Overwhelming Fatigue

Tru here.

Again, no obvious “stroke” symptoms; no slurred speech or paralysis, etc.  … (at least nothing i remember).

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Complications are that i have been in rather a lot of stress due to sciatica pain, then i noticed the extreme fatigue that often follows what i personally call “an event”. 
Husband says i was “woozie” the night before, but i have no memory of that evening.  As usual after an “event”, i slept about 8 hours during the next day, and about 4 hours during the following day, with the daytime fatigue less and less in the next days, returning to my personal “normal” within about a week.  Will work on this article in short installments over the next four days, then publish.

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i have cerebroVascular disease. 
Had six “events” during 2016 (three of them within 6 weeks), and another string of events in 2019, so these symptoms are not a new experience.
Unfortunately, the few times i have shown muscle weakness or speech difficulty with an “event”, i was not able to get to the hospital while these symptoms were still showing.
So the three times i have gone to hospital for this, they have been unable to tell me if it was stroke or really any productive information — only “yes it MAY have been slight stroke, but we can only tell you that you have no “brain bleed.”  ugggh !!!

Now, unless i show obvious continuing stroke symptoms, i PERSONALLY do not bother with a trip to hospital (which deprives my brain of renewing sleep).  Instead i chew an extra baby aspirin and go to bed.  For a week or so I keep my walker extra-handy, and husband does all the walking around outside caring for chickens (where there are frequent fall risks and need to be carrying buckets with food and water).

If i go to the hospital then i sacrifice first day of sleep to renew my brain cells, because hospital waiting area has no area to lay down,
… so i cannot stay awake, but neither can i really sleep scrunched down in the chair with my neck flopped over, with all the sounds that go with hospital waiting area. 

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i am sure that IF i was showing obvious stroke symptoms when i was seen at hospital, then i would have been quickly examined and given a bed, but so far that has not happened for me.

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Nice easy listing for Heart Attack and Stroke Symptoms at https://www.heart.org/en/about-us/heart-attack-and-stroke-symptoms ;

Stroke symptoms are  B.E.  F.A.S.T.
Balance ? 
Eyes ?
Face Drooping ? 
Arm Weakness ? 
Speech Difficulty ?
Time to call 9.1.1.

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B.E.  F.A.S.T !!!

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2019 string >> https://truthfulkindness.com/2019/06/02/i-am-probably-asleep/

2016 string of “events” >> https://truthfulkindness.com/2016/04/03/wont-be-around-much/

Mayo Clinic info on Vascular Dementia is at >> https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793

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.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 18Jul2021, and “Fatigue” picture by Truthful Kindness finished 14Jul2021. .   Tags, cerebrovascular disease, dementia, fatigue, mini, person with dementia, PLwD, stroke, symptoms, TIA, vascular. #dementia #vascular.  S&S categ: na

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Can’t Hear Myself Think

Tru here on 30Jun2021.

Crying this morning. 

Thought there was no reason for my tears,
but then i realized the tinnitus (ringing in my ears) was so loud i could not hear myself think.

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i grew up near Multnomah Falls, and the Lodge restaurant was my first “real” job. 
This noise in my head sounds like the roar of a large waterfall;
the confusion overwhelms every other awareness.

My strategy tools of speaking out loud, reminding myself what task i am trying to do, or what i am trying to find … don’t work.

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Not all folks with dementia symptoms have tinnitus or other types of auditory hallucinations, but i think it is more prevalent in that population.

Tinnitus has been a problem for me since early in the process of cognitive decline (2004). 
It has been discussed with my doctor and i have done plenty of research.  including a link at bottom of this article. 

No; ear plugs do not help since the source of sound is damage inside the brain. 
Ear plugs just make the sound appear even LOUDER !!!

