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birthday week and weird experience
Posted: Saturday, May 20, 2017 8:47 AM
Joined: 9/12/2013
Posts: 3608

another birthday coming up - thought I would be dead by now but instead am having fun.

Keeper got me 2 cakes, one to share at church tomorrow and one for ME. It is a life long thing, to have a chocolate cake with a Hands Off sign on it.

so I had an experience the other night - I took a hefty dose of the cbd oil and went to bed. Although it is high in THC I am past the point where it has any noticeable affect like being loopy or feeling intoxicated.

I was asleep and started to have a vision - different than a dream. I could not open my eyes but saw streaming shower of golden lights falling like rain over what I later recognized to be a brain. In the center of the field was a tunnel, like a water fall escalator with a human body descending, reverse jacob's ladder.

As if someone had turned on a movie in my head. It was so powerful I thought I was dying and this was an end of life vision and I thought I would call for help to wake up Keeper but instead I remembered to replace fear with interest and relaxed, letting the vision go on and observing it.

This went on for 3 - 20 minutes, time had no place. The thing that became true was the separation of conscious mind, observing, and brain function. Consciousness that has an existence outside of brain chemicals and pathways. 

I was super tired the following day and could not sleep the next night. Have not had experience again but it was wonderful!

It was not a hallucination, not psychedelic, no idea what that was but the feeling was of my brain being washed and that it was connected to pineal gland coming back to life.

go figure.

so here I am walking almost 2 miles a day, shedding edema, cleaning up little patches in house, and feeling better than I have in years.


if it is possible to regain function then the theory of dementia that frightens people so is wrong. I have become skilled at changing a fear or anger into interest and observation.  Never knew this was possible. My Dad had a very contented life with Alzheimer's and I think I am too. I climbed out of a hell state.

Iris held my hand over internet while I was in hell state after diagnosis and then she started going on vacations and I thought, am I going to have to do this on my own? Answer: yes.

I hope my experience make others question just how bad this illness or condition or whatever it is really has to be. Pioneers!

any idea on what the heck the vision thing was?

Iris L.
Posted: Saturday, May 20, 2017 9:50 AM
Joined: 12/15/2011
Posts: 18719

I have no idea about your vision, alz+.  What I have been having are flashbacks.  I had a flashback to ~age 5 the other day, which was over 60 years ago.  It was very clear.  Today, I don't remember what it was about.  But so what.  I'm realizing that not having a good memory for the past is not a big deal.  I'm more about being comfortable and engaged in the present.  

Yes, we are mostly on our own, in an existential sense, but here we have each other.  I'll always be here for you, alz+.  

I get so much out of what you report about your Dad and his own journey.  Living with dementia doesn't have to be miserable and scary.  It's how you think about it.    I don't think of expectations as being lowered, but changed.  I have changed my expectations about this board, that I have benefited from for so many years.  

Thanks for sharing, alz+.  Which day is your actual birthday?  I want to wish you on the precise day.

Iris L.

Lane Simonian
Posted: Saturday, May 20, 2017 11:39 AM
Joined: 12/12/2011
Posts: 5179

"if it is possible to regain function then the theory of dementia that frightens people so is wrong."


Wishing you a happy birthday.

Posted: Saturday, May 20, 2017 11:44 AM
Joined: 12/4/2011
Posts: 21317

Happy Birthday...what a grand idea to have your own cake!!!!!
Posted: Saturday, May 20, 2017 12:07 PM
Joined: 12/3/2016
Posts: 374

Have a wonderful birthday week alz+.  Enjoy as much of your cake as you want!!


Posted: Saturday, May 20, 2017 12:10 PM
Joined: 9/30/2015
Posts: 1155

Happy Birthday Alz! I hope it is a wonderful day for you.. You deserve it.. Big hugs..
Posted: Saturday, May 20, 2017 7:31 PM
Joined: 8/10/2016
Posts: 4164

Happy birthday
Posted: Sunday, May 21, 2017 5:24 AM
Joined: 9/12/2013
Posts: 3608

my actual birthday is tomorrow.

Iris - when you went to China I was so excited for you but worried every day! ha! It was like a knock on the head - TRAVEL is possible. There have always been wonderful people here helping me but I was attached to you from years of excellent advice and comfort. As you expand your life it inspires me to live it up a little!

The more I think of the brain episode vision the more it seems to have been some psychonaut viewing of my brain trying to heal itself.

There were streams of light and then the falling star showers. It was so beautiful. Because every day I have a sense of the old ticker taking a break I have been practicing the rejection of panic/fear and the embracing of changes or events with interest.

