by Sharron Warren

Posts tagged ‘brain’

The Tip of the Iceberg

alz-other-sx-2017

In my last BLOG I wrote about symptoms people don’t usually see so therefore they find it hard to believe you have Alzheimer’s or any form of Dementia.  After my BLOG was published I found this.  Share please with friends and family – they rarely see under the iceberg.  Pretty amazing what we can hide.

 

 

VALENTINES DAY

valentine-sticks

Another Holiday is on the way.  Valentine’s Day is one of the less stressful holidays so if you have traditions try to keep them.  If it’s not possible try something simple like watch a movie, cook something simple but delicious, go for a drive or a walk.  If you are a Care Partner these special days are going to be forgotten soon so grab what you can now.  I’m sure you can figure out what that special thing is.  Make it fun, sweet and simple.  MEMORIES.

 

The Brain and What it Controls

big-question-5feb

Plaques and tangles form inside our Alzheimer’s/Dementia brain.  Once they find their way in – the downward slop begins.  I imagine that these invaders do not take over the brain all at once but that they start in certain areas of the brain then start spreading out.  This is why one day, month or year we can do something well and then it’s lost.

People just can not wrap their mind around how this picture, with all its beautiful colors is a brain.  While our brain is amazing it is not very pretty.  When I see pictures of plaque and tangles, which are also make look beautiful, it is hard to imagine that there is room where one can still talk and communicate so well.  While it’s a worn out topic for me I’m hoping this explains it better.

This is how Alzheimer’s progresses.  For some from diagnoses to death can happen in a few years but some manage to last 10-20 years.  It depends on how fast those plaques and tangle grow.  I feel so fortunate that while I am progressing I am doing so slowly and continue to have my social skills and speech.  If you look at the little part of the brain where the speech is – I seem to be free, for now.  Oh, I also have no problem with taste!!

One thing I am so glad about is that I still have MY opinion.  My opinion should not bother you as your opinion should not bother me.  I’ve always been very opinionated but more so now and I have been known to write or blurt things out.  Most of the time it is not what I would have done a few years ago but YOU forget who is writing or speaking.  While I want to be “normal” – I am not, so shame on you for not remembering that.  This pertains to all of us with Alzheimer’s.

 

PBS Specials

I hope you have been watching the wonderful PBS Specials on Alzheimer’s.  I know they will be repeated so check PBS to find the next showing.  A big eye opener was “Every Minute Counts”.

The increase of Alzheimer’s as Baby Boomers get older and the toll it take on Medicaid, Medicare and private insurances is unbelievable.  There is a wonderful graph of the government money that is given to several diseases and while those diseases are “under control” Alzheimer’s is not getting nearly as much money and this disease to growing at an unbelievable rate.

 

A repeat of Tom’s Words from Aug. 2015

I thought this was worth repeating

“The next few paragraphs are by Sharron’s husband, Tom. This is my observations on the changes.

Very often when Sharron tells someone of her problem they minimize it, saying things like, “I forget things all the time”. “Just the other day it took me 5 minutes to find my keys.” “You seem so normal.”

Cognitive impairment is not like that. My perception is there are basic mental processing issues. Not affected are things like motor skills; the ability to see and react; and the ability to talk. Thinking processes are affected. Things like logical problem solving, and dealing with the unexpected.

When you lose something, your keys, you think back such as what I was doing when I got out of the car, trace back your steps and find those keys. Now if you have no idea what you did over the past 5 minutes, where would you look?

On the subject of communication, I remember one day in 2011 when I told Sharron she is using too many pronouns. If you cannot think of someone’s name, you can just say “she”. If you cannot think of an item, you say “pass that to me”. In 2014 I heard “pass me the flipper over thingy” and “That temperature measuring device.” Now in 2015 the word challenge is progressing to sentences. Imaging getting half way through a sentence and forgetting how to end it. The loss of words is frustrating for both of us.

We need to separate conversation into 2 different types. There is what I call ‘shooting the breeze’ like friends just sitting around chatting; then there is ‘direct’ communication, where information is conveyed to someone. When Sharron is shooting the breeze everything seems normal. Words flow; there is a normal two-way interaction. Sharron can be telling a wonderful story of our last trip, but her color commentary will have fractured some facts. I like to say she can be talking about or trip to Florida when we actually went to Georgia.

Direct communication is much more challenging. Because recall of recent events has been confounded, passing information that you have had that pain for one week becomes twisted to something like ‘a couple of months’. To address this Sharron is writing many events in her journal or day planner.

Even with the challenges we still live our lives. We have overcome a serious leg fracture, and are back to living. Last week was at the beach.  We have plans for more travel in place. We are not letting Alzheimer’s control our lives.”

 

So Sharron, How are you doing?

163

Me and a treat from Menchies

I am enjoying the monthly Memory Café.  It is always nice to see folks from our first support group.  Time is short so it’s hard to talk to everyone.

