Why so much differentiation of symptoms?

I think the explanation found in “The Parkinson’s Protocol” By Jodi Knapp might give us a clue. She says “Dopamine activates five different cell receptors:” I think my dopamine loss is predominantly in the D3. I will tell you why.

The theory is, a person has lost 80% of their dopamine before they are diagnosed. I have not had normal responses to events when others found great pleasure for a long time. I had blamed my inability to laugh on my father’s strict reactions to my laughter in my youth. But when I read the islands of Valleja and nucleus accumbens reinforce the effects of pleasure, and emotions such as joy and laughter, it gave me reason to reevaluate.

 D1, found in the cardiovascular system, as well as the cortex, striatum and limbic system of the brain. The actions spurred by dopamine and D1 control the growth and development of brain cells, and behavioral responses. They also modulate the actions of the D2 receptor.

 D2, found in the brain but mostly in the basal ganglia, where learning and motor control take place. Together with D1, it is implicated in behavioral reinforcement.

 D3, found in two areas of the limbic brain called islands of Calleja and nucleus accumbens, which are involved with reinforcing the effects of pleasure, and emotions such as joy and laughter.

 D4 is involved in exploratory behavior and motor coordination. Most medications for the treatment of Parkinson’s target this receptor.

 D5 is also found primarily in the limbic brain, and has a role in emotions, behavior, long term memory and smell. D5 receptors have a higher affinity for dopamine, meaning they bind to it more easily.

Going to the internet to learn more about D3 “The most important function of nucleus accumbens is to process and analyze the rewarding and reinforcing stimuli… It is also important in spatial and instrumental learning.” “The islands of Calleja are a group of neural granule cells located, where it aids in the reinforcing effects of reward-like activities.

Case in point: I allowed my son to throw me out of a perfectly good airplane attached to him for a skydiving experience as a reward for his successfully ceasing smoking.

If you watch the video, you will perhaps note I am so relaxed as we exit the plane.. like a rag doll. I had no fear or high expectations, and although I tried to smile for my sons, I felt no joy or excitement. Just a little confusion, about what I should do with my hands.

By way of explanation, there are a couple blank spaces on the video. All the divers had cameras on their heads and the dive was photographed from different angles. When he pulls the first chute it is to slow us down so we are falling the same rate as the photographers. When he pulls the second chute and it looks like it jerks us up, it is because the cameras continue falling at the faster rate, creating the illusion.

I ‘fibbed’ when I said it was fun… because I didn’t want to dampen their excitement. I feel more pleasure in watching the video than I did the day it was taken.

At the end My son, Stephen, who took me (because Tom and I didn’t have enough combined weight) made a comment about my calm.

Months of Pondering

Ponderings… (I found this in my drafts and decided it was time to share it now.)
When I could see a diagnosis of Parkinson’s was coming, I did a little soul searching. What is it I am to learn from such a diagnosis? Two conclusions came to mind.

1.) I need to express more gratitude… giving credit where credit is due. I am so grateful for the inspiration and guidance that led us to make diet changes, do cleanses and utilize a variety of modalities and supplements that led, in part…to John’s improved health. But more than that, I confess there was a long period of time, during John’s illness when I questioned; When he was told, when given a priesthood blessing, that his health would be restored. (‘How can that be possible?’) … (I was fearful that I would be widowed, being left to raise the children without a father.) It brings to mind the pleading of a father in Mark 9:24 “Lord, I believe; help thou mine unbelief”. I am so very grateful that the promised blessing came.


2.) Physician, Heal thyself. (a concept taken from Luke 4:23 … that I intend to take to heart.)

We already learned to think out of the box when considering our health, so armed with knowledge gained from earlier quests, and faith that as we read in Mark 9:23 ‘all things are possible to him that believeth.” I said “Let’s do this.”

