Fixel

Yesterday, John took me to visit the Neurologist at the Fixel campus at the University in Gainsville, Fl. Last year, the Doctor told me I was doing so well, she didn’t need to see me for a year. Well, the year is up, and I’ve been consuming the LuminAloe for an entire year and I am continuing to recognize additional improvements. While there, they had me visit with Physical and Occupational Therapists. I was told to keep doing the same things I’ve been doing. When they tested my grip, they reported that I was stronger than I was a year ago. And when they timed how fast I can walk, my speed was reportedly faster as well. I told them about an exercise I’ve added to help with balance… And they encouraged me to keep it up, that my balance had also improved. Yea! for more comprehensive nutrition.!

As part of evaluating my cognitive status, she told me 5 unrelated words and advised me that I should remember them. and about ten minutes she asked me to repeat the word she had said. I couldn’t remember any of them, then she gave me hints like Flower and that was enough to remind me the word was Daisey. She indicated that it was indicative that I had the beginnings of Parkinson’s dementia. If it was Alzymers I wouldn’t have any recall, even with the hints.

In one of the discussion groups I participate in, a gentleman said his doctor tells every PwP he sees to take Lithium Orotate. I remembered My General Practitioner had me using lithium Orotate, previously but somehow I had eliminated it from the battery of supplements. After I watched the video he shared with us, I have now added lithium Orotate back into my supplements.

https://www.youtube.com/watch?v=sA8AtSWPnRw

no, I’m not depressed, keep listening….You’ll learn how beneficial it is for brain health.

So, the neurologist told me they are starting up a new research study of PwP with dementia. If I understood correctly, They will do Mri’s or datScan’s at the beginning, and periodically as they follow the study participants.

I have high hopes that the LuminAloe will resolve my lingering symptoms..

As requested

A caregiver of a PwP asked for me to address prisim lenses. Somehow I acquired a resource guide, put out by “Neuro Challenge” foundation for Parkinson’s. I found an item on page 35.. ‘Eyesight and PD’ and I quote:

“Parkinson’s disease can have profound effects on the eyes that can result in a significant decrease in a person’s quality of life…. the lossof the ability to read, watch TV, or even just see the environment can be a more devistating side effect….”

Blepharospams are forceful closures of the eyelids and are a common problem in PD patients. Besides making it hard to see since the lids are closing a lot, it can be very hard to get medicationsinto the eye. The spasms can be treated with injections of medications (ex. Botox) into the eyelids to reduce the spasms.”

Dry Eyes are a very common problem in PD patients. The dryness is usually from a combination of decreased blinking, decreased tear production, and the eyelids not being in proper position……. If artificial tears do not take care of the problem, prescription eye drops, punctual plugs, or even eyelid surgery can help improve the tear film.” ( I personally have had the eyelid surgery, where they implant something into the lower lid, leaving less of the eyeball exposed.)

Double vision, especially when reading is another common complaint.This can be from changes in the eye causing the light to split and images to appear double, or from a misalignment of the eyes giving different images to the brain. Sometimes the treatment can be prisms in the glasses. Other options include Botoxto the eye muscles or strabismus surgery to improve alignment.”

I wanted to redirecct you to a prervious post I typed about when I first learned about Prism Lenses.

aaaaaggghhhhh

I found the following in my drafts… I never sent it:

“.. i closed mthe kisik down without ever getting my order on it’s way.  I need to know how to delete a shoe mfrom an order… I guess I’m, technically challenged..

i tried to take advantage of the Cyber Monday code.  I attempted to sign in, and foound I didn’t remember my password.  so I typed in my gmail address. clicked on forgot password///   But THe email with the code wouldn’t work  Please, will I be able to get a pair of the shoes at the black Friday cclass, bedcause the chat wasn’t manned for the weekend.–

PS… I have Parkinsons and my fingers bounce on the wrong keys and I frequently hit the wrong key causing great frustration..”

As I reviewed my typing it brought to mind , i recalled a previous post:

silverliningsandparkinsons.home.blog/2019/08/20/typing-with-parkinsons/

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.”