Hello and Welcome! Its been a long 6+ months, I hope you are all well and safe.

Some of you may be here today as you have started to follow my journey on Tic Tok (tiktok.com/@luvyoulikejellytots), and some, hopefully, are revisiting my bloggy thing perhaps from FB, (facebook.com/lylljt ); either way I am glad to have you here and thank you for hanging out with me.

The last 6 months have been quite a time for me. My pain issues have certainly gotten worse; I am trying to handle them with supplements, exercise, meditation, good sleep and other such healthy body things; as always I am afraid of the next steps, narcotics, so I am doing all I can to avoid that.

I am going regularly to a truly fantastic Physio -Therapist, his name is Elias and his procedures, although somewhat unconventional, are doing some magic….. as always, we’ll wait to see how it goes moving forward, more on that later.

During the COVID pandemic, I have stayed well, never putting myself in any adverse situations, my family, as well, have been extra cautious, including my eldest grandkids ( love them xo)….. but its still quite difficult.

Alzheimer’s is often called ” The Longest Good-bye”. That phrase often is associated with families and friends and in that, people often forget that an even longer good-bye happens within the mind, body and soul of the person diagnosed with this fatal disease.

For me, the first year was the worst. I truly, TRULY, thought I would be the ONE. The one to overcome this, to magically surpass all the science and history, to come out of this with little to no effect; but, alas, it never happened and I continue to decline, slowly. That makes this a long goodbye for me. It makes a long goodbye watching little pieces of me fall away. My own resilience, education and just plain stubborn nature keeps me going even though the wind blows me away like a puffy dandelion.

There are times, as I have written before, that I will have reminders of things that are now lost. Things that will lead to asking my daughter ” did I do that before?” Yes is usually the answer, bitter at first then it just flits away, usually in a fit of laughter. My daughter realizes I don’t do that (whatever it is) anymore and I am usually glad I have lost the thing, we laugh alot.

The one thing I have learned, is not to hold on to my past; it is all that was before, and before is a long way away from the present. I have specific memories, obviously ones that I cherish, that stay with me all the time. My family is probably tired of me telling the same stories (memories) over and over, but with smiles and the same amazement, they listen as if it were the first time I have told them, I can certainty see that. I am aware I tell the same stories again and again and will often preface those moments with “… I’ve probably already told this, but…..” and then I continue., never pausing and straight into my story. It feels like there is this inner voice just needing the say tell the story again, to keep it real. I do not know if I have stopped telling any specific stories, they are no longer in my head. Like the phrase, “you don’t know what you don’t know”. Hope that makes sense.

Some of the bigger things, well, they are annoying; that is mostly because I notice them depleting. At my current state?, I completely notice changes and it can take a toll. Worry & self doubt are horrible feelings. But I certainly kabosh those with patience, balance and learning new ways to navigate the tasks I want to accomplish. Having Alzheimer’s means you are constantly or intermittently trying to find new fangled ways to do tasks that you have always done, differently; often successfully, but every now and then, the Super Mario theme song plays in my head, just like when you lose a level. I rarely play the level again in the same way, I have learned that I need help with some things so I ask for it, its so much easier than failing.

Fear is a reaction, Courage is a decision. I choose Courage. Every single person I have met with Dementia has chosen Courage over fear and that’s big. WE are a unique massive group of humans living our best lives. I want to thank you, the reader, for letting me into to your lives, for your interest in me and in this disease, it means a lot. Dispelling those things that are untrue, rumored and just plain bullshit , that’s important. I hope you will stick around and learn from me and my family, my friends and colleagues. This will certainly be a great adventure!

Next……….

I am totally addicted to M&M’s with peanuts and Lay’s plain chips. ARRRRRRRRRRRRRRgh! in my recent Tik Tok videos, I can see the changes in my “weight”, hahahahahahaha. My little grandaughter said, “grammie, your face is sort of wiggly” I think I better stop eating them.

I don’t mind being “wiggly”, spring is coming, I plan on outside stuff to assist in getting rid of it, and I have many projects planned ( being the operative word). A great garden ( we just moved and the neighborhood was just built) so there is no garden or lawn, plants or flowers, its just dirt and snow.

I will be growing tomatoes on the vine, planting a new tree, Wisteria; my granddaughter has many things planned for our food garden; carrots, cucumber, yukky onions (lol) , lots of strawberry patches, blueberry & raspberry bushes and of course beans, she loves green beans. I am hoping for a great summer, buying a hammock and large shade umbrella. I will also create a fairy garden with twinkle lights and magic things for my smallest grandbabies. It will be wonderful. I will keep all of you updated as the new gardens, flowers and love grow.

Next…………..

There are so many fabulous questions that have been asked on social media, I’d like to address a few on each bloggy thing. My daughter does her best to keep up and does such a wonderful job, still, I’d like to answer a few here. and perhaps blow the lid off a few myths or ideas.

It was completely my idea to write a blog ( its been about a year ) and ALSO to start a Tic Tok account. The importance of education about this and any other illness is imperative. Dementia is an umbrella term for the many illness’s of the brain.

• Alzheimer’s.
• Vascular dementia.
• Lewy body dementia.
• Parkinson’s.
• Frontotemporal.
• Creutzfeldt-Jakob.
• Wernicke-Korsakoff.
• Mixed dementia.
• Huntingon’s

……………..to name a few. Dementia can also be caused by Tramatic Brain Injury or be associated with Downs Syndrome. There are many causes for this illness, It is never ALWAYS hereditary ( such as in my case, I am the only one in our family).

My daughter doesn’t allow me to do things, I’m a grown ass woman. I am not embarrassed by my illness nor do I flaunt it, I just want to help those who are going through this and perhaps feeling a bit out of sorts, even lonely, and also to help those who are willing to learn more, learn. It is with great pleasure and passion I continue to advocate in these ways. I am aware in the years to come, my daughter will become much more “protective” and perhaps guide me in the right direction when I waver, and for that I am grateful.

I never know what day of the week it is; Like someone who is retired, it doesn’t matter nor does the weekend, I am free to do whatever, whenever, everyday, I no longer have a schedule or alarm clock. Pretty Fantastic.

There are a few rules of thumb when it comes to |”how far along” I may be ( or anyone with dementia) one is a 7 stage process measurement, the other most relevant is a 3 stage measurement; I don’t look at either, I am who I am in whatever I am doing in any given day. Regardless of all that, Late/ End stage will happen.

There are tests such as :

• Montreal Cognitive Assessment (MoCA) test. A 10-15 minute test that includes memorizing a short list of words, identifying a picture of an animal, and copying a drawing of a shape or object.
• Mini-Mental State Exam (MMSE). A 7-10 minute test that includes naming the current date, counting backward, and identifying everyday objects like a pencil or watch.
• Mini-Cog. A 3-5 minute test that includes recalling a three-word list of objects and drawing a clock.

