by Sharron Warren

Posts tagged ‘Holiday’

The Tip of the Iceberg

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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

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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

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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?

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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 !!

 

 

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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.

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Blessing for the New Year – 2017

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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!!

 

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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??

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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.

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A JOYFUL MONTH

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In these days of uncertainly I wanted to share a wonderful experience I recently had.  The readers of my BLOG are such giving people and I found there are others!  On our drive a couple of weeks ago we stopped at a WaWa for gas and a special coffee for me.  While I was checking out the cup sizes a tall man about 50ish said “Go for the super large, it’s cold out there” he left and I filled up the super large cup.  I went to pay and cashier said my coffee was already paid for.  My jaw dropped and I almost cried. There are good people out there.  Now I will be looking to pay it forward.  You should too….what a feeling.  Giving should not be left just for Holidays.

PS:  I was able to pay it forward in Jamaica to our airport bus driver. I’m not done.

At church we picked 2 boys from our church’s Angel Tree to make Santa a reality. We could have taken one child or a senior but 2 local brothers age 8 & 9 just tugged at my heart.  Our gifts will be all they get.  Can you imagine?   Please think of doing this for a child or a Senior.  If you can not do it alone share with someone, have friends and family contribute.  Giving is an awesome feeling.  Giving is not just for the Holidays.

Planning

I know I’ve done this topic before but I find it so important especially with the New Year right around the corner.  It will make a nice resolution.

We have a plan.  We made our plan almost immediately after my diagnoses.  I have thought about the day I was diagnosed many times and the way I would want to live my life.  If Alzheimer’s runs in your family then you have a longer time to plan.  Make that plan.

IT will not get better, IT will not go away and IT will kill you as there is NO cure. You need to plan, not only emotionally but financially.

One of my top requests is to remain independent for as long as possible.  Most of you know that I still remain opinionated, outspoken and feisty. Good for me!

 

I thought I’d give you the definition of DIGNITY as it seems lost to some.

Dignity

the state or quality of being worthy of honor or respect.

“a man of dignity and unbending principle”

a sense of pride in oneself; self-respect.

“it was beneath his dignity to shout”

self-respect, pride, self-esteem, self-worth

“he had lost his dignity”

My number ONE request towards the end is to preserve my dignity.  Please do not EXPLOIT me or others with Alzheimer’s.  This is being done to some and I am appalled that “loved” ones are resorting to begging for money using the person with Alzheimer’s as the “Poor Pitiful Me.”  Where did the dignity go?  Where did the planning go?  If you did not plan then I feel you have no right to exploit your loved one for any gain.  I am so sad.

All of us with Alzheimer’s should have our dignity respected, especially in the later stage.  At this point we do not know our loved ones and we are therefore unable to make decisions.  Dignity matters.  Please understand that.

Dignity always matters no matter what your life problems are.

 

So Sharron how are you doing?

I feel really really well.

We had a wonderful vacation in Jamaica and my Alzheimer’s behaved!!  HA!! and I gained weight – UGH!!

I know I’ve said this before but as my Alzheimer’s progresses and hard plans are being made connecting with family is important.  I am sad that so many remain with their heads in the sand.  I wish they would make that leap. It also saddens me to reach out and get nothing – you know who you are.  Why is connecting to family so difficult?  Are they afraid they will catch my Alzheimer’s?  Do they not care?  I reached out to three family members and no one responded.  I find this so sad for them.

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The Holiday Season and I do not get along very well so I will try to have my best leg forward (that would be my left leg).  Even though I do not like large crowds I do envy families that celebrate the holidays by being together for days, cooking together and enjoying their time with family.  I have fond memories of the past that I can draw from – my parents were the best and were around not just for Holidays but all year, every year.  My door was always open.  It was bring on the wine then start cooking.  My little sister, I miss those times.  My sweet son, I also miss those times and hope you will always remember.

I think the best part of Decembers for me will be another leg surgery.  YEA!!!!  Not sure it will be so grand for Tom.  Sorry Big Redd.

My Holiday will be spent in bed and what a joy that will be.  I am praying that the removal of the two plates and 18 screws will alleviate my pain and improve my movement.  Prayers are always needed.  Therefore…..all I want for Christmas is a leg with no pain………..it’s been long enough.

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Is that a sexy leg or what?

After all the joys of this month we start a new year.  Please pray for a safe and happy year.  This has been a rough year for so many.

Blog pic Dec. 2015

 

 

Love must be sincere. Hate what is evil; cling to what is good.  Be devoted to one another in love. Honor one another above yourselves.  Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.  Be joyful in hope, patient in affliction, faithful in prayer.  Share with the Lord’s people who are in need. Practice hospitality.

 Be kind and be grateful

 

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