Category: perceptions

If you recently received a diagnosis… READ THIS

When I joined The Invigorated Community on line discussion group for those diagnosed with Parkinson’s and their caregivers, I received this message. IT has been worthwhile for me to re-read.

I met the woman who changed my life forever one month into my professional physical therapy career. 

She walked, slowly and timidly, back to my treatment room for her initial evaluation with very little trace of emotion on her face.

Once she was settled comfortably in her chair, she looked up and said: 

“When I was diagnosed with Parkinson’s disease, my doctor told me I’d get worse over time and likely be in a wheelchair in 5 years. That was 3 years ago. 

Since then I’ve stopped walking with my husband in the evenings because I feel so unsteady and I’m terrified of falling again. I’m tired all the time. My back and shoulders ache and my right arm is so weak that I had to give up doing my own laundry and cleaning the house like I used to. 

I want to be able to take care of myself and get back to doing the things I used to do, but Parkinson’s won’t let me. I honestly don’t know what you can do for me, but my doctor told me I should come, so here I am.”

This was the first person I had ever treated with a Parkinson’s diagnosis and her story immediately sparked a fire in my heart. 

How could her doctor be so sure of her fate?

So, I asked her to give me 30 days to prove to her that she didn’t have to succumb to the disempowering belief that there was nothing to do but take her medications, get her affairs in order, and pray for a cure. 

Fortunately, she agreed. 

We spent 3 days a week together, and she worked hard . Bike intervals… balance pads… walking drills… squats (so many squats!)… twisting and bending in all directions… and, of course, exercise homework for the days she didn’t see me… 

Until we reached our 30-day mark.

Not only was she back to walking a mile each evening with her husband, but her back and shoulder pain was also gone. She had enough energy to do her laundry and was regularly hosting their family and friends at their home she was able to clean herself. 

She looked at me, smiling, and said: 

“I never thought I’d be able to do these things again. You gave me my life back.”
  
Heart . Explosion . 

Immediately I knew that this was where I needed to be. 

I don’t tell you this story to brag about myself or to proclaim myself some mystical healer. 

I tell you because I want you to know this: 

If you’ve been told that there’s nothing you can do but take your medication, get your affairs in order, and wait for a cure, you don’t have to believe it.

What follows is a letter I wrote that I wish I could have given you on the day you were diagnosed with Parkinson’s disease. 
Big hugs,Dr. Sarah King, PT, DPT
Founder of Invigorate PT & Wellness
She begins her letter

“If I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.”

“Dearest Friend, [Her words are so uplifting and beneficial… check back tomorrow, for the ‘rest of the story’.]

Time Sensitive invitation

I have noticed every since I began taking the Amantadine, in April of 2020, I find myself humming… a LOT… when I am working in the kitchen, or in the garden, or doing my fast walking or strolling through the grocery isles (wearing a mask and social distancing, of course).

I feel like my voice is stronger than it was before I began the humming. But I can’t be certain it is just the humming that triggered the improvement, because I have faithfully been taking the High doses of B1 Thiamine since February of 2020. My mentor in the B1 therapy told me as she has continued, to take it, all of her symptoms have diminished, including her voice volume, which has normalized

I need to be cautious and intentional with my swallowing, and use yogurt or applesauce consistency to aid me to float the nutritional supplements that I take.

I was motivated to share this with you because of a 200 voice Parkinsons Virtual choir will be performing tomorrow… Saturday, November 7th (6:30pmCT/7:30pmET)

Karl Robb said, “Please spend an incredibly special 30-minutes to learn about this outstanding and motivating day! I hope that you will share this with anyone that you know who might need help with their speech and swallowing!”

I invite you to join me and my friends at Parkinson Voice Project (PVP) for a joyful celebration of a momentous achievement of their 15th anniversary! I have experienced tremendous benefit from the exercises and protocol developed by Samantha Elandary and her mentor, the late Dr. Daniel R. Boone.

