Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag ““Mary Jo Nickum””

Mom’s Story, a Child Learns about MS is available in more formats

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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 ( ).
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 ( ). I was interested in writing for children by this time and I attended a session given by the renowned children’s author, Kathleen Kudlinski ( ). 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.

FDA Accepts Resubmitted Lemtrada™ Application for Review*

Genzyme, a Sanofi company, announced today that the United States Food and Drug Administration (FDA) has accepted for review the supplemental Biologics License Application (sBLA) for Lemtrada™ (alemtuzumab), a proposed treatment for relapsing forms of multiple sclerosis (MS). This application was recently submitted after the FDA did not approve Lemtrada in late December 2013, when Genzyme stated that they had received a Complete Response Letter from the FDA. This letter informed them that the application for their drug was “not ready for approval.” A new decision is expected in the last quarter of 2014.

The reason that the drug did not receive approval, according to the FDA, lies in the design of the Phase III studies. These compared the effectiveness and adverse effects of Lemtrada against an approved treatment for MS, versus a placebo (with no active ingredients). Because of dramatically different side effects between the two different medications, these studies were “unblinded,” meaning that both the patients and treating doctors were aware of which drug each of the patients was receiving. Whenever possible, clinical trials are double-blinded to prevent any potential bias toward the treatment being evaluated.

In order to resubmit the application, Genzyme and the FDA had “constructive discussions” to determine what would be necessary for the medication to be reconsidered for approval. In the resubmitted application, Genzyme provided additional data to address the specific issues that are of concern to the FDA. These data are from the same studies that were included in the original application.

Lemtrada is a humanized monoclonal antibody given in annual courses by intravenous (IV) infusion. It works by depleting the circulating lymphocytes (B and T cells). Lymphocytes are immune-system cells produced to fight infection and disease, and with MS, these cells are misdirected to cause damage to the nerves of the central nervous system (CNS) and the nerves’ protective covering (myelin). Lemtrada was originally approved by the FDA in 2001 for the treatment of a certain type of leukemia (B-cell chronic lymphocytic leukemia), using “Campath” as the trade name.

Lemtrada is already approved in 33 countries for the treatment of MS, including 28 countries in the European Union. Additional marketing applications for this MS medication are under review by other regulatory agencies around the world.


Lemtrada™ (alemtuzumab, formerly Campath) did not receive approval from the United States Food and Drug Administration (FDA) for the treatment of relapsing forms of multiple sclerosis (MS) in December, 2013 because of the design of the Phase III studies.

Thinking Problems in People With Multiple Sclerosis

When you’ve got multiple sclerosis, losing your keys or forgetting a name can be scary. You wonder whether the illness is clouding your thinking.

It’s true that over time, about half of people with MS can have some cognitive problems. That means poor focus, slowed thinking, or a fuzzy memory.   Often these problems are mild and don’t really interrupt your daily life. It’s pretty rare to have severe thinking problems. They affect about 5% to 10% of people with MS.

Signs of Impaired Thinking in MS

The clues that you have fuzzy thinking due to MS are often subtle. You might not notice them until a friend, co-worker, or family member points them out. You may:

  • Struggle to find the right words to say
  • Forget things you need to do or tasks already done
  • Find it hard to plan or set priorities
  • Have trouble concentrating, especially when two things are happening at once

MS usually does not hurt your intelligence or long-term memory. It won’t change your ability to read or carry on a conversation.

Tests and Diagnosis for Impaired Thinking

If you suspect impaired thinking, talk with your neurologist or family doctor. Fuzzy thinking can have many causes.Your doctor can make sure your problems don’t come from normal aging or drugs that may cause confusion, depression, anxiety, or fatigue.

Once you have any health problems fully treated, the next step is usually testing. Your doctor may refer you to a neuropsychologist, speech pathologist, or occupational therapist.

MS and Rehab for Your Brain

If test results show that MS is to blame for spotty memory or poor mental focus, you may want to try rehab to sharpen your thinking. It can include:

  • Memory exercises on a computer
  • Home or work strategies with notebooks, organizers, or filing systems to help you remember things

It’s possible, but rare, that thinking problems become so severe that someone with MS needs constant care or can’t live on their own. If this becomes an issue, discuss your options with your doctor and family. A social worker or psychologist also can help explore options for care.

Can Medicine Help?

Scientists are doing studies to see whether the drugs that slow the nerve damage in MS — called disease-modifying medicines — can help with thinking problems, too.Others are looking at treatments, such as Alzheimer’s medications, that may temporarily improve your memory and focus. Ask your doctor to give you updates on any promising results.

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

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

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.

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