I began to journal things I learned:

  1. There is a reason people are always telling me I look tired… It has to do with the inability of my face to move to show excitement, joy, etc. 
  2. I blink slowly and less frequently… which causes dry eyes… but the good news is… my feelings are dulled, so I don’t feel it.
  3. I can’t make almond flour with my wheat grinder. It would take one almond at a time and spit out almond butter.🤔 But I used my blender to process the almonds adding eggs…and was very pleased with the bread my adaption produced.
  4. etc…

addendum: So, of course, remembering God has given man wisdom and insight into dealing with many medical conditions… And fully believing He expects us to build on each other’s knowledge and not feel a need to reinvent the wheel, with each new situation… we first sought advice from the medical profession. I am able to report after consulting with five neurologists, I have received the medications that enable me to keep functioning.

I have been able to pull together some useful information putting it into a different format from any I have found. I hope my efforts help some of you feel informed instead of feeling a need to reinvent the wheel.

Food Grade Diatomaceous Earth

Have you ever wondered if unhealthy food remains inside your body? We have used the Burroughs Cleanse aka ‘The Master Cleanse’ to detoxify the body. It consists of freshly squeezed lemon juice, organic maple syrup, cayenne pepper, and hot water combined to ease digestion, jumpstart circulation, and support toxin removal. Lemon juice boosts the immune system and supports digestive function, the maple syrup scores low on the glycemic index while cayenne heats the body and stimulates your metabolism. Burroughs proclaimed that the liquid cleanse was a healthy and natural way to flush the body of deadly toxins, pesticides, and other impurities. Stating, “A purified colon revitalizes the body as well as the skin.” The cleanse lasted for ten days. The cleanse is not for the faint of heart.

So I thought today is a good time to tell you about a less drastic approach to detoxifying your body because they are having a 25% off sale right now at: DiatomaceousEarth.com

No, they are NOT putting soil or dirt into capsules and selling it as a supplement. The word “diatomaceous” comes from the root word “diatom”, which is a single-celled organism found in freshwater lakes and riverbeds. Diatomaceous earth is a chalk-like powder that is made up entirely of these diatoms that have fossilized over thousands of years. Depending on the grade of diatomaceous earth, these diatoms can be used to promote health, preserve food, and even control many common household pests & insects.

Just so you know, there are a plethora of ways to use the product: one example is protecting your Jack o lantern masterpiece from an early demise due to mold. My sweetheart and I consume a little each day, for the benefit of lowering our cholesterol. But I wanted to share the link where you can learn about the detoxing benefits.

DE Detox: Cleanse your body with Diatomaceous Earth

Fast Walking

I am looking forward to a two week long visit with family in Southern Utah. I will not have access to the infrared sauna, or my WBV machine for my exercise routine. So I am thinking I may give this “Conscious walking “, I learned about from John Pepper, a go.

John Pepper wrote:

“My first symptom of Parkinson’s Disease started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with PD in 1992 when my symptoms, most of which were being treated with medication, had slowly got worse and worse. Only when I started to shuffle was a neurologist able to diagnose the Pd.
Cutting a long story short. I started Fast Walking in 1994, together with managing my stress levels; Doing regular Mental Exercises; Learning How to Consciously Control My Movements; Maintaining a Positive Attitude; taking Selegilne for 8 years I was able to come off all PD medication in 2002. I am now 84 years old and lead a ‘Normal’ Life!
Because of severe back problems, I had been going to the gym every day, six days of the week, since 1968 and until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I therefore decided to stop going to the gym.
Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared.
Many PD patients think that they will not be able to do Fast Walking! I have found that many other patients, who had walking difficulties, even those who were wheelchair bound, have been able to walk normally, once I have shown them how to use their conscious brain to control the movement. I go all over the world successfully showing hundreds of PD patients how to walk properly, with only three exceptions. One could not stand on his own legs and the other two were unable to understand how to use their conscious brain. Above all else, walking costs nothing and everybody’s health improves, when they do fast walking, and if you put everything into it, then that may include you!
Many neurologists throughout the world, who have never examined me, have told their patients that I do not have PD and should therefore not listen to anything I tell them. I have been examined by four different neurologists, the last of which was in 2015, and they all told me that I have PD. The problem is that I look so well and because there is no cure for PD, I obviously don’t have PD. It is not my fault that this is happening to me, but I am determined to share my good fortune with every other PD patient, at no cost to themselves
Obviously there is a lot at stake here, especially for the pharmaceutical industry, who have spent billions looking for a cure, and neurologists, because I have not needed to consult a neurologist since 2002, other than the one I asked to examine me in 2015.
Because no two people’s PD are the same, you can learn a lot from my website and you can ask me questions that cannot be asked on this chat room.”

