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The Journey Has Begun…

 I can’t say with any certainty when it began. 

     As a member of the Church of Jesus Christ of Latter Day Saints, firm in the faith, I understood none of us are exempt from trials that will test us.  But I also knew many of our trials are a consequence of prior bad choices.  Because I was born with a strong healthy constitution and had a health conscious life style, complete with nutritional supplements, herbs & essential oils I felt like a candidate for one who could live to witness the second coming of Christ.

     John & I raised ten children of our own, and as circumstances permitted we were professional parents to numerous special needs young people, then for nearly 16 years we operated a licensed Family Group child care in our home.  We lived on an acre of land and had an amazing garden and all sorts of fruit trees and berries.  I felt like my life style afforded me all the exercise I needed.

In the spring of 2015, I noticed it was difficult to move around in the cherry tree while picking.  But when I climbed into the apple tree to string lights for our youngest daughter’s wedding reception in June of 2015… I knew my days of tree climbing were over.

      After moving to Lady Lake, I transitioned to a holistic Dr. stating I had lots of abnormal symptoms. None, by themselves were serious, but I wondered if together they might be indicative of a bigger problem? April 30th 2018, by process of elimination and observation, Dr.Kraucak determined my diagnosis to be Parkinson’s Disease. For me, having a name meant I no longer needed to wonder why I had such a soft voice and drooling, why my hands were so weak, while playing family games, I couldn’t hold cards to shuffle and my handwriting was so small and unintelligible. A name meant I now understood why I felt like my feet struggled to keep up with my head and I couldn’t balance enough to participate in a water exercise class, etc..

  It has taken NINE months since I received the name to target my research efforts… but now I am ready to begin to blog.

Welcome 

I am DELIGHTED to have you here. If you haven’t done so already, please browse the website to learn more.  I will try to make it easy for you, by linking my blog entries to the INDEX page,to facilitate your search for specific topics.  

Don’t forget to click on FOLLOW so you stay up to date on additional new content!

      I have already learned so much on this journey with Parkinson’s disease. I saw a blog called Parkinstand hosted by a lovely African lady seeking to locate other people of African ethnicity.  I was prompted to create a forum where people of my faith could share their experiences to strengthen one another.

I can’t wait to share all that, and more, with you!

Stay tuned.

 

Following

To any of my followers who are caregivers dealing with a PwP plus dementia
I’d like to suggest a blog by a caregiver who provides such positive insights and suggestions to help a caregiver to cope he goes by AdjunctWizard
I just wanted to share an example of his writing :follow him.

Cheryl will start to tell a story about an incident that occurred earlier to me as though I am someone else. In the story she will refer to me in the third person as “your dad.” I think that she thinks I am one of our children but I could merely be a nice someone with her because sometimes she refers to me as “Paul.”
I used to resist this a bit and point out that I was me. Lately I quit doing that. I quit doing it because it aids me in finding where she is in her head and it serves no useful purpose other than to make me right and her wrong.
Typically it is a late afternoon discussion as we head somewhere for dinner. In the car she will start with, ” you know your dad and I …” After she gets her thought out I can respond with, “No kidding, I didn’t know that” or some other suitably benign response. If there is more to the story she will go on.
There is so much to learn on this road of Parkinson. If you have not tried it, take a deep breath, enjoy the ride, the scenery and the stories along the way. You cannot be sure of the weather, road conditions or the vistas ahead. Be one with the journey.

‘Go to https://adjunctwizard.com/2022/05/11/more-about-dementia To see this offering by an eldercare organization.

t

livingwithdementiablog wordpress attributde to Norman McNamara)

Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith

Alternative inspiration

A caregiver’s blog led me to another Caregiver’s blog when he wrote: Whenever I am looking for alternative inspiration I read this blog.

https://parkinsonscaregivernet.wordpress.com/

Here are a couple excerpts from some of her entries.

……………………………………………………….

Less nagging – yes, I used the word nagging. Reminding. Warning (“don’t put your cup so close to the edge of the table”) Advising (“you need to use your walker”) Mentioning, emphasizing, etc. (Yes, I used the thesaurus!) Our loved ones will begin to tune us out when we talk too much. How about this – let’s talk less and do more. We can always walk over and move the cup away from the edge, and we can take the walker and put it in their hands without even saying a word. It may mean we have to DO more, but we can do it with a smile that promotes peace.

With decreasing cognition comes the loss of ability to reason, so we should not be surprised that our loved one is less able to cope with anxiety and frustration. That knowledge helps us understand the need to keep them from certain situations where those things might occur. We do this out of our love for them and self-preservation!

Not for Everyone

A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?

I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.

So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.

