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Enough is enough

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Here are some inspirational thoughts from Kumite Quest – a warrior with Parkinson’s disease.

Five steps forward and two steps back is still three steps forward.  We are at war with an enemy that shadows our existence, knows how to physically and mentally assault us!!  We are strong however and we will endure and find beauty and joy in the day to day nuisances of our existence, we will not go into the shadows willingly.  We are the first wave of resistance against this global Pan Continental Epidemic called Parkinson’s’ Disease.

We are called to arms in this battle against a disease that is growing faster than humanity care to acknowledge and recognize. This is an enemy that lays dormant in us slowly creeping its way to the surface to be diagnosed and seen for the threat that it is to our global communities years after. It assault on us is individually tailored and crippling.

Enough is enough! Let us pick up the shield and sword that Michael J. Fox has so valiantly wielded against Parkinson’s and our societies ignorance, denial, or fear to address publicly.

Excuse my ranting and raving, I no longer apologize for miss spelled words because the tremors that over take my hands and makes hitting the correct keys almost impossible seizes my body that was once a fine tuned physical instrument impossible to control.

Enough!

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Health and wellness

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2018 trends to reduce stress

Efforts to reduce stress will emphasize 1) adequate nutrition and sleep, 2) relaxation techniques, 3) mindfulness mediation, and 4) emotional and spiritual well-being.

Thomas R. Milam, MD, Virginia Tech Carilion School of Medicine 

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Sentiments on Intrepidness

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Intrepidness – is a powerful word. People who overcome adversity are intrepid.   Intrepidness means resolutely fearless or undaunted. Synonyms for intrepidness are brave, courageous, or bold. To fully understand intrepidness, however, one must understand it’s polar opposite – trepidation. Trepidation is fear, alarm, turmoil, and anxiousness.

Fear can be a difficult topic to talk about. Fear is a barrier that holds us back from getting and becoming all that we desire. What is fear? It is a distressing emotion aroused by impending danger, evil, pain, whether the threat is real or imagined. Fear is crippling because it has to do with darkness and ignorance. At the root of fear is a lack of understanding.

Fear is the most insidious adversity we can face. Fear is the enemy within us that causes doubt and insecurity. After the bombing of Pearl Harbor on December 7, 1941, President Franklin D. Roosevelt proclaimed, “The only thing we have to fear is, fear itself.” Fear ultimately makes us weak and helpless.

Fear is a powerful, primal emotion. Everyone is afraid at some level and must either confront their fear or let it control them. To overcome fear everyone must pass through its darkness to get to the light. I have experienced my share of fear as I deal with the affects Parkinson’s Disease has had on my life. I have had to learn that I cannot just cope with my disease, or just survive, but I must overcome it. To do that I need to understand fear and make a resolute decision to be an overcomer.

I have learned that adversity and fear are internal, I allow them inside my mind. If I am distressed by anything, the pain is not due to the thing itself, but my perception of the thing; and I have the power to change that perception at any moment. Fear is a way of thinking – I must chose to a higher way of thinking to overcome fear. According to Mark Twain, “Courage is resistance to fear, mastery of fear – not the absence of fear.”

I sometimes become fearful and insecure when I’m out in public.   I feel that people are staring at me because of my dyskinesia caused by Parkinson’s. Dyskinesia like moving uncontrollably or becoming stiff and immobile. My fear is amplified when my medicine is not working well. These fearful thoughts only make my condition worse.

I also fear emotional suffering. I know there is no way I can avoid suffering. Everyone suffers to some degree or another. The negative thoughts that creep into my head are a mindset that leads to fear. When I’m angry, I’m afraid. When I’m frustrated, I’m afraid. When I feel like I’m losing control of my life, I’m afraid.   I have learned fear does not come from the Source of all life, the Source produces only love. Love is the most powerful ultimate force in the universe. Just as light drives out darkness, so love drives out fear.

So, what is my solution to overcoming fear? Marcus Aurelius said, “Our life is what our thoughts make it.” I must change my thought process. I must decide to take action and take my fears to the Source of all that is true. I need to remind myself of the truth – that I have a spark of the divinity living in me. The Creator of the Universe has given me the same Spirit that raised Jesus from the dead. Romans 8:11 states, “And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of his Spirit who lives in you.” Thus, I have a choice in the matter – I have a decision to make. I can decide not to be fearful, but to focus my mind on the truth and thoughts that inform me I am an overcomer.

I have realized the Universe has an objective for me – to grow and improve myself. I must be still and allow the Source of all light and goodness to work and move through me. By doing so, I can help other people and have a positive impact on my part of the world. This gives my life meaning, direction, and a purpose.