What I’ve been up to

I just wanted to give y’all an update, related to Covid-19 vs Parkinson’s. I have officially joined in the Pfizer clinical research study.

So please don’t worry about me… “These vaccines do not contain the whole virus, or the parts of the virus that can make you ill., instead the vaccines are made up of part of the virus’s genetic code, surrounded by fatty particles called lipids. They use your own cells’ protein making machinery to produce some, or all, of the spike protein seen on the outside of the virus. This spike protein, made by your own body, may help your own body to produce antibodies to fight against COVID-19. We (they) will check how many antibodies you make by taking blood samples and testing them.”

I will receive two injections 3 weeks apart. There are 6 scheduled times for testing my blood: 1st time was yesterday, prior to when I received the first injection. (I also was given a nasal swab test), when I receive the 2nd injection, then at 1 month, 6 month, 12 month and 24 month. To determine how long the antibodies remain in the body.

They had us download an app on my phone, where we are to maintain our e-Diaries. “Complete the vaccination part of the e-Diary for seven days after each vaccination, once a day in the evening with the first day being the vaccination.” … “The vaccination part of the e-Diary (once per week) will also ask other questions about potential side effects you may have after the injection.”

I am pleased to report I have no redness or swelling at the point of the injection. John had some minor swelling, more like a welt at his injection last night. I had some minor arm pain as I retired last night, which still lingers, but John says he doesn’t feel any discomfort.

Our children have purchased round trip flights, for John and me to have a trip to Utah in October. Being able to receive the vaccine gives me a bit of peace of mind. But we will continue to maintain our distance, wash our hands and wear our masks.

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Apathy

When I was listening to a presentation, I heard the speaker say… ‘a person with Parkinson’s may not exercise because of apathy.’ I wondered if that might be MY excuse for not remembering to exercise as often as I should? NO, I’m just easily distracted, by researching and working to create blog posts, and weeding, or gardening, or volunteering to do service projects… I want to do research on family history, and write more family history.  In other words:   I simply never found exercising rewarding.

Still, I wonder, can you have apathy about one thing, if you are able to focus on other things? According to ‘Psychology Today’…

“What, exactly, is apathy? In a sense, it’s something like falling in love. You can describe it all you want, but until you’ve experienced it, you can only guess at what it feels like. Paradoxically, what makes the feeling of apathy unique is that it’s essentially the feeling of not feeling. It’s something that at some point in your existence you’ve encountered. Whenever you feel that something vital is missing from your life, yet lack the  drive to pursue it, you’re afflicted with this curiously “emotionless” emotion.”

“Through much psychological research, it’s now accepted science that you must experience feelings about something if you’re to take personally meaningful action on it. And without any compelling emotion to direct your behavior—and apathy literally means “without feeling”—you just aren’t sufficiently stimulated to do much of anything.”

“True, apathy is a feeling. But it’s also an attitude. And sadly, that attitude is one of indifference . . . unconcern . . . unresponsiveness . . . detachment . . . and dispassion. Such an attitude saps you of so much energy that you feel lethargic, listless, and enervated—almost too “paralyzed” to act—and certainly without the will to do so. Which is why apathetic individuals are easily identified by their very passivity. Their interest in confronting life’s challenges is seriously compromised. They just don’t care enough. And frankly, they don’t care that they don’t care.”

………………… ” So they can’t think of anything worth striving for.”

