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The Ruin of a Sedentary Life

ruin

Wailing, with tears flowing, I cry out, “I feel terrible! I can’t even think straight!” My partner runs over and hugs me hard. I am lost and have nothing left to give.

This is one way that “crossing the threshold” affects my life. It rarely happens — once every five years. It’s the result of things piling on top of things, the old ways of coping no longer working, and stress pushing me over the edge. It began with the ruin of a sedentary life.

It was an ongoing disaster. I had injured muscles while overdoing it in the garden. With rigid Parkinson’s, a muscle injury results in additional spasms and rigidity. Recovery time was weeks, which led to excessive time spent on my computer. I sustained an eye injury in the spring, and I’m still learning to compensate for the resulting vision loss while managing an increase in vertigo and migraines.

A medication adjustment led to further nausea, and a trial on “natural” medication caused an allergic reaction. Due to these stressors, I lost my appetite, which led to weight loss. Was it over? Not quite. I was exposed to a particularly nasty virus that hit me hard. No exercise, poor sleep, and the pressures mentioned led to the ruin of this columnist’s sedentary life.

I know that this situation is not good for me. At the same time, in an almost nonsensical way, I experience resistance to moving away from the situation. It’s easier to do things as I’ve always done them than to change. I realize that the old coping skills, like heavy exercise and gaming, were much easier before Parkinson’s, and less effective now. I experience procrastination; I know that I should take action, but I haven’t.

I am not ruling out ignorance as a cause. I thought that I knew many things about muscle injury recovery, but I had more to learn. I put myself under an unhealthy level of stress to meet what I perceived as important demands on my time. The cruel fact was that I could no longer recover from a muscle injury in the way that I used to. I recognize that I must learn a new way to heal.

I can’t find much scientific research on rigid Parkinson’s and the benefits of exercise on recovery from muscle injury. More education is needed to help those who are trying to maintain an exercise regimen.

I realize that my inattention to the changes that I’m undergoing can place additional burdens on the people around me. I am trying to change my actions and avoid feelings of frustration due to my failure to remember what I cannot do these days. My internal dialog is working with the idea of “out with the old and in with the new me.”

My well-being mantras are as follows:

  1. If I can’t do it as I did before, then I must put time into learning a new way.
  2. Vary my exercise regimen. Adjust for recovery from injuries and “off” periods.
  3. Remember to warm up, stretch, and prepare for any vigorous exercise.
  4. Keep hydrated. Use the belt attachment to carry my water bottle so that I don’t lose it or forget where it is.
  5. Take time to recover from any strenuous activity. It used to take a day; now, it can be two or three.
  6. Think about proper mechanics when carrying out tasks. I must figure out another way to cut down and move trees.

The ruin of a sedentary life was the result of many actions that exacerbated the muscle injury problem rather than contributed to healing. Old ways and familiar mantras don’t work anymore. My muscle rigidity and weakness have jumped another plateau in the progression of this chronic disease, so I must teach myself a new way to exercise. It can’t be business as usual, because the typical strategies aren’t working well anymore.

Now is the time to put the new wellness map into play — every day, with a healthy dose of self-kindness.

I’m developing an information page on exercise with Parkinson’s on my website (www.drc.life). If you would like to contribute to this topic, please let me know in the comments below.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Don’t Give Up on This Bittersweet Journey

give up

Sherri Journeying Through

Everything’s not all right or OK. Like it or not, we have a chronic disease that won’t go away. Our days are consumed with uncontrollable thoughts; they ravage our minds, threaten our souls, and grasp for our spirits.

Will we ever be “us” again — those beings who once dwelled inside these bodies? Will we become the burden we think others perceive us to be or that we believe ourselves to be? Will we pout and feel sorry for ourselves, thinking our lives are nearly done when not long ago, it seemed that they were just beginning?

We need to find a way to view our circumstances with new eyes. To realize that our situation may actually be a blessing instead of a curse. We can choose to travel this bittersweet journey that’s been laid at our feet.

Remaining positive despite this disease can be extremely challenging. We must remind ourselves that things could be worse and be thankful for what we have. 

We can consider what we can still accomplish. Adopting a fresh perspective helps us to get through each day instead of wallowing in “what could have been.”

