely do. It’s total bullshit and I just don’t want it.

In the big picture, I can only prolong the progression ( although I secretly hope to stop this bastard in its tracks, honestly.) Perspective.

I know there is the distinct possibility I will live for a time not knowing I am existing. That is perspective. (In later blog entries I will share my personal views on that subject).  But right now, here, in this moment, I am present.

My family means everything to me. My daughter’s warm smile,  my son in laws ever present thinking on where his role in the future care of this ENTIRE family, my grandchildren’s hugs and giggles,  my mother’s unwavering encouragement, and from all of them, so much love and support.  I am truly grateful and blessed. Perspective.

Today my daughter let me know she had posted links to this blog in a group she belongs to, it’s for caregivers.

A response from an obvious loving husband was posted to her.  He said stated in his response that his wife has EOAD and she doesn’t talk about how she feels. That literally broke my heart.

I will never know and would never ask why, but my mind was whiling with all the possible reasons why she may not talk about how she feels. I was completely overwhelmed, still am.

Disease in any form is hard to fathom. Breakthroughs have offered so much hope for rebuilding lives;  Stigmas have shattered lives.

Way back when; or if you choose, back in the day, the simple everyday subjects we chat about today ( menopause, menstrual cycles, erectile dysfunction, colon cancer, gay marriage, breast cancer, thousands and thousands of subjects) were, as you know, kept quiet.  ” This is not something we talk about”.  “Keep it in the family”.

Dementia, and it’s many forms that make the dementia umbrella, in my opinion, still live within “back in the day”.

If the statistics state over and over, study after study, year after year that the proportions of this disease are growing and the statics are now at ONE in THREE …..THat my friends is epidemic.

I do understand that many people just simply don’t want to talk, I also understand that many do not know how to express what they feel and are what they going through. I don’t judge. I have always been, outspoken?  Hahah ha! Animated is more like it!  Not always to my benefit, but outspoken and (sometimes overly) animated. Cartoon like if you will .  For example, I tell a story from beginning to end with my whole body, arms ‘n all, sad or happy story, I’m animated.

I remain wrapped in a loving life, both of my own making and of my family’s making.  I have always been “chatty” ( thus this blog) but not always able throughout my life to express how I feel, shutting down at times.

I shut down for 4 years. All those years trying to figure out what was wrong. My conversations had nothing but surface answers, unanimated reactions, seclusion, hyperfocused on trivial things, meaningless stuff. I was no longer real. I was not communicating, not doing all the thing I loved so much, I was an unknown person to those that I love so much and to myself, It was horrible.

Things changed, and now I’m here. My diagnosis brought me back. Strange but true.

I have since joined a few organizations that allow me, through either candid response or ( most excitingly) weekly video chats with people  just like me. THe WARriors I spoke about the other day. These connections have improved the lives of all who attend. ( It’s not an everyday “you must attend” thing, you log on when you can.)

Having the ability to chat with people who share all the same stuff as you do is tremendous!  Just to let it out and know someone truly, truly and really gets it, it helps so much.  Relying on the fact that all your scary secrets can be revealed, and no one will bat an eye. ( Although there could be a burst of laughter cause some times the things I say are way way WAAaaaY out there)  I am immensely grateful for the connection. Perspective.

I hope that entry this reaches that loving husband that responded to my daughter.  ( As well as so many others ) I want him to please let his wife know that all of us, The WARriors ( defined as all of us with this disease) are here if she ever wants to talk, just listen, cry, needs encouragement or perhaps just a smile, there is never any pressure to share a thing. Sending lots of love.

I’ll do my best to attach links below either today or within another bloggy note.

Care partners are essential to living well, but it’s a difficult thing to do for so many reasons.  I will chat about that in another entry for sure.

Changing the current perspective on this disease is vital.  It’s is a global event, this dementia.  The box does not have to be stepped out of, the damn box needs to be broken.  Perspective. 

A simple smile is often all it takes. It can change someone’s perspective on an entire day, it can change lives.