I am too old now to worry about much, but looking back I would say the first symptoms started about 1995. I accommodated the losses by making my life smaller and doing less and less outside of work, recover, and cleaning my house. I stuck to my routine. 

The 10 year shelf life associated with ALZ is really loose. My Dad was looking for "a safe place to live" for years before anyone knew what was happening. I am so lucky I was able to help him and my Mom.

I am struggling with physical aspects of fatigue as I get more muscle tone back I want to walk and maybe paint some walls but then I get shaky.  

Going to consider my vision a gift, a mystical event.


I am having my first childhood.  

Posted: Sunday, May 21, 2017 8:44 AM
Joined: 5/20/2014
Posts: 4408

A mystical event indeed seeing your own brain healing! My granddaughter's birthday is tomorrow also. So glad she was born on the same day as you!
Posted: Sunday, May 21, 2017 8:56 AM
Joined: 5/20/2014
Posts: 4408

If your Birthday is May 22 and your Zodiac Sign is Gemini

Birthday Persona Profile 
People born specifically on the 22nd of May are presumed to be charismatic, persuasive and intellectual with the typical capable versatility of the Gemini star sign. The astrological planet assigned to this particular day is Uranus making you enthusiastic, creative and good at organizing. If you have this birthday although you are highly communicative you tend to keep your inner thoughts to yourself. You usually have a carefree attitude, lots of dedication and the ability to quickly adapt to changeable situations. You possess a genial, sociable, lively nature that is inquisitive and often likes to collect things. Individuals with a May the twenty second birthday are fairly openminded, realistic and practical with a giving, compassionate temperament. You are methodical in your actions and prone to be a bit of a workaholic who has a tendency to easily lose track of time. Being full of common sense and perceptiveness helps you ordinarily see life from a balanced view. 


Iris L.
Posted: Sunday, May 21, 2017 2:02 PM
Joined: 12/15/2011
Posts: 18719

Yes, Alz+, it was your own mystical event to tell you something.  Your brain is healing, and showing you new possibilities that you would never have thought of if your life had not gone down this path.

I too, fight panic/fear every morning. I have not thought if it as embracing the changes, but I do decide that I'm not going to be overcome by the changes.  Every day is a new decision to tread water.  Now, I like the idea of embracing the changes, and looking upon them with interest!  Again, Alz+, you are a ray of enlightenment in the dementia world.  You exhibit the Dementia Pioneering mindset!

My fatigue symptoms started in March 1986.  I remember exactly.  It was a few days before my birthday.  I had so much trouble raising my arms up to comb my hair.  In those days I wore curlers, and all of a sudden, I could not handle the curlers.  I got my hair cut very short for my birthday.  When I thought back, I realized that something was seriously wrong with me at that time.  But I believe the memory loss became noticeable in 1987.

I am struggling with more fatigue too.  I'm working on getting to bed earlier.  I haven't been able to take my walks.  I'm working on that, too.

I heard on the radio that retirement years are like childhood without parents.  Food for thought.

 Iris L.

Posted: Sunday, May 21, 2017 3:57 PM
Joined: 12/3/2016
Posts: 374

"Embracing the changes" is such a valuable lesson to be learned.  I hope that you will feel comfortable continuing to post about how you are accomplishing this in various situations. You are very inspiring.




Posted: Sunday, May 21, 2017 10:58 PM
Joined: 9/12/2013
Posts: 3608

it takes practice to learn to not panic when startled. Like Navy seal training! I learned when things go weird to not panic. Then I learned to be curious, to feel safe even with a weak hand, or loss of vision or forgetting something. The vision thing was being a witness to something.

I am very interested in people recalling the "beginning" and the sense of overwhelming weakness. So whatever it is has been knocking on the door a long time.

Iris that you remember the event with the hair curlers! I remember when I could hardly get up the stairs to my bedroom, the night I slept downstairs.

L lee - the horoscope was unusually kind to Gemini! thank you and how cool to share birthday with your granddaughter.

Lynda - I appreciate  every kind word you have for me. Today I was really worn out and it is scary when I can't really move and first thought was "the oil quit working!" and rising panic. But I have been so tired 2000 times before, I hope to walk in morning and maybe clean up living room as my friend from Texas just arrived and wants to come over.

I have eaten too much cake past few days, who knows? Figure it out minute by minute and cherish the days when that is not necessary.

love and courage

Jo C.
Posted: Monday, May 22, 2017 1:42 PM
Joined: 12/9/2011
Posts: 13692

Happy Birthday alz+; we are both Gemini's . . . my birthday is tomorrow.    Hurray for us to have birthdays in May; such a lovely month!

