CUE

This is a link to an introduction of the Cue1… a non invasive tool that I signed up to receive updates on.

https://www.youtube.com/watch?v=IHzxntHblG4

………………………This is a chat entry by a gentleman in the UK

“Ok… so… I went on the waiting list in September 2020 and received my CUE1 in early February just gone.”

“The first couple of days I didn’t really notice much difference, then all of a sudden it dawned on me that my balance had improved a lot and that stiffness and slowness were improved too. I don’t think it does a lot for my tremor but could be wrong. Everyone is different so don’t be put off by this.”

“If you’ve got questions, email the team at Charco, they are lovely and very approachable.”

………………………..and this posted in the chat by Deedee777

I live in the United States, and this is the response that I received today from Charco Neurotech (Team Charco ) regarding their CUE1 availability for customers in the USA:

“We are offering the CUE1 to those on our UK waiting list. As a medical device company we are unable to make the CUE1 available to those in the US until we have been approved by the FDA. ” Team Charco,

Go to their website, for detailed information on CUE1, and to sign up to their Waiting List: Their website is: charconeurotech.com/

I’ll keep you posted.

Sue

Advocate for yourself

I cry too easily, I can’t read anything aloud, with even a hint of sadness 0r stress or I start to cry and then I can’t talk… I am a silent cryer. When I attend a reception line at weddings, I cry. When we would watch a tv show as a family, the children delighted in catching me crying over silly things, and reminded me that it wasn’t real. I told them my bladder was simply too close to my tear ducts. I have never been depressed. I am the eternal optomist.

I appreciated the sentiments expressed by SilentEchoes in a forum I follow: She shared…..

“Pathologic tearfulness (emotional incontinence) is a disorder of emotional expression rather than a primary disturbance of feelings.”

“It’s not you – it’s your brain injury. I cry easy – too easy. I often lose credibility with the doctor when it happens to me. The imbalance of power in the exam room is very real.”

“A neurologist told me that the fact I was crying in his office was evidence of mental illness. When we left my husband said, we’re never going back to that a$$h*le. When you understand what is going on in your brain, you’re better equipped to advocate for yourself. This is much harder to do in the early phase when you’re baffled by the weird stuff you’re experiencing.”

“Gaslighting and psychological abuse is never okay; and especially not in the context of the medical setting.”

“Emotional incontinence is not associated with depression, impulsiveness, memory impairment, or executive dysfunction.”

“Pathologic tearfulness is not a manifestation of psychiatric illness, it reflects abnormalities in brain networks that control emotion regulation beyond the hippocampus. The condition may be present in other neurologic disorders, this article provides novel insights into the neural basis of affective control and its dysfunction in disease.”

https://n.neurology.org/content/94/12/e1320

“The more you know the better you can advocate for yourself.”

Spelunking (Lessons Learned)

On MyParkinsonsTeam MountainjWoman shared this advice!

“So Stop Falling! I have only fallen once in the 11 years I have had P D. When I was teaching spelunking (caving) to junior high school students, I learned an important principle about Not falling (quite important sometimes when caving!) Have 3 points of contact, not just 2. So if you are standing on 2 feet & move 1, that only leaves you 1 to stand on – Crash! But if you are standing on 2 feet plus holding a door frame or a countertop & move 1 foot, that leaves you in a stable position with 1 foot & 1 hand holding you up as you find a good placement for the foot you are moving.”
“I watched my husband relearn how to walk after his slight stroke. He would lean the direction he wanted to go, but not move his feet until he overbalanced, then he would hurry to make his feet quickly keep up with his falling body.”
“Shuffling – 2 problems: 1-The stride is so short that it takes absolutely forever to get from point A to point B
2-You don’t have any clearance when shuffling. The slightest unevenness (a mat, a wrinkle in the carpet) trips us & – Crash!”
“Reteach yourself how to walk – how to lead each step by lifting the knees; the leg is not a stiff, straight block of wood from the hip to the foot. Use all the joints. Pick up your feet & roll through the foot from heel to ball of foot, to tips of toes with each step; proper normal stride length, balancing each step by swinging the opposite arm & by tilting the head toward the foot that is moving forward, how to turn, walk backwards; pivot on the balls on the feet, not the heels; how to regain that sexy hip swing.”
“Bend your knees before & after stepping over something.”
“Do physical & occupational therapy for relearning balance, get homework exercises, & Do Them religiously every day.”
“Orient the balance centers of your brain by touching things as you walk – the back of a couch or chair, the desktop”.
“Dance – moving to music frees up your balance & gait, & it’s Fun!”
“Don’t stand on your own 2 feet – touch the wall, furniture, a grab bar or sit down instead of standing around. The beautiful ballerinas learn their amazing poses at the barre.”
“But decide Not to fall, figure out how “normal” people manage it, & practice, Practice, PRACTICE!”
“It took me over a year, but now I walk & run normally, naturally, without thinking about it.”
“Wouldn’t you rather teach yourself Not to fall?”

Pisa Syndrome

‘Not long after I received my diagnosis, I first heard the label ‘Pisa Syndrome’ as I sat in the eye doctors exam chair. It had been confirmed, the reason I still couldn’t see to read with my new bifocals was because I needed Prism to be able to read. The doctor says I am seeing double…I am bothered by his declaration. because I don’t see two distinct things. It is just that things are so blurry that a magnifying glass is of no help. Thus, I learn two new phrases: ‘convergence insufficiency’ &’Pisa Syndrome.’

The doctor and his assistant were commenting how I had the lean to one side. They said they knew they went together, but they weren’t sure which one caused the other

Since then, I have had three separate prescriptions for prism lenses. Having cataracts removed allowed me to quit the juggling act with two pair of glasses. If I tried to walk with the prisms on, it would cause me to stumble. Well, it still does make me stumble, but I don’t have too fumble for the other glasses

I found and article from  The Lancet / Neurology

Pisa syndrome is defined as a reversible lateral bending of the trunk with a tendency to lean to one side. It is a frequent and often disabling complication of Parkinson’s disease, and has also been described in several atypical forms of parkinsonism …….. Although no consistent diagnostic criteria for Pisa syndrome are available, most investigations have adopted an arbitrary cutoff of at least 10° of lateral flexion for the diagnosis of the syndrome. Pathophysiological mechanisms underlying Pisa syndrome have not been fully explained. One hypothesis emphasizes central mechanisms, whereby Pisa syndrome is thought to be caused by alterations in sensory–motor integration pathways; by contrast, a peripheral hypothesis emphasizes the role of anatomical changes in the musculoskeletal system………

………………………………………

PD is the second most common neurodegenerative disease and is characterized by bradykinesia, resting tremor, rigidity, and postural instability.24 It is a progressive, lifelong, and so far incurable disorder causing significant reduction of quality of life and increasing health care burden. Besides aforementioned classical motor symptoms, additional aggravating conditions include postural abnormalities, which are quite common in this population. According to the results of a retrospective observational study, a third of patients with PD had a deformity of their limbs, neck, or trunk. Parkinson described distinctive stooped or bent posture of patients with PD. Nevertheless, significant proportion of patients exhibit more severe postural abnormalities or spinal alignment, leading to significant disability. These severe deformities include PS, camptocormia, scoliosis, and antecollis.  It is noteworthy that most of the patients present with a combination of postural deformities. The underlying pathophysiology of these deformities is largely unknown, and their management remains a challenge/

Pathophysiology

The pathophysiological mechanisms underlying PS in PD patients have not been fully explained. Two different hypotheses have been proposed: 1) central hypothesis consider PS as a consequence of basal ganglia dysfunction along with altered sensory–motor integration, and possibly exacerbation by dopaminergic treatment; 2) according to the peripheral hypothesis, PS occurs primarily due to an alteration of the musculoskeletal system, such as myopathy of the paraspinal muscles and soft tissue changes (Figure 1).27,32

