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your story matters or why am I happy
alz+
Posted: Saturday, June 27, 2015 11:09 AM
Joined: 9/12/2013
Posts: 3608


checking in here to share what I learned this past month.

It has been years since I have felt as good as I do now. This is 5 or 6 years after I first felt there was something wrong and 2 years since I was diagnosed.

At first when I heard "dementia" I panicked. Even though I had taken care of my Dad when he had it and knowing what a wonderful time we had through out his Alzheimer's, I expected this to be a horrible death sentence.

First advice I got was to put my affairs in order so we went to elder care attorney and got wills made and end of life directives etc. I stocked up on disposable diapers and a new pillow and memory foam. It is funny to see those items around the house now.

I read upon death and how to die, I wrote long winded (I know) emails to my son and daughter about Life's Big Issues, and so on. I forgot how to smile. I was mad at my husband for everything that had not happened and was never going to happen. I was a jerk except to the dog. I forgot how to smile.

I understand now that was what it was like to find my direction without a map. What seems to have happened was I finally got the hang of it, I learned how to navigate cognitive losses and vision loss too. Even though medical sites claim we lose our ability to learn, I find myself learning every minute of every day. I also find most of what I feared is avoidable, that there is not a pill for ignorance, and that there are people out there teaching that we do not become empty vessels or a creepy burden on society. I looked into mirror and practiced making a happy face and the habit came back.

My husband had no experience with taking care of someone but had one experience as a child with a neighbor who had dementia and who would come over unexpectedly and yell "Yoohoo!" (I hope to be that woman some day!) She was not a problem but a neighborhood character. A lot of information out there is tragically wrong.

My days now are spent according to what I can do and I don't worry when a day comes that I don't know what a can opener looks like. I am in love with my husband again, the dog still is adored. I learned to hear myself laugh again.

The light at the end of the tunnel turned out to be sunshine.

What you can share about your own story is valuable and these boards provide us an opportunity that did not exist 15 years ago to help each other by sharing how we are doing, good times and bad. Even that expression I changed to EASY times and HARD times. During the hard times now my husband helps, during easy times he lets me alone to do stuff.

Even a sentence or two can be a profound source of help to others. Your life matters, your story is important.

Love and Courage


Lisa Ramey
Posted: Saturday, June 27, 2015 11:53 AM
Joined: 6/20/2014
Posts: 160


Dear Alz+,
Well my oh my what have I learned. I have figured out that over a year later after I heard MCI; the grief process continues.
Dr. Said MCI; my reply was that's splitting hairs what you gonna call it, Dementia? She said yes and I left the office cried down the road for a while then I was numb.
Still research on Google Scholar when I can read. Love radiology assistant a Web site with brain pics explains MRI images in brain disorders.
Most days I laugh but some days the fear and dread lurk just below the surface.
So other than failed drug trials I ain't sure what I know, now.
Lisa Ramey

alz+
Posted: Saturday, June 27, 2015 5:28 PM
Joined: 9/12/2013
Posts: 3608


Lisa - I wonder if that grieving, fear and dread is not universal with dementia. It makes sense to me.

I also know my "happiness" could be that some worry section has been wiped out in my brain. So far all I have read by doctors or advocates who do NOT have dementia but study it don't seem to understand that inner distress, while people who have the condition write about how it wears them out.

I was so depressed for months on end, like end my life depressed. But somehow when I began to question all the things I feared and dread it dried up. I realize it may come back but for now the experience of easier days is likely for all of us. I have never been down when near the smell of horses, and walking through the stables is the one reason I go to the county fair.

Your posts are so natural, I love to read your take on things.


Lisa Ramey
Posted: Saturday, June 27, 2015 6:05 PM
Joined: 6/20/2014
Posts: 160


Dear Alz+,
I've been called a lot a things but natural is a new one.
EOAD I guess has given me the green light to (me
I have been a people pleaser all my life not now!! ( see adult children of alcoholic! )
Dementia gave me Teflon Brain. I like it. I can no longer beat a dead horse as far as obsessing goes
In a way forgetting will be a blessing forgetting my brothers suicide and the task of cleaning his room before the haz-mat team finished yea that will be a blessing
So Dementia does have its perks

Lisa Ramey

alz+
Posted: Sunday, June 28, 2015 7:08 AM
Joined: 9/12/2013
Posts: 3608


Oh Lisa.
That just broke my heart.