My knee is progressing and I’m able to get some walking exercise.  We go the Williamsburg Landing fitness center three times a week.  Riding the bike is great for my knee.  Pain??  Oh yes!!  I have pain most of the time, but I also have faith.

I’ve always talked to myself but it’s getting worse and now it’s really irritating me!  Yes, I do answer.  I’m coming to realize it may be a coping mechanism.  I know I am talking to myself at the time but I can not stop.  I believe we all talk to ourselves at times but all day long is a bit much.  When you start irritating yourself you’re in big trouble.

I am enjoying the sunshine days and counting the days until Spring.  I am not a winter person so anything below 50 is cold to me.

I am so happy that the election is over.  We need to put on our grown up pants and support our President.  With so much un-American spirit and hatred I’m still proud to live in America.  The rest are welcome to leave.  I know we all have our own opinions and that is what’s great about America.  The terrible words I heard and received have relieved me of a few friends.  No room in life for that.  Put on a smile and be happy you live in the land of the FREE.  GET OVER IT !!

 

 

garden4

I put on my Happy Face as I wonder around the house

trying to remember what I need to do or where to go

I am still aware that my brain misfires but I pray for a better day

I find that I’m still able to hide my fears, mistakes and tears but when will that go away?

Hang on a little longer I tell myself

I fear the time will come when I can no longer remember loved ones names or faces

But for now I know the ones I love

I pray they will remember me – I know my loved ones will keep on loving me, no matter what happens

Taking care of me is my biggest fear

This is all so scary

 

 

As always thank you for taking the time to read and PLEASE share.

warren-sign

 

 

 

 

 

Advertisements

Blessing for the New Year – 2017

christmas-2016

My Family – Riley, Trisha, Rod, Alexyss, Emma, Tom and Me

I hope everyone had a nice Thanksgiving and Christmas.  We were so fortunate on both days to have a great meal at my Son’s house.  His wife is an awesome cook – thank you Trisha!!  In the middle of those Holidays was my granddaughter’s birthday so – another dinner!!  Yea for us.  I know all of us love the leftovers so on the 27th Tom and I cooked our own little turkey meal.  We ate for days!!!

I know the Holidays can be rough for us and our care partners.  Such as – I do not handle large crowds and a lot of noise.  Many Alzheimer’s studies have shown that smaller celebrations with less chaos works better.  If I find myself at a large party I tend to find a seat as far away as possible and Tom takes over from there – such as delivering me food and drinks.  As I’ve said before I’ve been know to leave crowded grocery stores before finishing my shopping.  We rarely go out to dinner but chose lunch and if we pick dinner with friends it’s a quiet place. You will never find me in Bonefish Grill!!

 

shutterstock_306642647-1000x480

This is an article from “Alzheimer’s News Today”.  I want to show you how SLOW these companies are to finding a cure for Alzheimer’s.  Above is what they think the plaque and tangles look like.  Beautiful, isn’t it?  NO

“An investigational treatment for Alzheimer’s disease (AD) could be on the horizon, according to a study from researchers at Biogen and the University of Zurich. Aducanumab, a human monoclonal antibody, shows evidence of reducing Alzheimer’s amyloid plaques — the culprit behind AD-induced brain cell death.

The treatment candidate is potentially the first of its kind, since current medications for Alzheimer’s slightly delay symptoms and do not prevent the disease from progressing.

The research report, “The antibody aducanumab reduces Abeta plaques in Alzheimer’s disease,” was recently published in the journal Nature.

Previous studies in mouse models of AD showed reductions in the sticky brain amyloid plaques with injections of aducanumab. In this trial, humans with mild Alzheimer’s disease received intravenous aducanumab for one year. A total of 165 patients participated in the study and received treatment from October 2012 to January 2014 at 33 clinical sites in the U.S. Participants in the study received monthly intravenous infusions of a placebo or aducanumab at four different increasing doses.

As the dose increased, so did improvements in clinical measurements of cognition and memory, known as Clinical Dementia Rating—Sum of Boxes and Mini-Mental State Examination scores. Even more remarkably, brain amyloid plaques decreased, and were almost completely gone in the group that received the highest dose of medication.

“The results of this clinical study make us optimistic that we can potentially make a great step forward in treating Alzheimer’s disease … ,” Prof. Roger Nitsch of the Institute for Regenerative Medicine at the University of Zurich said, according to The Telegraph.

“Despite it being a small sample, there appeared to be a slowing of cognitive decline and functional decline. The group with a high degree of amyloid removal were basically stable. If we could reproduce this it would be terrific,” Nitsch said.

Additional studies are needed for the FDA to consider approving the medication — which could take years, since the current study is a Phase 1 trial, and phases 1 through 3 in human clinical trials are required by the U.S. Food and Drug Administration (FDA). This study could be a crucial step toward the first disease-modifying medication for the treatment of Alzheimer’s disease.

“This is the best news that we have had in our 25 years and it brings new hope to patients with this disease,” said Dr. Alfred Sandrock, from the Massachusetts-based biotech company Biogen.”