Stay well my friends, Jan

Here is a reality check for you. Say you are sitting with 2 of your friends having lunch. One of you will get dementia. Those the current statistics. MIND BLOWN. boom.

Just wanted to make that clear before we move on.

My days can be somewhat crazy; not always, but when they are…..( insert handsome 60 something guy holding a beer here meme hahah).

Here is an example of one of those days:

Woke up, went pee. Made coffee , started writing. When I was hungry ( dosent happen that often) I went to make a sandwich. I wanted green onions in it so I grabbed scissors to cut the onions, next thing I knew I was cutting foam with those same scissors to insulate around my door, no idea how I got from one task to another.  No sandwich was made. Went back to the kitchen. There was the partially completed sandwich sitting on the counter.  I just starred at it.  So I washed my face then made my bed. Got dressed and popped over to the store. Came home and noticed the sandwich. I made soup from scratch instead and ate that.

I know, I know; those of you who do not have this are saying, ” shit! That’s my everyday!”. Believe me , it’s not.

There is an underlying knowledge each and every moment that what is happening is not right, but not being able to understand what it is.

I can attest to that at this stage in my progression.  It’s an eerie feeling.

There is no segue left in my routine anymore. No fluid movement completing tasks, only strange ways of ending up doing many things randomly.  It’s funny and scary at the same  time.

Don’t get me wrong, tasks are completed, but not in the same way as I would normally or previously have been done.

I am absolutely not complaining, it really makes me giggle!  Telling my daughter these things, ha! She always says, ” Mum, what ever works !” and we have a good laugh.

In the media, Alzheimer’s is viewed as a person of significant age, in a chair, perhaps sleeping all day, a person who can’t remember who you are. But there is so much more.

I live independently, I am a photographer, a chef, a professional, an artist.

When I posted on FB I had this disease, I realized just how uncomfortable it made people feel.  In the big picture, all disease make people uncomfortable.  Homelessness makes people look at those struggling in their lives as sub-human. Makes me sad. The stigma.

It’s often been said that if you believe all the media says……..   It’s true for Alzheimer’s too.

Those of us living healthy and full lives are living proof that airbrushed news reports exist. Not one news story about just how strong and powerful our lives are. I am hoping to change that, so are the many people who I now know living with all types of dementia.

Short term memory, yup, it’s an issue. Sometimes I don’t know what a did 2 minutes ago, retrace, retrace. BLANK. So what?  Lol. Someone had referred to it once as calling it “a champagne moment”.  Picture opening a bottle of bubbly, the rush of it leaving the bottle flying into the air. Gone. Those ounces  never to be enjoyed. Poof!

Physical symptoms too can be debilitating, I’ve had to use crutches in occasion just to take a walk. A big thank you to my son in law right here, love you xo.

What I’m getting at is, living with dementia is a combination of so many things, including task orientation (and it can be daunting.) Knowing you want to do something, but your body just says NOPE.  Days later….. easy as pie!

The men and women that I have met over the course of the last few months are strong, intellectual powerful human beings. Scientists, Drs,  IT professionals, Designers, Bakers, Chefs, Mother’s, Father’s, CEO’s.

Each person experiences this disease in many forms.  There is medically no two people who experience this the same. Some of the symptoms can be the similar, some are completely different.  Drs can’t track who, or how .  It’s so multifaceted. This to me, is an evolution of the brain. Fascinating.

Let me define that.  The ability for the human brain to develop skills ( copying skill, new life skills, planning skills etc and LEARNING those skills) for the mirraud of symptoms is absolutely amazing. 

Amazingly, none of us knew our brains were rewiring our abilities, not until we were diagnosed. Then comes the lightbulb.

Don’t just think of this disease in the end stages.  There are millions of us living happy and successful lives, coping with shit you can’t ever imagine.  WE ARE WARRIORS.

For those of us championing our days, I cheer you on!  For those who are broken today, my arms are hugging you.  I know you have my back too!

Segue….. squirrel moment ……. Right here.

