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

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.

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

Pilates Concepts

The Parsonson’s Support Group I joined had a marvelous guest speaker today.

Mr Yuiska, PT, Sports Physical Therapist although retired he has a free website. And for the people in the Villages, he offers a free exercise class each Monday.

His Mantra: “Sit Less..Move More”

http://www.pilatesplusforboomers.com

He has so very many training videos and helpful tips. PLEASE go pick his brain. I am going to copy a little of hi message he shared today: “Learn to improve balance and decrease falls, strengthen yoour body and improve your lifestyle utilizing Pilates core stabilization/proper posture.”

What is Pilates Posture?? stand erect, by elongating the spine, keep the head on the shoulders, not the chest. Breathe out and pull belly button upwards/backwards to the spinepulling pelvis up and level. Y\Think of the pelvis as a bucket, keeping it level. Breathe out maintaining the level pelvis.”

He also gave this advice: View Video: http://wwww.homeability.com click on “Ihow to get up from the floor MacGyver style. Getting off the floor.”

Eyes as diagnostic tools for PD?

Yesterday, John & I enjoyed a lunch with two other Parkies and their spouse/ caregivers. Ed & Jane have put together a slide show presentation giving hints and tips for living with Parkinsons. I looking forward to attending the discussion. They are currently writing a book telling about their Journey. Jane had early onset PD… so the illness progresses more slowly, but after 30 years She now has two Deep Brain Stimulators in her brain and is in a wheelchair. They recommended the place in Gainsville I had gone to once. And Rose, who puts together a weekly newsletter for the parkinson’s group, gave me the name of the Movement Disorder Specialist her husband, John, sees and they recommended. I called to see if I could get an apppointment with her. But was told that they couldn’t allow me to switch doctors after I’ve already seen one. But after further discussion, she said she would pursue my request, so I am hopeful.

And now I know what I want for my birthday. After the ladies shared their experience with UTI’s… Something I recently completed receiving a round of antibiotics for… Jane said, The doctor said the best way to quit having the problem was to get a good Bidet. One that doesnt have plastic valves.. make sure the hardware is metal and it has a heater for the water. The one they got also has a nightlight built into it. They said expect to pay at least $300. for a good one, They run as high as $900. + or as cheep as $39.

Jane, like I, experiences eye challenges. She has to use a VERY Large font to enable her to type. They recommended I go see a neuro-ophthalmologist. I pointed out, there are none in the Lady Lake or The Villages. They knew of a good one… in Gainsville, of course.

<><><><><><><><><><><><><><><><><><><>

As I was brousing the Parkinson’s News Today, I saw this article:


 Eyes’ Pupils May Be Window Into Assessing Disease Stag

The response of the eyes’ pupils — the black circle in the center of the eye  that allows light to enter — seems to change according to the progression of Parkinson’s disease, a recent study has found.

The results suggest that measuring the pupils’ response to stimuli could become a noninvasive way to measure disease progression.

The study, “Analysis of pupillometer results according to disease stage in patients with Parkinson’s disease,” was published in Nature: Scientific Reports.

The pupil is the hole situated in the center of the iris (the colored part of the eye) that allows light to enter the retina, a lining of tissue at the back of the eye that is sensitive to light.

The iris is a contractile structure, and expands or dilates depending on the amount of light available. In this way it regulates the amount of light by controlling the size of the pupil, functioning like a photography camera’s aperture. This movement is known as the pupil light reflex (PLR) and plays a key role in determining the eye’s image quality and response to light.

A team of researchers in South Korea looked at the PLR using a pupillometer, an instrument used to measure pupil response to light. This reflex allows one to assess the functionality of the autonomic nervous system — the part of the body that controls involuntary actions such as digestion and heartbeat.

The sympathetic system activates several bodily functions when an imminent threat or major stressor is perceived, while the parasympathetic system works to calm the body afterward. Measuring the balance between these two systems can be a useful test for patients with neurological disorders.

In this study, patients with Parkinson’s were divided into early or late stages based on the Hoehn and Yahr scale (HY scale). Among the 132 patients, 100 were early stage (HY stages 1–2) and 32 were late stage (HY stages 3–5). After matching both groups for age and sex (to compensate for the effect of age on pupil light reflex), only 64 patients remained in the early stage group.

Those with late stage disease had longer disease duration and higher levodopa equivalent daily doses, meaning they were on higher doses of medications to treat their disease.

The study found there was a significant difference between the two groups in terms of pupil constriction velocity (the speed at which the pupil contracts when exposed to light) and maximum constriction velocity, which were significantly slower in the late-stage group.

“Constriction velocity and maximum constriction velocity are parameters involving the parasympathetic system, and changes in these parameters suggest that in patients with PD [Parkinson’s disease], the abnormalities of the PLR are mainly caused by parasympathetic autonomic dysfunction,” the researchers wrote.

There was not a significant difference in the two groups when it came to pupil dilation velocity (how quickly the pupil dilates when light is removed), baseline pupil size, minimum pupil diameter, and constriction latency, the delay in pupil constriction following light stimulation — all parameters that involve the sympathetic system.

The researchers noted that pupillary dilation response may have not been affected because the medications that the patients were taking may have affected the sympathetic nervous system, and thus offset the progression of the disease on dilation response.

“[T]he parameters measured by pupillometry changed according to the motor progression of PD,” the researchers wrote, adding that “pupillary parasympathetic dysfunction progresses with the progression of PD. In contrast, the factors related to sympathetic dysfunction did not change much, implying that pupillary sympathetic dysfunction advances relatively slowly even [in] PD advanced.”

The authors thus suggest the progression of Parkinson’s disease could be identified measuring pupil constriction velocity

by Yedida Y Bogachkov PhD | September 24, 2021