Once in a while, someone will say something to us that should have been left unsaid; words they deemed wise yet when spoken aloud came across as ignorant, inappropriate, or distasteful. Incorrect and inadequate information about Parkinson’s disease leads to foolish comments. We can feel defensive and sad at the remarks we hear. Or we can put on our masked smiles and let them think they know better when in reality, we know best.

These are the facts of having Parkinson’s: We shuffle when we walk, we choke when we eat, we drool on our pillows. We shake on the outside and the inside. Sometimes it feels as if we are going to come right out of our skins. Our toes curl and cramp, our fingers as well, and sometimes we wonder if we will ever feel normal again. “Normal” becomes a distant world.

We experience stiffness on the left side and rigidity on the right, along with intense pain. 

We grieve for things gained and lost. Depression vies for our attention; even as we try to push it back into its place, it seeks to control by beckoning, mocking, and screaming out our names.

Our speech may be soft or so slurred that others strain to hear our words. We are interrupted, cut off, and misunderstood. We feel as if we have nothing worthwhile to contribute to conversations, which in turn leaves us feeling insignificant.

However, despite our “abnormalities,” and mixed-up and out-of-control feelings, we cannot, and will not, quit. Quit is a four-letter word, as foul as those others are when used in conjunction with the unrelenting challenge of finding a cure. If we quit, we give up. We relinquish control to this disease. And that is something we must — as long as it is within our power — never, ever do.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Don’t Give Up on This Bittersweet Journey appeared first on Parkinson’s News Today.

Palm-Worn Device May Help in Tracking Changes in Rigidity in Parkinson’s Patients, Study Says

measuring rigidity

A palm-worn device can quantify joint stiffness in Parkinson’s disease patients by tracking changes in rigidity following deep brain stimulation treatment, and may be of use in measuring fluctuations in motor symptoms,  scientists who created the tool report.

Their study, “A Palm-Worn Device to Quantify Rigidity in Parkinson’s Disease,” was published in the Journal of Neuroscience Methods.

Most Parkinson’s patients — at least 89%, the study states — have problems with rigidity, which results in stiffness and makes movement arduous.

Clinically, rigidity is defined as resistance to passive movement — movement that is performed by another person without voluntary motion by the patient — and measured by an expert who moves the “wrist, elbow, and knee joints about their full range of motion and subjectively grades resistive force,” the researchers wrote.

Clinical assessment of rigidity in Parkinson’s patients is largely subjective, due to observer-dependent scoring of muscle stiffness based on The International Parkinson and Movement Disorder Society-Sponsored Revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS).

Automatic devices hold the potential of objectively measure a patient’s increased resistance to passive movement.

Researchers at the Bionics Institute and the University of Melbourne in Australia developed the Bionics Institute Rigidity Device (BiRD), a palm-worn apparatus that uses a miniature motor to trigger an automatic flexion of the hand’s third digit at the metacarpophalangeal joint — the joint at the base of each finger.  Transducers then record data on flexion and extension forces, allowing investigators to quantify rigidity.

Their intent was to establish a more objective measure of a patient’s resistance to passive movement.

The team chose to validate the device against the MDS-UPDRS and demonstrate BiRD’s sensitivity to the therapeutic impact of deep brain stimulation (DBS), a surgical treatment of motor symptoms.

Eight Parkinson’s patients (six men and two women, ages 47–59) and 16 healthy individuals, serving as controls, were recruited to test the device.

Two experienced physiotherapists assessed patients’ rigidity according to the MDS-UPDRS. Individuals were instructed to draw a large imaginary circle in the air using their contralateral arm. Evidence shows that contralateral movement, i.e. moving the side of the body that’s not being evaluated — for instance, moving the right hand instead of the left — substantially increases rigidity in Parkinson’s patients.

Patients had their DBS device on, but were off dopaminergic medication; each had stopped such medication the night before the test.

“Participants were familiarized with the device [BiRD] and a practice trial was conducted prior to formal assessment. Each rigidity assessment consisted of 15 continuous extension/flexion cycles applied without removing the device,” the study said.

