In the cards

On December 29th I received my first container of Glyconutrients… So I am beginning a new product with the New Year. It is called ‘New Eden’    John and I are hopeful that our bodies respond for an improved normal.  I’d highly recommend you folks watch the interview that opens for viewing on this page at this link.    https://www.wellnessquest.org/                                                                                                                                                                                                                                                             

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 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.

  •  

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.

A fried Rat

I began my journey into the non-motor aspects of Parkinson’s 5 days ago, when I introduced the term Adjustment Disorder. Today, I want to share Cory’s creative anology; comparing Parkinson’s to a fried rat.

From Cory King’s blog The Crooked Path

 “I’ve been cherry-picking the good stuff… … … … In part, though, what I’ve been doing is engaging in self-deception and denial, closing my eyes and pretending that Parkinson’s disease cannot see me. In a fit of magical thinking, I convinced myself that if I remained optimistic enough, maybe I could  get a pass, or divine dispensation, or just catch a break from reality.  It’s just not going to happen, though.”

“Optimism is good, of course; like faith, it can keep you going when otherwise there doesn’t seem to be much point. 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. When you get a fried rat in your bucket of chicken and you insist on claiming that it really is the best fried rat you’ve ever had, you just lose credibility and make people want to punch you in the nose. The truth is, fried rat is unpleasant (I’m guessing).  To paraphrase Jules (the guy that’s not John Travolta in “Pulp Fiction”), claiming that fried rat tastes like pumpkin pie doesn’t make it so. I suppose my conclusion is that Parkinson’s disease is a fried rat. I sincerely hope that’s an original metaphor; I’d hate to think that someone else has followed the same line of reasoning.”

After listing the four ‘cardinal signs of Parkinson’s TRAP – tremor, rigidity, akinesia/bradykinesia, postural instability – and other possible physical symptoms, Carl continues:

“The physical issues aren’t the whole picture, though. I had an unreasoning hope that I would avoid the cognitive, psychological, and emotional issues that can accompany Parkinson’s, but it’s becoming more and more clear that this is going to be part of the package for me, also. I think more slowly than I used to and I have short-term memory issues, but up until very recently most of my cognitive impacts were actually drug side effects. Since the DBS surgery, I take less medication, so those side effects are also somewhat reduced, but I still have trouble with compulsive spending. Fortunately it’s not out of control, but I fairly often find myself taking things back to the store wondering why I ever bought them in the first place. It’s irritating and potentially problematic, but I’m fortunate that my wife keeps an eye on me from afar and doesn’t sweat the small stuff.

I should make a side note here; Compulsive behaviors are attributed to side effects of medications such as Amantadine, also. (PLUS.. note to self. Explain what DBS is.)

In tomorrow’s post, Cory details how personality changes, including paranoia, rage, and aggression have impacted his life. I think I’d say cognative decline is a fried rat. 

Adjustment Disorder

As I considered addressing the effect that Parkinson’s has on cognative function. mental health, sleep and such, I stumbled onto this (new to me) term. I share it, to let you know that you are not alone in your feelings.

Carla Collier’s doctor called it ‘Adjustment Disorder.’  She shared: “This made perfect sense. It could be called Acceptance Disorder, Acknowledgement Disorder, Adherence Disorder etc. Nevertheless, I wasn’t doing well at any of those things. I had developed a chronic, neurodegenerative disease for which there is no cure and no treatment to slow the progression. Yet, I expected my life to continue as though everything was normal. (As I mentioned in The Telling, I tried to downplay and make light of PD…not the best idea!)”

“My doctor put me on a medical leave of absence from work. I used this time to adjust. Not easy. Eventually, I practiced some much-needed self-care and I began to gather my team of professionals to help me deal with the many facets of this disease.”

“It took time, four months to be exact, to build my system back up to working order and even then I was only able to return to work for half days.”

“I think I will always have Adjustment Disorder.  But I think I have learned to listen to my body and recognize when I need to give myself a break.”

 ………….With Parkinson’s being a progressive, (Strange word choice because progress is usually a positive thing, but in the case of diseases, progressive is never a good thing!) illness, we should be aware that our condition will worsen over time.

As these progressive changes occur, emotional or behavioral reactions contributing to feeling anxious or depressed may loom up again and again. Don’t hesitate to seek help to regain your emotional footing.

 

Another glimmer of hope

ps… the dilation of my esophagus went well.

In December of 2019 my friend Reg McDaniel discovered a device only available in Europe and Reg’s friend ordered one out of Germany to arrive in UT.  It’s an FDA approved class II medical device and Reg has traveled with him on many occasions and seen with his own eyes miracles occur in hours , not days, weeks or months.  
          On April 30th Reg wrote:  “I write this today because as of today it is available in the USA  and if you are interested, I will gladly share it with you.  It costs between $470 plus tax and shpg. to $2,357 if you want all the bells and whistles and that is what I chose.  There is a $49 processing fee.  For those who buy one before May 15th at midnight I can save you hundreds of dollars on the smaller packages to over $1,000 on the largest available package.  After the date of May 15th, everyone pays full price and all fees. I have seen with my own eyes in hours what I’ve seen in the past take – days, weeks and months to resolve.  If this doesn’t interest you then we’re done.  For those who want to know more then read on:”

          Reg then told me about a book, which I purchased to read on Kindle.  All I can say is wow!!  I want to experience this health promoting tool!

