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.

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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.”

The Perfect Time

On Septrmber 26th I posted : ” 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.”

A couple of my daughters pooled resources and gave me a Bidet for my birthday. I have been used to taking care of business and moving on… so I was dismayed to realize the air drying cycle even with a heater required an additional four minutes of sitting. Then I discovered it is the perfect time for me to go through the routine of hand exercises….. multiple times a day. With the reward of an improvement in my hand writing… plus no more UTIs.

https://www.youtube.com/7HandExercisess

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Mindful of my blessings

FROM PAUL GOLDMAN’S BLOG

I see clearly again what has me leaping onward and upward each day!  When my heart is fully engaged in living fully no matter what, I find that I am in the midst of my BEST DAY. 

It is what I bring to each experience.  For me, being unstoppable is mostly a blessing.  Pushing through and being aware of when I need to hit the pause button is a lesson of self-care still being learned. 

So, on I go into each day knowing it is my BEST DAY

Though inactivity is not the enemy as much as not having my heart fully engaged in whatever I am doing.  Perhaps this is where mindfulness comes into play.  For with a grateful heart, I can be mindful of my blessings which are ever present no matter how I am feeling physically or emotionally. 

The lesson here, for me, is to try and remember how I feel when my heart is fully engaged in whatever I am doing.  Now, I know again that this is the magic key to living my BEST DAY, living from my fully engaged heart.

Quality of life

 I wrote the first four Paragraphs in ” italics“on Nov 19th.  I had probably been using the New Eden for at least 5 months.

        “I wanted to tell you about what I am using and the impact it has made in my life.  I had purchased a helmet to protect my head as I had continued to fall.  But I forgot to put it on before going to the hospital to visit a sister who had fallen and injured her back.  As I was stepping from the curb onto the sidewalk, I didn’t get my foot raised quite high enough, causing me to stumble. The thought flashed through my mind..(You didn’t put the helmet on and now you are going to face plant on the cement.)  But miraculously, I was able to move my feet quickly enough that I was enabled to recover my footing.  I’m sure it wasn’t a pretty dance, as several people came to make sure I was ok.  I attributed my rescue to be by the grace of God and the improved comprehensive nutrition of the New Eden product I had begun to consume. ”      

    “The next week, I was feeling so good, I was working outside and decided to pull a hose around to water an Angel Trumpet Bush… and as I was pulling hard, the hose snagged on something and it stopped me so suddenly that it caused me to fall backwards.  Thankfully, I had the helmet on, because I hit the cement statue of a child holding a fishing pole, so hard that I dislodged the pedestal from the soil and knocked the child off of the pedestal.  Although my shoulder was sore and where the cement had struck my spine was bruised and swollen,by the third day, the pain was all gone, the swelling had receded and it was as if it had never happened.  Again I thanked the Lord for leading me to this more comprehensive nutrition. ”        

” As you probably know, people with Parkinson’s frequently cease to swing their arms as they walk.  Mine would just hang at my side.  But in about the last month I have noticed the swing has returned to my arms when I am going into a store or even around the house or going from house to car.   Again, the only thing I have added to my regime in the last little while is the more comprehensive nutrition. “

“Also, my  voice has been terribly weak, and I have a friend who is hard of hearing,  When she called me on the phone this week, she said;  “You are speaking louder !  And I noticed that the last time we were together, I could hear you better !”  What can I say, but Thank you for the tool of more comprehensive nutrition.”   

On Jan 16th I added: The LuminAloe (see explanation in following paragraph) has recently been released.  John and I are about through our second tub of the product.  Since using it, I havent had any more falls, and my gag reflex has returned.  John serves in the temple every Thursday and his knee hurt so bad he had resorted to using the elevator more than not.  He reported to me that he went down two flights of stairs and was amazed that there was no knee pain.    I am looking forward to when I can cease to drool.”

The abreviated version:… Dr Reg McDaniel became acquainted with a product derived from Aloe and subsequently traveled all over the world, documenting how beneicial it was. When the FDA shut the company down, because some of the distributers were making claims that people were being healed, Dr. McDaniel improved the formula, creating a product known as New Eden, marketing it by word of mouth and radio. When his son, Reg Jr., partnered with an accomplished msrketing person, they Invited Dr. McDaniel to creat a new formulation. Dr. McDaniel, having continued his research knew of five additional ingredients he’d wanted to add. Thus was created the Q800+, named for the over 800 ailments that they have documented the previous products have reduced symptoms, by providing More Comprehensive Nutrition (MCN). But after the first batch was completed, thy have chosen from here on out they will call it by it’s primary ingredient… LuminAloe™ . Doctor McDaniel states: “This formula has a higher % of the LuminAloe™ than the previous products.” + “This last formula is themcn best yet.”

Jan 23rd

My husband has an abnormal blood clotting issue blockage in the deep veins in his legs. We have been told it is a genetic defect, which results in episodes of abnormal blood clotting. usually in the deep veins of the leg. But one of our sons who inheritrd the same defect has had clots form in his lungs. And there is always the fear of a clot breaking free and resuting in a stroke.

My husband has not used as much of the product as I have, because he wanted my cannister to last for me. But since receiving and consuming the Q800+/LuminAloe™ His blood tests have indicated his blood was too thin. So’ in two weeks and the second blood test was even thinner, the medical personnel had him reduce his medication which had been keeping his blood at a therapeutic level. Yea!! I’ll be so happy if we can get him weaned off of the prescription through More Comprehensive Nutrition.

Dr. McDaniel shares that even genetic abnormalties may be reversed because all of the nutrition coupled with the LuminAloe™ gets down to the cellular level and the DNA.

Two weeks earlier a lab drew my blood samples This past Tuesday I met with my PC Doctor to review the lab results. Before he had looked at the results, I told him I had begun using this new product. He asked me what it was, I explained a little bit and told him my arms have begun to swing again! This was a pretty big deal. Then, as he looked at the results, across the board all of the numbers had moved to the optimal range. When he got to cholesterol, he said “Wow! That Cholesterl Care I’ve had you taking must have really kicked in! Your bad cholesterol has gone way down… and your good colesterol has gone way up!” To which I responded, “Or it could be the more comprehensive nutrition I have been using, because you’ve had me on that product for quite awhile.” He proceeded to look at the rest of the report, and then said, “I’d like to know more about the supplement. If it can do that for you, maybe it can help some of my other patients!”

I have an appointment on Tuesday this next week, to share more information with him He is a wholeistic physician, who makes the products he recommends to his patients, available to them.