The url for this blog includes the phrase: silver linings and parkinsons so, I wanted to share a silver lining another Parkie typed:
“BTW, my tremor rocked an infant to sleep this week!”
When I looked at this slide, I wondered… ‘What does ideopathic mean? …denoting any disease or condition or syndrome that arises spontaneously or for which the cause is unknown.
When I first told a friend I had been given the diagnosis of Parkinson’s, the first thing she said was… “I’m sorry. My dad had Parkinson’s… he died by choking to death… my mother was feeding him.”
Yiikes! Being aware of the possibility of such an outcome gave me the impetus to be proactive. With the recommendation of my Primary doctor I got a vaccination for pneumonia. Additionally, I have read : “Dysphagia is the main cause of aspiration pneumonia and death in Parkinson disease (PD) with no established restorative behavioral treatment to date.”
“Dysphagia is a disorder that causes difficulty in swallowing and successfully moving food from the mouth to the stomach. Other signs and symptoms associated with dysphagia may include: (I bolded the ones I frequently experience)
“Difficulty swallowing can lead to:
Remember I said I want to be proactive?… the literature says:
“no established restorative behavioral treatment to date.” But… in my research, I found a study being done in California, using a device to determine the impact it would have on swallowing for Parkinson’s participants. So perhaps in the future…
I’d had an irritating cough which I’d endured for years until in this last year was resolved when an ENT dr prescribed stronger doses of meds for gurd and post nasal drip than previous doctors had prescribed. I recently expressed my concerns to my primary care doctor who is following my Parkinson’s… “Perhaps I should have kept the cough, because it provided exercise to my lungs?” His adamant view was ‘NO! a cough is indicative of an irritant… which should be eliminated. He then demonstrated several breathing exercises he recommended as a better way to increase my lung strength. 🙂
This past Wednesday, my husband, John, had a hip replacement surgery, and as a precaution, for his lung health he received a spirometer. [photo below] the instructions were to exhale, and then after placing the mouthpiece in your lips, INHALE trying to elevate the floats. John could raise the float on the left till it was totally into the clear space labeled: ‘Good’, ‘Better’, ‘Best’. The float on the right would rise to the 2500 line.
When I opted to try it, the float on the left moved only 1/3rd the way up into the ‘Good’, ‘Better’, ‘Best’ clear space. The float on the right came up to 1750. (the potential shown goes up to 5000)
My goal is to incorporate the instructions the nurse explained to John… Do three breaths at a time, at least ten times throughout the day. She suggested when watching tv, everytime an advertisement comes on, take three breaths.
Then, being curious, I went to the internet to see if I could find other tools with a goal to exercise for breathing, and I found the expand-a-lung [pictured below] But NO therapys to address the ability to swallow, unless you call thickened beverages a therapy. However… When I did the LOUD therapy for my soft voice, I was told it would also strengthen my swallow.
The Expand-A-Lung® inspiratory/expiratory breathing resistance trainer is a breakthrough product for improving endurance through better breathing and lung function. Research supports that this breathing exercise significantly improves the strength of respiratory muscles, and increases the volume of lung oxygen intake. It is also an excellent exercise for COPD patients to get rid of the trapped air in the alveoli for better gas exchange. This will surely improve breathing and reduce shortness of breath.
[I copied the four small paragraphs from the article linked below… I found it fascinating]
“However, Prof Jog was surprised that the treatment was long-lasting and worked even when the implant was turned off.”
“He believes the electrical stimulus reawakens the feedback mechanism from legs to brain that is damaged by the disease.”
“This is a completely different rehabilitation therapy,” he said. “We had thought that the movement problems occurred in Parkinson’s patients because signals from the brain to the legs were not getting through.”
“But it seems that it’s the signals getting back to the brain that are degraded.”
“I still don’t get why people are so surprised that the turtle beat the rabbit over the long run.
Consistent effort no matter how small, sparks magic, fills sails, butters bread, turns tides, instills faith, summons friends, improves health, burns calories, creates abundance, yields clarity, builds courage, spins planets, and rewrites destinies.
No matter how small,” (author unknown)
If you wait for perfect conditions, you’ll never get anything done.
This article about the brain’s master chemical, dopamine, is a little lengthy, but pretty informative and also gives ten natural ways to increase a person’s dopamine levels:
Christina Sarich, Guest in Waking Times
“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.”
“Dopamine is what rewards certain behaviors in us so that we do them again, and why certain drugs are so addictive. Cocaine, heroine and other opiates cause a dopamine “super reward”which makes their use highly desirable, until you experience the dopamine crash that comes once the illicit drug is absent from the physiology.”
“The opiates bind to the opiate receptors in the brain, increasing a dopamine release, but once gone, there is an ever-increasing need for more opiate (or other drug) to induce the same dopamine-high. This is what causes drug addicts to resort to ever increasing, negative behaviors to get their next “fix.” The dopamine high is that desirable.”