Vanilla ice cream and canned peaches is my favorite dessert.  ( Besides apple pie in which case I can eat a 1kg pie no problem @ my weight of 128 lbs,  just sayin’). I love the way the syrup from the peaches freezes on the ice cream.  You should try it.

Another little thing you need to know, even in the latest stages,  is that human consciousnesses ( scientifically proven to be separated from the body, growing evidence shows that the mind goes far beyond the physical workings of your brain. look it up people) is still alive. We are still here. Talk to your loved ones. Be aware and intuitive.

For all those traveling with me on this road, Fill your hearts with love for yourself. Forgive yourself for all the “things”.  Add little trinkets to your home to keep you remembering.  Wear make-up!  Get you nails done and your hair ‘did!  Listen to great music and dance so everyone knows you are here.  Find love and live fully.

Hail to the WARRIORS!

Stay well my friends, Jan

This is my journey, my life as it presents itself right now. Some who had not read the ” my story” on FB may be surprised. No worries.

In this blog, I hope to inspire and connect all of us. Although being many miles apart, I am hopeful to connect with you.

I have one voice, but together we have the voice of incredible strength; powerful, meaningful real life stories. As we join together in this journey worldwide, our voices and stories will enable others and ourselves to gain knowledge and insight into this devistating and fatal disease.

We are the choir of the world, standing together in our collective lives, United.

I hope to inspire those of us living with this disease, Early Onset Alzheimer’s, (EOAD) with my stories. I am 54 years old.

It took 4 years to be diagnosed. Heart wrenching. I have learned this is the plight we all share. Just to get a diagnosis.

When I was diagnosed with EOAD I was kinda relieved. It gave me answers to what I was experiencing. I then researched, though not extensively, cried, but not for long, made a plan, lived my life, hugged my mother, my daughter & son in law, loved my grandbabies, and just moved through it, strangely at peace, worrying little about myself, but enveloped by the affects my illness would cascade upon my daughter and especially my grandchildren.

All that time just to give me a diagnosis. It is 2019, November, diagnosis was February of this year.

In 2015, I began to notice changes; strange things, changes that may have been apparent much longer.

Thinking back, I had changed my behaviors, slowly but surely. I honestly had put it off to age, saying ” I just know more of who I am, I need this”. Now I know that is not so true.

It took me a while, but I knew I wasn’t being honest to my family or myself.

Then, physical changes happened. Strange incidences and crazy wierd medical issues; all unexplainable by Drs, numerous tests and hospital emergency visits.

One Dr put me on medication for my heart ( I was having a constant pain in my chest). Test after test, EKG, Electrocardiogram s, stress tests, blood work, you name, and every test said nothing was wrong with my heart. 7 meds were pushed in me. I took them, I got worse. My liver swelled, couldn’t eat, have a bowel movement; I had to sleep sitting up. I thought I was dying. I stopped the pills. They were so toxic.

When I went back to that particular Dr he asked me how I was, I said I was great. He started to write a persciption, I told him I stopped taking all those 3 months ago, I told him all the test he had performed clearly shows over and over again I did not have a heart issue, my heart was strong.

I asked why he perscibed medicine I don’t need. He just looked at me. I told him to fuck off. I still don’t have heart issues.

I started taking a natural anti-inflammatory, all illness starts with inflammation. It is continuing to work with me, even on my Alzheimer’s brain.

My 1st MRI in 2015. It showed ” excessive mass loss due to artophy out of scope for woman if this age and health.” That was the beginning. Not one Dr. thought it was significant. WHAt????

Crazy wierd physical things kept happening. My GP ran more tests, kidney, blood, stool; I had a colonoscopy, cancer screening, hepatitis A B C testing. I got cyst! That was it! So annoyed about the cyst, it was on my butt , right at my tailbone, stupid cyst…. I had it removed, called it Charlie.

I believe my body was warning me. I knew something was coming but “what is it ?” was the ongoing question.