Postural control depends on vestibular, visual, and somatosensory information. For proper postural control, all these components should act in highly harmonized, synchronous, and orchestral manner. Balance impairment in PD has recently been related to altered sensory–motor integration processing.42 Proprioception provides highly accurate information that helps to maintain body verticality. Several studies confirmed abnormality in proprioceptive function in PD patients. Vaugoyeau and Azulay43 showed that PD patients, unlike healthy subjects, were unable to maintain the vertical trunk orientation without visual compensation and were following the oscillations of the supporting platform, whereas the control subjects kept their body upright when deprived of visual cues and vestibular information. Perception of verticality is essential for postural control. Pereira et al44 showed that perception of verticality is affected in PD patients. This abnormal vertical perception together with disturbed processing of graviceptive pathways is associated with postural instability. Based on these results, Scocco et al45 investigated subjective visual verticality in PD patients with and without PS, and compared them with healthy controls. They found that the subjective visual verticality was altered in PD patients with and without PS when compared to healthy controls. The authors concluded that altered subjective visual verticality cannot be explained by intrinsic lateral deviation in PS patients, yet it must be secondary to either primary perceptual dysfunction or alterations of internal models of verticality. Until recently, it was thought that vestibular dysfunction is not involved in the pathogenesis of postural deformities affecting PD patients.46 However, recent investigation by Vitale et al47 refuted this hypothesis. They evaluated vestibular function in eleven PD patients with lateral trunk flexion and in eleven age-, sex-, and disease duration-matched patients without lateral trunk flexion. A peripheral, unilateral vestibular hypofunction was identified in all patients with lateral trunk flexion. The vestibular hypofunction was ipsilateral to the leaning side and contralateral to the most affected parkinsonian side in all the patients. In the control group, seven subjects had no vestibular signs and four subjects had unilateral vestibular hypofunction without clinically evident lateral trunk flexion. Interestingly, two of the latter patients subsequently developed lateral trunk flexion ipsilateral to the vestibular deficit and contralateral to the side most affected by PD.

Diagnosis and clinical presentation

There is no consensus on the diagnostic criteria for PS. Initially, Bonanni et al29 proposed the following definition for lateral axial dystonia: more than 15° lateral flexion of the trunk, increasing during walking, not present when supine, and in the absence of any mechanical restriction to trunk movement (ie, degenerative spinal disease), with continuous electromyographic activity in the lumbar paraspinal muscles ipsilateral to the bending side. Doherty et al27 deviated from definition by Bonanni et al29 and proposed that a diagnosis of PS requires at least 10° lateral flexion, which can be completely alleviated by passive mobilization or lying in a supine position. A reason for this deviation was that the pathophysiological mechanism of PS in PD patients may not be completely dystonic and should not require electrophysiological studies to define it.

PS can develop in acute (rapid deterioration within few days or weeks), subacute (followed by rapid deterioration over months), and chronic fashion (insidious at first with gradual worsening).15,54,55 Early recognition of PS represents mainstay of the treatment because chronic forms are often resistant to therapy. Most of the PD patients with PS are not aware of lateral trunk deviation in the early stage.35 At the beginning, only a slight tendency to lean on side can be observed while patient is sitting, with worsening during walking. A special phenomenon is “veering gait”, which denotes progressive deviation toward one side when patient is walking forward and backward with eyes closed. In advance stage, patients often experience debilitating pain, dyspnea, or unsteadiness leading to falls.

Probably, the most important thing when dealing with PS in PD patients is early recognition of this rare and incapacitating symptom, because appropriate management in acute or subacute phase can prevent chronic irreversible state.

Being proactive

In my May 28th post I mentioned that I ordered a stylish Helmet/hat.

I wore the helmet hat to two graduations. Then, when I was going into the hospital to check on a sister I minister to, having received a message that she had fallen and was being admitted to the hospital, I didn’t think to wear the helmet.

As I was going toward the front entrance I stubbed my toe on a rise in the cement, and scared a lot of people, including myself. But the Lord blessed me, because I was enabled to regain my balance with some fast foot work. I’m sure it wasn’t a pretty dance, because several people asked me if I was alright.

As I was falling forward, I thought, “I’m going to faceplant on the cement and I should have w0rn my helmet!” Thankfully disaster was averted. As I have been consuming the New Eden twice a day, I have noticed when I am walking about, my arms have begun to swing, like a non-Parkinsonian’s arms would swing . Whereas, with typical Parkinson’s symptom, previously my arms had hung down at my sides when I walked with no swing at all. I have to assume it has also been enabling me to move my feet faster, thus righting my error.

Who says “You Can’t”

Who says ‘You can’t teach an old dog a new trick? I suppose my senior citizen status qualifies me as old … But I learned something this past week.

Due to my persistent drooling condition, the corners of my mouth were cracked and a very raw line had formed and descended down from both corners of my mouth, extending nearly 2/3rds of an inch down on each side of my chin. When I opened my mouth wide enough to insert my dentures the corners of my mouth would crack and bleed. It had become unsightly and made me grateful for being able to hide behind my ‘covid mask’.

