Dust off the sewing machine

Eliza-Jane posted: Trouble turning in bed?

I made myself a couple of satin tubes. When one is in the wash I have a back-up. I bought the satin online. Here are the instructions. Cut a length of satin the same width as your fabric i.e. approx. 1 meter. Then cut a second square the same. Place the first square down, satin side up with the cut ends at the top and bottom. Then place the second piece on top of the first, satin side down with the cut ends left and right. Do not just fold it over on itself, that will not work. Stitch the 2 sides together leaving the top and bottom open. Then hem or make a satin binding for the top and bottom. I used a French seam on the sides. The top and bottom are left open like a tube. Place it on the bottom sheet of your bed and when you get into bed sit on the bottom end of the slip near you. You will find this helps to slide over and up and down. It’s not perfect but it helps.

Humpty Dumpty moments

Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead

Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.


So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS

…………………………………………….

A pastor recently typed: Don’t let pride or stubbornness get you injured or dead
use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!

——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)

An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.

Falls and Common Household Hazards

If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:

  • Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
  • Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
  • Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
  • Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.

Tips for Maintaining Balance With Parkinson’s Disease

  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
  • Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
  • Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
  • Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
  • Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!

Poling Update

As I reported earlier, I’ve learned about intentional walking… aka Fast walking. The goal is to get up to an hour a day… 3 or 4 times a week. So I was doing two laps around the block for John’s once around. But since implementing the poles’ John is able to walk faster, and I am pushed to keep up with him, so it has been super nice.

John says he can walk faster because he is putting his weight onto the poles which relieves his hip and leg pain. I have a walking partner and Pandora on my phone playing music from my pocket. The Distance we walked the last time was 1.25 mile. in 40 minutes. We have ventured further and further into our neighborhood. Life is good.

Sorry, I’ve been focusing on Christmas letters instead of writing on the blog… and I know, I somehow lost a bunch of links in the index that I need to fix. But I’m happy to report I think I am holding my own, quite well.

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.

Ours is much like this one, A two person capacity.

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.”

Knock on Wood

Written: Feb 2020 Posted:3/17

I experience two totally unrelated conditions which cause me consternation.

* One is a Parkinsonism: I gasp. That is to say I suddenly (without any warning) intake a large gasp of air very quickly filling my lungs…and then sigh it out. Typically it goes unnoticed or John asks me, ‘Are you okay?’ But once in a while it happens while I have liquid to my lips or near, as happened when I was rinsing my hair and accidentally sucked in shampoo. Most recently I gasp/choked on apple cider vinegar, lemon juice and water…after which I coughed for probably the next five hours.

* The second has no link to Parkinson’s as a cause: I think they are esophageal spasms. My father and my twin sister both needed to be cautious with the size of bites they took and frequently had to wait for the muscles controlling the esophagus to relax so the blockage could pass. They each had their throats stretched by medical professionals multiple times. They reported the procedure was very helpful, but the benefits wore off over time. I have a referral for a Gastroenterology specialist on March 25th to discuss these and other issues. (If the virus hasn’t closed them down… before my appoint.)

The doctor was wrong when he predicted to my father, “You’ll most likely die with a piece of meat in your throat.” My Father died at age 94 from a condition totally unrelated to his choking problems. I eat slowly enough that my food rarely causes a problem. When I have gotten in trouble, it has been as I attempt to swallow my prescribed medications and supplements. I have made adaptions to my protocol… I put a single capsule in applesauce, or yogurt or in a spoonful of a Metamucil fiber preparation. Then after a capsule has slid down, I take a drink of water. But as I relate what happened a past Tuesday, I question what other precaution might I take? Perhaps sleep with my head slightly elevated?

