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.

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.

Apprehension…

I was told by a caregiver about being compelled to have her PwP husband placed into a facility because he got confused and pulled a gun on her. Each PwP has their own unique set of symptoms… But I think I can safely say, I won’t do anything so drastic. There are no guns in the house. 🙂

From Cory King’s blog The Crooked Path posted Feb. 2013

“About 20% of PWPs eventually experience dementia, sometimes as severe as Alzheimer’s dementia.  It’s unclear which PWPs will have problems with dementia, but some of the risk factors include early olfactory disturbances, a presenting symptom of akinesia/bradykinesia instead of tremor, and early onset of postural instability. That unfortunately describes me pretty well, and a recent event raises my level of apprehension even higher.”

“My wife and I have been married for 28 years, and we’re a pretty normal married couple.  In other words, we occasionally get angry with each other, and we’ve had some real knockdown drag-outs over the course of the last three decades. Several weeks ago, however, after a stressful but very enjoyable weekend celebrating my wife’s birthday, we had another argument. The circumstances are relatively unimportant. What is important is that, for the first time that either of us can remember in our entire relationship, I completely lost control. I could actually feel myself spiraling up, and in a strange way I could stand outside of myself and observe how foolish my behavior was, but I was powerless to do anything about it. My wife later told me that I was red in the face, bent over at the waist and hopping up and down, and shrieking.  I said terrible things to her, and she said that she was frightened of me. Rather than thinking about the argument, she said, she just wanted to make sure that I didn’t get between her and the door.”

“That kind of behavior is completely uncharacteristic of me, but that’s the point. Personality changes, including paranoia, rage, and aggression, are early harbingers of later cognitive decline.  My wife sometimes says she can’t tell whether she’s talking to me or talking to Parkinson’s, and we can both take some small measure of comfort from the idea that it really wasn’t me that treated her in such a horrendous manner.  It hasn’t happened again, and it may never happen again.   However, neither one of us will ever be able to forget, and I think what makes me saddest is that I sense that I’ve lost something unrecoverable. Up to now, I’ve occasionally been obnoxious and unreasonable, and have behaved like the south end of a northbound horse, but I’ve never frightened my wife and I have never made her feel unsafe until now. It’s unimportant whether it was me or Parkinson’s, in the same way that it’s unimportant whether or not a dog that bites is responsible for it.  Pragmatically, it’s the bite that’s important, not whether or not the dog carefully considered the pros and cons and thoughtfully accepted responsibility for his behavior.  My sense of regret is enhanced by my knowledge that this disease doesn’t get better.”

“This is about as real as it gets.  I know I probably shouldn’t be ashamed of a disease symptom, but there it is – I am.  I know it’s a little old-school, but I’m supposed to solve problems and make things better, not cause problems and make things worse.  At this point, I typically put on my curly wig and start singing about how the sun will come out tomorrow, how my friends and family are wonderful, and how fortunate I really am.  It will, they are, and I am, but tonight I feel a deep sense of loss.   I’m sick of eating this fried rat.”

……………………….. Cory made this post 7 years ago. The post I intend to share tomorrow, makes no mention of making his wife feel unsafe. I trust he got a handle on his behavior. But it is very revealing on how Cory’s Parkinson’s has progressed.

One Face of Parkinsons

Masked facies (also known as hypomimia) is the loss of facial expressions most commonly associated with Parkinson’s disease. It is so named because the condition gives the affected person a fixed, mask-like expression.

In Parkinson’s disease, masking can develop as the progressive loss of motor control extends to the facial muscles as it does to other parts of the body. Masked facies can complicate an already difficult situation, alienating acquaintances who may be put off or disturbed by the apparent lack of emotional response.

I’d like to refer you to a previous post done on 5/20/19… https://silverliningsandparkinsons.home.blog/2019/05/20/smile/

Just say’n … falling with grace

Carol Moczygemba began a blog in 2016. She only made four posts in her blog… This is the one which got my attention: “My mobility is further constricted by a broken collarbone, owing to a fall last week. For a split second I got distracted from where I was placing my feet, and tripped. I’ve fallen before, every time thankful for no concussion, no broken bones. But this time I wasn’t so lucky.”

