… get up and change it yourself. (Mark Cooper)
My friends, this is a link to Karl Robb’s blog post: Sequestered Gratitude
It isn’t a long read, but I liked it. Hope you do, too.
Category: perceptions
Peace of mind and piece of mind.
John completed moving our infrared sauna into our bathroom, where he removed the large garden tub. It looks so nice. I’ve used it the past three mornings.
I was looking on the internet last night, to see if I could find anything to verify what I thought I had heard, about the virus not surviving in heat. Our hottest setting on the sauna is 140 degrees. When I found the link below, from the World Health Organization, I felt to share.
https://www.who.int/csr/sars/survival_2003_05_04/en/
“Heat at 56°C kills the SARS coronavirus at around 10000 units per 15 min (quick reduction)”
| Formula | (56°C × 9/5) + 32 = 132.8°F |
According to the formula; 56 degrees centigrade translates to 132.8 degrees fahrenheit. I’m thinking as a preventative, we will spend 30 minutes each morning in the sauna, set at 140, and do breathing exercises to remove stale air from our lungs and increase our stamina. Nothing ventured, nothing gained.
For our peace of mind, we shall encourage those who reside in our home to bring their towels, two at a time, and spend 1/2 hour deep breathing after they return from work or picking up necessities.
And I also want to share a piece of mind that was shared with us
…Common Sense
“Since they are calling on Respiratory therapist to help fight the Corona virus, and I am a retired one, too old to work in a hospital setting. I’m gonna share some common sense wisdom with those that have the virus and trying to stay home. If my advice is followed as given you will improve your chances of not ending up in the hospital on a ventilator. This applies to the otherwise generally healthy population, so use discretion.
1. Only high temperatures kill a virus, so let your fever run high. Tylenol, Advil. Motrin, Ibuprofen etc. will bring your fever down allowing the virus to live longer. They are saying that ibuprophen, advil etc will actually exacerbate the virus. Use common sense and don’t let fever go over 103 or 104 if you got the guts. If it gets higher than that take your tylenol, (err on the side of safety) to keep it regulated. It helps to keep house warm and cover up with blankets so body does not have to work so hard to generate the heat. It usually takes about 3 days of this to break the fever.
2. The body is going to dehydrate with the elevated temperature so you must re-hydrate yourself regularly, whether you like it or not. Gatorade with real sugar, or pedialyte with real sugar for kids, works well. Why the sugar? Sugar will give your body back the energy it is using up to create the fever. The electrolytes and fluid you are losing will also be replenished by the Gatorade. If you don’t do this and end up in the hospital they will start an IV and give you D5W (sugar water) and Normal Saline to replenish electrolytes. Gatorade is much cheaper, pain free, and comes in an assortment of flavors
3. You must keep your lungs moist. Best done by taking long steamy showers on a regular basis, if your wheezing or congested use a real minty toothpaste and brush your teeth (John suggested: or use a drop of peppermint essential oil) while taking the steamy shower and deep breath through your mouth. This will provide some bronchial dilation and help loosen the phlegm. Force your self to cough into a wet washcloth. pressed firmly over your mouth and nose, which will cause greater pressure in your lungs forcing them to expand more and break loose more of the congestion.
4. Eat healthy and regularly. Gotta keep your strength up.
5. Once the fever breaks, start moving around to get the body back in shape and blood circulating.
6. Deep breath on a regular basis, even when it hurts. If you don’t it becomes easy to develop pneumonia. Pursed lip breathing really helps. That’s breathing in deep and slow then exhaling through tight lips as if your blowing out a candle, blow until you have completely emptied your lungs and you will be able to breath in an even deeper breath. This helps keep lungs expanded as well as increase your oxygen level.
7. Remember that every medication you take is merely relieving the symptoms, not making you well.
8. If your still dying go to ER.
I’ve been doing these things for myself and my family for over 40 years and kept them out of the hospital, all are healthy and still living today.”
“I can’t Believe I Did That”
Just looking back over my life… and what WE have accomplished:
My twin sister (my best friend) and I (and our parents) were guided by our older brother to discover the “Plan of Happiness” through the Church of Jesus Christ of Latter-Day-Saints.
“WE” learned to say “I” and gain our individual identities as daughters of a Heavenly Father which enabled us to move forward and have productive lives.
John (my other best friend) & I have been married for 51 years…planning for eternity. We raised ten wonderful children… who make us grateful each day for the time they shared with us, learning the joy of discovery, as well as the learning accomplished through trials and errors. They also are our best friends, along with their marriage partners.
And soon, now, our ‘baby girl’ [now a Mrs.] will be giving us our 23rd grandchild, their age ranging from 32 years to unborn. I have begun to write letters to each of them, in an attempt to keep connected thru the miles. I hope they will share ‘their memories’ with our great grandchildren.
We don’t have much, monetarily, to show for our lives as we transitioned through six different states. But we hope we have influenced lives for good as we were ‘professional parents’ for numerous special needs clients and transitioned to making friends of children and their parents as caregivers for our “Grandma’s Place Child Care” for fifteen years, prior to moving to Florida.
Also important through the years have been our extended family & Church family… many who have endeared themselves with us, either by serving us or allowing us the opportunity to serve them. Family are forever!
…I am also grateful for the 90+ followers of my blog … be ye PwP, caregivers of people with Parkinson’s or simply supporters of the quest for learning… I appreciate your support and words of encouragement.