Tuesday morning: I had swallowed my very first capsule bathed in a teaspoon full of yummy… and as I picked up the glass for a drink to flush it, I noticed a tightening of my esophagus… probably 3 inches lower than the collar bone… so I hastily took my sip of water, but I was too late, and the water remained above the spasm. It nearly did me in! Besides the pain caused by the spasm, I had to sit really tall, trying to keep the fluid from back flowing into my wind pipe. As the body tries to clear the blockage, little spurts of air bubble up, raising the level of liquid, causing me to feel panic.

As the body strives to clear the blockage, and reflexes attempting to purge the digestive track push: involuntarily pushing in both directions. I’ve heard; a person in the throes of death frequently soil their clothing. Been there, done that. I don’t need that one on my bucket list.

I was shocked by the comment elicited from the very first person (outside of our immediate family) that I confided the doctor had given me the diagnosis of PD: She said, “My father had Parkinson’s… and he died from choking while my mother was feeding him!” Shortly after her comment, a search on the internet revealed the number one contributor to mortality for PwP is aspiration pneumonia: a lung infection that develops after you aspirate (inhale) food, liquid, or vomit into your lungs. You can also aspirate food or liquid from your stomach that backs up into your esophagus.

In many cultures, it’s a common superstition for people to knock their knuckles. It is a tradition of literally touching, tapping, or knocking on wood, or merely stating that one is doing or intending to do so, in order to avoid “tempting fate” after making a favorable or unfavorable prediction or boast.

Rather than knocking, I chose to be proactive. I took my physician’s advice and got a pneumococcal vaccination that reportedly can help protect against infection by 23 types of pneumococcal bacteria, which are common and often cause serious illnesses.

Addendum… March 11 ………… “Worry is like a rocking chair___goes nowhere.”

Two more esophageal spasms this month… have left my chest (and airway sore) and me feeling slightly panicked.

The first one happened in the night during an attack of dystonia in my feet and calves which had wakened me from, a deep sleep. Dystonia, for me, is severe cramping which twists my toes and runs up my legs. Anyway, while I was awake, i also experienced the distress of an esophageal spasm. Although very painful, no fluid was involved.

The next morning, I had finished my breakfast and didn’t have anything in my mouth when another spasm began. As the spasm continued, I was having trouble with moisture blocking my airway. I figured out that to solve the distress, I needed to spit out the saliva as it accumulated, in order to keep breathing.

I have been looking at AND DOING …breathing techniques and exercises to improve lung capacity. I recommend everyone do the same, during the threat of perilous times.

Eeyore … still gets invited :)

At 5:30 yesterday morning, as I made my way into the bathroom, I had my first floor smacking fall. Weird thing to me was I had no realization that I was going down. But I knew when the back of my head slammed into the floor. Only obvious damage was a broken fingernail. My ego also took a hit. John pulled his cane out, instructing me to use it.

Image may contain: one or more people and text

I startled John several times during the day… when the cane came crashing to the floor. It is even more unstable than I am! This brings me to my Christmas wish list. If I am to use a cane, I’d like it to be a free standing cane instead of a stick I have to lean against things when I’m not pressing it into service. A search of the internet suggests the HurryCane. And while I’m suggesting to my children… can it be a light color? Not black or dark brown?

A new word: Festination

Yesterday, I went to the neurologist. He indicated the DatScan report was conclusive, that I had a significant loss of dopamine. He speculated I have been loosing it for at least the last 4 or 5 years. Because of my previous intolerance for the medication, he plans a gradual increase… increasing the dosing to four tablets a day. Then after four weeks starting two tablets at one of the doses. I was pleased to report some lessening of symptoms… he seems to think I will see a lot more improvement.

In reading through his notes, I saw a word I wasn’t familiar with. I learned a new word last night… then I experienced its effects in the wee hours of the morning.

“What is Festination in Parkinson’s?  Parkinsonian gait (or festinating gait, from Latin festinare [to hurry]) is the type of gait exhibited by patients suffering from Parkinson’s disease (PD). This disorder is caused by a deficiency of dopamine in the basal ganglia circuit leading to motor deficits.”

