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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 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.

 

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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Detox … multiple ways

          Someone asked a question on another communication board about how to detoxify.

          There are lots of different approaches, but I thought I’d share some insights, and provide links, if a person would like to research detoxing more.

          The skin is the largest organ in the body. Among its many functions are absorption and excretion. I figure since many of us probably absorbed toxic chemicals thru our skin, shouldn’t we be able to eliminate them the same way.. thru the skin? Since my sweetheart removed the tub and set up our infrared sauna in our bathroom, I spend 25 minutes each morning in an infrared sauna set to 140 degrees. I sweat like crazy. I also use the time to listen to an inspirational talk, while trying to focus on sitting with my shoulders back and doing deep breathing exercises. Then I shower, washing the sweat and any toxins pulled out down the drain. I consider it my preventive measure against the covid because my research showed that the virus died at 136 degrees, So if I am breathing hot air at 140 degrees, if anything makes it in, it is cooked. Check out the link here for additional information on benefits of infrared sauna.

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The main task for the human liver is to pull out toxins on a daily basis.   here are some recommendations to flush the toxins from the liver.

  • Add more fruits and vegetables for fiber.  Fiber absorbs toxins pulling them out.
  • Increase Garlic in cooking is rich in Amino Acids that help the liver by activating certain enzymes to remove toxins from the body.
  • Add citrus … Vit C promotes enzymes which help eliminate toxins.
  • It is believed Turmeric can promote the growth of new cells in the liver.
  • Drink, more water , water, water, hydrate and maybe some green tea

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Something else I do regular is consume  Food Grade Diatomaceous Earth.  John & I have approximately 1 Tbsp stirred into 8 oz liquid, an hour before 1 meal each day.  I have cut and pasted from the site:  DiatomaceousEarth.com                                                                                                                                                                                                                                                                            ” Cleanse Your Body with Diatomaceous Earth”

“Diatomaceous earth (DE) offers an alternative method for detoxing your body, one that is cheap, simple, and effective. It doesn’t require fasting or foul-tasting health foods, and many people have used it with great success.”

“DE’s naturally absorbent and abrasive nature makes it an ideal internal cleaner. As it passes through your system, it absorbs harmful toxins, and it does this without requiring you to change your diet or lifestyle.”

How Do I Detox with DE?

“Detoxing with diatomaceous earth is easy. Simply follow these steps:”

Step 1:
“Take about one teaspoon of food grade diatomaceous earth with water once a day. Take it on an empty stomach at least one hour before or two hours after eating. DE is nearly tasteless, but if you don’t like its mildly gritty texture, try taking it in juice, yogurt, or a smoothie.”

Step 2:
“Over the next few weeks, slowly raise your DE dosage from one teaspoon to two teaspoons, taking one in the morning and one teaspoon at night. We recommend taking up to a tablespoon per day.”

Step 3:
“Be sure to drink plenty of water throughout each day to keep your system hydrated.”

Step 4:
“In her book, All the Green Things You Can Do with Diatomaceous Earth, Tui Rose suggests taking DE 10 days on and 10 days off for 90 days, though many people have found different strategies that work for them. Some take it daily for a few weeks, others for years at a time. Experiment and see what works for you.”

“If you don’t go about fixing what’s causing the neuronal damage, then the damage to the brain (roof) is going to get worse and, eventually, drugs (buckets) aren’t going to be effective. This is precisely what happens to people with Parkinson’s as they go on a medically-supervised path of decline. This just didn’t make sense to me, and it made even less sense when my research started to turn up authoritative studies, published by university and clinical research bodies, which revealed likely causes of the neuronal damage. Damage, which was largely caused by eating the wrong foods. Damage, which therefore might be arrested by eating the right foods.  My starting point was identifying and eliminating the toxins from my diet and from my body. I reversed my Parkinson’s symptoms and started to live well despite having the disease.”

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.”

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.

Nell by Charles Canady from “Living with Parkinson’s”

 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 fightFight 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.

  •  

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. 🙂

 

In response to Cory’s challenge

In a recent post there is a line from Cory’s blog that I feel compelled to answer. He said:

“I’ve always been a little irritated by people who insist on finding a silver lining in every crappy situation they face, though. Those people are noble, inspiring, and worthy of emulation, but also sometimes just a little bit too good to be true.”