Done them, sometimes did better, sometimes did worse, its not the definitive stamp.

Early Onset Alzheimer’s ( Young Onset) is quite different from Aging Alzheimer’s. The symptoms progress much quicker, therefore life expectancy is much shorter, average of 5 -8 years after diagnosis.

I am 57 years old, I was diagnosed at 54 yrs of age, I am in my 3rd year.

I want to thank all of you again for all the questions, support and encouragement. My heart is with all of those caring for a loved one and of course those who have lost a dear family member. Patience and kindness, understanding and intuitive knowledge of your living loved one is important. Also remember to be kind to yourselves, you are doing the best you can.

Done for today. Have a happy day!

Stay well my friends xo Jan xo

Contact Stuff:

http://www.facebook.com/lylljt

.tiktok.com/@luvyoulikejellytots

http://www.dementiaallianceinternational.org

https://www.dementiaallianceinternational.org/

This is my granddaughter; well, my granddaughters feet and a few tiny fingers. Hide and Go Seek is a new favorite game for her, and the above picture is her FAVORITE hiding spot. I love her.

She tries hard to get her younger sister to hide in the pantry cupboard too, but the little one just wants to climb in the rolling drawers or pull everything out, its so funny. But finding her big sister “Susu” is a thrill of a lifetime…..even if its in the same place every-time, they are so wonderful!

Next……..

Hello, and thank you for staying connected. I know its been quite some time since I have written anything, so, again, thank you for continuing to visit/check in while I took some (more) time out. I hope you are all safe and well. xo

When I last wrote a bloggy thing, I let you know my Dr. had up’d my pain med’s to a ridiculous amount, it wasn’t helping, in fact I honestly felt worse.

So much has happened over the past few months. Medication changes, seizure-like-episodes, hospital visits and doctors who continually say, ” you seem fine now….”, ” I can’t explain what happened to you”, ” I’ll write you a prescription for that….” . Tele-medicine calls, COVID 19 virtual / exasperating / impersonal/ rushed/ vacant/ …………arrrgh. It has really sucked.

The exhaustion I felt, the lack of connectivity from COVID, hit me most not being able to see my Doctor. I just wanted to sit across from any one of my doctors and ( in my animated way) show them, tell them, allow them to see me.

I do not go to my doctors (s) much, but somewhere inside, I felt a longing for a personal connection with them, not just a phone call. I was experiencing so many “new” changes and a steel sounding phone call just didn’t cut it for me. Trying to get my one doctor to understand what I was trying to explain without her interrupting me was exasperating; I could feel and hear the “rush” in her voice while we were on (several) our calls. Her solution was to “practice’ on me and change- change- change meds. I was so annoyed.

I have “weened” off 2 different meds since my last bloggy thing entry ( 3 in total, just sayin’) and there is one new prescription awaiting my pick up. I am seriously debating now, and will probably still debate once they are in my possession, whether or not I will take them immediately. I feel my body just need some time to breathe.

The medication ( for nerve pain) increases the serotonin in my brain, that is supposed to ease/stop the pain. Its not working. This will be the 4th medication. I have obviously been rethinking this especially as this doctor says she is running out of options. SERIOUSLY??????

As far as I know, that’s pretty impossible.

So I am going to try a few things on my own. I have never been one to take pills. As I wrote before, 2 Tylenol could put me to sleep. I have taken so much medication over the past year, it has in my opinion made me worse. Ongoing increases to brutal dosages and only feeling worse. I am toxic.

this is not the first time I have felt this way, through medications. I wrote once before about my experience with one doctor and his ease of writing ‘scripts. That was my first F-bomb to a medical professional.

Moving forward, gut health, more exercise, more water, more magnesium, higher vitamin C intake, richer foods. Just in the last week while “weening” I feel much better. I am even eating. I am eating. … and I have lost 16 horrible pounds of toxic waste through the “weening” process over the past month. I am sleeping normal ( my normal) and I can taste food as it should taste.

I know, I know, I may be overthinking this………but what if I’m not????? It is a chance I am willing and ready to take…. after all, I Am My Own Lab Rat ( that was a good blog, please search back and read that one if you get a chance.)

Having a fatal illness takes alot of your time and effort. It is alot to take in for one and with my illness, there is so much they don’t know about this disease; sometimes I feel its a guessing game for the doctors that you trust. I know I have to trust in how I feel.

In my opinion, treating a person (patient) with this disease + a vast unknown, the same as a person (patient) with “normal” onset of signs and symptoms of particular known illnesses is doing all those with Dementia a great unjust. We, those with Dementia, do not “acquire” these types of illness for the same rhyme or reason.

As the numerous sectors/sections of our brains become affected and/ or die, and /or just ping, in my head ( lol) that dosen’t mean I will ALWAYS be symptomatic of these things. I hope you are following me on this…….

My brain, in all its glory, is misfiring. I believe the “misfiring” can create symptomatic things of such illnesses ( such as the neuro pain I clearly have had) and it could be possible that it needs to be treated in a different manner. Perhaps that’s a big jump, I’m happy to wrong if that is the case.

Further to that………….. just because I have Dementia, that DOES NOT mean I am stupid. Even the Scarecrow still had sense.

I have promised my daughter that at the first onset of pain, I’ll take the med’s the doctor has prescribed. Although my daughter , right now, is not too trusting of that statement, I still promise to “take as directed” the moment I feel anything lurking. I will mostly because the pain I have endured over the last 9 or 10 months has been horrendous, I don’t want to be in a position of complete non-recovery. In speaking with my Mum, she agrees taking a break might just be a healthy decision, and she made me promise to start my prescription if the pain reoccurs, and I promised that to her as well.

In addition to all that, I will contact my GP to have her set up an appointment at a pain clinic ( thank you Christine xo); they may have different ideas about treating this, I’m game for anything.

To be clear, I do not take the pain that I have endured, lightly, I do not want to be in pain. I have missed out on so many things, big things and small, I do not want to continue to live in pain, I want to be as healthy as I can be through the course of this illness, maintain a strong vibe and just be happy.

As always, more on all the above later.

Next……

I always do my best to remember things from my life. I have deep embedded memories ( those are my repeat stories that I may tell several times in a year) , and those memories that are prompted by scents, like a certain scent that reminds me of Christmas with my Mum. More recently , say the last few years, my “remember scent” ,as I call it, doesn’t work as well as it used to. I can breathe in a scent and say, ” ooooooooo! I can’t quite remember what that relates to, but I know it is reminiscent of something or a time in my life, I know I’ve been with that before.”