At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas?
What are the advantages of moving into a nursing home?
1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied.
2. You won’t have to clean house.
3. You won’t have to do laundry.
4. You will have physical therapy available.
5. You will have activities available.
6. You won’t have to remember when to take your meds.
This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself.
Before you go, be sure to pack your activities
Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop.
1. Your cellphone & charger.
2. Your laptop. (Check to make sure you will have internet access.)
3. Your coloring books & colors.
4. Your music & something to play it on – headphones or earbuds are best.
5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device.
6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather.
7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather.
8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes.
9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each.
10. A good grabber for reaching things.
11. Paper & pens & pencils & pencil sharpener.
12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember.
Things you will Not need:
1. Furniture
2. Knick knacks
These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them.
Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it.
Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.

How to Tell

I am posting part of an article: “Lewy Body Dementia: Causes and Symptoms” which I found in the resources section of ‘MyParkinsonsTeam’. I learned how to ‘tell the difference between Lewy body Dementia and Parkinson’s disease dementia (PDD). I am not posting the following sections of the article: Diagnosing, symptom management (with four subtitles), and building a community.

Lewy body dementia (LBD) is an umbrella term for two related types of dementia — dementia with Lewy bodies and Parkinson’s disease dementia (PDD). Dementia is a disease that progressively impairs a person’s ability to think, reason, remember, and function. Although these two conditions have overlapping features, there are also important distinctions. Understanding LBD causes and symptoms, as well as how its two subtypes, dementia with Lewy bodies and PDD, differ from one another is critical for proper diagnoses and shortening the time to start treatment.

Read abHow to tellout the diagnosis and treatment of Lewy body dementia.

Prevalence of Lewy Body Dementia

After Alzheimer’s disease, LBDs are the second most common cause of dementia in people over 65 years old. Scientists are unsure how common these dementias are. In one review of studies on dementia with Lewy bodies, its prevalence in total cases of dementia ranged from 0.3 percent to 24.4 percent, depending on the study. This inconsistency is probably because scientists are only just beginning to understand dementia with Lewy bodies and to differentiate it from Alzheimer’s disease. Another study estimates that at least 75 percent of individuals who live with Parkinson’s disease (PD) for at least 10 years will develop dementia.

Causes of Lewy Body Dementia

LBDs are poorly understood but are thought to be characterized by the buildup of Lewy bodies in the brain. Lewy bodies are groupings or clumps of badly formed (misfolded) proteins called alpha-synuclein proteins. Healthy alpha-synuclein proteins are normally found widely throughout the brain and are thought to play many roles, including participating in plasticity. This means that they affect how brain cells communicate with one another and change in response to a person’s experience. However, when these proteins misfold and accumulate, the result is Lewy bodies, which lead to cell death in the brain.

The type of LBD a person has is determined by where in the brain the Lewy bodies first begin forming. When Lewy bodies first begin to form in the cortex, dementia with Lewy bodies is the most likely result. These initial protein deposits in the cortex lead to early cognitive changes, such as inattention. When the Lewy bodies first deposit in areas of the brain more related to motor control and movement, such as the substantia nigra, PDD is the most likely result.

But what causes these Lewy bodies to form in the first place?

Genetics or hereditary elements likely play a role. The following genes are thought to be involved in the spectrum of disorders related to PD, including dementia with Lewy bodies and PDD.

  • APOE
  • SNCA
  • LRRK2PD

The APOE gene, which makes protein apolipoprotein E. has been associated with dementia with Lewy bodies. Specifically, dementia with Lewy bodies has been associated with the presence of the ε4 variant, as has Alzheimer’s disease. PDD is not associated with this gene variant.

These diseases have also been linked to mutations in SNCA (a gene controlling the production of alpha-synuclein) and LRRK2 (a gene that controls the production of a kinase protein). LRRK2 is a particularly interesting gene, as mutations at LRRK2 are linked to the accumulation of both alpha-synuclein and tau protein (another abnormally folded protein that builds up in Alzheimer’s disease). However, more research is needed to understand the complicated role of these genes and how they may be interacting. Alterations in these proteins can lead to devastating consequences for individuals with Parkinson’s disease.

Lewy Body Dementia Signs and Symptoms

There are many signs and symptoms of LBD. A major hallmark is cognitive impairment. It is defined in the most recent version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as cognitive decline in one or more areas (complex attention, executive function, learning and memory, language, perceptual-motor, or social cognition). People with problems in these areas might be forgetful, have problems paying attention, have trouble with problem-solving, be unable to learn new facts or skills, have difficulty with speaking or forming sentences, or have behavioral changes. These symptoms can range from mild to major, and in order to make the diagnosis, they must significantly impair a person’s day-to-day functioning.

Cognitive impairment isn’t the only hallmark of LBD. People with dementia with Lewy bodies and PDD may present very differently because of how (and where) the Lewy bodies deposit in the brain.