I also realized I need to be open with my fears. Openness shines light into the darkness. I can learn to overcome my fears by seeking light. Talking about my fears helps to change my perspective on my thoughts and feelings. Just as I need to show my wounds to a doctor to be healed, I must reveal my fears to be healed. Dale Carnegie said, “Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy”.

A Japanese proverb says, “Fear is only as deep as the mind allows.” Thus, intrepidness and fear are at war in my mind – the battle is in my head. My thoughts are my life. The miracle is changing my perspective of the events in my life. I take fear captive by reminding myself of the truth. The truth is God can help me overcome my fears and I don’t have to be controlled by them. The truth is that only love overcomes fear. I must chose to focus my thoughts on the Source of all goodness, in whom there is only love and light, then fear and darkness will vanish, and I can overcome any adversity.

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Write it on your hand

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One challenge all Parkinson’s patients have is to take our medication at the right time and right dose.  I often struggle with not remembering when I last took my medication.  That can be frustrating and debilitating.  Well, I have come up with a practical solution.

This will sound a little old school, inelegant, or perhaps even unsanitary, but a useful technique is to write down the last time I took my meds on my hand.  My wife hates this practice and tells me to use my cell phone to remind me.  I did put reminders on my phone, but I don’t always have it with me.  My hands, however, are never far from me.

So, I write codes on my hand, such as, “6as” for 6 o’clock Amantadine and Stalivo, or “9s” for 9 o’clock Stalivo.  Not fancy, but highly effective.

If God writes reminders on His hand, why shouldn’t I?  See in Isaiah 49:15-16, the Bible says,  “Can a mother forget the baby at her breast and have no compassion on the child she has borne?  Though she may forget, I will not forget you!  See, I have engraved you on the palms of my hands; your walls are ever before me.

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First Dose Group in Parkinson’s Stem Cell Trial Successfully Transplanted

April 26, 2017   by Magdalena Kegelstemcells

The fourth and last patient of the first group in a clinical trial of stem cell transplants in Parkinson’s disease has successfully received the transplant, the International Stem Cell Corporation (ISCO) reported. Researchers are now preparing for the next stage, in which patients will receive a higher number of cells.

So far, researchers have not recorded any adverse events among the four patients who had neural stem cells, called ISC-hpNSC, inserted into their brains.

If successful, the stem cell therapy has the potential to regenerate lost nerve cells — and revolutionize the way Parkinson’s disease is treated.

“We are very encouraged by the early clinical safety data for ISC-hpNSC,” Russell Kern, PhD, executive vice president and chief scientific officer of ISCO, said in a news release.

The Phase 1 clinical trial (NCT02452723) was launched in March 2016, and expects to enroll 12 patients with moderate Parkinson’s disease. Patients are divided into three groups of four patients each. The groups will receive increasing doses, ranging between 30,000,000 to 70,000,000 neural stem cells.

The main goal of the trial is to assess the safety of the treatment, with patients followed for 12 months after the transplants.

But researchers will also use brain scans to assess whether the cells survive once transplanted, and if they contribute to making the patients better. Participants are assessed using the Unified Parkinson Disease Rating Scale (UPDRS) and other tools, and although the study is small, researchers will evaluate any potential improvements in symptoms.

Parkinson’s symptoms typically appear when a large proportion of brain cells containing dopamine are already gone. And while treatments with added dopamine may improve symptoms, at least for some time, the treatment approach is fraught with dosing difficulties.

The ISC-hpNSC cells are derived from what researchers call human parthenogenetic stem cells. Parkinson’s animal models that received the treatment improved, making researchers and patients alike hope that the same will be seen in patients.

The cells are thought to provide neurotrophic support to brain cells still alive. This means they secrete factors that help dying neurons survive. They are also thought to replace the dead and dying dopamine neurons.

But as the trial started, researchers raised concerns that not enough was known about what the cells do in the brain. The group of researchers also questioned whether the safety follow-up of one year was sufficient, and argued that clinical trials of stem cell approaches may be a premature step, in an article in the Journal of Parkinson’s Disease.

Still, ISCO has an optimistic view of the trial continuation.

“We look forward to dosing our second cohort with 50 million cells and enrolling the rest of our clinical trial participants in 2017,” Kern said. “The Data Safety Monitor Board meeting will be held in the beginning of May and we expect to receive approval to start an accelerated enrollment of patients into the second cohort.”

From Parkinson’s News Today

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Six of the Best Apps for Chronic Illness Management

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January 3, 2018   By Wendy Henderson

Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness.