Coconut scents reminds me of summers at our backyard pool and vacations in Cape Cod Massachusetts, the scent of oranges reminds me of Soccer with my Dad and how my sister Susie as a child and through her teenage years smelt, the scent of roses remind me of my stepfather and how they grew so lovely at the side of our house. It is all bitter sweet smells…… my Father, My Sister and my Stepfather have all passed, I miss them dearly.

Other such scents of metals, both copper and nickle, have relevance to me for lots of reasons; Lavender is a wonderful memory, rosemary and basil, pure cream and the smell of an old Chevy; Mr. Clean cleaning stuff as well as sunlight dishsoap; Cadbury Flaky chocolate bar from Scotland, rock candy and newspaper, they all have memory attached to them. Its crazy when you think about how memory is more than just a thought, it is an entire experience of all the senses. Taste, Touch, Sight, Hearing and Feeling. I want so much to hold on to them all.

The one “remember scent” I could live without is that pre -ripped half piece of Doublemint gum your Mum gives you that tastes like perfume and purse dirt, I could do with out that. Hahahahahah! BUT, there is so much more to that than just that piece of gum though, its a wonderful thing. ( although I still cannot chew Doublemint gum).

And finally for today, these few thoughts……….

Stay hopeful, tomorrow is another day and you never know what it may bring; give everyday all you got, even if its just a little less than other days, give what you can to yourself and others the best you can.

Nothing in the world can trouble you more than your own thoughts, be kind to yourself, foremost.

So as I close this bloggy thing today, I remember a few famous words from a beautiful blue fish…….”Just Keep Swimming”.

Stay well my friends xo Jan xo

and now…… a blast from my ( and perhaps yours ) past; 70’s summer favorites: https://www.youtube.com/watch?v=Hz2Cv6Zb9a0

Maidin Mhaith, Failte! That is, Good Morning and Welcome! ( Gaelic) I just thought I’d try something new. Moving forward, I’ll try to incorporate greetings in different languages, it will be fun, welcoming and we can all learn a new phrase or two! As always, I am hoping you are all safe, happy and living well.

My daughter shared yesterday’s bloggy thing on her FB page, she wrote; “Mumma is talking about some real internal struggles today. Alzheimer’s is an unpredictable companion.“

“Alzheimer’s is an unpredictable companion”, that settled quickly within me, perhaps enveloped me. Throughout my journey, companionship with Alzheimer’s was the last thing I would ever think of, but it is my constant companion. Like it or not, we are one.

Companions, typically, means your best friend, your dog and your partner in life; it means work mates, team members and those important people in your lives……..it doesn’t mean life ending disease.

In the dictionary: Noun

1. a person or animal with whom one spends a lot of time or with whom one travels. …… well, I guess I do travel with Alzheimer’s but I hate sharing the bed with anyone.
2. one of a pair of things intended to complement or match each other….. I do not believe we compliment each other in the literal sense of the word, however, ( this may be funny) I try to be as polite to Alzheimer’s as I possibly can, work as a team……match each others skills., sort of.
3. verb FORMAL — accompany.“he is companioned by a pageboy”……. I would consider Alzheimer’s the pageboy, although Alzheimer’s does not run errands….Alzheimer’s creates unnecessary steps while running errands.

Regardless……it is true what my daughter wrote, an unpredictable companion.

It’s hard to go through a day not knowing exactly how your day will transpire. Healthy brain persons have a genuine belief ( as I did once too) that the day will unfold as most other days do; with little to no bumps in the road. Having Alzheimer’s, well, its a toss of the coin. Even when you call “tails” and it flips that way, there is no saying you are only “tails” today; secretly behind your back, the coin continues to flip, never giving you the chance to call the landing.

Each morning I wake up and test the things….. all the things. I test my ability to roll onto my side or inch to the side of the bed. I test my legs BEFORE I set my feet on the floor. I could go on, but I think you see the greater picture.

Once I have made it down the stairs, there is a pause. I want coffee but the task of getting the coffee, grinding it, filling the reservoir, rinsing the dripbasket, finding my cup and getting the cream,…..well, it is a hard task.

Executive function, the loss of it or rather as I am losing those abilities, plays havoc with me every single morning. Some days I’m on the mark, other days I just sit at the island till my brain “pops” into gear.

You see, I want to make the coffee and I know how to make the coffee, but my brain does not turn on the “ok” switch to let me do it. It is like when I told you about hanging my curtains, I had to wait till my brain said ” ok, GO!”

In other instances, I have no idea how to get words out OR I substitute words to make up part of my sentences, sometimes its quite funny. I know exactly what it is I want to say and then BOOM, some crazy word comes out of my mouth substituting the correct one. My grandkids, they never notice as I have always used crazy words around them, but my daughter laughs with me. My son-in-law, English is a second language to him so he never notices ’cause he often substitutes words himself…… he makes me laugh alot.

Speech also brings up another issue…… understanding exactly what someone is saying. This is new for me, it has just started within the last few months, I have just recently recognized it. It is frustrating and almost embarrassing to ask the person sitting right in front of you to repeat what they have just said two or three times. Oh, Alzheimer’s……. .

In my “previous” life, prior to having my Companion, I was very well spoken, most days I still am, for now, and I am thankful.

I can tell you that my companion, my unpredictable companion sits heavy on my soul at times. Having to use a bed rail to get up in the morning, a shower pole to assist with balance & getting in and out of the tub, contemplative moments of steps to complete a task, and the squirrel moments that go along with it; ( squirrels always acts like its their first day being a squirrel, I feel like that some days), confusion, pain, sleep and sleeplessness, always relearning………still succeeding.

Sure, my companion really sucks some days, but most days, for now, my companion sits on the sidelines.

And now…..SOME EXCITING NEWS!!!!!!

In collaboration with a few other members of DAI, www.dementiaallianceinternational.org, we have launched a wonderful project!

The DAI CookBook! ( below is NOT an image of the front cover)

We have asked our members to participate and submit family favorite recipes in several categories. We are a group, and organization, a family, consisting of Doctors and Lawyers, Authors and Artists, Engineers and Millwrights, Nurses and Nurse Practitioners, Homemakers, Rocket Scientists, Chef’s , Sous Chef, Musicians, Photographers, Entrepreneurs, Sales and Marketing Professionals, Waiters, Waitresses, Mom’s, Dad’s, Young People and Old, we are From Canada, Australia, The United States, England, Scotland, Italy, The E.U., New Zealand, The Yukon and every other state, country, province and territory all over the world, and we all have Dementia.

These recipes, these family favorites and often secret recipes have the potential to be lost…… forever, so we have decided to put them all together and share these magical dishes with the world!

The DAI CookBook will be released as an e-Book on Amazon some time in or before September 2020.

Each recipe will include a short but poignant story of what it has meant to each family. I am so excited to read all the stories.

All proceeds will go directly to DAI www.dementiaallianceinternational.org to further support the Dementia Community around the world through communication and peer to peer connections, as well to ensure this  peak organisation can continue to globally represent persons with dementia.