It is a comfort to remember that some days are just really LOUD, and other days are more manageable. 
— Gotta keep things in perspective 

LINKS:

Thinking Aloud >> https://truthfulkindness.com/2020/02/24/thinking-aloud-short-term-memory/

More info about Tinnitus at >> https://truthfulkindness.com/2018/12/11/tinnitus/ ;

.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 30Jun2021 .  Hearing image by Geralt on PixaBay and crying image by Conmongt on PixaBay. Tags, alzheimers, crying, confused, focus, dementia, noise, person with dementia, PLwD, symptoms, think, tinnitus, weep . #dementia #focus.  S&S categ: confusion, noise, tinnitus

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June Pages

.Tru here …  Extra challenges this month, so only two extra “pages” added on my website this month (in addition to my weekly Blog Entries).

 !!  Remember, Links are in colored text, not the pictures  !!

Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are in colored text, NOT the pictures.

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Scott Drevs writes about communication difficulties at https://truthfulkindness.com/index-persons-with-dementia-pwd/scott-drevs/written-vs-spoken-communication/

Floor as Family Art Project at >> https://truthfulkindness.com/bnp/part-3/bnp-3d-2012-u/floor-family-art/ ;

“June Blsm” picture by Truthful Kindness to look like embroidery. Spent 9 hours on outline then Finished with 8 additional hours on 28Jun2021.

In-Home Care

Tru here, answering a question regarding care-providers coming in the home of Person Living with Dementia.

If I was the person with caregiver coming to my house, I would like my loved ones to:

*** Make Sure the provider understands my specific type(s) of dementia, and the symptoms commonly shown by those with these types of dementia.  Alzheimers is ONE type of dementia, but there are others, and each type has symptoms that are common with that particular type of dementia.  Unfortunately in-depth training is not always given on symptoms and strategies, and hallucinations or symptoms related to communication can create big complications in ability to provide care.

*** Make Sure the provider has some background about me personally; do i gain energy by being around other persons, or lose energy from the interactions ?? (everyone has some of both, but most persons have a primary energy reaction one way or the other).  Do i enjoy interactions about spiritual beliefs and political standings … or abhor them ??  The more severe my symptoms, the more important personal background is in finding successful strategies for an in-home caregiver to provide care well, so loved ones might want to make sure TOOLS for learning those aspects of personal background are available.

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*** Research if there is something specific that is bothering me ??

Sound:  – is care-provider playing music, or wanting the TV on, when it is not my normal procedure ?? ((After all, it is MY home too, and noise can strongly increase our confusion)).
Light: Each person has light preferences; personally my window drapes are almost always open and i require lots of light, … but others may be uncomfortable in their own home because someone else is changing their preferred lighting by MORE light than they are comfortable with … or LESS light than they need.
Temperature:  i personally need higher temperature for comfort.  But someone else in the home may be challenging that need.
Belongings: moving things around from where i was previously able to find the items ??  ((i must have my things in sight because otherwise cannot find them)).
Invasion of personal space and ones’ personal body: these are intense issues.
Introvert Needs: For me, as a strong introvert; i get energy when i am ALONE, and time with others COSTS energy.  The more intimate the contact, then the more it drains my energy.  Please consider those needs to be alone, or i will have no energy in the tank for dealing with the frustrations of growing dys-Abilities and frustrations of communication symptoms.  This will probably be reflected in failing relationship with my loved ones.
Am I worried about other privacy issues – or cost ??

***  Do not lie to me, but it is okay to SUGGEST then DISTRACT .

I very much want to supply needs for others, so I might suggest that you tell me Emily would like to learn more about dementia, so will be spending some time here this WEEK (without mentioning any further time than that, unless it is a relief instead of stressor) to help me with meals while she learns.
Let me be a PARTNER in my care, as much as possible, and it would be great if “Emily” really IS interested in learning about dementia !  —
There are times that i have forgotten i have dementia symptoms, in which case she can be interested in learning something else that i have knowledge of.

Then immediately distract me with other in-the-moment type things, instead of letting me focus on future worry of extra people in my home.

