You know I have talked about Qigong yoga. Here is a yoga instructor with three simple breathing styles. I found it interesting. See what you think. 🙂 It only takes 12 minutes to view it.
OKAY… this device looks so cool, I had to show it to you. IF my balance deteriorates to the point I need a walker, THIS is my choice. Everything below was cut & pasted from the company’s website… Wishing I could get paid for referring you. 🙂
” The LifeGlider is intended to be used by people who struggle to walk securely and confidently, and to allow mobility without extreme fatigue or fear of falling. By securing the body’s center of gravity, the LifeGlider encourages upright posture, helps restore proper gait, and reinforces a sense of balance and confidence. Unlike a traditional walker, it can be used hands free.”
https://www.mylifeglider.com/use-cases/#parkinsons-disease
“At Core Mobility Solutions, our sincere hope is that you too will enjoy the benefits that others have found in using the LifeGlider, including restored dignity associated with standing upright, greater participation in the activities of daily living and numerous health benefits associated with moderate movement and exercise.”
THE KEY TO STABILITY: SECURING THE CENTER OF GRAVITY
“The patented LifeGlider represents an evolution in assistive mobility devices, and is unique in that it secures the user’s center of gravity. This enables upright posture and encourages proper gait, balance and greater confidence as the fear of falling disappears. Securing the body’s center also frees the hands, since gripping the device is not necessary. (No need to hold the device – the device holds you.) The arms can swing naturally, contributing to proper gait, or the hands can be used for other tasks.”
“By contrast, a traditional walker typically encourages an unnatural forward-leaning posture and a slight downward gaze; It directs upper body weight onto the shoulders, arms and hands, which can be tiring, and requires holding the hand grips to move forward – in general, just managing a traditional walker requires effort and attention. A traditional walker also presents a barrier between the user and others, whereas the LifeGlider frame is behind the user, enabling more natural and personal social contact. Most important, traditional walkers and other common commercial devices do not prevent falls.”
“The LifeGlider’s built-in seat is positioned at the tailbone and may be used to alleviate all, some, or no weight, as needed. When walking, the seat provides extra security and stability, enabling even individuals with limited leg strength to enjoy mobility and carry out daily activities.”
“Whereas traditional walkers with bench type seats allow only two positions (fully sitting or fully standing), the LifeGlider also enables a third option – partial weight support. This is useful in rehabilitation settings, as part of an exercise or strengthening routine, or simply to provide a bit of rest when needed.”
What makes you have a good day? Whether you have Parkinson’s OR NOT! [Ian’s post outlines;]
I have made a list of things I can control…
If I find that there are things that I can’t control, then there are two options left for me. I can either delegate them to my support team ( doctors, caregivers, family and friends ) or I can simply try to ignore them.By me understanding that I have most of the control, I am instilled with a certain confidence.
In order for me to understand what I have control over , I must look back and figure out what makes me have a good day?
Ian Robertson shared… parkinsons-my-super-power/take-control
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:
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.”
Pwp (people with Parkinson’s) keep telling me, if you don’t like your neurologist, fire him. I’ve been hoping third time would be a charm.
1st Neurologist said: ‘Take this medicine and I’ll see you in six months.’ The medicine made me ill (down in bed & throwing up) so I discontinued taking it.
I’d searched the internet about side effects of the medication and decided maybe I could control symptoms with exercise and mind over matter.
2nd Neurologist said: ‘Take the medicine.’ When I said; ‘no thank you. It made me ill.’ He said, ‘Then we can’t help you. Come back when you are ready to try it again.’
The 3rd Neurologist was asked to evaluate me for Myasthenia Gravis. He explained if I had energy in the morning, but lost energy as the day progressed, it would be suspect. But since I get up weary, he though I indeed do have Parkinson’s. BUT he ordered a DaTscan (possibly because I said I have ‘action tremors’ instead of ‘at rest tremors.’), although he ‘said’ he perceived at rest tremors.
People with PD will typically have a smaller signal in a part of the brain called the striatum, where the ends of the dopamine neurons are meant to be. Basically, a normal DaTscan would indicate a healthy dopamine system, whereas an abnormal DaTscan would indicate an unhealthy dopamine system.
#3 Neurologist took more time to explain WHY he felt I should try the originally prescribed medication again… also addressing strategies to minimize negative side effects.
#3 also said, “See you in three weeks“! Assuring me the visits will be frequent until my symptoms are controlled, and my life has returned to normal.