It is my GREAT privilege to be involved in such an endeavor. I will keep all of you updated and let you know when you can get your hands on this amazing treasure.

Stay happy my friends xo Jan xo

Hello and thank you for staying connected with me, I hope you are all safe and well.

Letting go. That phrase means so much more now, much more than ever before. Control , now, is a whole new thing as well; just one more thing to relearn and define.

I can’t control the pain. Its horrible and completely unpredictable. Its fast. It has no warning. Its debilitating. It is totally screwing up my plans. Totally fucking with my quality of life, of living well with this disease.

My plan was to slowly succumb to Alzheimer’s. Follow the ” medical path of known trajectory”….. that is not happening, at least in my mind.

I have always known Early Onset moves quicker, but I feel I’ve gotten the short end of the stick, honestly.

In the last 8 months of which I have spent around 5 months on nerve pain meds, this locomotive hasn’t ceased. Three levels of pain, each measured separately in relief, each digging deeper. How do I let go? How do I just release the control and let this happen?

My Alzheimer’s doctor, my Internist, has increased my meds, it’s a brutal amount. I will spend the next days getting used to it. My next few days will be a write-off.

The CBD is absolutely helping, but its expensive and not covered, so I am rationing. I’m getting more today, moving up to 1200 mg bottle. Also, bloodwork, checking on things.

My doctor believes it is progression, it’s the first time any of my 3 doctors have said that, it’s a large and jagged pill, my diagnosis was only 16 months ago, it seems too fast.

To let go is to come into the present, to believe what is and release the past, being willing to allow life to carry you to a new place……holding on means trying to push life into the place of your own making…. that is control and I must let that part go or ride a different wave, a smaller one.

Throughout my journey, I have rolled with the punches, I’ve been happy to make the adjustments and learn new ways to remain happy and living well. The onset of this pain has been like a sucker-punch south paw wallop, the kind that knocks you off your feet. But I have to get back up, it’s only round 2? Maybe 3 or 4, who knows.

My first step, increase my meds. In the big picture, why am I concerned with that? In the small picture, I have to let go of that concern, let that concern wane. Control, it’s never easy to give up control especially when it concerns your own body.

I cannot, easily, formulate the plan, the map in my head, yet, but I’ll get there, I’ll just do it and it will become life. I just hope it helps. The whole point is to live well, I’ll just get on with that. I’ll update you at a later time.

The sunrise this morning is lovely; sitting on the front porch writing this. I hope your day begins happy and ends fulfilled.

Stay well my friends xo Jan xo

Good Morning to you! As always, I hope you are safe, well and happy.

This morning was a good morning; one I have grown used to over the past few years.

I fell asleep at around 5 or 6 pm, woke up at midnight. I made my way downstairs, went out and sat on the front porch for about an hour, wrapped up in a fluffy housecoat and sat in the cool breezes. It was lovely. I wake up / get up usually, around 3 or 4 a.m. so 5 p.m. is a long day for me.

To be clear, waking up and getting up are two different things.

When I wake up, there is no going back to sleep, but that does not mean I am getting up. Each day is different. This morning at midnight, I got up; but when I went back to bed, I did not sleep.

Its a strange thing this Alzheimer’s. I can be awake for hours and never open my eyes. Its not like my brain is full of thoughts and ideas or than I am overwhelmed with emotions and angst, I’m just here, awake, not sleeping. Time floats by, no rhythm involved, no internal clock ticking away, no desire to do things or finish tasks, time just passes often feeling it has been 20 minutes but in reality it is 4 hours. It is amazing. I am calm, rested and unworried. Eyes open or closed, it doesn’t matter. It is the most wonderful part of my journey and I love it. I hope this part of it all never changes.

I suppose if I were still married or had a partner in life, those moments may happen outside of my bed; I believe I would have a concern of waking the sleeping beast or being annoyed with the “sleeping noises”, LOL, ( I do not miss that at all !!!!) , however, as I am alone and sleep often across the width of my bed, ( weird, I know) I remain comfortable and relaxed in all the moments as time ticks by.

I have recently added a “wedge” of sorts to my bed. At the top, where your head lays, I added in some height. It is a long, slow incline wedge of sorts, allowing me to sleep comfortably and slightly above flat. The incline starts just under my shoulders and raises me up a bit. I placed it between my mattress and the foam topper, it is awesome. Between my new hand rail and this incline wedge, I can sleep more often in the “correct” top to bottom position. With saying that, My mattress is new, top of the line, it is NOT uncomfortable at all; I just find that now, I need numerous pillow choices, numerous sleeping position choices too…… so I make sure I have them all.

As I said, I went back to bed after about an hour earlier this morning, i stayed lying in bed, until 5 am., not sleeping, just still. I got up out of bed, once again made my way downstairs, it can be tricky for me but I manage, made a coffee, went out to the front porch again, sat and watched the sun come up, listened as the birds began to sing, then started writing this blog on my phone.

It is now almost 7 a.m. and my granddaughter will be up soon so I should make myself another coffee while I wait to hear her singing a song and we can spend an hour or so together cuddling and singing together; I have been awake for 7 hours, staying awake till 5 p.m., well, that’s a long day for me.

Additional edit: I didn’t finish this entry in one go, I got busy. After my granddaughter woke up, we sang songs and danced around, I hugged my oldest grandkids as they came downstairs; my daughter and I took a car ride and sang songs LOUDLY while driving around and dancing in our seats, then a masked stop to pick up a few new summer tops and a bird feeder so we can watch the birds early in the morning; I sold a 1940’s dresser that I had revamped to a woman who is driving 3 hours one way to come and get it ( I am honored, my daughter posted it for me and is doing all the stuff), I climbed a big hill with my granddaughter and she yelled, “Grammie! I climbed a big mountain, we are big!!!!!” ( there is a big dirt mound across the street from us, it has wildflowers growing there, my granddaughter picked flowers and we bounced around) we blew bubbles and waved our bubble wands in the wind; I had a campfire meeting ( https://www.dementiaallianceinternational.org) with my pals, it was great, asked for advise on sleeping and chatted, it is an additional get-together during COVID19 to ensure everyone is staying well; listened to music, danced in the livingroom with my family, helped with dinner ( just a bit) and was in bed by 6:00 pm. It may not seem like much, BUT, I was up at midnight.

Next………….

You can’t help being your own Lab Rat cause if you sat and waited for a true cure or course of reasonable events to be laid out in front of you about Early Onset Alzheimer’s, you’d be waiting way too long, I don’t have that kind of time.