We’ve put together a list of some of the best mobile apps for managing your chronic illness:

Medisafe is an app that helps patients manage medications. It helps with dosage and reminds you when you need to take your meds, increasing adherence rates. The information can also be shared with your health care team and pharmacy.

Pain Diary works for anyone with a chronic illness. It allows patients to chart and score pain as well as record and track other symptoms of the disease such as fatigue and mood swings. This app also has a feature where patients can connect with others living with the same chronic illness and swap best practices.

ZocDoc is a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company. The app will even tell you when the doctor is available to see you.

MORE: How Parkinson’s disease affects your body

My Medical Info is an app that stores all your relevant health history and insurance details. This makes filling out those endless forms a little less challenging, since you won’t have to rely on your memory for all the details. The app will also allow you to program in doctors’ appointments and all the medications you’re taking.

Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight. You can program in how many calories you want to consume a day and then add in the food choices you make, the app will work out the nutritional values of everything you eat and tell you how many calories you’ve consumed. It also works in conjunction with many fitness apps to add in details of any physical activities and calories burned.

Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night and you can also have the alarm set to wake you when you’re in your lightest sleep, leaving you feeling less groggy and more refreshed each day.

MORE: The five stages of Parkinson’s disease

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.

 

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High-Intensity Exercise Delays Parkinson’s Progression

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Participants enrolled in the Study in Parkinson Disease of Exercise (SPARX) were at an early stage of the disease and not taking Parkinson’s disease medication, ensuring the results of the study were related to the exercise and not affected by medication.

The randomized clinical trial included 128 participants ages 40 to 80 years old at Rush University Medical Center, Northwestern University, the University of Colorado, and the University of Pittsburgh. Rush recruited two-thirds of the participants in the study.

The researchers examined the safety and effects of exercise three times weekly for six months at high intensity (80 to 85 percent of maximum heart rate) and moderate intensity (60 to 65 percent of maximum heart rate). They compared the results to a control group who did not exercise.

“The study results suggest that people who exercised at high intensity delayed the progression of Parkinson’s symptoms, while moderate-intensity workouts had no effect,” said Dr. Deborah Hall, associate professor in the Rush Department of Neurology and a co-lead author of the study results. Dr. Cynthia Comella, professor of neurology at Rush, was also a lead neurologist in the conduct and publication of the study.

Although there have been past exercise studies, this study is the first time scientists have tested the effects of high-intensity exercise on untreated people with Parkinson’s disease and demonstrated both efficacy and safety. Previous studies suggested that high-intensity exercise improves symptoms, but the evidence wasn’t sufficient to determine whether exercise intensity modifies symptoms or disease progression.

In addition, most studies have not precisely measured or controlled exercise intensity, and none have been conducted at 80 to 85 percent maximum heart rate. It was thought that high-intensity exercise was too physically stressful for individuals with Parkinson’s disease. However, in this study, the participants were able to maintain the high-intensity treadmill exercise at least three times weekly for six months at the target heart rate.

Researchers confirmed it was safe for the participants to do high-intensity exercise by giving them a cardiologist-supervised graded exercise test to evaluate the heart’s response to exercise.

The results warrant further exploration of the optimal exercise regimes for Parkinson‘s disease and to evaluate whether exercise could slow progression of the disease itself, according to Hall and Comella.

“The earlier in the disease you intervene, the more likely it is you can prevent the progression of the disease,” said co-lead author Daniel Corcos, PhD, professor of physical therapy and human movement sciences at Northwestern University Feinberg School of Medicine. “We delayed worsening of symptoms for six months. Whether we can prevent progression any longer than six months will require further study.”

Parkinson’s disease symptoms include progressive loss of muscle control, tremors, stiffness, slowness and impaired balance. As the disease progresses, it may become difficult to walk, talk and complete simple tasks. Most people who develop Parkinson’s disease are 60 and older.

Parkinson’s disease is the second most common neurodegenerative disorder and the most common movement disorder. It affects more than a million people in the United States. Although medications may improve symptoms, there can be side effects associated with drugs, and reduced benefit over time.

It is clear that new approaches to treatment are needed, according to Hall. With the SPARX study, there is now strong evidence that people with the disease should consider vigorous exercise as a treatment, and one that gives them control over their disease.

The study was funded by grants from the National Institutes of Health and the Parkinson’s Disease Foundation.

MEDIA CONTACT

Nancy Difiore

Associate Director, Media Relations
(312) 942-5159
nancy_difiore@rush.edu