“In experiments conducted with mice, when the same nerve bundle that causes an opiate release was stimulated when they pressed a lever, the mice, left to their own devices, would press the lever thousands of times in an hour, due to the pleasurable feelings the dopamine would induce. A later experiment (conducted unethically on a human being) showed a similar response. Over the course of three hours, a person would press a button which triggered a dopamine dump thousands of times to get an immense emotional boost.”
“We get little dopamine dumps in our brains with less destructive behaviors – like making money, having sex, and even winning a video game, but there are dopamine boosting activities that can regularly boost our “pleasure” neurotransmitter, without causing an addictive backlash.”
“We have a certain number of dopamine neurons in the brain, and they are smaller than other neurons, making up less than 0.0006% of the neurons in the human brain, but we can stimulate the powerful nerve bundle in the brain that links dopamine neurons with their targets in the forebrain.”
“Dopamine does more than just boost our happiness quotient, though. It is also responsible for regulating our muscle movement, improving cognitive function, helping keep us focused, make decisions, evaluate problems and solve them, and regulating the secretion of prolactin.”
“Dopamine is undoubtedly, extremely important for our well being and happiness. Without high dopamine levels, we tend to experience depression, sadness, confusion, fear, negative thinking, rumination, and other emotional obstacles.”
“Following are some 100-percent-natural ways to increase your dopamine levels:”
“Exercise elevates dopamine D2 receptors in the brain. It also happens to increase serotonin, and other endorphins in the body as well. Regular exercise can help prevent depression, reduce stress, and strengthen the mind just as much as it strengthens the body.”
“The brain dumps a little dopamine every time we successfully accomplish a task – no matter how big or small. To get even more dopamine “hits,” then break up big tasks into smaller pieces, and check them off one by one. This habit also has a tendency of keeping you moving toward your goals, and clearing the mental clutter in your mind.”
“The Principles of Self-Management state that if a task represents a change of 25% (or bigger change) in your life routine, you will feel disinclined to finish it, and often end up self-sabotaging or giving up. Conversely, making small changes (around 10%) keep you going in the right direction, and increase your pleasure.”
“The essential amino acid, tyrosine is a precursor for dopamine. By eating foods that contain tryrosine, you can naturally boost dopamine levels. Find tryrosine in things like:
“It’s a big word, but it is basically an endotoxin that causes your immune system to go berserk. Lipopolysaccharides also inhibit the production of dopamine. By eating foods which protect the gut, such as yogurt, kefir, kimchi, and taking probiotics, you can lower your lipopolysaccharides, and allow dopamine to be created with ease.”
“While we’re on the topic of toxins, it is important to regularly detox. The accumulation of too many toxins in your body can prevent dopamine production. There are a myriad ways of detoxing, from green juicing, to taking activated charcoal, or doing a yogic master cleanse. The less toxic you are, the more super-charged your dopamine levels can get.”
“One of the easiest, and quickest ways to get a beneficial dopamine dump in the brain is from listening to music. Music creates “peak emotional moments” by making our brains “sing.”Music has been helping people feel uplifted since Paleolithic times. It’s that tried, and true.”
“It doesn’t matter if you express your creativity by doing arts and crafts, or writing an entire symphony, any creative activity increases levels of dopamine. Dance, take a figure drawing class, write a poem, cook something new, or even attack an auto-repair project with creative gusto, and you’ll be rewarded with higher dopamine levels.”
“Not only will this behavior increase dopamine levels, but it also happens to be the foundation for creating new, positive habits. See how many times you can do one new thing (like recycling your plastic or skipping soda) and mark it down on a calendar or tear sheet. See how long you can make the winning streak last.”
“Dopamine levels can also be raised through supplementation. Try:
“Meditation and yoga can effectively alter brain mechanisms that allow for bigger dopamine dumps. One of the reasons consistent meditators handle stress better, and usually feel good is due to an increase in GABA and dopamine. Meditation also releases us from the conditioned neural pathways which block the release of dopamine and other feel-good neurotransmitters.”
I really liked this message. I hope it resonates with you’all.
“Live Your Best Lesson 3: Accept Limits”
“Contentment. The word alone can produce a ripple of frustration in my soul: I imagine a quiet peacefulness that’s at odds with what I often feel my life to be. I’ve known people who seem to inhabit that kind of space, and I’ve always wondered what it might be like.”
“I remember being sixteen and sitting on our front step one hot summer day in Kansas, bored out of my mind, wishing I was older and could take on all the amazing things that only adults get to do. I wonder if this doesn’t represent the first seeds of my discontent. A restlessness that only now, many years later, is being tamed by Parkinson’s, of all things. It’s an unrelenting master. You may dance with it, but it will choose the music and the timing. At best, you can only follow along.”