In a previous entry of these (maybe a few entries) bloggy things, I told you about the natural anti-inflammatory I take, Serrapeptase, that whole thing was one of my first Lab Rat attempts. I took it because I was getting random things, health things, happening in my body…..medically explainable and unexplained things, one time events, one month events, weekly events, every now and then events, and test after test showed nothing OR it showed no longer an issue, no rhyme or reason, it was annoying , however, it was the beginning of my Alzheimer’s, the beginning of the stage before diagnosis. ALL illness starts from inflammation…..somewhere in the body. Since my Doctor couldn’t pin-point it, I was going to cover it all.

Unbeknownst to me, it was helping with Early On-Set Alzheimer’s, ( I didn’t know I had EOA) and stopping or slowing all the other related inflammation happening as a result of EOA. Pure Magic in my view. I think, sadly, as this disease has progressed, inflammation is winning in part.

Although Serrapeptase is a natural substance, I still have to be cautious. The additional nerve pain I have experienced, the agitation of the nerves, has added (possibly) inflammation in a different way, in different areas. Welcome the additional Lab Rat session, CBD oil. I have re-balanced the “natural source” things over the past few weeks to have things work better. Adding one means taking away some of the other.

My Doctors are good with me doing these things, they are fascinated with my results, my neurologist is studying one the properties and effects as a matter of fact. There are many other RAT sessions mixed up everyday in my life as well,it is a necessity of LIFE WITH EOA.

If I had liver damage, a specialist would help to heal me, kidney failure, same thing. When you have Alzheimer’s, its a lonely street.

Doctors study you, that is all. Treating you is a “clusterf*ck” of epic proportions. There is limited medication, limited time you can take those medications, and they only slow things slightly; there are additional medications , all only for masking what is happening; there is LTC, Assisted Living, In Home Care, Occupational and Therapeutic care, FAMILY, Love, Dancing and all the Laughter…… but there is no cure.

I research the things that affect me. I do not blanket this disease although millions of people live with this same disease. Just as we are all different as human beings, we are, for a long time, different in the way our bodies go through this.

I do not know of one person who has this disease that does not do everything they can to live well. There is a self created Lab RAT in all of us.

Everyday I still struggle with eating ( I just plain forget even with prompts), taking my medication on time or making sure I don’t miss a dose, walking, climbing stairs, sleeping, pain, exercise, executive decisions and functionality……. and so much more, I do my best not to complain and I always fill you, and my family in on changes.

Struggling through? Nah. I’m living. We all face changes in our lives.

A few SIMPLE things to get you through your day:

1. Meditation: Spend time in silence, simply listening.
2. Hang Out with nature: Aim to get at least sometime outside every single day.
3. Creativity: Tap into your internal artist by drawing, writing, painting, or making music.
4. Learn to listen: In general, listen to friends, families, silence, and most of all, your instinctive self.
5. Be body aware: Learn to appreciate and read the little signs and signals from your body daily;
6. Let go: Warm up to the idea that you don’t have to control everything. Life is going to happen. Relax.
7. Stay positive.

Stay Well My Friends xo Jan xo

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Good Morning, as always, hoping you are safe and well.

Every morning I get up with my 2 and a half year old granddaughter. I am always up before her, but I wait to hear her singing; exactly what my daughter did as a child when she woke up, it is a memory I hope will never fade.

Every morning she is so happy to see me, and I her. She greets me every morning with ” Graaaaaammmmie! I love you!, Grammie, I so proud of you, I love you!” She fills my heart.

Blankie and Unicorn go everywhere with her, it’s so sweet. To bed, in the car, when she is ” laxin” ( relaxing, lol), to the bath, just waiting there until she is done, and along with her for cuddles from all of us. Even on facetime chats with her Gramma Susu in Scotland, it’s amazing. She even comforts her little sister on occasion with these treasures of hers, sharing her love.

Her smile is big and meaningful, her laughter is pure and wild. At 2 and a half, she is determined, smart and simply loves being loved. She is beautiful.

A few days ago we had a fabulous rain storm; after the storm, I took her outside to see the biggest and most colorful double rainbow. ” many colors grammie, many colors! ” Today at breakfast, she yelled out RAINBOWS, just yelled it out and smiled.

Next……

This is the sunrise through our front door.

I had to share this, it is so beautiful.

Next…..

Its day 10 or 11 with CBD, feeling good. There are still (obviously) my underlying symptoms and manifestations of my EOA, but the ongoing nagging pain has subsided to more than tolerable,  I am grateful, honestly.

I switched to a different CBD, the one I was talking about, from the stock of the plant. It doesn’t smell as good or even taste as good BUT it has 33mg of CBD per 100mg. I still do, on occasion, SNIFF the warm scents of the first CBD oil I purchased, it is very comforting.

It’s a strange feeling, this new normal. The initial ” outward” pain has certainly subsided. Alot of the ” inward” , underlying pain is waning and more tolerable; the deeper pain is less.  I measure my pain in all three of those ways. It is surprising to me to have 3 levels of describable pain.

In addition, even more surprising to me, my outward body , just under my skin, feels different in places to the touch. Small things, like my collarbone, my upper chest, my wrists, ankles and even shins; really anywhere where the bone is closer to the skin somehow feels less ” puffy?”. Its odd. More on that later, although I do have a theory.

Additionally, I’ve noticed a positive switch in my posture. Pain can do so many things to your body. A pose into a “fetal” type position, even while standing, can happen with body pain, it certainly did with me. Intense moments still saw me clenching my hands into fists, that has eased off to lesser moments, often not happening for days. The images in my mind float off to those in non-verbal or later stage Alzheimer’s, that subject is for another day.

As an additional measure, I flushed my system.

I have never been one to take medicine’s, 2 Tylenol would put me to sleep. I consider ALL medicine I am taking to be somewhat toxic to my body…..even though some are ” medically proven” to assist me, while others, the natural ones probably build up too. Build up leads to improper absorption, therefore, limiting effectiveness.

“Too much of a good thing” kind of thinking, perhaps warped, in a sense, or not, but honesty, I have experienced medication overload.  My intestines, organs and bowel system just cant handle it…..so i cleaned them all out.

In my head, the residue of unfiltered muck stays in there, like a backed up drain; cleaning the drains, in my view, is important.  I do this on a regular basis for my own personal system,  it works for me.

I know when my own body has had enough. Changes in many functions start to occur, as well as outward physical signs.  These days I’m a little more “slower” recognizing the signals my body is giving, but I can still pat myself on the back for getting there.

I do NOT use harsh chemicals, crazy home remedies or “fads” to heal and flush myself from medical toxicity, I wouldn’t want to harm myself further. It is a practice I use as I feel it helps. For me, it does. My family can even see the difference.

Moving forward, I’m gonna stick with CBD.  I think moving to “plant stock” variety has been a great choice for me. Next step up, if needed, will be THC based.. ..anything to get off ( or lower) the amount & type of pharmaceuticals prescribed to me for pain.