My goodness, a cake of all your own, now I would't mind that.  Especially if it were a chocolate one.

  I hope you find points of lovliness in your day and that the sun shines for you.

 May your "new year" be a special one.


TX Girl
Posted: Monday, May 22, 2017 11:04 PM
Joined: 4/5/2017
Posts: 16

Happy Birthday!  Your vision is fascinating.  I've always believed the human brain is the MOST POWERFUL thing on earth.  Seeing your brain being washed in gold indicates its being cleansed. Think in terms of when we have an injury what is the first thing we do? Clean it, so that it may heal.  To me the gold indicates a higher power is cleansing it for you.  Your ability to turn fear into interest and observation is intriguing. I'm willing to bet you will have more visions. I look forward to your post and god willing maybe you are doing something right and are on some level repairing damage.
Posted: Tuesday, May 23, 2017 7:50 AM
Joined: 5/20/2014
Posts: 4408

To not panic, treading water...I have a learning curve but I am catching on. I've caught myself saying more than a few times recently that "I am not going into emergency mode with so and so" when someone near me presents some type of challenge and acts like the building is on fire! Not panicking, not overreacting and  not going into emergency mode helps me gain objectivity and keeps my feet on the ground. We need to do whatever we can to stay emotionally grounded. We no longer can afford the emotional fall out from fight or flight response system (practicing my navy seal terminology). 
Iris L.
Posted: Tuesday, May 23, 2017 6:29 PM
Joined: 12/15/2011
Posts: 18719

Ilee, I have a theory about the panic mode, the sky is falling mode that many people revert to nowadays.  I think that human relations have become more impersonal and more flat.  So people have to catastrophize everything in order to get someone's attention.  I have noticed this on television and on the internet.    People want to get you emotionally charged in order to get you involved.  Normal events don't draw attention anymore.  It's a sign of the times.  But we can't handle this dramatization of life.

Iris L.

Posted: Wednesday, May 24, 2017 7:37 AM
Joined: 9/12/2013
Posts: 3608

Jo C and all my friends here - thank you for the birthday cheers!

while it is in my mind, another comment on panic -

So I have 4 days in a row of feeling super good, then I start to feel drained but can't sleep. If this happens 2 days in a row the panic pops out. The immediate fear is "I will never feel strong or _____ again."

Then I try forced sleep by taking a half or whole Ativan thinking I would at least be able to check off Enough Sleep from list of possible causes.

Looks like that might be contributing to 48 hours of extra fatigue. Maybe it has a half life of 24 hours? I forgot, but right now this seems to be something that is not a good solution for me in regards to sleep.

It takes days to rid my body of medications, so even the 1 tablet every few weeks lingers so long it might cause the extreme fatigue.

If you are in the intense anxiety stage and use a med like Ativan maybe make a note on how your energy is, and if it is really low remember it might not be  progressing dementia dragging you down, it may be the med lingering. 

Panic and anxiety were major features of dementia before and after I was diagnosed. I think it is very common and when it is unbearable I need relief or I can get hostile.


TX Girl - the vision was like being in an IMAX theater front row seat. It was so colorful and dramatic. Your sense of witnessing healing process makes sense. I compare the healing I feel now to doing a thorough house cleaning knowing it will get dirty again.

The thing that has healed is my rage, anger, and most of the fear.


glad to be alive!

Iris L.
Posted: Wednesday, May 24, 2017 3:47 PM
Joined: 12/15/2011
Posts: 18719

Although I am not adverse to medications, I think it is wise to learn non-drug methods of alleviating stress and anxiety.  The medications are not always with us, and they have side effects.  Most of the anti-anxiety meds worsen memory and cognition.  

I had a terrible problem with anxiety in the early days.  I was told about deep breathing as a method of relieving anxiety.  Deep breathing has and still is working for me.  I also use visualization.  

Alz+ reminded me about smiles, getting out into nature and the fresh air and sunlight, and about the calming effects of animals.  Music is a great mood stabilizer.  Eating is a stress reliever but it has consequences for many of us in the form of overeating.  Also, imbibing alcohol to relieve stress can backfire.  We have to discover what methods work for us and use them now, so we can carry them into the future.

Iris L

Posted: Thursday, May 25, 2017 6:59 AM
Joined: 5/20/2014
Posts: 4408


I think your right about the ativan. Benzodiazepines do have a long shelf life and can build up in your tissues. I think brain and age also affects metabolizing medications at a much slower pace. One of the side effects of benzo's is memory loss.