Karl Robb in a blog post this week speaks of ‘urgency for communication for a series of obvious reasons when it comes to an unpredictable neurological disorder such as Parkinson’s disease.’

On January 8th I wrote, in response to an inquiry: “Hi neighbor! I had my second fall, exactly 6 weeks after the first. This time I was in the kitchen, stepped back taking something out of the microwave, lost my balance,fell against the island on wheels, which rolled allowing my downward spiral. My bruised hip is still a little sore, but no permanent damage.”

As I notice a failure to continue to communicate, from other pwP, I wanted to assure you, my readers… Although I hold out hope for stem cell regeneration, (I began taking Stem Enhance Jan.22, 2020) I’ll make sure a loved one knows how to make an entry in my blog, so in the event I develop a problem, they will keep transparency going.

 

Faith and works go hand in hand

A brother at the temple asked my husband about the name of the product I had referenced in my blog, that I credited with contributing to my husband’s recovery from a debilitating condition. As my sweetheart related their conversation to me, it seems he didn’t give a direct answer.

As I pondered his response I believe the answer can be found in his profound deep faith. As he endured the years of crisis and pain, he was promised in priesthood blessings that he would, in time, be well again . And he has recovered.

Despite our trust in the Lord’s ability to heal, we also believe the Lord has given us the council to use wisdom in all things. He expects us to strive to learn through our own study and take advantage of the things made available to us in our quest for health. I believe our Heavenly Father has provided many things in nature that will bring our bodies into balance. He also provided man with the gifts of intelligence, curiosity and perseverance enabling us to seek to discover and apply. I see it as part of our test… faith without works isn’t always enough.

Do I think Stem Enhance was the only thing we tried that he benefited from? No. I suspect some of the cleanses helped remove toxic chemicals from his body. But I could see a direct correlation between the time of product usage and the reduction and elimination if his debilitating headaches.

Likewise, as I begin to take the product, I will continue to use other protocols that I feel may be beneficial to my holding symptoms at bay. And I will not leave the power of priesthood blessings out of the equation.

Intent and Bandwidth narrowing

The following photo is a visual description of how I feel my participation in conversations go. When someone asks a question, so many variations of a response are running around in my head, by the time I decide which response I want to make, the conversation has moved on, and my comment goes unvoiced. (I think it might be related to the bandwidth referenced below)

Mht af saying thinking 5

I am finding… when I focus on taking larger strides, challenge myself to go swiftly up the stairs at the temple, instead of using the elevator, follow my to do list, for gardening, breathing exercise, etc..and go out of my way do a service project each day… the intentional INTENT truly goes a long way.

Below are excerpts I have taken from conversations in an online Parkinson’s community, that alludes to the variety of physical skills effected… and TEACH us how, with INTENT we can keep functioning.

…………………………………..

David L educated us : “Walking backwards worked because you had to use INTENT. Intent is the key to everything related to Parkinson’s. Dopamine is responsible for the smooth operation of the things we do “automatically”, like swinging your arms when you walk, taking a deep breath before you speak, making your tongue do its thing for speech and swallowing, getting words from your brain to your mouth, and on and on. By the time of diagnosis a PLWP has already lost 80% of the cells that produce dopamine. When intent is implemented, we are able to bypass the “automatic” track of the brain, which requires dopamine, to a non- automatic track. One must really think about walking backwards lest one stumble and fall

………………………………………

lowreyjw said: …… “I have breathing problems similar to yours – if what I have noticed is true, then it has something to do with PD weakening the diaphragm and lessening the power of activity.

I am taking breathing therapy and the net effect is to strengthen the muscle tone and power of diaphragm response when inhaling and exhaling – I notice my breathing is shallower rather than weaker, and if I take extra effort my lungs inflate just as they did before PD – but I have to think about it, possibly another case of the neural bandwidth narrowing…

………………………………………..

Typing with Parkinson’s

What follows was written by Omotola Thomas. Funny and sad at the same time. She has had PD longer than I, and her frustrations are showing.

Typing under the influence of Parkinson’s: 3 things your doctor didn’t tell you.

