Month: July 2020

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.

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. 

Rest, Play, work, food, movement, reading, friends, solitude, pets, long walks and Fish oil

Medicine.jpg

Tom is a lifelong nutrition enthusiast who recently retired from his career in pharmacology to write about natural health. When he isn’t researching health products, Tom enjoys exploring local farmers markets and growing his own organic vegetables. Tom_at_tom@smarter-reviews.com

This is what he had to say about What to look for and what to avoid when buying fish oil

Omega 3 essential fatty acids have become a household name, and everyone knows how critical they are for supporting the heart, brain, joints, skin, and more. 

Unfortunately, there are so many Omega 3 fish oils on the market that it’s easy to assume a one-size-fits-all mentality and simply grab any brand off the grocery store shelf. Many of these products, however, won’t provide the right nutrients, and in some cases, may hurt more than help. 

We created this guide to help you avoid choosing an ineffective and potentially harmful fish oil. We’ll show you what to look for, what to avoid, and the top mistakes buyers make when purchasing their omega-3 supplements. 

Choosing the Best Omega-3 Supplement For You

The best omega-3 fish oil supplements are always processed and manufactured by reputable companies, using natural sources, and tested thoroughly for harmful or undesirable contaminants within the ingredients. 

Unfortunately, many brands don’t live up to these standards, and shoppers don’t realize they’re buying a substandard product. With that in mind, we listed some common mistakes made when purchasing an omega-3 supplement.

Another way to avoid choosing the wrong fish oil is to read its ingredient label. Fish oil is so popular that many of us already know some of the information above, so we’ve included some lesser-known tips for even the most omega-3-savvy:

The 5 Best Omega-3 Fish Oil Supplements On The Market

Based on our own extensive research, combined with the metrics provided by our Smarter Reviews Ranking System, and consideration of numerous reviews by Smarter Shoppers just like you, we’ve compiled a list of what we’ve found to be the top five products in this category, on the market today.

Additional encouragement for taking fish oil. Fish oil and Parkinson’s

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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.

 

Of Mice and Men

It remains to be seen if the success with mice can also be incorporated in humans. But the implications from this recent Press Release from the University of California in San Diego are incouraging.

June 24, 2020 | By Heather Buschman, PhD

One-Time Treatment Generates New Neurons, Eliminates Parkinson’s Disease in Mice

Inhibiting a single gene converts many cell types directly into dopamine-producing neurons

Left: mouse astrocytes (green) before reprogramming; Right: neurons (red) induced from mouse astrocytes after reprogramming with PTB antisense oligonucleotide treatment.

Xiang-Dong Fu, PhD, has never been more excited about something in his entire career. He has long studied the basic biology of RNA, a genetic cousin of DNA, and the proteins that bind it. But a single discovery has launched Fu into a completely new field: neuroscience. 

For decades, Fu and his team at University of California San Diego School of Medicine studied a protein called PTB, which is well known for binding RNA and influencing which genes are turned “on” or “off” in a cell. To study the role of a protein like PTB, scientists often manipulate cells to reduce the amount of that protein, and then watch to see what happens. 

Several years ago, a postdoctoral researcher working in Fu’s lab was taking that approach, using a technique called siRNA to silence the PTB gene in connective tissue cells known as fibroblasts. But it’s a tedious process that needs to be performed over and over. He got tired of it and convinced Fu they should use a different technique to create a stable cell line that’s permanently lacking PTB. At first, the postdoc complained about that too, because it made the cells grow so slowly.

But then he noticed something odd after a couple of weeks — there were very few fibroblasts left. Almost the whole dish was instead filled with neurons.  

In this serendipitous way, the team discovered that inhibiting or deleting just a single gene, the gene that encodes PTB, transforms several types of mouse cells directly into neurons. 

More recently, Fu and Hao Qian, PhD, another postdoctoral researcher in his lab, took the finding a big step forward, applying it in what could one day be a new therapeutic approach for Parkinson’s disease and other neurodegenerative diseases. Just a single treatment to inhibit PTB in mice converted native astrocytes, star-shaped support cells of the brain, into neurons that produce the neurotransmitter dopamine. As a result, the mice’s Parkinson’s disease symptoms disappeared.

The study is published June 24, 2020 in Nature.

https://ucsdnews.ucsd.edu/pressrelease/one-time-treatment-generates-new-neurons-eliminates-parkinsons-disease-in-mice

Incontinence

Whew! I think this is about the last symptom I had listed in the Index, but I haven’t addressed the cognative issues and mental issues yet, so my work isn’t done.