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…  Photo is Take Care Bear.  “This bear really puts the “care” in Care Bear. While she may have a tendency to be over-protective, it’s only because she values her friends so much, and has made it her business to keep everyone healthy and in one piece.
When it comes to Take Care Bear, safety always comes first.”  https://carebears.fandom.com/wiki/Take_Care_Bear .  Graphic is revised from a KidCore sticker by Jackie at PicsArt .

Suggest checking the Symptoms and Strategies Links at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/ .

Other Links:

Types of dementia >> https://truthfulkindness.com/about/d-info/ ;

As an EXAMPLE, my favorites and my memoirs give background info on ME; what tools are available to share YOUR background ??  My “Favorites” at >> https://truthfulkindness.com/about/about-me/favorites/  … and “Memoirs” at >> https://truthfulkindness.com/bnp/ .

Change in Lighting Needs at >> https://truthfulkindness.com/2020/01/13/change-lighting-needs/ .

Introvert vs Extravert and Energy at >> https://truthfulkindness.com/2016/05/31/introvert-pwd-need-social-activity/ .

.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 27Jun2021 . 5hrs invested +3hrs on graphic; Picture is Take Care Bear . Graphic is revised from a KidCore sticker by Jackie at PicsArt .  Tags, alzheimers, caregiver, dementia, in home, person with dementia, PLwD, strategy, symptoms. #dementia #caregiver.

MyFreeCopyright.com Registered & Protected .  Photo is Take Care Bear.  “This bear really puts the “care” in Care Bear. While she may have a tendency to be over-protective, it’s only because she values her friends so much, and has made it her business to keep everyone healthy and in one piece. When it comes to Take Care Bear, safety always comes first.”  https://carebears.fandom.com/wiki/Take_Care_Bear .  Graphic is revised from a KidCore sticker by Jackie at PicsArt .

 

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Celebrate Success vs Despair

Tru here.

It has been an extra-rough week for me, and lately it feels like almost everything i try to do almost super-naturally goes wrong.  … which means that i must avoid despair and encourage myself by celebrating when i attempt a “normal” basic task, and SUCCEED; avoiding an extra hour or two of work from messing things up.

With recent minor toe surgery and ANOTHER subsequent infection, my routines have been a bit disrupted; distraction of pain and need to avoid swinging my foot around by walking (and knocking toe into everything from table legs to walls and doors); no going outside with my chickens; Husband says i am not drinking enough liquids (which is an extreme change from my usual challenge of drinking too much and flushing nutrients out of my body), etc.

My usual strategies are not working so well right now, in so many categories.

… and i am needing to take a pain pill every day (before flushing of toe), so that intensifies my thinking problems even more extreme.

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no matter what i try to DO, whether physical or just laying on the couch — i create problems.  When i finally do something without creating extra problems (successfully washed my mug as preparation for morning) i CELEBRATE !!!  

As a strategy to avoid despair and depression, when i remember something, … i celebrate. 
i reach over with my right hand and pat my left shoulder with a PHYSICAL “atta-girl” touch, and my ears will HEAR the words “good job”.  … and my husband smiles and will often join in with “Yes, that was good remembering” … or good something-else of whatever i did right.

In the prevailing “negative” moments of dys-Abilities, Recognizing these “positive” moments of ABILITY are crucial to my well-being.

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LINKS:

Univ of Penn ((chapter exerpt) at >> https://penntoday.upenn.edu/news/breaking-cycle-despair-people-dementia

Mayo Clinic at >> https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048362

.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 20Jun2021 .  “Look for Success” graphic made by me, Truthful Kindness; finished with 10hrs on 17Jun2021 and 18Jun2021 revising the “Look for Joy” graphic that i made earlier. “Celebrate” dancers graphic is Silhouettes from multiple creators on both PixaBay and PicsArt, compiled by TLK 02Oct2019. Tags, alzheimers, dementia, depression, despair, encouragement, person with dementia, PLwD, strategy, success, symptoms. #dementia #success.

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For Best Concentration NEED Frequent Toilet Trips

Tru here.