I KNOW! Sounds too good to be true. I’ve read the pros and cons… I’ve read no two PWP are alike. Some swear by the med… some swear about the med. Only time will tell which my body chooses.
As taken from the Parkinson’s News Today Newsletter Sep 3, 2019
“Sialorrhea, or drooling, refers to saliva in such excess that it spills from the mouth. This is a common and bothersome symptom of neurological disorders like ALS, cerebral palsy, and stroke, and it affects up to 75% of all Parkinson’s patients.”
“Sialorrhea can be highly distressing for patients and their caregivers and can have a significant, negative impact on quality of life. If left untreated, pooling of saliva can lead to irritation of the skin around the mouth, oral hygiene complications, speech difficulties, and sleep interruption,”
“These impacts can leave patients with compromised physical well being, as well as feeling embarrassed by their condition, causing a lack of confidence and isolation,” Isaacson added.
…………………………………..
Sialorrhea, or drooling, is the medical term for an excess spillage of saliva from the mouth. Chronic sialorrhea is when you’ve experienced this drooling for at least 3 months.
Sialorrhea can affect up to 3 out of 4 patients with Parkinson’s disease.
In many patients with sialorrhea, it’s not that their salivary glands are making too much saliva — it’s that their neurodegenerstive disease, such as PD, makes it hard to swallow. The saliva builds up or “pools” in the mouth, which leads to drooling.
For me, I think it isn’t really all that hard to swallow. I don’t feel the build up so I don’t think to swallow. So when am focusing on a task, I don’t feel the saliva building up or falling from my mouth, until it hits my hands. It is that I don’t think to swallow.
I have learned to keep a cloth in the corner of my mouth, when I retire for the night and the Amandatine is no longer in effect, to wick out the saliva.
I saw an ad today for Myobloc… an injection therapy for resolving the problem, but the possible side effects sound so horrific, I’d have to pass on giving it a try
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. 🙂
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.
I started my blog shortly after receiving my diagnosis. I hope my documenting serves as a platform to build upon, as I attempt to communicate knowledge. I am grateful that I am able to maintain positivity, no doubt because of the wonderful understanding support I receive from my loving and caring husband of 51 years….aiming for an eternity together.
From an article about PATIENT ADVOCACY (why it fails)
Parkinson’s is a cruel mistress. As the years go by post diagnosis, we shift from timid ignorance to vocal experience before gradually disappearing again, raging against the dying of the light. It is one of the most brutal ironies that one reaches the greatest understanding of the condition only as one’s ability to communicate that knowledge dwindles to the sound of silence.
………………… Let me personalize this. I have had Parkinson’s for around 13 years. During that time I have witnessed – even been part of – many initiatives aimed at improving quality of life, better understanding the condition and even hastening a cure. Often these initiatives were led by advocates now gone. And as they faded away, so did their ideas.
https://jonstamford.com/2019/08/27/better-patient-advocacy-1-standing-on-the-shoulders-of-giants
CASE in POINT… One of the conversation groups for Parkinson’s allows a person to select people to be on their team. The people I selected were the ones who seemed the most upbeat, who offered encouragement or humor. But in a relatively short period of time the tone of some communications have reflected declines… as follows:
……………………………………………………”I know how you feel. We all do. I often feel just like you. Please feel free to contact me anytime you want to talk. You will find that you are very important to us. We really are all we have. Even those of us with loving husbands and families and lots of friends are still lonely and feel isolated. We know that no matter how much we are loved no one can ever know what it’s like to walk in our shoes. There is a dreadful mindset that comes with knowing you will never be better, only worsen; Never knowing when the next slide into the next stage will occur or when the medication will stop working. But then we put our feelings, hurts, fears and dreads on line on this site and we are reminded that we are more than our disease. That we are important even if just to one another. That we are useful. That we can still help others and that where there is life there still is hope. Here you will make friends with people like J—. Isn’t he wonderful? He has gotten me out of some really dark places and he suffers with this disease as well as others often more than I do! You are in the right place Sh—-! Welcome!”
……………………………….”Let’s get to acceptance. We both have a disability, but we can still make a difference in people’s lives. You are out there greeting new people and offering encouragement to those who are gravely ill.
You are doing the Lord’s work. Building up treasure in heaven. You have nothing to fear. You’re on the right path.
Acceptance is where the healing begins. I’ve been burning for almost ten years now. Never ending pain. But helping others heals.
We both have dyskinesia. So be it. The people who care about us accept us as we are.”