“The book on Amazon you can buy right now is called Resonance Therapy by Carolyn McMakin. https://www.amazon.com/Resonance-Effect-Frequency-Specific-Microcurrent-ebook/dp/B01HL140R4/ref=sr_1_2?dchild=1&keywords=resonance+therapy&qid=1587995482&sr=8-2

“In it you can read about all the diseases it has dealt with for the past 20 years with 98 %  success rate in hours vs. days weeks or months.”

I plan to obtain the device… If you read the book, you just might want to experience it for yourself.

This post is for my new neurologist.

As I stated previously, I liked several things about him… how he gave me courage to try the medication again, providing strategies to avoid a repeat of its making me ill, and how he said see you in three weeks, and frequently till your life is under control.

BUT I sensed his frustration with me, as he held up a finger asking me if I saw double. I, too felt frustrated as he moved his fingers across demanding I respond. I had several responses going through my mind, but I finally blurted out No. I only see one. But it felt like a lie. You see, doctor, I had all these thoughts running through my mind…but couldn’t find a way to express myself:

  • I saw a blurry finger cog-wheel in jerking fashion. So technically, only one.
  • But for several years, even after my annual prescription updates, I would find things just didn’t seem in focus. Then in 2018 the eye doctor finally gave my condition a name: oblique double vision.
  • Sooo… knowing I wear prism glasses to correct the problem, it took me four years to get a name for… how could I be sure I was only seeing one?
Mht af saying thinking 5
* I felt like admitting I only saw one was like saying my vision problems aren’t related to the Parkinson’s diagnosis.
  • The eye doctor even told me I leaned like a person with oblique double vision. ..PLUS the prism glasses restored my ability to text, and read.
  • And… I have seen where vision problems are related to Parkinsonism.

What follows is taken from a presentation given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things….. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

Muzzle the Grouch… Zip the lip

Fortunately, this hasn’t been an issue for John & I (I don’t think…) But I found the article, with its good advice, I thought I should share it. 🙂

The Grouch ….. Dealing With irritability FROM: PARKINSON’SNEWSTODAY.COM

Years ago when I was first diagnosed, my partner asked the neurologist, “Is there something we can do about his irritability?” The doctor responded, “I wish I had a dollar for every time a partner made this request.”

It seems this is a prevalent issue. In past columns I have addressed scenario looping breakdowns, exaggerated emotions, deep fatigue, bad days, and ugly days. All of these contribute to the occurrence of irritability. Add to this “off-periods,” which also increase irritability.

The grouch rears its growling snout, and to keep the relationship protected, T.O.O.T.S. is the necessary muzzle. T.O.O.T.S. stands for Time Out On The Spot. It means that you “time yourself out” — zip the lip and take a trip. Walk away and return when calmer moods prevail.

As a therapist and professor, I have lots of practice monitoring my internal emotive state and taking actions to prevent it from affecting my ability to help others. But with Parkinson’s, it became more difficult. The first time the grouch barked back to a student in class and “put her in her place,” it happened on one of those bad days that overlapped with high irritability. But it was a shock to me that it happened, and I went to the department chair to explain it. He shrugged it off.

I told my neurologist that it was as if the normal filters I use to screen my emotions were not working properly. The emotions just spilled out and this grouch took over. Now further along with the disease, not a day goes by when I don’t have to muzzle the grouch.

PD irritability can bring other exaggerated emotions. Every little thing becomes blown out of proportion. Example: I’ve asked my partner not to smoke in the house and even hung a no-smoking sign. (Yes, inside the house!) Yet, a cigarette still gets lit indoors prior to my partner walking outside. The smoke makes me nauseous and triggers the grouch.

How many little things occur in a relationship that are annoying? With the grouch, it is not like a-fly-in-the-room annoying, but more like someone stole-your-lunch-money annoying. Smelling smoke in the house after numerous reminders is sickening and close to infuriating. I put T.O.O.T.S. into action, calmed down, and later planted a gentle reminder — again. Doing it this way prevents an argument or fight and saves the quality of the relationship. Zip the lip — save the relationship.

– The 1-to-10 rating system of how bad the day is, which can be a grouch warning.
– Exercise, which can decrease grouch problems.
– Realizing that deep fatigue, if not attended to, will increase grouch problems.
– Understanding that ruminating on something annoying makes it worse; the key is to find a way to move past it.
– Telling people what you want from them. If you wait for them to read your mind, you will be disappointed — and annoyed.

Dealing with the irritable grouch not only requires T.O.O.T.S., but also the following

Stress, lack of sleep, not eating or hydrating properly, and disruptions in the daily routine all can act as triggers for the grouch. Self-monitoring all of this as a way of keeping the grouch muzzled is not something that happens with perfection. The grouch still barks at family and partner, but the rehab plan decreases the frequency.

Even more than that, the plan gives reassurance to those who love you that you are doing all you can. Zip the lip — save the relationship.