Dementia with Lewy bodies is characterized by three main features, according to the DSM-5:

  • Problems with cognition (including marked variations in attention and alertness)
  • Visual hallucinations
  • Spontaneous features of parkinsonism (motor or movement symptoms), which begin after the cognitive symptoms appear

Other features that can suggest dementia with Lewy bodies are:

  • Rapid eye movement sleep behavior disorder
  • Sensitivity to antipsychotic medications

PDD symptoms are similar, but the timing is different. The important difference is that in PDD, parkinsonian movement symptoms (slow movement, shuffling walk, tremors, shaking, rigid muscles, muscle cramps, balance problems) start before cognitive symptoms and dementia appear.

Hallmark symptoms of both diseases include:

  • Visual hallucinations — Seeing or hearing things or people that aren’t there
  • Movement disorders (parkinsonism) — Slowed movement, rigid muscles, tremor, and a shuffling walk
  • Cognitive problems — Confusion, poor attention, visual-spatial problems, and memory loss
  • Sleep difficulties — REM sleep behavior disorder and acting out dreams while sleeping
  • Emotional problems — Depression, anxiety, and apathy

Once dementia develops in someone with Parkinson’s disease (resulting in PDD), there are no clinical or biological differences that can reliably distinguish it from dementia with Lewy bodies.

Oven wisdom

It seems only prudent of me to turn the responsability of putting items in or out of the oven to someone else who has better balance… since I do most of my falling when I lean over. Like last Wednesday, I leaned over to comfort our shepherd, lab mix by putting his ‘Thunder shirt’ on him, and found myself sitting on our closet floor.

I enjoyed reading this post from the AdjunctWizard’s Blog

My Own Reaction Surprises Me by AdjunctWizard. She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.She agreed.We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)Scary activity for someone not steady on her feet.I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.

No Silver Bullet

As I have previously indicated, I belong to a forum where people with PD ask questions and share experiences. Recently Eliza-Jane asked:

‘I have lost my voice to PD. I saw a ENT Specialist who advised me that my vocal chords weren’t closing properly. She suggested having a filler injected. Has anyone had this done?’

In reviewing the responses, I followed the rabbit hole to discover a youtube group…. No Silver Bullet 4 PD And this very informative Video. I learned quite a bit from viewing it.

Always striving to have wisdom to know how to implement the knowkledge I obtain.

Sue

Tips and Tricks

Steve, of American Fork wrote:

7:55 AM and I had _almost_ slept through the night when the phone rang. I failed to get it or even locate it on time. Then I remembered: It was delivery day for the new flooring for the basement apartment. That was almost certainly the delivery driver’s “courtesy call” meaning he could be here in minutes. . Panic. I tried to orient myself towards the garage, but couldn’t. I was still meds+ 1/2 hour away from being able to turn at will. Then, instinctively, I kicked my shoes off and went on my way. As I had done a thousand times before. Whoa! Does anyone else ditch the halting component (at least temporarily) by taking their shoes off? Maybe something to add to the “Tips and Tricks” section of your Parkinson’s owners manual

Advocate for yourself

I cry too easily, I can’t read anything aloud, with even a hint of sadness 0r stress or I start to cry and then I can’t talk… I am a silent cryer. When I attend a reception line at weddings, I cry. When we would watch a tv show as a family, the children delighted in catching me crying over silly things, and reminded me that it wasn’t real. I told them my bladder was simply too close to my tear ducts. I have never been depressed. I am the eternal optomist.

I appreciated the sentiments expressed by SilentEchoes in a forum I follow: She shared…..

“Pathologic tearfulness (emotional incontinence) is a disorder of emotional expression rather than a primary disturbance of feelings.”

“It’s not you – it’s your brain injury. I cry easy – too easy. I often lose credibility with the doctor when it happens to me. The imbalance of power in the exam room is very real.”

“A neurologist told me that the fact I was crying in his office was evidence of mental illness. When we left my husband said, we’re never going back to that a$$h*le. When you understand what is going on in your brain, you’re better equipped to advocate for yourself. This is much harder to do in the early phase when you’re baffled by the weird stuff you’re experiencing.”

“Gaslighting and psychological abuse is never okay; and especially not in the context of the medical setting.”

“Emotional incontinence is not associated with depression, impulsiveness, memory impairment, or executive dysfunction.”

“Pathologic tearfulness is not a manifestation of psychiatric illness, it reflects abnormalities in brain networks that control emotion regulation beyond the hippocampus. The condition may be present in other neurologic disorders, this article provides novel insights into the neural basis of affective control and its dysfunction in disease.”

https://n.neurology.org/content/94/12/e1320

“The more you know the better you can advocate for yourself.”