……………………………………….”I k ow it sounds crazy but you, St—-, Me— and Ca— are my closest and dearest friends. I love the four of you as if I’ve known you all my life! My husband loves me with all his being but he can’t know what I feel or who I have become, not like you all do. You didn’t know me before, just 2 years ago before the bottom fell out and plunged me from mild early stage to deep mid stage with accompanying complications. I was on fire! Electric! I was beautiful, poised and smart, really popular and very powerful politically! I loved people and I adored kids and they loved me! I was a dancer and a runner. I hosted parties the whole town talked about. I tried to help everyone I knew. I was a good person. My husband and my son were so proud of me! Now I spend my days playing games on my phone, reading email and suffering through the side effects of my medications. I can’t think anymore so reading is difficult. Fr– and I were both avid readers and we have a vast library. I was a deacon and a ministry leader in my church. I haven’t been in a church in over 2 years. My balance is very poor and I fall a lot. Most of my clothes are pull on elastic waist because I have a hard time with buttons. I could go on and on. Do you get what I am saying? I don’t know who I am anymore! My medications make me sicker than my disease! I can’t even laugh anymore. This is no way to live. I hope you were serious when you said you were a good listener!”
………………
As I have looked for insights into how a person with Parkinson’s or any illness should eat, I found the article Eating “Healthy” Destroyed Me VERY insightful. In the article by Ema Hegberg (found at Medium… link to article is at the end of this post.) Ema said: “I was doing everything right but it felt so wrong“
“It was a gloriously golden, warm September afternoon and I was crumpled up in the fetal position on my bedroom floor, ugly crying. I had nothing left in me. I was a twenty three years old, newly married, employed, financially alright, plant-based vegetarian, and for the six hundredth day in a row, I felt horrible.
I was supposed to be packing for a leisurely weekend camping trip but I could not muster up a shred of mental, physical or emotional energy to pack or prepare. In frantic texts to my new husband, I described myself as “drained,” “zapped,” “dried up.”
Somewhere in my exhausted tears there was frustration. This should not be happening to me. I had been a vegetarian for a decade; for the past five years, I had been eating a “clean,” plant-based diet. I took a B complex, I didn’t have anemia, I drank vegan protein shakes almost daily even though they made me cringe, I drank enough water, I slept well. I should be ok. Yet here I was, crying at 2pm because I felt like zombie.
And then a strange thing happened. I had not had animal protein in ten years and I hadn’t craved it in nearly as long, but suddenly my body instinctively called out for meat.
A few days later, I ate chicken. A week or so later, I had sausage. I was a carnivore again. Slowly, I regained strength.
When I gave myself permission to eat meat again, I started to look at all the many other foods I had demonized and just how sick I had become.
After that, I whittled down the list of “safe” foods more and more.
I would allow no processed foods; everything had to be in a form that my great-grandmother would recognize. I had read that on a wellness blog somewhere;…………….
I wouldn’t eat granulated sugar, because sugar “lights up” your brain the same way cocaine does. (As it turns out, so does sex and laughter.) All sugar had to be “natural:” honey, maple, coconut.
I severely limited my dairy…………………………………..
Gluten was of course suspect. It seemed to be like the tobacco of our time; everyone was doing it but silently it was killing us…………
Eggs were questionable. ………………
I’d never picked up a coffee habit, which was good because coffee could shorten your life. Green tea was better. No sugar, no milk.
Vegetable oils were just downright bad. ………………………….. So I only ate olive oil uncooked. But that was ok because I had coconut oil, a gift from the gods.
I can come up with that list very easily because that is pretty much all I ate for four years. Seldom did I “cheat.” It wasn’t worth it and I knew it. Eat one of the forbidden foods and I would kick myself for hours or days afterward. Psychosomatically, I would feel uglier and fatter after slipping up and eating something made with canola oil, or a small piece of dark chocolate with refined sugar.
And every day, after eating like this, I felt so righteous. I did yoga almost every night. Each day, I walked all over my college campus with a twenty pound backpack. I got eight hours of sleep. Frequently, people commented on my weight and how delightfully “skinny” I was (five foot seven, 125 pounds). I was doing everything right; I was being so very good.
It felt like the food I was eating would get stuck in my esophagus. ………………………………….. I stumbled onto some research about b12 deficiency in vegetarians — something no doctor had warned me about — so I started taking b12. The pains abated.
Then my energy levels plummeted.
…………….. I tried a naturopath, who if nothing else recommend an elimination diet to figure out what food sensitivities I had (because I must have at least one). …………………………..