Urinary Incontinence. People with Parkinson’s disease (PD) may experience bladder problems. The most common difficulty is a frequent and urgent need to urinate, even when the bladder is not full.

For PD patients, bladder issues are often due to fluctuations in dopamine levels affecting the bladder muscles and nerves, which are critical to how it functions. PD is also thought to impact the nerve pathway between the bladder and the area of the brain that controls bladder function.

Many PD patients end up having other bladder problems, including issues with urgency and frequency. Nocturia, or the need to urinate many times during the night, is also common, along with difficulty in emptying the bladder.

Half of all women and 17% of men will experience urinary incontinence, or the inability to hold urine,… for Parkinson’s disease patients, those numbers escalate.

the excerpts above were taken from: https://healthblog.uofmhealth.org/brain-health/parkinsons-disease-and-your-bladder

Constipation / Gastroparesis

The enteric nervous system controlling the GI tract is part of the autonomic nervous system which is affected in PD. Gastroparesis occurs in most people with PD, as contractions in the GI tract become sluggish. This is why constipation is so common in PD, often appearing years before motor symptoms.

The ways in which Parkinson’s disease can increase the risk of constipation include: lack of dopamine (a neurotransmitter) in the brain – impairs control of muscle movement throughout the body. Bowel muscles can become slow and rigid.

Constipation is a common complication of Parkinson’s disease, but it can be managed with lifestyle changes such as adding extra fibre to your diet, or medical treatment.  Many people who have Parkinson’s disease notice difficulties with constipation before they notice motor symptoms such as tremor or stiffness.

I’m going to simply direct you to a document that covers just about every thing about what can help.. except I didn’t see my solution. I take 1 capsule of Tripple Magnesium Complex (ordered from Swansons) along with 1 capsule of Cape Aloe 250 mg (ordered from NaturalHealthySolutions.com) each morning and each evening. Both products attract fluid to the digestive zone helping things to be soft enough that, with digital stimulation, movement can be iniated.

https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/parkinsons-disease-and-constipation

Tremors

Tremor can be classified into two main categories:

Parkinsonian tremor

Parkinsonian tremor is a common symptom of Parkinson’s disease, although not all people with Parkinson’s disease have tremor. Generally, symptoms include shaking in one or both hands at rest. It may also affect the chin, lips, face, and legs. The tremor may initially appear in only one limb or on just one side of the body. As the disease progresses, it may spread to both sides of the body. The tremor is often made worse by stress or strong emotions. More than 25 percent of people with Parkinson’s disease also have an associated action tremor.

Resting tremor occurs when the muscle is relaxed, such as when the hands are resting on the lap.  With this disorder, a person’s hands, arms, or legs may shake even when they are at rest.  Often, the tremor only affects the hand or fingers.  This type of tremor is often seen in people with Parkinson’s disease and is called a “pillrolling” tremor because the circular finger and hand movements resemble rolling of small objects or pills in the hand. 

Action tremor

Action tremor occurs with the voluntary movement of a muscle. Most types of tremor are considered action tremor. There are several sub-classifications of action tremor, many of which overlap.

Most of the tremors I have experienced are Action tremors. Which means, they happen when I am actively trying to do something. All I need to do, to stop the tremor is to relax my hand, or leg, etc. The problem comes when I need to maintain a grip, because I am carrying something or lifting a utinsel toward my mouth, because if I relax it would result in a dropped item or spilled food. I have learned to use two hands when carrying items I would previously carried with one hand, and lay my fork down while I chew. I feel very fortunate that I am able to relax my feet, legs. arms, hands and even my chin/jaw with ease.

A tremor is most commonly classified by its appearance and cause or origin.  There are more than 20 types of tremor.  Since I don’t manifest very much resting tremors but have many non-motor symptoms, the Doctor ordered a datscan, to confirm I had a significant lose of dopamine… thus Parkinson’s instead of essential tremor

Essential tremor

Essential tremor (previously also called benign essential tremor or familial tremor) is one of the most common movement disorders.  The exact cause of essential tremor is unknown.  For some people this tremor is mild and remains stable for many years.  The tremor usually appears on both sides of the body, but is often noticed more in the dominant hand because it is an action tremor.

This information was found at: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tremor-Fact-Sheet#: