Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag “Mom’s Story”

Best MS Books (29 books)

29 books based on 16 votes: Break The Spell by A.M. Bostwick, Mom’s Story, A Child Learns About MS by Mary Jo Nickum, Multiple Sclerosis: The Questions Y…
goodreads.com
Advertisements

Writing Mom’s Story

I began writing the story in late 2007. Actually, I began the story in February 1978. Immediately after getting out of bed that February morning, I couldn’t stand. The room was whirling, my stomach was churning. I sat on the edge of t he bed until my head cleared a little and I could stand. I tried to dress, but wasn’t able to bend down without the room spinning again and the nausea returning. I made a doctor’s appointment. He couldn’t find anything and treated me with Dramamine for a mild middle ear inflammation. It cleared after about a week and I put the occurrence in the back of my mind. In August of the same year, I awoke one morning with a gray spot in the vision of my left eye. It enlarged over the morning. By afternoon, my vision in my left eye was limited to the extreme outer edges. Being Saturday, I went to the Emergency Room, convinced I was going blind. An Ophthalmologist happened to be on duty. He diagnosed the problem immediately as optic neuritis and prescribed prednisone. That cleared in about eight weeks.
Fast forward to 1989. I had been a “normal volunteer” at the National Institutes of Health for several years. I was asked if I would volunteer for an MRI. They said it’s easy if you’re not claustrophobic, no needles, only some noise. I said I would be glad to do it. They were right, lots of noise but no other discomforts. About a week later, a physician called to tell me that they found something strange on my brain. I went back to the physician and came away with a definite diagnosis of multiple sclerosis (MS). I launched a search for information, this being pre-internet, I went to libraries and contacted the National Multiple Sclerosis Society (www.nmss.org ).
By June of 2006 I had retired on disability from my position as a Science Librarian and worked from home as an editor and writer. I attended a meeting of the Outdoor Writers Association of America (www.owaa.org ). I was interested in writing for children by this time and I attended a session given by the renowned children’s author, Kathleen Kudlinski (www.kathleenkudlinski.com ). Her one piece of advice (among others) that I took away from her presentation was: “Write what you know.”
In October 2007, after spending over a year researching and learning about writing for children, I asked myself, “What do I know?” It came to me quickly, I know about MS. I have been interested in health issues and have read quite extensively, especially about plagues and infectious diseases. But also about MS, I have an extensive library about the disease and I have reviewed books on the subject for Library Journal.

Now in it’s second edition.

Researchers seeking people with progressive MS for nationwide trial of oral therapy

Summary: Investigators are recruiting for a phase II clinical trial of ibudilast (MN-166, MediciNova, Inc.), an oral agent, in 250 people with progressive forms of MS. The study, called the SPRINT-MS trial, is principally funded by the National Institutes of Neurological Diseases and Stroke (NINDS), with additional support by MediciNova, the company that will supply ibudilast, and the National MS Society. The study will be conducted through the NeuroNEXT Network, a clinical trials initiative of the National Institutes of Health. Robert Fox, MD (Cleveland Clinic Foundation) is the principal investigator.

Rationale: Among other actions, ibudilast inhibits an enzyme called phosphodiesterase, and has been shown to protect brain tissue in animal models. . While considered a “New Chemical Entity” in the United States and Europe, ibudilast is marketed in Japan and Korea to treat asthma and symptoms from cerebrovascular disorders. It is being investigated in the U.S. for its potential to treat drug addiction and now, for treating progressive forms of MS. In a previous study, ibudilast did not reduce relapses or MRI-observed new lesions in a phase II trial involving people with relapsing MS. However, some evidence that this agent could protect the nervous system from damage (neuroprotection) was observed, which is why it’s being tested in people with progressive forms of MS. (Neurology 2010;74:1033).

Eligibility and Details: Participants are people between the ages of 21 and 65 who are diagnosed with secondary-progressive or primary-progressive MS who are currently receiving either glatiramer acetate, interferon beta, or neither treatment. . Further details on inclusion and exclusion criteria are available from the contact below.

Participants will be randomly assigned to receive either oral ibudilast (100 mg/day) or inactive placebo daily for 96 weeks. Treatment will be added to existing glatiramer or interferon treatment in patients currently taking those therapies. The primary outcomes being measured are changes in brain tissue volume loss (determined through MRI scans) and safety/tolerability. Secondary outcomes being measured include further imaging outcomes, progression as measured by the EDSS disability scale, quality of life, cognitive function, and pain.

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the study site nearest you, as listed on clinicaltrials.gov.

Sites will be enrolling in the following cities:
Atlanta, GA
Birmingham, AL
Boston, MA
Bronx, NY
Buffalo, NY
Charlottesville, VA
Chicago, IL
Cincinnati, OH
Cleveland, OH
Columbus, OH
Dallas, TX
Denver, CO
Kansas City, KS
Los Angeles, CA
Miami, FL
Nashville, TN
New York, NY
Pittsburgh, PA
Portland, OR
Rochester, NY
Sacramento, CA
Salt Lake City, UT
Seattle, WA
St. Louis, MO
Stony Brook, NY
Syracuse, NY

Visitors’ Choice Award–1st Place 2013

Visitors' Choice Award--1st Place 2013

Books in Sync Visitors’ Choice Award–1st Place 2013 for Mom’s Story, A Child Learns About MS.