Last year, early in the year, I sent a short video to my daughter of my right hand, I wanted it for my neurologist to see as well. Symptoms or events can often come and go with this illness, sometimes they come back, sometimes they don’t. Trying to explain the things that happen, explain the ever-changing kaleidoscope and then having no proof of it actually happening is an issue; things can be so random, often manifesting in one time events and be truly significant, I learned early that PROOF is important.

In the video, there was a very apparent tremor in my right middle finger, I knew it was significant. During the past year, I’ve noticed a few changes in that tremor and growing resistance in my right arm; I also believe this is associated with the pain in my right hip, the pain and stiffness are likened to each other, it is all right sided. In my head, I believe it is blood flow; I believe there is an issue, a growing issue. I will speak to both my GP and my Internist about this issue, I will have them, if concerned contact my Neurologist. It is unfortunate that my Neurologist is located in the epicenter city in my region during COVID19 times; honestly, I’d like to see her, so many things are changing with me and I’d like a bit of input.

Anyway, extension of my right arm is labored; enough for me to notice; my middle right finger has a constant tremor. I let my daughter know this morning. Worrisome as it is a growing deficit, magnifying. As always, more on that later.

Stay healthy, happy and safe my friends xo Jan xo

and now….. Andy Williams, ” I can sing a rainbow”: Enjoy! https://www.youtube.com/watch?v=bND0DSUiHNk

Hi Everyone! Hoping you are all safe and well, that the sun is warming you or that the rain is washing away the day. xo

So, change of plans……. this blog was going to be how you could experience what I experience with my writing……. but it will have to wait till the next bloggy thing.

Today, I am feeling well. Yesterday…….there was no yesterday for me. Let me explain.

So today, as I feel so much better than yesterday. I guess I should explain a bit.

YESTERDAY, got up, 5:30 am, felt great, 10:00 am, I was in bed till 6:00 am today. No pain just pressure in my spine, but there was no way I could move. Lost a day.

Early morning just after 10:00 am , right after I crawled into bed, I breathed in the scents I loaded into my hands, pain gone within less than 5 minutes, slept fantastic, still pressure BUT NO PAIN, that was important. I woke up at around 6 pm, popped downstairs to see my family, then back to bed and sleeping within half an hour, slept through to 6:00 am this morning.

Woke up apprehensive, but pain free. The stuff did not knock me out, it relieved the pain, therefore, I was able to sleep so well! Better than I have in 8 months.

I recently purchased CB2. It is CBD Oil, however, it is made from the seed of the Hemp Plant, not the stalk. ( it makes a difference in many ways.)

Where I live, Pot, CBD and all forms of edibles, smoke, vape, capsules etc etc are legal. I do not want to get high, lets be clear about that.

Over the past months I have researched quite a lot about Cannabinoid Receptors in the body and how it would correlate with my Alzheimer’s Journey. I have chosen to use this specific blend as I feel ( for now) it is a great match; if in the future I need THC, I’ll switch to CBD w/ THC or I’ll just spark up a fatty; honestly, whatever gives me relief, gets me off these meds, I’ll do it.

The product I am using , CB2, contains 100% ALL NATURAL Terpenes and I use it in an odd way, just being me! 3 drops in my hand, rub both hands together slightly, cup my hands and breathe in. It is very earthy and woodsy. After about a minute, I lick the rest off my hands. Totally safe, totally fine, tastes pretty darn good, almost lemony. This product can also be used in a defuser, I can just shut my door, drop a few drops in the defuser and sleep…..all the while the misty goodness is reaching the receptors in my body.

The role of CB2 receptors in Alzheimer’s disease is important; CB2 receptor activation improves cognitive impairment; CB2 receptor modulates the release of cytokines in the cells of the immune system; CB2 receptor are present in tissues INCLUDING the Central Nervous System ( CNS) ; activated CB2 receptors are expressed in the brain, mainly by microglia, with levels increasing as these immune cells are activated; CB2 modulates microglial migration and infiltration into the brain areas with active neuro-inflammation and degeneration, regulating neuro-inflammation; CB2 receptors inhibit microglia-mediated neurotoxicity by reducing the production of pro- inflammatory molecules; activation of the CB2 receptors aides in the clearance of Beta-amyoid (Ab).

MOUTHFUL! but I understand it.

So today, as I feel so much better than yesterday.

I am not promoting this product, I highly suggest you do your research. I have found what seems to be working for me and will change up things as needed. I am not suggesting you try this, I am just informing you of what i have chosen to add to my path of wellness. I would be happy to share the product name, just message me and I’ll let you know what product I am using. I do not sell this product.

If I can manage this pain, I can continue to live well with Alzheimer’s.

I am having a great day! no pain. I am happy. More to come.

Much love to you all xo

Stay well my friends xo Jan

Hello my friends! As always, hoping you are safe and well. xo

Without a doubt, cats would indeed push everything off the edge if the world was flat. It is a fact. Facts are important.

Fact is, each journey into Dementia is different. Fact, what one person is experiencing is not the same as another is experiencing EVEN THOUGH each person has the same diagnosis, been diagnosed for the same amount of time, by the same methods, perhaps even the same doctor, live either in the same city or across the world. This disease is unique.

For me, Early On Set Alzheimer’s (EOA) manifests, evolves and plays out similar but unlike any other human. Mine has a great element of pain and internal inflammation; inflammation that I keep under check with a natural anti-inflammatory. It is possible that the inflammation causes some of my pain, resulting in fibromialgia type symptoms, but more likely that it is my central nervous system CNS or my peripheral nervous system OR both as they are interconnected. My brain is doing that.

I know many people with Alzheimer’s, most of whom I have met through Dementia Alliance International (www.dementiaallianceinternational.org), D.A.I., others through my local chapter of the Alzheimer’s Society. Out of all the people I know who live with this illness, only 4 others suffer with pain; all of those people have been diagnosed for years longer than me.

Alzheimer’s will manifest into ( possibly) organ issues; visual issues and anomalies, eg: my vision is going all wonky, the optometrist may not see any abnormalities during my check up, my neurologist will see the differences in my brain; loss of speech patterns and auditory understanding capabilities, along with lots of word searching; short term memory incidences, mobility and so much more. It is a monster.

Inflammation has newly been added to defining research as a critical component of this disease. For me, it is a big part. The doctors do not know how it originated or why, however, as my brain atrophies, larger portions of fluid build up. This causes brain fogs.

To be clear, Alzheimer’s brain fogs ARE NOT the same as the media is portraying for society where people spend too much time at a computer, it is totally and completely different. My “fogs” incorporate my body, soul and mind. It is heavy, thick and unruly. It has nothing to do with any outside influence like computer fatigue; I also find it offensive this term is used within the millennial population, it is not comparable; take a break, get glasses, walk in nature, just my opinion.