For most people, Best concentration happens when there are no distractions.

i am trying to remember to make FREQUENT trips to the bathroom, because Pressure in bladder or bowels can distract from concentration needed in other everyday processes. 

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Until dementia symptoms i did not need to think about swallow process, or walking, reply to casual comment, etc.   … but now that is changing. 
Discovered that each of those processes requires concentration, and i need to have full concentration on my priorities, so i need to avoid trying to work on something while my brain is distracted by holding in body fluids or solids.

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Now, whether i feel the NEED or not …
i make a trip to the bathroom BEFORE eating or drinking
(so that all my concentration can be devoted to swallowing). 
i make a trip to the bathroom BEFORE taking time to sit and talk with my husband
(so that all my concentration can be devoted to communication). 
i make a trip to the bathroom BEFORE sitting down to work on a blog entry,
and before going outside to walk around while doing chores, (less likely to fall) etc. 
… This allows maximum focus for whatever task is at hand.

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i am trying to establish the frequent bathroom trips as a ROUTINE now, while i still have this ability to establish routine on my own.  i probably make a bathroom trip most every hour.  This avoids the pressing need of a bathroom trip as distraction.

When i forget, My care-Partner might remind me to wash my hands before we sit down to eat, and while we are there i should stop at the toilet before washing my hands. 

i recognize that change is inevitable.  In later stages, of course, my care-Partner will be joining me on the trip to wash my hands and stop at the toilet.

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Side-notes:

i have also noticed the benefit of side “grab bars” on each side of our ADA toilet; 
Along with facilitating body movement to sit or stand, these bars can be useful to help empty bladder and bowels. 
We THINK we are done on the toilet, but if i grab the bars and bear down with pressure pushing or pulling … i discover that i was not done after all.  This may feel like “too much information” but has been very helpful for me. 
Running water in the sink can sometimes be helpful for emptying bladder.

Maybe if i go to the bathroom and empty my distractions then i will think of a clever close for this article, LOL .  

LINKS:

https://www.plumbingsupply.com/creating-a-dementia-friendly-bathroom.html

from a doctor >> https://www.psychologytoday.com/us/blog/managing-your-memory/202101/how-manage-incontinence-in-dementia ;

.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 13Jun2021, but began this article 21May2021.  Toilet graphic compiled from pieces at PixaBay. Tags, alzheimers, concentration, dementia, focus, hygiene, incontinence, person with dementia, PLwD, strategy, symptoms, toilet. #dementia #focus.

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Dementia Stages and Inconsistencies

Tru here.

 

. i am often asked about this so …

3 stages: i like the version shared at >> https://www.alz.org/alzheimers-dementia/stages .

5 stages/CDR:  Clinical Dementia Rating evaluates cognitive and functional performance in six areas: memory, orientation, judgment & problem solving, community affairs, home & hobbies, and personal care.  Table 6.2 at >> https://www.sciencedirect.com/topics/medicine-and-dentistry/clinical-dementia-rating .

7 stages/GDS: The Barry Reisberg scale is 7 stages, also known as the GDS – or Global Deterioration Scale for Assessment of Primary Degenerative Dementia. >> https://www.fhca.org/members/qi/clinadmin/global.pdf . (SUMMARIZED here in a strictly “Alzheimer’s” context >> https://www.alzheimers.net/stages-of-alzheimers-disease ).

7 stages/FAST: The Functional Assessment Staging Test uses activities of daily living (ADLs) to determine stages of ALZHEIMER’S, and also co-relates score of MMSE (the short mini-mental screen given at doctor’s office).  >> http://www.mciscreen.com/pdf/fast_overview.pdf .

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With the more complex staging scales, Most of us living with dementia are in several “stages” of dementia simultaneously, because our swiss-cheese “holes” in the brain create many inconsistencies.