I liked the attitude a fellow PwP shared:”there is no easy answer I have yet found to apathy. It is always there, as patient as the law of gravity. Fight it directly and it will temporarily retreat. The only partially successful response I ever found was in Sun Tzu’s “Art of War”. “When faced with an unbeatable foe, you do not fight, you deny him victory.”

Learned in the trenches ***

I found the following entry by Nell’s son, touching ( and a little frightening).  So I’ll put the link in the index under FEAR.   But I doubt she had the benefit of what I’ve learned about thiamine B1.  Plus the research for a cure holds out promise and hope.

 My mother Nell Canady, battled Parkinson’s for 18 years.  Over the years our family were witnesses to her decline in the quality of life. The disease would have taken her sooner if not for her steady routine of proper diet and exercise and will to live like a fox-holed Marine. My mother was as strong as they come. Before her diagnosis in 1998 she walked everyday, drank nothing but water, and ate mainly vegetables. As her youngest son, sometimes caregiver, and witness to this disease, I want to share some things we learned in the trenches over the years.

Parkinson’s is NOT a dragon to slay, not by your inner might, or toughness. You don’t, nor can you, fight the disease this way. Parkinson’s is NOT a chess match. Meaning, it will make a move and you counter with your move, expecting to one day pronounce checkmate! It can’t be outsmarted no matter how many moves you make, or how smart you think you are.

Once Parkinson’s is diagnosed; there’s just the fight. Fight to live. Fight to not permanently break down. Fight to see your grandchildren grow up or graduate. Fight to stay mentally strong. Fight to do the things you once did or love to do. Fight to not let it get the best of you. Fight to keep your strength up. Fight to keep your dignity. Fight to keep your quality of life. You’ll have good days and bad days. Some days Parkinson’s gets the best of you. Don’t be hard on yourself during the bad days; just remember to keep fighting.

However, fighting Parkinson’s disease IS about how you choose to respond to whatever it throws at you. To fight Parkinson’s disease and live to fight another day is most of the time, the reward.

My Best Advice:

  • Stay active and keep your body moving and exercise. The exercise helps fight the disease and slows the disease’s progress.
  • Do all the things you always wanted to do before Parkinson’s takes to you a stage your will, physical ability, and mental toughness can’t overcome.
  • Remember to give your spouse, family member, or caregiver grace. As a patient, you don’t face Parkinson’s alone. You and your loved ones are sailing into uncharted territories both physically and mentally. Give yourself and those you love room to fail and have bad days.
  • Quality of life is everything. Remember our goal was never about living a long life; it’s about living a life of quality. Do what you need to do to fight for your quality of life.
  • Mostly importantly, draw near to God and He will draw near to you. Keep God close.

As a caregiver, Parkinson’s disease took me to places physically, mentally, and spiritually I’ve never been and then beyond. It was frustrating when I couldn’t understand my mother when her speech was slurred and everything inside me just wanted to help. If she fell, I cursed my physical weakness. I discovered it’s difficult to lift deadweight of 120 pounds off the floor without help.

Remember what I tell you; you can’t control Parkinson’s, you can only control how you respond to what it throws at you. The last couple years of my mother’s life she was not able to take a bath in a traditional tub or shower, so bathing was reduced to a small washbasin. One day I assisted my father in giving her a bath, and changing her bed linen.

I found myself in a role reversal. I was taking care of my mother like she took care of me when I was a child. It had a profound effect on me. Later that night I awoke at 2 a.m. and wrote the first thing that popped into my mind. I’m a writer and I keep a journal on my nightstand. I turned on the lights and penned what was on my mind. The following was the poem that came from that event and was later published by The Olive Press.  

LIVING THROUGH PARKINSON’S

I wash my mother with a rag.
A slick bar of soap floats
in a small tub of water;
life reduced.

Her nakedness is open to me.
The woman who bore me is vulnerable before me.
I’m imagining my primal birth:
dark water over softs rocks in a brook.
I emerge covered in blood and mud
from the creek onto dry land,
gasping my first breath.