Anyway, I do not have many of those fog days anymore, my anti-inflammatory relieves those effects; I am able to have clearer thoughts, chained ideas, good sleep ( when not in pain) and the ability to perform well above what is expected of me with the amount of damage I have in my brain. I am high functioning in comparison to what my brain imaging tells the doctors. I’m doing good.

My new pain meds have been so helpful, still looking into CBD oil.

FACT: Alzheimer’s is not catchy

FACT: 1 in 3 humans ( look to your left , look to your right , look in the mirror, one of you will be diagnosed) will be diagnosed with Alzheimer’s

FACT: Alzheimer’s is NOT always hereditary, there is no familial line in my family, I am the only one.

FACT: Cats push all things off the edge

Segue……

I finally went out. Well, to a store. To a place where other humans are. I wore an N95 mask and gloves, provided to me by my daughter.

Now that things are starting to open up, to see how we all do, I took the opportunity to pick up a few things, for my grand kids mostly. Freezies and Magic Magnetic Sand. I also picked up two of those squishy balls; one large and full of sparkles, the other, it fits in your hand and when you squeeze it, tiny balls inside protrude and squish out.

After getting them, my daughter and I ( of course) opened them in the car. After a squish and squeeze and a good belly laugh, we put them down and chatted. When I picked them up again, they stuck together, the big one and the small one. We laughed a bunch and slowly separated them, my daughter laughed and said, ” Oh wow! Its just like sitting too long on a seat in the summer and your legs stick to the chair!!!!” hahahahahaha!

I made a short video of the balls, but i can’t seem to post it here, could be the format. Join me on Facebook @ http://www.facebook.com/lylljt to see the video, you’ll see what I mean, its funny.

Next…….

I’m going to publish my next bloggy thing WITHOUT proof reading it. Remember a while back I wrote how I constantly have to go back and see what I’ve written, correct all the things and add in the words that don’t reach my keyboard from my head. Well, it should be interesting.

I type quite well, always have, but I seem to skip words now, only producing broken sentences when writing this bloggy thing. I want you to see what I experience.

I hope you will stay connected to see the next blog, it should be interesting.

Stay well my friends xo Jan xo Throw your love around!…. put it in the ground where the flowers grow!

https://music.youtube.com/watch?v=YYOKMUTTDdA&list=RDCLAK5uy_luMytwNDUtZw5OJ-TeitwSXbSolqmEVuc

Hi everyone! I’m trying to keep a good schedule with writing my bloggy thing, I hope you are all safe and well.

Schedules and routines are a fairly new thing for me. My entire life was sort of off the cuff as far as making schedules. Sure I had a schedule to be at work both when working for myself and for a company, but it all seems so different than what my life involves now.

My last job, although with a major retail distribution company, allowed me to make my own schedule, a schedule that fit my job to my life, not the other way around. My photography also allowed for that. I would only schedule or advertise when and if I wanted a few extra bucks, I preferred shooting for pleasure. Same as when I refinished furniture, I could work as long or as short as I wanted, then sell it when I was ready.

I left my jobs just over a year ago, things were just getting too hard for me. I tried keeping one of my jobs, but I was constantly overwhelmed in my head; things just wouldn’t go as easy and freely as they used to. On that particular job, I was now using my hands and brain too much; jobs were taking too long and I wasn’t making “time” like I used to. Jobs that would take 15 minutes were now taking 35 min. Small things, and big things like physical strength and endurance were waning. I left.

Even though I could schedule my jobs around my life, it was still too much. Now, over the year , other types of scheduling have happened; and with the addition of the move and new routines, man……. its hard to catch up.

Routine and scheduling becomes a part of you when you have Dementia. It becomes purposeful.

At first, I will admit, that I secretly started scheduling things. I would make notes ( and often lose them) to keep me remembering, I started using a physical notebook ( but a bought funky ones to hide the fact I was using written reminders, no legal pads or ledgers). Then I started utilizing electronic reminders, most of which I still use now and have upgraded to A.I. like Google mini and stuff.

I tried using electronic calendars but failed so miserably at even entering the information, kept forgetting to sync stuff together or even enter information, it was annoying and defeating. The physical notepad was always best, always digging the old school stuff. Slowly I moved to A.I. as it just was easier to tell Google keep my stuff scheduled. Now I use my notebook for ideas and notes, it is totally illegible, written all over pages, I’m certain no one will be able to transcribe it, but its mine, all the messy epiphany ideas, jumbled together like a sweet portrait. I can pick out a few things, but not everything; its absolutely awesome and completely artistic!

When scheduling, for me, entered into a purposeful thing, it was a super scary time. For the life of me, I could not figure out why I couldn’t just keep it in my head. It was almost a secret shame. Of course I thought of “oh! you are just getting older!” but, honestly, I wasn’t that old, I knew deep down inside it was way more than that.

I have grown to find that it is part of my executive function and my short term memory; Frontal lobe,  important cognitive skills in humans, such as emotional expression, problem solving, memory, language, judgment. In addition to that, I was having problems transcribing what people were saying to me, Temporal Lobe, primary auditory perception, left side in most people, is involved in understanding language and learning and remembering verbal information, I have very little damage to my right side, not too much affecting me from there.

So, it is important for me to have reminders and schedule NOW, real reminders, verbal ones, like the ones my grandson gives me every day……and follows me to my room to make sure I take my medication on time, I love him.

Keeping routines is important with E.O.A. or any other Dementia. I love when my days flit along, even love the days I just get nothing done more than a coffee or two, read a few things and doze off, or the days when I feel I just woke up and its actually 2pm ( that is sometimes 10 hours of awake time for me and it seems like 2 hours) , it is both joyful and bothersome.

I do my best to “schedule things”, but I do not always succeed. It doesn’t bother me though.

Life, for me, has always been about moderation, work smart not hard, in a way, I’m sticking with that. I keep the important stuff scheduled and do my best to be accurate; with all other things, a little bit of this & a little bit of that……

Next…….

This weird new thing has been happening to me. Hiccups. Not regular hiccups, strange noise hiccups. I wish I could explain the noise. My daughter just laughs at me. It has only happened a couple of times, but it is so unexpected! Its not like I have eaten anything too fast or swallowed too hard, it just happens out of the blue. Random, crazy hiccups.

Now, in the process of Alzheimer’s, hiccups are prevalent in the later stages of the disease; having said that, I have A-typical ( Hippocampus Sparing) and I will not follow the usual progression of this disease, sort of. Here is a short video about A-typical, I can see where some of this applies to me https://www.youtube.com/watch?time_continue=285&v=w4xQeNQVFoc&feature=emb_logo

and here is an article with the definition of A-typical https://oxfordmedicine.com/view/10.1093/med/9780198779803.001.0001/med-9780198779803-chapter-5

I’m not saying I’m in late stage,, throughout my diagnosis time, I have varied in the (3 stage model ) mild to mid stages, the pain could be more towards later stage ( who knows) ; it just makes this whole thing more complicated. You never know what to expect. Its like the old “Bits & Bites” commercial ( a snack food of pretzels, cheezy things, doritos and other such things) ” every handful…..a whole new ball game”.