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INCONSISTENCIES:

i speak haltingly, but i can still speak quicker than what i can understand someone else speaking. 
i think recently my words flow better typing with a keyboard than they do flowing out of my mouth verbally

My ability to write is much better than my ability to understand what i read.  
i started typing before age 10, and by 12 years old i was typing forms and letters for our family business.  so i still write/type a blog entry almost every week, but when i am interrupted while writing a paragraph, that paragraph often makes no sense to me when i read it back to myself to refresh my memory in order to finish the paragraph.  … So my ability to write is much better than my ability to understand what i read.  

Every person had things they did very well, and sometimes those abilities carry over to better functionality in those particular areas, which can distort guesses of dementia “stage”.  (Altho i was in accounting, and number-ability is one of the first things i lost.)

Personally i have Loads and Loads of dys-Abilities, but my ability to figure out a graph or pictorial representation is still above average. So i cannot understand the WORDS when husband tries to tell me something, but if he can make it into a picture then i can understand.  My ability to understand visual concepts is much better than my ability to understand spoken (audio) concepts.

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There are huge “stage” inconsistencies in dementia abilities, and also, some types of dementia carry the characteristic of tremendous variation of abilities throughout the day, that are not consistently shown on any particular day (thinking Lewy Body here but there may be others).  LBD can hit many ability levels during any given day, with strong abilities at unpredictable times.

On the 7-stage GDS scale, lack of remembering grandchildren’s names and last names of married daughters, along with not recognizing my husband would have put me in stage 5 for past 5 years or so, and my other abilities probably fit more in stage 4.  But i have very good coping strategies and my last testing about 3 years ago still indicated Mild Cognitive Impairment (stage 3 on GDS scale).  of course my Grandmother tested well enough that she did not get a dementia diagnosis until her Activities of Daily Living were quite impaired  and my mother had been caring for her a couple years (probably about 2000).

Personally, i think the 7-stage versions of dementia progression cause much more confusion than they help.  So i think of dementia in 3 stages instead;
there is “early-stage” with few symptoms, and strategies for any particular symptom have only needed revised a few times. Many folks can still drive in early stages (but i suggest frequent evaluations to make sure they are still safe).
Middle stages cover lots of ground,
… then end-stage (also known as late-stage).

..

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LINKS:

 

Mayo Clinic “Stages” at https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448

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.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 02Jun2021.  .Gauge graphic by Mohammed Hassan at PixaBay at https://pixabay.com/vectors/risk-risk-management-risk-assessment-3576044/ … then i patched over the word “risk” .   Tags, alzheimers, cognition, dementia, person with dementia, PLwD, progression, rating scale, stages, strategy, symptoms, .

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May Pages 2021

Tru here.  Been a HARD month of change and loss.  In addition to my weekly Blog Entries, these “pages” were added on my website during May 2021.

 !!  Remember, Links are in colored text, not the pictures  !!

Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are in colored text, NOT the pictures.

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My favorite Links for Memory, Family Recognition, etc at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/memory-links/

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Jennifer Bute, with “Changes after Self-Isolation” at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/changes-isolation/

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Dementia Mentors’ member Marsha York will be missed >> https://truthfulkindness.com/memoriam/marsha-york-memoriam/

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Loss of Smells and Taste

UPDATE: i could still fully taste fruit when i began preparing this blog entry last week, but during the past week am losing the taste for fruit also … i just get brief tantalizing tastes of a moment of two … then another moment.  But all the in-between is lost.  … and instead of the complex realm of a specific taste (like strawberry) i am getting the acid but some of the other tastes are gone, which totally changes the way a strawberry tastes.  Tremendously discouraging … altho not too surprising.  ***

Tru here.

i have always been VERY oriented to smell. 
As a child, my nose was used for sniffing out ants and several other things in the household. 
as i got older it was my privilege to create personalized fragrances for family members. 
Then came dementia symptoms, and after years some changes in my ability to smell.

i noticed a few scents that no longer had ANY smell for me. 
First was spoiled meat of the venison-type about 6 years ago (~57 years old)
then i lost the smell for 3 of the essential oils used in my personal fragrance about 4 years ago.
… then this, that, and any-other-thing (including body odor and ants, LOL). 