1. Typing will suck! Don’t try to fight it…. it will progressively suck! Did I just hear you say “Well, I can just use voice-to-text“? Sorry to burst your bubble, but as your voice gets weaker with PD, so will the ability of the V2Txt to decipher what the heck it is you are trying to say. If, like me, you are prone to ending your messages with “xx” to indicate the 😘 emoji, your precious dirty-mind of a V2Text-er will instead type “sex sex“… And when, in horror, you hurriedly try to delete it, your tremoring fingers will accidentally hit “send“. Imagine meaning to type “Cool… Let me know if you want to do it xx” 🥺🥺🥺

2. When you see your friend’s distraught Facebook post about her dog that just died, you will try to show your sympathy by clicking the “😢” emoji, but instead, you will click the “😂” emoji , and each time you frantically try to change it, you will re-select “😂”. If you are wise, you will accept your fate and stop trying because if you continue, somehow… (and I cannot explain how) the next thing that will happen is that you will end up “activating” and inadvertently sending a highly inappropriate GIF. The frustrating thing is that when you do actually want to send a GIF, you will not know how to. 🤦🏾‍♀️🤦🏽‍♀️🤦🏽‍♀️

3. When someone sends you a WhatsApp message, and you proceed to respond … They will see (on their end) that you are “…..typing”. They will see this “ …..<insert your name> typing” for a very long time, which will indicate to them that they are about to receive a long message from you. imagine their irritation when, after staring at “…is typing” for 6 1/2 minutes, your reply comes in and all you have managed to type is “Ok. Got it 👍🏾. “ 😐😐😐

Suggestions.. not to say

What Not to Say to Someone with Parkinson’s Disease

[Here is the follow up post, as promised]

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can break a person down. Be mindful of how you speak to someone with Parkinson’s. 

“Words can inspire. And words can destroy. Choose yours well.” —Robin Sharma

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.” —Disha Patani

I didn’t get the memo…

As I prepared to leave the clinical trial, I figured It may take me a while to get caught up on things on the home front, SO,, I have set the dates for publishing the next few “FINDS” that I thought were insightful, interesting or educational. I felt I should explain that I do not spend ALL my time researching. 🙂

FROM ‘Parkinson’s News Today”

“, people don’t usually pick up on my symptoms in everyday circumstances. I’m an advocate for exercise as medicine. I work out regularly and feel that it has helped me to delay progression of my disease.”

“So, what should I do if I find myself in the awkward scenario of running into someone who hasn’t seen me recently? Should I quickly duck down the dog food aisle (although let’s face it, nothing is quick anymore), or endure the next few uncomfortable minutes?”

“Inevitably, the ducking idea fails, and the obligatory conversation begins. How it plays out produces mixed reactions, but primarily a bewildered look of “What?”

It goes something like this:

Unfortunate person who ran into the woman with Parkinson’s: “So, how are you feeling?”

Me: (on the inside: “A rhetorical question, right? You don’t want a truthful answer.”) Aloud, I say, “I’m doing well, thank you for asking.”

Unfortunate person: “Well, you look great.”

At this point, 26 years (or in my case 51 years) of wedded bliss to my husband and having raised three sons (or in my case ten children) who all embrace sarcasm begin to show. I save the following witty response for those who know me well enough not to be offended.

Me: (grinning) “Well, I did not get the memo that a Parkinson’s diagnosis meant that I was supposed to look bad, so thank you.”

Then comes the “What?” look, swiftly followed by a laugh, and the elephant in the room isn’t so big anymore.

We managed to find humor in the chat, which lightened the mood. Everyone felt better. After all, I could have answered, “My meds are wearing off, my symptoms are in high gear, and I feel horrible.” That would not be very nice, so I stuck to the lighter side of things.

“The bottom line is that we cannot duck down an aisle or cross the street to avoid conversations just because people don’t know what to say to us. It is not due to a lack of concern on their part, but rather a dearth of knowledge.”

“Find opportunities to educate and inform others about Parkinson’s. If you can manage to do that with a little bit of humor, that’s a bonus for everyone.”

*** Since preparing this post, I saw an excellent follow up article …What NOT to say. I’m going to schedule it for today, also… 🙂