Its also true that it is NOT related to my diagnosis. Its all so confusing.

Anyway, the hiccups are funny but annoying, I hope they are a fluke, more on that later if it becomes a thing.

Good note: new medication has relived my pain immensely. Let’s hope it works for the long haul.

CBD Oil is an ongoing subject with me as of late. I have always been adverse to taking “pharma”, and I am researching all I can on CBD Oil. More on that later as well.

And now…… A little Ray LaMontage to soothe your soul, Stay well my friends. xo Jan xo

https://music.youtube.com/watch?v=6POcQ5wiUa4&list=RDCLAK5uy_mkPdnadBmgXk28mbGxm_5uGeKvHrec208

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Good Morning! Hope you are all safe, happy and well. I am having such a horrible morning, it totally sucks.

Look, I’m not complaining……but I’m complaining. Playing the cards that you are dealt is one thing, but come on!!!!!

Having dementia is just as my friend Christine ( on Facebook, Chrissy’s Journey) said, a shit storm that never ends. Well, today the shit storm is a tornado.

Yesterday for the first time in a long time ( I don’t know, it could have been only 2 days, the Blursday effect) I felt reasonably normal. The constant pain and pressure in my lower back and hips was all but gone; I know for certain it was the best feeling I have had for MONTHs, I even told my daughter it was magical! I woke up this morning, a little later than usual, about 5:30 a.m., went downstairs to make a coffee, things were fine. I washed the dishes, tidied around, took my time ( always cautious ) sipping my coffee along the way; I did my stretching, feeling quite confident after a good nights sleep and a great day yesterday; sat up, went to the washroom, stepped outside on the front porch and enjoyed the view, came in, BOOM. I was done.

Immediately my hands started aching; throbbing so intensely I am sure I screamed a bit. Then, straight to my mid back and lower back, and wriggling down my legs, deep, deep, deeeeeeeeep inside my legs. It took me forever to get up the stairs as my hands couldn’t grip the rails and my legs were so sore. Shit Storm. Complaining.

I do my best to stay positive, I honestly do, but this is physically and mentally exhausting. I am thankful I do not have any underlying medical conditions. Having dementia with underlying heart, lung, liver, kidney, arthritis, or any other human disease is devastating. Just one interrupted signal from your brain, one synapse loss, and a true domino effect starts though the body. One after another.

Now, having said that, I did not start out with having underlying conditions, but truth be told, with every lost signal in my brain, every rewire of the still living neurons, my body is still dying. All of this is saying, that as of now, I may just have additional underlying medical conditions brewing, it just may be too early to tell. Even something as “minor” as the common cold devastates the dementia body. Every cold takes longer and longer to fight, sometimes weeks, never days anymore; the virus affects you in ways so unlike a healthy body, a cough turns into pneumonia quickly. COVID19 is deadly to us. As I wrote before, with our brains under siege, there is no way you can say that our immune system is not highly compromised.

It is imperative to understand that not only are the “known” functions diminishing, but there is also so many others on a cellular level, all the science stuff we never think of as we live our daily lives, the hidden things that act behind the scenes, things like waking up calm and not startled; things that let you turn off your alarm & know that it is an alarm; to have a shower and understand water, walk down the hall while understanding depth, get dressed and choose appropriate clothing, bend to put on your shoes while understanding left & right , close & lock a door, drive, eat, drink, make good choices, smile…… micro changes adding up to big things. Progression. Its a slow dying process, micro-bit by micro bit. Having normal daily routines go from aptly doing to no longer understanding process, is terrifying.

It can take the brain days to “re-wire” a new connection in a dementia brain, sometimes there is just no new connection made and we loose, to be blunt. But our brains are amazing. Our brains will constantly rewire allowing us ( I hate this phrase) to adapt ( it’s used too loosely), EVOLVE is more like it!…. until we can evolve no more, our brains run out of room, we run out of healthy brain matter, no more good material for neuron-regeneration. The tangles win.

Today, as my dementia progresses, the pain is winning. Stupid pain. BUT, my spirits are up, just a little deflated. As I think (lovingly) of all my friends who are living each day with this disease, my heart swells. I know that you, too, are championing your day, no matter the setback. As we all navigate and build new avenues of living well, truly one moment at time, we understand that our lives, our hearts, are united.

Moving on……

My Friend Kate, (kateswaffer.com) recently wrote a blog which included 20 reasons for #Gratitude, it is a wonderful list ( a great read) so I thought I would also write down a good list of 20.

1. I am grateful for my family and thankful for their understanding.
2. I am grateful to be able to share my experiences with all of you, and to hopefully bring to light that Dementia is much more than memory; thank you all for staying connected.
3. The grass is never greener on the other side of the street, it can sometimes look that way, but growth in & towards gratitude comes from taking care of your own, family and friends.
4. Eating your favorite foods is a great way to put a smile on your face, I am grateful for Flakies and vanilla pudding.
5. The arms, legs, feet, and hands that give me freedom of movement, although sometimes stubborn and sore, I still love them.
6. I am grateful to have a place to recharge.
7. I am grateful to know there are amazing times I haven’t yet experienced.
8. I am grateful for those good people who’ve inspired me to be my best, to keep going and inspire others.
9. I am grateful for creative coasters, colorful little squares that cradle my coffee cup.
10. Technology. I love it.
11. Pretty scents that fill the air.
12. I am grateful for bouquets of wildflowers and bouquets of cut flowers. I am grateful for flowers.
13. Bees. Save the bees.
14. I am grateful that everyone tries.
15. I am grateful that there are so many choices when your buy sunglasses.
16. I am grateful that there is the color yellow and grateful for the smell of a wooden pencil ( lol, I know that’s weird, but have you ever smelt a wooden pencil? Try it. HB4, just like in grade school.)
17. I am grateful for my Daughter.
18. I am grateful for my Mum.
19. I am grateful that I do not know a life without my Grandchildren.
20. I am grateful for my bare feet in fresh dirt, the smell of fresh tomatoes, the way the warmth of the sun feels on my skin and how cold water is from the garden hose.

Next………..

So, the world is slowly opening up, be careful out there.

Stay well my Friends xo Jan xo

This song, by Rob Szabo, I first heard in 1996, when he performed at my nightclub, enjoy!

https://music.youtube.com/watch?v=CBVCjpeef5g&list=RDAMVMCBVCjpeef5g

Join me on Facebook @ http://www.facebook.com/lylljt