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Friday, December 25, 2015

Parenting With MS

By 
WebMD Feature
Reviewed by Richard Senelick, MD
MS can't stop you from being a great parent. The key is to focus on your strengths and learn creative ways to work around your symptoms.
Your condition will shape your outlook and approach to parenting. And that could be a good thing.
"Having MS made me a better parent than I would have been without it," says Matt Cavallo, who has known he had MS since 2005. He now has two young boys.

What MS Can Teach You About Parenting

Know what's important. Because you live with an unpredictable disease, you understand something about life that most people don't. "Before I had MS, I was someone who worked 15-hour days; my mind always on the next big project," says Cavallo, who is also an author and motivational speaker. "MS makes you aware of how life can change at any time. You learn to focus on appreciating the moment."
Expect the unexpected. MS teaches you to be flexible and adaptable. "Any parent knows that the best possible plans can veer horribly wrong at any moment because of a meltdown or sick kid," Cavallo says.
Be a role model. "Your kids will understand we all face challenges, but they'll see you succeeding despite them," says Cindy Richman, senior director of patient and health care relations at the Multiple Sclerosis Association of America. "Your example will make them more resilient and confident."

Tips for Parenting With MS


Take care of yourself. Give yourself plenty of downtime and rest. "Tending to your own needs isn't selfish," says Rosalind Kalb, PhD, a clinical psychologist and vice president of clinical care at the National Multiple Sclerosis Society. If you overdo it one day, it could take you a week to recover -- and that's not good for anyone.
Continue reading this article from WebMD


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Women's Health Issues with MS - (recorded 12.16.2015 in Orlando, Fl.)


Presented by: MS Nurse Practitioner Specialist, Guest Speaker: 
Patricia Pagnotta, ARNP, MSN, CNRN, MSCN / Co-Director of MS Views and News first Medical Advisory Committee. 
 --- Patricia speaks about: MRI, MS Treatments, Psychological Factors like Resilience, Depression, Anger, Excitability, Self Aspects, Bladder Problems, Sexual Issues, Nutrition, Keeping Positive, Symptom Management relating to topics mentioned, Parenting, Family Living & When to tell the children, Plus Dating (and when to tell) and Discussion on the workplace and what to expose...
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please click here to access




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Thursday, December 24, 2015

Study of key enzymes in energy metabolism may help in understanding of axonal degeneration

MS Active and Inactive Lesions Differ in Levels of Enzymes that Drive Glucose Metabolism

Dec 21, 2015

<span class="entry-title">MS Active and Inactive Lesions Differ in Levels of Enzymes that Drive Glucose Metabolism</span><span class="entry-subtitle">Study of key enzymes in energy metabolism may help in understanding of axonal degeneration</span>

A research team recently showed that key enzymes of energy metabolism pathways are differentially expressed in active and inactive multiple sclerosis (MS) lesions, and may contribute to axonal degeneration in MS. The study, titled “Differential expression of glucose-metabolizing enzymes in multiple sclerosis lesions,” was published in the journal Acta Neuropathologica Communications.
MS is an immune-mediated disease of the central nervous system characterized by the destruction of the myelin layer within nerve cells, leading to a wide range of neurological symptoms (affecting sensory, motor, autonomic, and neurocognitive functions) that manifest usually between the ages of 20 and 40.
Over time, the number of new lesions formed decreases, and the disease progresses with neuron cell degeneration and the dysfunction of axons (a long, slender projection of a nerve cell that conducts the electric impulses from the cell body to other cells). Damaged, demyelinated axons need to consume more energy to maintain electric conduction, and as a consequence, MS axons contain more mitochondria (the organelles responsible for energy production). Notably, increasing evidence suggests that mitochondrial dysfunction and associated oxidative stress drive neurodegeneration in MS. A possible mechanism accounting for this phenotype is the fact that damaged mitochondria may change glucose metabolism, therefore impairing the neurons’ function in MS patients.

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MS Patients Using New Web-based Program to Manage and Integrate Care

A team of researchers from the Netherlands have developed an interactive web-based program called MSmonitor that offers multiple sclerosis patients a way to manage and better integrate the multidisciplinary care they require. Pilot data from a study of its use is detailed in the article, “The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, […]
Read More »



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The Needed Roots in MS Care - Customizing Therapy - Another Beneficial MS program



(43rd program of 2015) December 15, 2015 - from Jacksonville, Florida -
 
Our second speaker of this program - Speaking After our Social Security Disability attorney:
MS Specialist  Megan Weigel, DNP, ARNP-C, MSCN,

Megan Discussion includes: Current Disease Modifying Treatments, Adherence, Compliance, Gait issues & MS Relapse plus Enhancing Quality of Life for Patients With MS.


For those that want to see the first portion of this program with the Social security disability attorney, please click: https://youtu.be/9qhQy8j0Cpk


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For the MS patient-clinician, communication tool, 
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MS Views and News 
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Denver Artist Sarah Richter Finds The 'Beauty' Of Having MS

Reported by Stephanie Wolf/CPR News
Dec 22, 2015

Denver artist Sarah Richter stands in front of a sound sculpture featured in her multi-media installation "Sensory Paradox" at CU Anschutz Medical Campus in Aurora on Dec. 8, 2015. 

Seeing three of everything can be disorienting. That's what happened to Denver artist Sarah Richter in 2009. "One day I woke up, and I saw the world totally differently," Richter says. "It was very painful and frightening. But it was really beautiful too."
Doctors diagnosed Richter with multiple sclerosis. Since then, she has used her art to explore how MS affects her body. She recreates what she calls the "invisible symptoms" in her latest project"Sensory Paradox: An Artist's Experience with Multiple Sclerosis." It's on display through March 3 at the University of Colorado Anschutz Medical Campus in Aurora. Richter spoke with Colorado Matters host Ryan Warner.
- CONTINUE



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Sunday, December 20, 2015

Clinical features of neuromyelitis optica in children: US Network of Pediatric MS Centers report

Abstract

OBJECTIVE:

To compare clinical features of pediatric neuromyelitis optica (NMO) to other pediatric demyelinating diseases.

METHODS:

Review of a prospective multicenter database on children with demyelinating diseases. Case summaries documenting clinical and laboratory features were reviewed by an adjudication panel. Diagnoses were assigned in the following categories: multiple sclerosis (MS), acute disseminated encephalomyelitis, NMO, and recurrent demyelinating disease not otherwise specified.

RESULTS:

Thirty-eight cases of NMO were identified by review panel, 97% of which met the revised International Panel on NMO Diagnosis NMO-SD 2014 criteria, but only 49% met 2006 Wingerchuk criteria. Serum or CSF NMO immunoglobulin G (IgG) was positive in 65% of NMO cases that were tested; however, some patients became seropositive more than 3 years after onset despite serial testing. No patient had positive CSF NMO IgG and negative serum NMO IgG in contemporaneous samples. Other than race (p = 0.02) and borderline findings for sex (p = 0.07), NMO IgG seropositive patients did not differ in demographic, clinical, or laboratory features from seronegatives. Visual, motor, and constitutional symptoms (including vomiting, fever, and seizures) were the most common presenting features of NMO. Initiation of disease-modifying treatment was delayed in NMO vs MS. Two years after onset, patients with NMO had higher attack rates, greater disability accrual measured by overall Expanded Disability Status Scale score, and visual scores than did patients with MS.

CONCLUSION:

The new criteria for NMO spectrum disorders apply well to the pediatric setting, and given significant delay in treatment of NMO compared to pediatric MS and worse short-term outcomes, it is imperative to apply these to improve access to treatment.
© 2015 American Academy of Neurology.


SOURCE



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