“I’ve come to terms with this fact. That is, the nurse in me understands the clinical reality; I can say the words out loud without flinching. I’ve also taken it that difficult step further: I acknowledge that modern medicine cures very little and that I’ll likely go to my grave with this new best friend whom I hate.”
“Surprisingly, this has brought me a level of peace, of contentment.”
“Sounds insane, I know. Does my acceptance of Parkinson’s equal a lack of courage to move forward? Not at all. Instead it gives me a foundation from which to attack the future. I can’t change the fact that I have Parkinson’s. It doesn’t mean that I can’t live well with the disease and that I can’t work for a cure. But until I accept reality, I’ll never be able to successfully move forward and I’ll never know true contentment.”
“What is contentment? Is it merely “a state of happiness and satisfaction,” as it’s defined? I think it’s more than that. I think it involves a choice—but do you always have one? Yes and no. I can’t choose to not have Parkinson’s, but I can choose how I respond to it. The disease is a hard thing to bear, but is it any more difficult to choose contentment? Parkinson’s has taken my ability to run as well as I did, but what good would it do me to daily lament that I can no longer manage a seven-minute mile? It seems like a silly notion. The disease has also taken my ability to function as a nurse—and of what value would it be for me to lament this loss? Yes, there is an appropriate mourning to be had, but at some point I need to move on.”
“Here’s the hard part, the part that many people facing life-changing circumstances struggle with: “What can I do to remain productive and useful?” One practice I have is to list the things I can still do and then ask how these might be used to help others. I would encourage you to start your own list, keeping in mind that no ability is too small or insignificant to make the cut. Now, how might you deploy these to put a smile on someone’s face or ease their burden?”
“When we take the time to draw up an inventory of our lives, we find that things may not be as bleak, we may not be as barren in ability, as we thought. We can choose to accept our shortcomings and embrace what we can do.”
“Our lives are finite. We all know we’ve been given a certain number of days; it’s just that we rarely like to think about it. Parkinson’s has driven this reality home. It has encouraged me to make good use of my time, knowing that it could be taken from me. It’s a matter of being courageous enough to acknowledge that truth—and to recognize that our time is also infinite in the sense that every day we can choose innumerable ways in which we might live our best. The options before us are limited only by our imagination and our willingness to dream new dreams.”
“Early this spring, an arborist came by and inspected the magnificent old elm tree that had stood in our yard for as long as we’ve lived here. It was a truly beautiful tree, the largest for blocks, its branches extending into our neighbor’s yard and creating a canopy over the street. We were told that the tree had a major split down the center of its huge, bifurcated trunk and would need to be cut down. It was hard to believe: the tree looked healthy and strong, with no visible sign of disease. Nonetheless, it stood on city property and had to go.”
“We were dreading that day. Now Sheryl was in tears as we witnessed the speed and cold efficiency with which our tree was brought down. Giant branches came thudding to the ground; they were thrown into the chipper and all but vaporized. In short order our mighty elm was reduced to sawdust and chips, our yard left with nothing but little mounds of dust dotting the newly fallen snow. When our daughters arrived home from school they cried.”
“We’ll mourn the loss of this beautiful tree, but in time we’ll move on. It’s inevitable. And it’s necessary, even healthy that we do so. But that doesn’t mean we’ll forget; rather, we’ll plant a new tree where the old one has fallen. This is what it is to Live Your Best—this is contentment in the living. We can’t change the fact that the tree had become unsafe. So in its place we’ll plant anew, begin a new season of growth. And that tree will bloom with a beauty that couldn’t have existed had the old one not come down.”
“Parkinson’s has brought a certain closure to my past life—you could say that it has felled it. But I can plant anew; I too can experience new growth and new beauty. When I accept limits and practice contentment, I can look forward to all that will be as I learn to grow in this new life I’ve been given. It won’t look the way I had imagined, but I’m confident that it will be all that it should be.”
“As a nurse I’ve watched as individuals and families fight hard against illness and even death. I’ve seen the frustration, the anger, the hardness that comes over people when they realize that they won’t have their way over their ailment. I’ve watched them leave this life with sour, bitter souls, angry at the hand they’d been dealt. But I’ve also witnessed what happens with those who are content with the life they’ve been given: rather than feeling resentful about what they didn’t have, they leave this world full of gratitude for all they did. The difference is striking, and it’s compelled me to continually weigh my own life. And when its totality is placed in the balance, there’s no reasonable response other than contentment.”
“That doesn’t come easily to someone who’s often been described as a Type A personality. I like to know where I’m going, to control the pace and the course. I’ve always had the sense that there are more challenges to be taken on and tasks to be accomplished. So learning to simplify my life is a daily struggle that involves all aspects of my being.”