I did research the anxiety and dread and in Dr Allen Power book there is one paragraph stating that this is common in EOAD. It almost was like having a constant itch, nothing I did really lessened it until recently.
As you said, it seems eventually the teflon part you mention came through for me. It makes sense that as it becomes more difficult our bodies make a protection, and I suspect that is what the plaques and tangles are, a protective reaction to an invasive or inflammatory agent.


So current research into removing P&T would take away our protection and my hair would burst into flames.
I too was conditioned (intentionally) as a child to put everyone else first always, and to never express a need for anything ever.

We turned out so good despite all that. You are a keeper and yes you are so unpretentious and natural I just love having your voice on boards.


Lisa Ramey
Posted: Sunday, June 28, 2015 3:44 PM
Joined: 6/20/2014
Posts: 160


Dear Alz+,
Your hair catching fire, the mental pictures are stuck in mind now. You know I never thought of Teflon as being the bodies way of protecting itself.
That gives me some inner peace. I was thinking along the lines of amnesia. Just lost for no reason or rhyme. But as protection I like that idea
Your a smart cookie, gal. Yea as protection not a random act of nature I'm sold.
Whatever my mind can take I reckon.
Thank you for my piece of mind.
Lisa Ramey

alz+
Posted: Sunday, June 28, 2015 5:03 PM
Joined: 9/12/2013
Posts: 3608


I worked as a massage therapist for a long time and was trained by Osteopaths about mind/body connections and holistic medicine.

My favorite teachings were about how our bodies were designed 100% to keep us alive and well. Scar tissue builds around weakened joints to strengthen them, pain signals us to look for a problem, cancer cells are stuck together in an attempt to isolate them and so on. Our bodies heal cuts without us having to "do" anything, our broken bones heal, we get stressed out when on the wrong path or to call attention to something. We make our own opiates when in pain.

That is why it makes sense to me that our bodies would generate some kind of relief if our brains are being attacked. It feels me to me like insulation, can not think of the right words for it but definitely my anxiety levels have dropped over time.

We are fortunate to have medicine to help when our bodies are overwhelmed, antibiotics, heart repairs, eyesight improved, joints rebuilt etc. If some medical intervention comes to be for us I will be grateful and happy. For now I am grateful and happy anyway, which is in itself medicinal.

Iris told me when I was super anxiety ridden that stress reduces our cognitive ability by 50% or more. I set about dealing with it and made progress. I also did not allow anxiety to reach biblical proportions anymore by using medical marijuana and got off Ativan for the most part.

I guess I made a rule for myself that if I was edgy angry or crying for any length of time and could not breathe my way out of it then I took the minimum amount of MM or 1/4 Ativan tab to calm down. I gave myself permission to treat the anxiety as the doctors do not seem to have a clue how intense it is or the damage it does to relationships and well being.

Give ourselves what we need to relax, get sleep, enjoy what we can. Pretty soon you have a life back.


llee08032
Posted: Monday, June 29, 2015 7:26 AM
Joined: 5/20/2014
Posts: 4408


Lisa,

I am so, so sorry for the terrible tragedy you suffered in losing your brother to suicide. No one comes out of such tragic times w/o post traumatic stress symptomatology so please do pay attention to reducing stress in every way you can. alz+ gives very good feedback and input in how to reduce stress. I also grew up with alcoholism in my family and you don't come out of that unscathed either.Add PTSD to that on top of dementia and you have a double whammy! I suffered from PTSD (too personal to talk about on the boards). Right on Lisa! You don;t have to be a people pleaser anymore!

I think I am going to tune into Dr Power's webinar if it available now.

Lisa Ramey
Posted: Monday, June 29, 2015 4:33 PM
Joined: 6/20/2014
Posts: 160


Lee & Alz+

Ya'll are just toooo...sweet.

I'm glad ya'll are here!!!!

Lisa Ramey