I remember who’s daughter I am and I straighten my Crown!
Vanity comes in Queen size
As my hands have stiffened, I have needed to adapt: Because my legs are white & streaked with bulging varicose veins, I’d always wore Suntan support hose or long pants. When I could no longer get the nylons on, I wore long skirts with elastic waists, like my slacks. But I was having a difficult time parting with my favorite knee length skirts. I finally realized; if I purchased the support nylons in queen size… I can get them over my heels and on!
My biggest battle with my body and mind as I progress with Parkinson’s disease is prioritizing:
- Contending with what I should do and what I don’t want to do. (like exercise)
- Weeding out projects that I really want to do but know I shouldn’t do. (like weeding the flower beds)
- Identifying what I can let go of. (I know!! I am a pack rat!) (&
what ifI experience a miracle! 🙂
I know I posted the following picture before… But I love its message & it seemed to belong in this post about being a Queen.
Just say’n … falling with grace
Carol Moczygemba began a blog in 2016. She only made four posts in her blog… This is the one which got my attention: “My mobility is further constricted by a broken collarbone, owing to a fall last week. For a split second I got distracted from where I was placing my feet, and tripped. I’ve fallen before, every time thankful for no concussion, no broken bones. But this time I wasn’t so lucky.”
Karl Robb in a blog post this week speaks of ‘urgency for communication for a series of obvious reasons when it comes to an unpredictable neurological disorder such as Parkinson’s disease.’
On January 8th I wrote, in response to an inquiry: “Hi neighbor! I had my second fall, exactly 6 weeks after the first. This time I was in the kitchen, stepped back taking something out of the microwave, lost my balance,fell against the island on wheels, which rolled allowing my downward spiral. My bruised hip is still a little sore, but no permanent damage.”
As I notice a failure to continue to communicate, from other pwP, I wanted to assure you, my readers… Although I hold out hope for stem cell regeneration, (I began taking Stem Enhance Jan.22, 2020) I’ll make sure a loved one knows how to make an entry in my blog, so in the event I develop a problem, they will keep transparency going.
Growing small… a better understanding
I wanted to share this lady’s message. I transcribed one of her pieces from Robin Morgan’s TED talk in 2015. As Karl Robb posted in his blog “A Soft Voice in a Noisy World”…Her gentle cadence and masterful verbiage put her finger on many of the concerns, frustrations, and unknowns in dealing with a most mysterious illness.
. No Signs of Struggle
Growing small requires enormity of will: Just siting still in the doctor’s waiting room watching the future shuffle in and out, watching it stoop; stare at you, while you try not to look. Rare is an exchange: a smile of brief, wry recognition. You are the new kid on the block. Everyone here was you once. You are still learning that growing small requires a largeness of spirit you can’t fit into yet:
Acceptance of irritating help from those who love you; giving way and over, but not up. You’ve swallowed hard, the contents of the “drink me” bottle and felt yourself shrink. Now, familiar furniture looms, floors tilt, and door knobs yield only when wrestled round with both hands. It demands colossal patience, all this growing small:
Your diminished sleep at night, your handwriting, your voice, your height. You are more the incredible shrinking woman than the Buddhist mystic, serene, making do with less. Less is not always more. Yet in this emptying space, space glimmers, becoming visible. Here is a place behind the eyes that some would call diminishment.
It is a place of merciless poetry, a gift of presence previously ignored, drowned in the daily clutter. Here every gesture needs intention, is alive with consciousness. Nothing is automatic.
You can spot it in the provocation of a button, an arm poking at a sleeve, a balancing act at a night-time curb while negotiating the dark. Feats of such modest valor, who would suspect them to be exercises in an intimate, fierce discipline, a metaphysics of being relentlessly aware?
Such understated power here, in these tottering dancers who exert stupendous effort on tasks most view as insignificant. Such quiet beauty here, in these, my soft voiced, stiff-limbed people; such resolve masked by each placid face. There is immensity required in growing small, so bent on such unbending grace.
Faith and works go hand in hand
A brother at the temple asked my husband about the name of the product I had referenced in my blog, that I credited with contributing to my husband’s recovery from a debilitating condition. As my sweetheart related their conversation to me, it seems he didn’t give a direct answer.
As I pondered his response I believe the answer can be found in his profound deep faith. As he endured the years of crisis and pain, he was promised in priesthood blessings that he would, in time, be well again . And he has recovered.
Despite our trust in the Lord’s ability to heal, we also believe the Lord has given us the council to use wisdom in all things. He expects us to strive to learn through our own study and take advantage of the things made available to us in our quest for health. I believe our Heavenly Father has provided many things in nature that will bring our bodies into balance. He also provided man with the gifts of intelligence, curiosity and perseverance enabling us to seek to discover and apply. I see it as part of our test… faith without works isn’t always enough.
Do I think Stem Enhance was the only thing we tried that he benefited from? No. I suspect some of the cleanses helped remove toxic chemicals from his body. But I could see a direct correlation between the time of product usage and the reduction and elimination if his debilitating headaches.
Likewise, as I begin to take the product, I will continue to use other protocols that I feel may be beneficial to my holding symptoms at bay. And I will not leave the power of priesthood blessings out of the equation.
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?
- 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.”
DaTscan ordered
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.
Reality check
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!”
………………
Standing up to Parkinson's 