2017 MRI “Atrophy not consistent for female patient of this age and history; comparative testing to be made” still no Dr concern.

At this point I went to 2 neurologists, I had to ask for the referral; both stated nothing wrong. SERIOUSLY? The MRI notes from the test clearly stated otherwise. Maybe the test notes were wrong. I went on with my life. Took a promotion at work, changed cities and continued on. Devistating.

Late 2018, I had had enough. I had changed. Point blank. I needed help and needed someone to listen to me.

2019, Spect Scan .Confirmed diagnosis. Alzheimer’s Dementia, Early Onset.

Finally. something I can call my own, grab and work with, death sentence or not, I knew what was wrong.

When I found out I had EOAD it was a wierd set of actions and circumstances.

I couldn’t seem to reach the doctor directly to get my Spect Scan results and she wasn’t returning my calls, so I asked the receptionist to forward me the Spect Scan results via email. I read them. I called my daughter.

The doctor called me the next day and said, ” I see the results were forwarded to you…… How do you feel about the diagnosis?”. Strange day.

It was a doctor I had been referred by my GP, a Geriatric Internist. ( At 54, I though whoa! That will be a useless trip to a doctor). Turned out I was wrong.

She set me up to get the Spect Scan. That scan answered everything. Bilateral Pariatal Lobe damage, BilateralTemporal Lobe damage, Frontal lobe damage and showed just how much my brain is atrophied. THAT was crazy!

The Spect scan views your brain and shows by colour where the dead or dying / affected parts are by colour. I don’t have much active colour in alot of areas.

That internist then referred me to a colleague of hers, Dr. Sandra Black, Sunnybrook Health Sciences in Toronto.

My most recent MRI shows the atrophy has ceased, well, my brain hasn’t shrunk since 2017, Woot woot! only a marginal difference in the left lobe. ( Thus the word finding decline). My axon ( the information highway of the brain) is clear. Kind of amazing, but let me be clear, I know things can change, sometimes quickly, I’m not kidding myself.

I live my life as free as I can. Free of worry, free of stress, free and alive!

Sure there are things that initially irritate me, of course! But I let them go. Why would I want to engage my tired mind with those trival issues.

New symptoms often enveloped me, all the changes. Arrrgh! Super scarry! But now, those are the daily things, part of my life stuff. I always let my daughter know, she keeps track for me and monitors it.

Laughing at myself and the things I do has honesty become good therapy!….. For myself and my family. My grandkids laugh when I use the wrong words, ((I love them so much)) for finding the word I’m searching for.

That’s my journey. The start. Just a bit of background.

Everyday there is something new, a symptom, a tear, a belly laugh or sleepless night, sunshine, rain and adventures. Whatever it is, I’ll share it with you. I want you to know you are not alone, I want to know I’m not alone.

For those who are curious, I live well. I do all the things you do although it may be exhausting to me.

If you care for a loved one with EOAD, be patient. Understand we are human, humans make mistakes. Don’t let the diagnosis get in the way of your love.

In this blog, I will share my personal thoughts & experiences, accomplishments & losses.

I’ll be honest, I might swear, please don’t be offended. Sometimes you just gotta swear. I’ll probably make spelling mistakes and grammatical errors, please be patient as I don’t have an editor (ha hahahah!).

I will share ” breaking news” and attach reputable links for you to read and we can all, hopefully, gain insight into new medications, therapy’s, life skills and nutrition, cutting edge technology if I can find it.

I know this whole thing sucks, I’m right here with you. We can travel this road together. I have alot to say so I hope this and the reads to come keep you engaged. I’ll change the name of this site once I figure out how , lol !

Remember, my sweet friends, we are strong. We endure an ever changing mind and ever changing body every single day. We are living proof of powerful and significant lives. The challenges we face, many people without this disease could not endure. That is pure strength, determination and resilience.

Find in yourself the knowledge and love you may have put aside and bring it forward. Allow yourself to love life just as it is. Remain important to yourself and sing your own fantastic made up song!

Love you all!

Stay well my friends! Jan