Second edition of Mom’s Story listing new treatments to be available soon on Amazon, Barnes and Noble and http://www.marynickum.com

Mom’s Story

250_BBC_Award_Badge_-_2012Mom’s Story has received the Books in Sync 2012 Best Book Cover Award. Mom’s Story is available on Amazon, Barnes and Noble and http://www.marynickum.com

FDA Updates Prescribing Info for Ampyra to Address Risk of Seizure in Those with Reduced Kidney Function

The U.S. Food and Drug Administration (FDA) released a Drug Safety Communication to address the risk of seizures in people with MS who are starting Ampyra® (dalfampridine, Acorda Therapeutics). Ampyra was approved in January 2010 to improve walking in people with MS. Seizures are a known side effect of Ampyra, and seizure risk increases with higher blood levels of the drug. Based on its evaluation of post-marketing reports of seizures occurring in people with MS on the therapy, the agency is updating prescribing information for Ampyra to advise that kidney function should be checked before starting Ampyra, and monitored at least annually, because impaired kidney function can result in high blood levels of the drug.

The FDA also emphasizes that patients who miss a dose should not take extra doses, since an extra dose of Ampyra can increase seizure risk. In its evaluation of adverse event reports, most of the seizures happened within days to weeks after starting the recommended dose and occurred in patients having no history of seizures. Most of those who experienced seizure were at least 50 years old and were at risk for mild, age-related kidney impairment.

The FDA communication notes that “The potential benefits of Ampyra treatment must therefore be carefully considered against the potential risk of seizures before using Ampyra in patients with mild renal impairment.”

U.S. Supreme Court rules on the Patient Protection and Affordable Care Act

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act.  This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis. 

Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:

  • Prohibition of coverage denials based on pre-existing conditions:  Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
  • Prohibition of lifetime limits:  Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
  • Elimination of annual limits:  Similar to “lifetime limits,” many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. 
  • Extension of parent’s insurance to 26:  Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
  • Closing the Medicare Part D Coverage Gap:  Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
  • Pathway for Biosimilars:  The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future.  The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed–which is good news for anyone who uses biologic therapies.

Study Identifies Gene Linked to Vitamin D Deficiency

A recent study at Oxford University in England and published in Annals of Neurology, has identified a gene that causes vitamin D deficiency, a condition suspected of having a role in the development of MS.

The study examined the DNA of a group of people with MS who also have a large number of family members with the disease. All the DNA samples showed a distortion of the CYP27B1 gene which controls vitamin D levels in the body. And in a few rare cases where the DNA showed two copies of the distorted gene, the person was found to have a genetic form of rickets caused by vitamin D deficiency as well as MS.

The cause of myelin damage related to MS is still hotly debated: some believe it to be an autoimmune disease while others cite viruses or the environment as the culprit. There is growing evidence however of a correlation between MS and vitamin D deficiency. Epidemiological studies also show that populations closer to the equator and the sun, have far fewer case of MS than populations closer to the north or south poles. Researchers at Oxford University have now taken this premise a step further by showing that vitamin D deficiency and therefore possibly MS could have a genetic cause.

Despite this pivotal link, not all people with vitamin D deficiency develop MS. More research is needed to fully understand why. However, a distortion of the CYP27B1 gene is increasingly apparent in MS cases and it’s possible that the gene generates other, yet undetected, complications that lead to the disease—such as genetically caused rickets.

“Although vitamin D deficiency doesn’t always cause MS, it unveiled a critical genetic source that could be causing other problems that lead to MS,” says Jeffrey Epstein, whose foundation partially supported the study. “Even if we don’t understand all of the implications of that gene’s distortion, research can focus on gene therapy, and that will accelerate a cure.”

The study was partly funded by the National Multiple Sclerosis Society, The Wellcome Trust and the support of science investor, Jeffrey Epstein and The Jeffrey Epstein VI Foundation.

,

Website

My website, http://www.marynickum.com, is temporarily inaccessible. Sorry for the inconvenience.

Trial of Vitamin D Supplementation Recruiting People with Relapsing-Remitting MS

Summary: Investigators at several centers nationwide are recruiting 172 people with relapsing-remitting MS to compare the effectiveness of the current recommended amount of vitamin D supplementation versus high dose vitamin D supplementation at reducing MS disease activity, when added to standard therapy with glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries). The principal investigator is Ellen Mowry, MD, MCR (Johns Hopkins University, Baltimore) and the study is funded by a research grant from the National MS Society, with partial support from the Society’s Greater Delaware Valley Chapter.

Rationale: A number of genetic and environmental factors influence whether a person will get MS. These factors may also impact the severity of the disease. Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS. In lab mice, vitamin D can reduce the effects of EAE, an MS-like disease, and growing evidence suggests it is time to test whether vitamin D can provide benefits to people who have MS.

Eligibility and Details: Participants should be between the ages of 18 and 50, and diagnosed with relapsing-remitting MS. Participants must be willing to stop taking additional supplemental vitamin D, except as part of a multivitamin, and must be willing to not take cod liver oil. More details on the enrollment criteria are available from the website and contacts below.

Participants will begin standard Copaxone treatment daily and will be randomly assigned to take either 600 IU (the current recommended daily allowance) or 5000 IU of vitamin D. The primary goal of the study is to determine the effects on reducing the proportion of people who experience a relapse. Other outcomes being studied include relapse rate, quality of life, brain tissue volume, disability progression, and excess calcium levels in the blood (a possible side effect of high doses of vitamin D).

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please see: http://www.clinicaltrials.gov/ct2/show/NCT01490502, or e-mail vitamindtrialms@jhmi.edu.

Sites are active in the following cities, and more may be added; please refer to the above link to the clinicaltrials.gov listing for the latest information:

San Francisco, California
Baltimore, Maryland
St. Louis, Missouri
Portland, Oregon

Download a brochure that discusses issues to think about when considering enrolling in an MS clinical trial (PDF).

Post Navigation