Daily, for at least four years, I had a deficit of several hundred calories. This did not cause me to lose any weight because my body had gone into starvation mode. Functionally, I had no muscle. The only micro-nutrient I got all of my daily value of was fiber; everything else I lacked, but specifically I wasn’t getting enough protein. I got maybe a tenth of the protein I needed, and it was never a complete amino acid profile. My total cholesterol was, at its lowest, 113mg/dL. There is research to show that cholesterol as low as mine increases risk for depression, anxiety, suicide, cancer and heart problems.
Other curious things from this time: ……………………………….. All of these things have resolved since my eating got broader.
I was devoted to several. Their promises of health equated to enlightenment in my eyes, because I’d never felt fully well. (In retrospect, I’d been severely anxious since age five and had very low self esteem.) The bloggers —almost entirely white females — were beautiful, glowing, thin, confident and they accomplished great things. They published books, the jetted off to Bali and Spain, the wore amazing clothes and did yoga in the sunshine. I was a sad, quivering American teenager who was homeschooled and friendless. Wellness blogs played upon every insecurity I had.
…………….. I believe I had an eating disorder, just not the kind everyone talks about. Mine was called orthorexia, meaning I was eating “too well.”……….
Although I’ve nearly always had anxiety, my depression, I believe, was largely sparked by my “healthy” diet. While people praised how saintly an eater I was, my body was begging for more nutrients. ……….. When I started to eat meat again, my depression began to fade.
I remember every detail of the first time I ate a processed food again; I had Late July brand tortilla chips. A very kind new boyfriend (now husband) accepted my issues with food and patiently walked me through the stages of my guilt. The same day we had dried organic pineapple rings that were lightly sweetened with granulated sugar. It was a big day for me.
Reconditioning myself to be ok with the foods I’d categorized as “bad” has taken time and there are moments when my twisted perceptions of eating creep back in. Now I eat just about whatever I please. My diet is still composed of mostly fruit and vegetables, and I am the most clear headed I can recall being. For the first time, I have muscle and I can tan.
What the wellness bloggers portray is no longer what I’m after. Yes, they look lovely but I’ve no way of telling if they actually feel present and strong. That’s what I want now, and the only way I can get there is if I care for my body in a way that it understands. Deprivation is not its love language. It needs bounty; it needs grace.
A dear friend shared an experience with us: Max (such a knowledgeable, inspirational giant) was on the road as a guest speaker in a “Know Your Religion” series, when he experienced an acute attack of ‘Montezuma’s revenge’(or food poisoning.) An hour away from facing the horrible prospect of disappointing a huge room full of eager conference participants, Max said an impression came to him… ‘Physician, heal thyself’
Being a scriptorian, Max knew Luke 4:23 And he said unto them, Ye will surely say unto me this proverb, Physician, heal thyself: whatsoever we have heard done in Capernaum, do also here in thy country. BUT this was the first time he saw the need for applying it in his own life.
So… He PRAYED… for healing… and when Max rose from his knees, he miraculously was able to shower, shave and make it to the scheduled venue, feeling well.
I recalled his healing story as I saw a blog entry that said: ” As you approach the world of Fighting Parkinson’s Drug Free, remember the words of Dr. Zhi Gang Sha, “I have the power to heal myself. You have the power to heal yourself. Together we have the power to heal the world.”
My purpose here isn’t to say we should be able to pick up our beds and walk. I actually want to type about incontinence … ponder the following blog entry:
“……………….As PD progresses, you wake up one morning and have a new symptom. Sometimes symptoms lessen when a new one takes prominence.
Recently My bladder urgency changed for the worse when I unknowingly had a urinary track infection (UTI). Not to get too graphic, but I was buying incontinence products in vast quantities and using them frequently. The sheer number of accidents were overwhelming. And I was severely depressed about the situation.
Other PD symptoms paled as I faced a life in diapers. Fortunately the UTI cleared up AND I took action to tighten my pelvic muscles. There are home use machines that an individual can buy that help women tighten the muscles near the bladder. I took a chance on one, and I am very very happy with the outcome. I am beating my incontinence. The savings I have by not buying adult diapers will more than cover the cost of the device.
My attitude has changed from despair to quiet optimism.”
The point I wish to make is… although every person with Parkinson’s has evolving symptoms, not every Parkie will experience help with symptoms in the same way. Faith that Heavenly Father knows me, and how to enable me to grow from the experience gives me peace. Some people wish to tackle their symptoms drug free, while others feel compelled to seek relief following mainstream protocols. BUT I hope everyone is willing to take advantage of advancements in tools which may instill quiet optimism.
Standing up to Parkinson's 