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