In the Parkinson’s group, rigidity of both arms was measured first using the BiRD, and then by the two physiotherapists (using the MDS-UPDRS). Patients’ deep brain stimulation device was then turned off, and rigidity quantified using the new device every 10 minutes for an hour.

DBS treatment was then resumed, and rigidity was measured by BiRD at five-minute intervals for half an hour. “At the last trial within this period, the two raters also assessed rigidity,” researchers wrote.

In the control group, dominant hand stiffness was assessed using BiRD while people were at rest or performing a contralateral activation task. In these people, 10 evaluation cycles were performed: five at rest and five during activation maneuver (movement).

Measurements obtained with BiRD were moderately similar to those recorded with MDS-UPDRS. The device was able to identify the impact of DBS therapy on rigidity by detecting differences between on- and off-DBS states.

The device was also able to distinguish differences between contralateral activation exercises, as well as among participants with and without Parkinson’s disease.

Stiffness in Parkinson’s patients gradually increase during an hour after the DBS device was turned off. Rigidity was almost immediately eased by resumption of deep brain stimulation treatment.

“Given its ability to track changes in rigidity due to therapeutic intervention, our technique could have applications where continuous measurement is required or where a suitably qualified rater is absent,” the researchers concluded.

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Loud, Startling Sounds Can Decrease Parkinson’s Muscle Stiffness, Study Suggests

loud sounds, muscle stiffness

Loud and alarming sounds can reduce muscle stiffness in Parkinson’s disease patients treated with subthalamic nucleus deep brain stimulation (STN-DBS), a study suggests.

The study, “Influence of alarming auditory cues on viscoelastic stiffness of skeletal muscles in patients with Parkinson’s disease,” was published in Clinical Biomechanics.

Almost 100 years ago, a French neurologist described a phenomenon called paradoxical kinesis (meaning “difficult to understand movement”) consisting of a dramatic but temporary reversal of Parkinson’s motor symptoms in the face of startling situations such as an oncoming car or loud sounds.

“The phenomenon of [paradoxical kinesis] suggests the existence of neural systems that can override parkinsonian impairment in certain conditions,” the researchers wrote in this study.

The association between paradoxical kinesis and muscular rigidity has never been described, probably due to the subjective, observer-dependent scoring methodology while performing clinical assessments of “rigidity during the transitory motor alterations” and also due to the “subjective nature of the examinations according to the Unified Parkinson’s Disease Rating Scale (UPDRS),” according to the researchers.

Increased rigidity has been linked to more viscoelastic stiffness of skeletal muscles. Muscles behave like springs, and while something that is elastic immediately returns to its original shape once a stress has been removed, a tissue that is viscous will deform permanently. Therefore, viscoelasticity refers to the muscle having properties of both, allowing it to slowly recover from being stretched or deformed.

Measurement of muscle tone using a myotonometer — a device that measures viscoelastic characteristics of soft tissues — has proved useful in quantifying the effect of therapeutic interventions on rigidity in Parkinson’s patients.

“Thus, evaluation of viscoelastic stiffness could potentially enable quick and reliable measurements of muscular rigidity during the enhancement of motor performance due to external cues in patients with [Parkinson’s disease],” the researchers wrote.

The team from the University of Tartu in Estonia assessed the effect of alarming auditory signals on viscoelastic stiffness of skeletal muscles in patients treated with STN-DBS — a surgical treatment for Parkinson’s disease that involves implanting a device to stimulate targeted regions of the brain with electrical impulses generated by a battery-operated neurostimulator. Patients can use a handheld controller to turn the DBS system on and off.

The team recruited 10 advanced stage Parkinson’s disease patients (three women and seven men) who had been treated with STN-DBS for approximately 4.5 years prior to the study.

Eight subjects had akinetic-rigid (i.e., slowness of movement accompanied by muscle stiffness), and two had the tremor-dominant subtype of Parkinson’s disease. Ten age- and gender-matched healthy individuals were also recruited to use as controls.

Using a myotonometer, the investigators measured the viscoelastic stiffness of the participants’ wrist skeletal muscles, or in other words, the muscle’s resistance to the force that changes its shape, after one night of Parkinson’s medication withdrawal.