 

https://www.mindcrowd.org/

Above is a great little website that is trying to do something for Alzheimer’s.  I read it daily in hopes they have news I was not aware of.  I took this test just for the fun of it.   For those skeptical of my diagnoses I scored a 14%.  Most of my parameters for my age, education etc. should be in the 50-65%.

 

So Sharron, how are you doing??

thumbname-and-tom-dec-16

I have found Jigsaw puzzles on my iPhone and iPad that are so much fun.  As always I get the free ones but I do believe they are good for the brain.  You can set them for any number of pieces – depends on how brave you are and how good your vision is.  Working on these puzzles is more fun on my iPad but can still be challenging.  It’s a source of relaxation for me.

If you are still able to walk DO IT.  It is great for the body and mind.  Since my knee replacement I’ve been trying to walk more to keep my knee limber.  While it is still painful for me I keep going as I know there is ice at the house waiting for me!!  I’m looking forwarded to the spring and summer so we can walk more and head to the beach.  Walking on the beach is great for your mind, soul and legs!

These past 3.5 months have been rough but when I read the paper or check Face Book I realize that I have it pretty easy.  We have a nice house, car (though older than I like – hint-hint ).  We have food, places to visit and the funds to get there.  Yes, we are blessed but I still manage to moan, something I can no longer control.  Tom is blessed with select hearing.

I read an article recently about a person with Early Stage Alzheimer’s who was doing “great” as his friends and family would say.  They pestered him into believing he was a fraud – that things, in their eyes, were fine.  The things they do not realize are that people move at a rate unbeknown to us AND we put on the best show we know how.  Some go from diagnoses to 1 year later with serious dementia and mobility issues and some of us can live for 20 years before severe issues occur.  God made us all different so please do not question or “interview” us.

When I act wonky people tend to forget my diagnoses.  I may not realize I’ve offended someone or appear angry so you need to remember and be kind to all of us.  There are people who question my views of the Alzheimer’s medications and why I don’t take anything.  I will not answer that question again.  There are those who say “Nothing can be wrong with you as you speak so well.”  I think to myself – then be happy for me.  That part of my brain is not affected – yet.  I don’t want THAT label but it is what it is.  I just want people to understand those of us with Early Stage Alzheimer’s.

My goodness would I love to be dementia free.  Don’t we all??  Don’t you wish your loved one did not have this terrible disease?

Don’t we also wish after all these years of research there would be something that really works?  Instead of medications we are saving our money for down the road and pray there is a cure for our grandchildren as there will be none for us.  It’s been said that Baby Boomers will bankrupt the government and insurance companies.  Someone needs to get on the ball.

 

 

Exercise, sleep, socialization and keeping active are all we have to keep our mind from fading away.  Get with it!

 

Thank you for all your support.

compassion

 

 

Realization is a Hard Pill to Swallow

Image

Realization is a hard pill to swallow

I believe we all know we are going to die – just a matter or where and when but it’s something most people do not obsess over or think of every day.  I saw my Mother on the decline road of Alzheimer’s and yes, that’s what she died of.

At a recent EASE class we had a physician speak on the cause of AD along with a few statistics to which he added at the end, “and then you die.”  I do not believe that he realized he was addressing 5 people with Early Stage Alzheimer’s and their Care Partners.  I was trying to hold it together as he read through the stats – feeling near tears for an hour.  After his closing remark I had to leave the room.  A few minutes later I found Tom and had a major meltdown. 

Fast forward a week or so – I see a commercial on TV about Alzheimer’s called “Two Lives” – very touching until the end when it shows the lady with AD dead in her bed and they say “and then you die.”  REALLY???  Off went my email to the AD Association for their less than sensitive commercial.  I found it on YouTube and saw that it was made over a year ago but since we DVR everything I had not seen it.  I find it so sad that an organization that is all about AD can support such an ad.  I sent a letter to the head of marketing and received a very nice response.  I commend her for responding so fast and her kind words.

 Yes, we all know that we will die but I’d like to live as long as I can just like you.  No reminders please.

For my friends and family:  I’d like to thank you again for all your support.  I want my son to know that I feel his love and appreciate that when we are together we don’t feel the need to talk about my condition but I know he will be there when I need him.  Family is important and there just isn’t enough of it for me.  I am distressed most evenings trying to sort so many things going through my mind. 

Tom’s support is loving and caring – just as he’s always been.  I am thankful that no one asks “So, how ARE you?”  On the other hand I wish I had one special person that I could talk to, someone that would understand, listen and reassure me………….a special person to go out to lunch with, one I would not have to be on my best behavior.  It sure gets tiring.

I am grateful for those who understand & I enjoy my good days.  I am loving this weather and looking forward to a few vacations.  Two will be at the beach this summer  – my “peaceful” place and another will be a month in Florida.  I LOVE vacations…they sooth my soul and for a short time I forget what is happening to my brain – tangles and plaque – BE GONE.

** Friends and family – I pray that your surgeries and illnesses will be lessened in a few weeks.  You know who you are and my prayers are always with you.

Until next month.