Now (in 2021) there are few smells that i can actually discern.  i realize those particular smells are also probably on short-term borrowed list, so those smells are highly valued.

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… and the same is true with tastes. 
About 3 years ago i noticed that i no longer appreciated that wonderful yeast-y taste — the smell and taste were just GONE. 
Then about a year ago i lost the taste of CHOCOLATE.
Noted no smell or taste for chicken beginning the first week of March, and hamburger shortly afterward,
Now … MOST tastes are gone.
i cannot smell or taste the standard varieties of meat, or eggs, or cheese, or gluten-free bread, etc
— but i can still smell and taste raisins, mandarin oranges, and strawberries.  

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So the main thing i still have is TEXTURE, and sensations of Sweet and Salty, along with dwindling taste for fruits.
i still enjoy the rough specific-ness of thick-cut oats (even though i no longer taste the oats) — so i add a few more raisins. 
i no longer TASTE the soup, but i still enjoy the wonderful combination of textures when my thick cauliflower soup is combined with hamburger crumbles., etc. 
i cannot taste the chocolate or the coffee in my coffee-chocolate protein drink, but
we still add the coffee because i get a brief after-taste of the cold-brew (not bitter)
and we still add the chocolate because i like the creamy smoothness of TEXTURE.

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This is a huge change of focus in eating, but it is also time to decide..

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Continue as before … OR make changes.

On special times (like breakfasts with Dad, after spending the night with him on the train engine) i would eat rich french toast made with thick-cut slices of bread or fluffy waffles.  Either were topped with hot fresh apple sauce and cold ice cream.  i have denied myself foods like this for about 10 years – because i have celiac disease and also going for the Keto LifeStyle (which better fits with my high needs for protein).  … But now i am quickly losing the receptors for tastes.

if i had known that i was this close to losing all taste sensations in the dementia process, i think i would have splurged more often in the past two or three years. 

if i had it to do over again, after losing 2 or 3 tastes, i would probably get glutened (on purpose) and start ENJOYING those tastes while i still had the ability to enjoy them (even at the cost of substantial gluten discomfort).  i realize the gluten TEMPORARILY intensifies cognitive symptoms for those with celiac disease … but this way i totally missed out on those tastes.

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So i have decided to get glutened AND splurge with blood sugar (within certain boundaries). 
it is time for evaluation of which tastes i am still able to enjoy – including those tastes from foods with gluten. 
Then i can better decide how often i will balance Best Practices … with taste desires.

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Wrote the above on May 16 and 17May 
PS after being glutened: 
17May2021: Cannot taste anything of pizza, except the pineapple; no taste of crust, tomato paste, cheese, italian seasonings spices, etc.  
17May2021: Discovered i cannot SMELL corned beef (which strongly reduces the taste, and mostly cannot taste it, but in the very far corner of right side, i can taste corned beef very fleetingly. 
18May2021 now losing taste for raisins; just taste very briefly after 3rd bite … then taste is gone again. So frustrating because i could taste them well a few days ago. 
18May2021 can taste something in SloppyJoes, but for very few moments. 
19May2021 can taste something in Grilled Cheese sandwiches (maybe the butter??) and creamy Campbell’s Tomato Soup (seasonings??).
20May2021 Absolutely no taste left in my Coffee/Chocolate protein drink — but i still like creamy texture and temperature. 
21May2021 Strawberry taste has changed from 2 weeks ago; no longer able to taste the good part, and most of what is left is an acid-type taste. 
21May2021 No taste of French Toast.  No taste to whipped cream — texture but no taste.  And no taste to sugar-free syrup. 
21May2021 Able to taste the sauté onions in Corned Beef hash with Sweet Potatoes. 
22May2021 Able to taste Mashed potatoes from Finger Gold Potatoes WITH peels
22May2021 Able to taste the gravy with flour, smoke flavor, garlic, sage, and Campbells’ French Onion Soup. 
23May2021 Able to taste smoked beef ribs made with hickory and rosemary.
03Jun2021 Able to taste Ranch Dip, but not much of Reuben Sandwich or french fries.
04Jun2021 Able to taste huckleberry jam and condensed Peanut Butter powder.
05Jun2021 Able to taste BBQ Salmon with Asparagus.
08Jun2021 i was able to taste BBQ steak. 
13Jun2021 Able to taste various fruit IF similar fruits are gathered together; cannot taste ONE grape, but THREE grapes i can taste.  14Jun2021 Able to taste corn tortillas and corn on the cob.  15Jun2021 Distorted grape taste today.