My mother cradles me in her arms, wipes mud from my eyes,
pulls me to her breast.

As a child, she washed me
and put me to bed,
but those footie pajamas are worn thin;
there’s a hole in the sole.
Winnie the Pooh’s honey is gone.

My mother’s hands, once strong,
now covered with thin soft skin like wet tissue,
lie trembling in her lap—
hands that held me, fed me,
spooned bitter medicine into my mouth,
now helpless, worthless stones of flesh.

I cut a fresh diaper with scissor-snips.
I slip her diaper over her feet.
Spots of red nail polish speckle her toe nails,
reminding me everything fights to hold on—

I lay her down in bed like a child
upon fresh linen.
I fix her pillow.
She likes to watch westerns on TV,
so I turn it to her favorite channel.
She’s seen this one a hundred times,
and so have I.

 

Psychotic Behaviors

My purpose for typing today is to share information I found on multiple Internet sites: As part of chronic Parkinson’s disease and its treatment, psychotic behaviors occur in over 50% of patients. These problems include hallucinations (false perceptions), illusions (perceptual errors), , delusional thinking and even suspiciousness and paranoid behaviors.

“Dopamine is the brain’s master chemical. This single neurotransmitter is responsible for a plethora of mental and physical processes. By learning how to stimulate your own dopamine levels naturally, you can overcome depression, anxiety, apathy, and fear, while boosting feelings of pleasure created by this amazing little neuron.”

What Are Hallucinations?

Hallucinations are when someone sees, hears or feels something that is not actually there. They are best described as deceptions or tricks played by the brain that involve the body’s senses. Hallucinations are not dreams or nightmares. They happen when the person is awake and can occur at any time of day or night.

Types of Hallucinations

  • Visual: Hallucinations in people with PD are usually visual. Common hallucinations include seeing animals or people, such as a furry creature running by or a deceased love one sitting in the room.

Other types of hallucinations: Auditory (hearing), Olefactory (smelling), Tactile (feeling), Gustatory (tasting)

  • Hallucinations are most often a side effect of medication and are not necessarily a sign of a decline in cognitive abilities. Most hallucinations experienced by people with PD are fleeting and non-threatening. However, in some cases hallucinations may become threatening or bothersome.

What Are Illusions?

Illusions are another sensory misperception. Instead of seeing something that isn’t there, people with illusions misinterpret real things in the environment. For example, the clothes in the closet may look like a group of people.

Like visual hallucinations, illusions tend to occur in low light or low visibility situations.

What Are Delusions ?

Delusions are illogical, irrational, dysfunctional views or persistent thoughts that are not based in reality. They are not deliberate and are very real to the person with PD. People with delusions who feel threatened may become argumentative, aggressive, agitated or unsafe.

  • Delusions are less common in PD than visual hallucinations. They affect about eight percent of people with PD.
  • Compared to hallucinations, delusions tend to be more complicated, present a greater risk for behavioral disturbances and safety concerns, are typically more difficult to treat and represent a more obvious deterioration or decline in one’s condition. 

What Is Parinoia?

Paranoia involves intense anxious or fearful feelings and thoughts often related to persecution, threat, or conspiracy. Paranoia occurs in many mental disorders, but is most often present in psychotic disorders.

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It is a process

It took me a while, but I think I figured out why I was having so many stutter steps and near falls. You may recall I said that I can no longer skip. I have been doing little jumps on the WBV machine since I went to therapy. But until this week, I was jumping with both feet at the same time. When I decided to jump one foot at a time, I discovered it has been my left foot doing all the work. I still can’t get my right foot off of the ground as I attempt to hop on the one foot.

This revelation led me to the conclusion, that is why I have been experiencing so many stumbles. I out of habit, always attempted to start out with my right foot! Yesterday, I made a concentrated effort to step out with my left foot first. To my delight, I found that by applying this strategy, I did not stutter step or stumble at all.

I celebrate each little victory. 🙂