The difference between he and me is our perspective. I understand the long range goal is eternity. I have cut and pasted words from the talk given by D. Todd Christofferson: The Power of Covenants

……………………………………..

“Our access to that power is through our covenants with Him. A covenant is an agreement between God and man, an accord whose terms are set by God.”

…………………………………….

“All this is not to say that life in the covenant is free of challenge or that the obedient soul should be surprised if disappointments or even disasters interrupt his peace. If you feel that personal righteousness should preclude all loss and suffering, you might want to have a chat with Job.”

“This brings us to a second way in which our covenants supply strength—they produce the faith necessary to persevere and to do all things that are expedient in the Lord. Our willingness to take upon us the name of Christ and keep His commandments requires a degree of faith, but as we honor our covenants, that faith expands. In the first place, the promised fruits of obedience become evident, which confirms our faith. Secondly, the Spirit communicates God’s pleasure, and we feel secure in His continued blessing and help. Thirdly, come what may, we can face life with hope and equanimity, knowing that we will succeed in the end because we have God’s promise to us individually, by name, and we know He cannot lie “(see Enos 1:6Ether 3:12).

………………………………..

“We need strong Christians who can persevere against hardship, who can sustain hope through tragedy, who can lift others by their example and their compassion, and who can consistently overcome temptations. We need strong Christians who can make important things happen by their faith and who can defend the truth of Jesus Christ against moral relativism and militant atheism.

May you find the silver linings in your life.


ve

I’m still in here…

You will be able to see how the challenges have changed for Cory in the seven years since the post I shared from yesterday.

from a blog by Cory King The Crooked Path posted Nov 2019

“As time passes, I’ve learned to expect the unexpected from Parkinson’s. It’s surprised me with several unpredicted outcomes, some positive and some not so positive. Sometimes, it’s the physical and mental impact of the disease that’s surprising; sometimes it’s the unforeseen result on my relationships and social interactions. Sometimes I rise to the challenge; sometimes, not so much.”

“Parkinson’s is a thief, and a sneaky one at that. It’s never honest about what it steals; it gets you while you’re not looking, and takes things you never had the good sense to value, but turn out to be central to a good life.”

“Parkinson’s is stealing my ability to communicate. I always took my ability to explain, to comment, to describe for granted, and I didn’t realize how fragile it is. Not being able to communicate my thoughts and feelings without extreme effort is devastating, and it affects every other part of my life. It seems like such a simple thing, but Parkinson’s gets in the way at every turn.”

“I’m typing this blog post, because my voice recognition systems no longer recognize my voice. Siri and Alexa don’t know what I’m trying to say. Dragon Dictate tries harder, but they all three come up with novel (and sometimes amusing) interpretations of my faint, garbled, slurred statements, and it takes more effort to correct them than it’s worth.”

“Typing is a little easier, but only a little. I don’t coordinate movement between my two hands very well any more, so I have to type one-fingered. I occasionally can still think with some alacrity, but I type so slowly that the thoughts often get lost. My writing is less nuanced, and I often find myself taking shortcuts in my writing, opting for the simple and short rather than the complete and expressive. That may be a good thing.- I don’t know. I do tend to run on, but this externally imposed brevity is frustrating and irritating.”

“Although I sometimes can still think with near “normality,” I often think as slowly and incompletely as I write. This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say. My interpersonal communication as well as my written communication are altered by this impact; even with people that know me well, I perceive that there’s a “pulling away” when I’m struggling with a simple conversation or fighting to respond to a question. It’s a negative feedback loop, too – the harder it is for me to talk and have simple conversations, the more I shy away from them. I’m becoming more socially isolated, because it’s just exhausting to try and have a simple verbal interaction with someone.”

the feeling of horror I occasionally have about what’s happening to my mind and body, and my feelings of claustrophobia, of being imprisoned in my own body. On my worst days, it gets close to the feeling I have about being unable to express my most basic feelings, of being unable to defend myself in the most elementary disagreement, of being unable to correct a simple misapprehension or inject my belief and views into a conversation. My inability to be the “me” that’s still in here, but is trapped and voiceless.

I can’t even i,\magine how many hours it took Cory to get this piece typed, and expresss himselg so well. (He would have errors just like what O just typrd… to go back and correct) (He would have to re order his thoughts to mske the piece flow.. by cutting and pasting.) Wat a example of fedterination… determination!