Allow me to set the stage: Due to my Parkinson’s stiffness, I have discovered it is much easier to make a graceful landing on the porcelain throne with a ‘raised’ toilet seat :

Raised Toilet Seat

A couple more challenges to cope with is a sense of urgency which hits me as soon as I sit up in the night and a slowness to initiate movement. First I move to the foot of the bed until my hand find the round bed knob where I pivot, baby stepping between the foot of the bed and our WBV machine until I turn right and have a clean shot into the bathroom. As I clear the bathroom door frame, the urgency has intensified, so I raise my hands to tuck my thumbs into the waistband in anticipation of a speedy lowering… then the festination kicks in! I find myself rushing forward, unable to slow myself or free my thumbs!!

Propelled forward, while striving to turn my anatomy and simultaneously pushing clothing aside, I was spared a fall, as I landed with my head on the toilet paper on its portable magazine rack stand which was supported by the elevated bathtub side…sort of seated on my target.

After discussing my close call, with my sweetheart, he has come up with a plan to rearrange our bedroom, providing me with a much shorter, straighter pathway. I dearly love this man, and appreciate his tender affection and attention to details.



 

 

Ease of Mobility

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

The LifeGlider™ is a new mobility device that permits upright, hands-free mobility.

“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.”

Enabling Upright, Hands-Free Mobility

BUILT-IN SEAT: FOR FULL OR PARTIAL WEIGHT ALLEVIATION

“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.”

POTENTIAL BENEFITS OF BEING UPRIGHT, HANDS-FREE, AND MOBILE

  • “Reduced anxiety from fear of falling and greater confidence when upright
  • Reduced cognitive load associated with constantly monitoring risks and obstacles to safe movement
  • Ease of daily activities
  • Improved ability to interact socially
  • Eye level contact with others
  • Increased ability to exercise safely
  • Increased muscle and bone strength
  • Improved digestion and circulation
  • Maintenance of good posture, balance
  • Ability to move using proper gait
  • Reduced stress associated with constant device management
  • Ability to walk indoors or outdoors
  • Ability to relax arms while walking
  • Ability to use hands while walking”

Physician, heal thyself

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.

Communication technology advances

This clip shows a man who experienced great success from DBS [Deep Brain Stimulation], BUT it also demonstrates a form of group therapy for increasing volume and articulation/slurring issues.

They also speak about the prohibitive out of pocket cost for therapy. This is another reason I am pursuing getting a SpeechVive device. A person can get assistance for the purchase thru insurance.

I have copied excerpts from techpoint.org about the product: https://techpoint.org/2018/04/speechvive-reviving-speech-improving-lives/

“The company’s primary product is a non-invasive, over-the-ear device that looks a lot like a hearing aid, but it’s a lot more than that. With SpeechVive, the device detects the patient’s speech and delivers a sound stimulus into the ear, which triggers the Lombard reflex and causes the patient to speak louder and more clearly.”

“Ninety percent of people who use SpeechVive get a significant benefit — 75 percent get the benefit immediately and another 15 percent need a few weeks of using the device before getting the full effect. There is also a free SpeechVive app for iOS that uses standard earbuds to test for the Lombar. response. The app allows people to see if SpeechVive will work for them before they buy it, and the company also has a “no questions asked” 60-day money back guarantee.”

“When people think of Parkinson’s, they think about the tremors, but one of the most common symptoms of Parkinson’s is a loss of communication (89 percent) due to the patient’s inability to regulate their speech. To their friends and family they seem to be mumbling, or speaking too softly. As a result, people with Parkinson’s get interrupted and talked over, and this often leads to isolation and depression. SpeechVive, as the company moniker states, gives people with Parkinson’s their voice back by “Reviving Speech, improving lives”

I have an appointment with my Primary care Dr this coming Wednesday to get paper work signed for authorization. I intend to make progress reports, once I have my SpeechVive device. 🙂