“It helps to learn the boundaries of control—that I can still do many things, but in a more thoughtful manner. For example, because I think better early in the day, mornings are best for higher-level cognitive work. But that’s also when I have more physical energy. And since I can’t go to the gym every morning and get other things done as well, I need to stagger my morning activities over the week. So I do have some measure of control; it just looks different than it used to. And a big part of accepting limits is setting reasonable goals for myself each day. The choice is never easy, but it is simple.”
“This blog post is an excerpt from the book
Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”
I always wrote small… but without added concentration and effort, my handwriting had become unintelligible and even smaller.
The weakness in a person’s hands not only impacts handwriting, but proves equally difficult to open bottles, shuffle cards, operate a hand held can opener, etc…
Besides the exercises in the YouTube link for flexibility and strength,
I tried the exercise as described in a post (see below)… and have taken a sampling of my handwriting, before and after.
“crazy hand and arm exercise” Bend your elbows with hands in front of shoulders. Vigorously shoot your hands and arms in front of you as if you are flinging water off your hands, with fingers stretched wide as you can. Do this ten times as fast as you can…then write your name. Try it…before and after. Learned it in PT. I do this plus vigorous arm swinging, alternating sides in order to get my bra on, lol.
You’ve no doubt heard the saying, “Fake it till you make it.” I need to work harder to adopt the attitude. 😦 I REALLY appreciate it when people at church tell me; “Your face has more expression today…it isn’t so deadpan.” and “Your voice seems stronger today.” or “Your looking good.”
The truth is… I can’t tell if there is some improvement or if I am just figuring out how to regulate my supplementation that aids me to keep myself awake and energized.
When one of my wolf pack sisters told me today … “You look way better than you did,when I saw you during the week.” I should have simply said “Thank You.’ But, I crinkled my nose, in disbelief… because the time had lapsed for my supplementation…and my get up and go had got up and left.
The word of the day is QUANKED. Listed in “A Glossary of Words Used in the County of Wiltshire,” by Dartnell and Goddard (1893), it means “overpowered by fatigue.”
Life has been time consuming, so I haven’t posted in the blog for a few days. I’m just sharing a couple insightful photos I found. I found the spelling funny.
A little stress can actually be a good thing. But, most of us (with or without a Parkinson’s diagnosis) prefer desserts.
Did you know? Baby elephants throw themselves in the mud when they get upset.
The baby looks ‘quanked’ to me. Check tomorrows post, to learn why I say that. 🙂
I have compiled a few writings from other positive, upbeat Parkies. I’d like to take a survey. please type * 1, *2, *3, *4, or *5 on the comment below and let me know which excerpt resonates the best message. Thanks.
Ian Robertson wrote: * 1 “I know you shouldn’t judge a book by it’s cover, BUT.. how others see your body mannerisms is the start of how they will perceive you, and you haven’t yet said a word. The start of being judged and or evaluated in life by others, whether it is sports, academia or by physical disorders, is usually done Visually. So to get someone to react positively to you it all starts by showing that you are someone positive to be around.”
Christine Bacon wrote:
* 3 “We do need to be as positive & proactive as possible or will get overwhelmed and ineffective in dealing with our bodies health issues. However it is a process, even a grieving process, for what we have lost and might loose. Everyone deals with this differently and in our own time.That is truth. And it takes time to work thru it all. Those who seem “less positive” or even negative need to be able to express some of those feelings to get to healthier thinking and then the ability to move forward. And better to be gently sympathetic, understanding and encouraging, lifting up. rather than critical & impatient, beating down One cannot be where he isn’t just because you or I think he should be there!. I personally am not at a place where I am thankful or feeling blessed about having PD. I struggle daily to be positive & to find the energy to act to do what I know I have to do to feel better. But I am certain God loves me & can use this for good, if I let Him. And I intend to eventually make peace with PD, but don’t think we will ever be friends!
Michael McCaughey wrote:
* 4 “…sound like I’m splitting hairs but I always cringe a little when I hear people say “I’m fighting Parkinson’s” or fighting cancer or whatever they’ve decided they don’t want. Anything you fight weakens you and anything you’re for empowers you. I am not fighting Parkinson’s, I am for a healthy body. I am for a healthy lifestyle. I focus on creating the best version of me. I want to know what you are for, not what you are against. Whatever we put our attention on grows. If all we think about everyday is Parkinson’s and how bad it is and fighting Parkinson’s and the terrible symptoms, that is what will grow in our experience. Choose to focus on the good in your life and that will begin to grow. Think of and focus on all the little things that we do that make us feel better. It’s different for everyone but it may be exercise, meditation, healthy diet, visiting with your grandchildren or even just counting the things that we are grateful for.”
Thank you for responding to the survey by typing a number in the comment section below.
Standing up to Parkinson's 