Wrist examinations were performed by two different examiners, 10 times each. Measurements were repeated and compared during the DBS-on and DBS-off periods, with and without auditory alarming signals.

Compared with the DBS-off period, muscular stiffness was significantly reduced in the DBS-on phase, supporting the the effectiveness of the stimulation treatment in lessening one of Parkinson’s motor features.

In addition, wrist stiffness was also significantly decreased during the DBS-off period in the presence of alarming auditory signals.

“The mean values of stiffness during the DBS-on phase were lower than during the DBS-off with [alarming auditory] signals phase but the difference was not significant,” the researchers wrote.

Exposure to loud sounds did not change muscle stiffness in the control sample, suggesting that the paradoxical kinesis phenomenon is more pronounced in Parkinson’s patients.

“According to our data, the changes in muscular rigidity due to [alarming auditory] signals are an exclusive characteristic of the patients with [Parkinson’s disease],” the researchers said.

Further larger-scale research is necessary to confirm this study’s findings and assess the efficacy of auditory cueing in Parkinson’s disease.

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Welcome to Dr. C’s Journey with Rigid Parkinson’s Disease

Journey, Different approach to Parkinson's

Before I delve into the diverse range of topics I plan to write about, let me introduce myself.

I was diagnosed with a type of rigid Parkinson’s disease (PD) in my early 60s. It is an idiopathic form, and hard for others to see. I experience the symptoms of rigidity, inaccurate muscle aiming, and slowing of movement, along with some non-motor symptoms and quite a bit of pain.

I have a good response to Sinemet (carbidopa-levodopa), but still see a slow progression in my symptoms. I see the effects every day of my life. I have been on a journey to make sense of what is happening and to attain a high quality of life in the face of PD symptoms. This column will share my journey and the insights I’ve gained along the way.

I am also a researcher and writer (see: www.DrC.life).

After years of hearing, “You look fine, I don’t see the PD in you,” while having the worst of the symptoms under medication control, I thought it was time to put pen to paper. I have a unique background that combines clinical experience helping people with the ability to reframe things so that they may be viewed in a new light.

In this column, I will discuss new ideas and things you haven’t heard before. But mostly they will be ideas that are reframed. This is the result of my struggle to make meaning out of rigid Parkinson’s disease and what it is doing to my life. Hopefully, the information will help you to make sense of some experiences you might have in connection with PD.

The unique perspective that this column will bring to the topic of attaining quality of life with rigid Parkinson’s disease is one I believe will be of interest to the reader. I have a Ph.D. in rehabilitation counseling and I specialized in the treatment of cerebral-neurological disorders. I have helped people attain a higher quality of life after terrible things happened to their brains.

I am also a scientist, and during the past five years, I have conducted extensive research on the ideal rehabilitation plan for a person like me, with early signs of PD. I have put such a plan in place for my own life, although it’s not as perfect as I would like, and I am struggling with things like cutting back on ice cream.

I think that tackling the disease head-on with a vigorous rehabilitation plan makes as much of a difference in the quality of my life as medication does. (I’m not saying to replace the medication, but rather to enhance it.) My plan includes the following:

  • Five to 10 hours of light and hard exercise per week.
  • Fifteen to 20 hours of mental-stimulation activities per week.
  • An ADA house (one that meets standards set by the Americans with Disabilities Act) close enough to receive support from family.
  • Decreased stress, a healthy diet, and doing fun things.

Those are the basics of the plan, which is quite flexible. A lot of fine-tuning happens when the basic plan is applied specifically to the needs of a person, like you, the reader.

Any rehabilitation plan needs to consider where a person falls within the spectrum of Parkinson’s symptoms. In a treatise on PD by Stewart Factor and William Weiner, the authors speak to the importance of understanding the non-motor symptoms associated with PD and the necessity of early intervention.

“Dr. C’s Journey with PD” is personal, but it also will address these two points and various aspects of the PD spectrum. In each column, I will try to leave readers with something that might improve their quality of life with Parkinson’s.

Next week: Parkinson’s disease as a spectrum.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Welcome to Dr. C’s Journey with Rigid Parkinson’s Disease appeared first on Parkinson’s News Today.

Source: Parkinson's News Today