What I learned from a grandson this past week, is that simply by applying a hydrocortisone cream onto the sore places morning and night, and in between times… the soreness can be held away. Of course the drooling will continue but I celebrate a small victory.

Negative Mindset

We only live once

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Positive Mindset

We only die once. We live every day.

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!

I’d like a Harmonica, please

Can you imagine sitting for a half hour each day breathing in and out thru a straw? That is an exercise used by pulmonary rehabilitation to strengthen diaphragm muscles for COPD COPD is a catch-all term that includes people diagnosed with illnesses like emphysema, asthma and chronic bronchitis. (I think with our slowed muscle response time and weakened muscles PwP could benefit equally well.)

VA Health Promotion-Disease Prevention Coordinator in Tampa… Dave Folds, says “The type of breathing used to play the harmonica is like the breathing exercise used in therapy for COPD. Basically, the breathing exercises are pursed lips style breathing, like breathing in and out of a straw (which would be) the same way you would blow in and out of a harmonica”

“By making music, it’s much more enjoyable than sitting at home for half an hour each day breathing in and out of a straw,” Folds said, “Most people in the class won’t do that, and they say so. But they will sit at home and practice their harmonica, some of them for hours.”

A veteran who has been learning to play the Harmonica said. “I do feel different. It made a noticeable difference. I have more endurance.” Additionally, “With the harmonica, you’re actually achieving something and hopefully getting pleasant sounds out of it. You’re getting the reward for the effort you put in.”

And thinking about breathing issues… I’ve begun trying to do the tongue in teeth, swallowing exercise as shared by a fellow PwP, since reading at the included link…

Early occurrence of inspiratory muscle weakness in …

“In Parkinson‘s disease (PD), respiratory insufficiency (including functional and muscle disorders) can impact dysarthria [difficult or unclear articulation of speech] and swallowing.”

……………………………………………..

He typed, “I used to have it. Now I do 5 minutes of “exercise” every night and it’s gone. The exercises include “Swallow 20 times while holding your tongue in place with your teeth. I recommend that you go through “the system” and spend some time with one of these swallow therapists.”

Speech and voice disorders

Research shows that 89 percent of people with Parkinson’s disease (PD) experience speech and voice disorders, including soft, monotone, breathy and hoarse voice and uncertain articulation.

People with Parkinson’s (PD) may notice changes in or difficulty chewing, eating, speaking or swallowing. These changes can happen at any time, but tend to increase as PD progresses. Just as PD affects movement in other parts of the body, it also affects the muscles in the face, mouth and throat that are used in speaking and swallowing.

Beyond producing the sounds of speech, PD symptoms like a frozen or masked face can make it harder to communicate the emotions that go along with what you are saying. Others may misinterpret this as a lack of interest in the conversation or aloofness. In addition, some people with PD struggle to find words, and so they may speak slowly. And in other cases, PD causes people to speed up their speech, so much that it may sound like stuttering.

HOW does a person know if they have speech problem? Ask yourself if:

  • My voice makes it difficult for people to hear me.
  • People have difficulty understanding me in a noisy room. 
  • My voice issues limit my personal and social life. 
  • I feel left out of conversations because of my voice.
  • My voice problem causes me to lose income.
  • I have to strain to produce voice.
  • My voice clarity is unpredictable.
  • My voice problem upsets me.
  • My voice makes me feel handicapped.
  • People ask, “What’s wrong with your voice?”

Bradykinesia

Bradykinesia or slowness of movement is one of the main symptoms of Parkinson’s.  The general effect of bradykinesia is that it takes more time and effort to complete daily tasks, which can result in fatigue. 

When experiencing slowness of movement a person with Parkinson’s may notice the following:

  • Lack of spontaneous activity e.g. arm swing diminishes
  • Fine motor coordination is reduced e.g. handwriting becomes smaller
  • Changes in walking such as short, shuffling steps
  • Episodes of freezing or periods of immobility
  • Difficulty turning over in bed or rising from a chair
  • It takes longer to do things

Managing Bradykinesia

Some people with Parkinson’s find physiotherapy helps to improve their symptoms.  A physiotherapist can recommend exercises and techniques to help with your mobility.

Medications for Parkinson’s can also help improve movement and reduce slowness.