Jul2021 Able to taste Ritz Crackers, Golden Grahams (dry cereal) and Corn Chips.  Able to taste Yellow Cake Mix (turned into tropical fruit upside-down cake) for breakfast. Able to taste corn-on-the-cob..

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LINKS:

Fragrance Craft and my Nose at >> https://truthfulkindness.com/2016/10/28/fragrance-craft-and-my-nose/

Sensor for Body Odor at >> https://truthfulkindness.com/2018/03/26/sensor4-body-odor/

from a doctor >> https://www.psychologytoday.com/us/blog/managing-your-memory/202103/when-dementia-diminishes-smell-and-taste

Might check out “Food/Eating” category of my favorite Links for strategies, alphabetically by symptoms at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/ .

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.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 23May2021.   .  Chocolate cake and strawberries photo by Draws And Cooks on PixaBay at https://pixabay.com/photos/cake-chocolate-cute-eat-food-2856551/ . Tags, alzheimers, dementia, eating, food, person with dementia, PLwD, smell, strategy, symptoms, taste.

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Early Swallowing Problems

Tru here.

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i have been dealing with slowly progressing dementia symptoms for over 20 years now.  New symptoms are always traumatic.

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… in past week have noticed unpredictable problems swallowing.  Not at any specific time of day, etc.
First it was SOMETIMES when swallowing pills, then sometimes when swallowing just a hot or cold drink with nothing added. 
In my case, the drink is not “stuck” in the throat, instead, i am unable to trigger the muscles to begin a “swallow” routine.

For ME right NOW, swallow problems happen when i am trying to do something else at the same time

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A few moments ago i got up from sitting position and realized urgent need to go to the bathroom, but i was also trying to swallow the drink that was already in my mouth. 
Trying to hold the pee in … while swallowing … did not work so well.

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So my husband told me that i am functioning better than 80% of the population;
he said “Dont be so hard on yourself.  You are trying to do 3 things at one time. 
1) Walk to bathroom 
2) Hold in the pee
3) swallow the drink in my mouth. 

— He thinks i am doing exceptionally well, because most people cannot walk to the bathroom and hold the pee in, let alone do something else at the same time.  ((LOL))

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 ***  in the future, i will try to make sure i am not trying to do anything else (at the same time) BEFORE i put the drink in my mouth.

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Difficulty in swallowing is called “Dysphagia” >> https://en.wikipedia.org/wiki/Dysphagia .

VeryWellHealth mentions on DysphaGia and DysphaSia (impaired Language) ; “Both of these conditions are caused by neurological damage to the brain that comes from an injury or a stroke. Both dysphagia and dysphasia are treated by speech therapists and both have to do with a person’s ability to control muscles in the mouth and throat.  >> https://www.verywellhealth.com/first-aid-phraseology-dysphagia-vs-dysphasia-1298200 .  i realize that may be a bit too generalized, but here is a Link with much more detail >> https://gi.org/topics/dysphagia/ .

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… you might also want to check the “Swallowing” section of my favorite Links for strategies, alphabetically by symptoms at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/ .

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.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Text Copyright © Truthful L. Kindness on 16May2021. Throat graphic from Nehemie at CleanPNG; https://www.cleanpng.com/png-sore-throat-pharyngitis-clip-art-sore-1546542/;  .   Tags, alzheimers, dementia, dysphagia, person with dementia, PLwD, strategy, swallowing, symptoms, throat.

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