Parkinson Voice Project’s 15th Anniversary Celebration on Saturday, November 7th (6:30pmCT/7:30pmET) will consist of a 30-minute mini-documentary about how Parkinson’s affects speech and swallowing and what Parkinson Voice Project is doing to help.  The event will end with the performance of our “Global Virtual Choir” that consists of 225 people with Parkinson’s and their family and friends singing with INTENT!   

Click on this link for more information or to RSVP for this ONLINE event:  https://www.parkinsonvoiceproject.org/15thAnniversaryCelebration 

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I have been trying to correct some errors on my blog, and have found random drafts that I never posted. I am trying to put them into categories and into the index, so there is a method to my madness.

I found two posts about swallowing that I thought were of value, so they are scheduled to come out in the next two days.

So, PLEASE forgive the randomness of the posts.

Allow For Both

I read an article that was responding to the question: How do you teach your children to have a grateful heart? 

I think the author’s advice is equally valid for PwP

Express gratitude yourself… Give thanks in Prayer… AND…

Allow for Both Pain & Praise

“Just like adults, children experience hard times. Teaching them to recognize the hand of God in their life is most important for when trials come. When your child has a bad day or is facing a challenge, consider setting aside a time to be with them. Set a timer and let them express their pain and talk about it however they’d like until the timer goes off. If your child is especially sensitive, give them more time if they need or wait for a moment to switch mindsets. Then, ask your child to try very hard to think of things they can learn from what they’re experiencing. Have them list off what they still have to be grateful for. We can experience both pain and praise for God at the same time. An activity like this one can be the first step to learning this principle.”

…..Aleah Ingram…..

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.

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 1:6; Ether 3:12).

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“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!

…………………………………………….. an update typed 1/1/2021

I haven’t written for almost a year and I’ve been thinking that my contributions to this blog were at an end. I’ve progressed significantly in the last year. My voice is usually not understandable, and I am using a wheelchair most of the time to manage my risk of falling. The disease remains variable, so things are not always bad, but I have a view now of what the end looks like, and it’s not pretty. I knew this was coming, but I honestly wasn’t ready for it. I’m not there yet, but it’s more real to me now than ever before.

define… ‘Progress’

My neurologist referred me to physical therapy. I couldn’t go until they opened up the state a little. The main focus is to improve my posture, with a variety of muscle stretches and exercises, but when I told the therapist I’d discovered I could no longer skip or even do a little hop, he showed me a machine that enables me to experience jumping again. I did three reps of thirty little jumps on Monday, Wednesday and Friday. Yesterday, when home I attempted to jump, I was able to get a little air between my feet and the floor. 🙂

I am encouraged! Today I went to glean corn from a field. I would fill a bucket, and a brother would come along with another empty bucket to trade me. I wouldn’t have been able to lift the full bucket, but as I walked down between two rows of corn, I was able to move the bucket along, Since beginning the B-1 Thiamine therapy protocol, my balance has improved so much! And since beginning the Amantadine, my energy has been wonderful to experience. After two hours in the hot Florida sun, I was able to sit on the kitchen stool and shucked three dozen ears of corn, to prep for the freezer. Life is good.

For those PwP who are not seeing the type of improvement that I am enjoying, I thought I would share a perspective from Cory King’s blog ‘The crooked Path’ he defines “progress” as “no backward movement.” . “This ingenious technique usually works, at least partially.  As an example, it’s been used to coerce the Medicare program to continue to spend money on physical therapy for people with Parkinson’s when there is no clear evidence of improvement – as long as you’re slowing down the rate of degeneration, that’s progress”.

EGD

Tomorrow morning I am supposed to report to the gastroenterology specialist at a surgical center for them to do an EGD (also known as esophago-gastro-duodenoscopy). So nothing to eat or drink after midnight.

I worried about doing anything medical until after the virus scare is gone. But the Dr. says the procedure is deemed needful and is approved. I wrote about my esophageal spasms in my post on March 17th. My father and twin sister have both had the procedure… apparently they will put a balloon down my throat and inflate it, to stretch where the constriction is. I will be asleep through the process. I don’t know why it makes me so nervous.