Category: <span>Reasons for Hope</span>

My youngest daughter recently graduated from high school and celebrated her 18th birthday. While I know this means she will soon enter college, spread her strong wings and fly into her own future, I am neither sad nor melancholy about childhood’s end in our family.

I am excited for her and the potential for good which her future holds! Like her older sister who launched a few years ago, she, too, is a remarkable young lady and she has incredible gifts to share with the world.

In addition to the excitement, there is relief. I have set aside a concern I’ve carried since my wife was first diagnosed: what if something happens to me before our girls are old enough and stable enough to fend for themselves?

Among my first worries when my wife was diagnosed was what would happen if I died or became disabled before our girls reached adulthood. Would my wife be able to care for them?

Now that both daughters have reached the age of majority, I can look back and know my worry was unfounded. My wife’s disease process has been slow enough, that even if something had happened to me, she would have been able to care for them.

In addition to the relief, here at childhood’s end I find myself considering the impact MS might have had on who our girls have become. I know they are different people than they would have been. I believe they are kinder and stronger.

My wife and I have never framed her MS as something she has. “We” have MS.

(If you are an MS patient, you may be thinking, “Yeah, right. You don’t know what you’re talking about. She has MS and you’re just a good support.” And you’re correct, she experiences the effects of the disease. She and I together experience the impact the disease. We chose to make it ours as a way of saying to each other: we’re in this together.)

I believe our decision to consider MS “ours” influenced our daughters in a positive way. I believe both are more compassionate than they may otherwise have been.

Seeing my wife reserve energy before a big event like a trip to the mall, laughing with her as she fumbles memories, knowing the first day of a vacation is down time while she recovers following a flight, and knowing she wants to do things she cannot because her legs refuse to cooperate has taught our girls that when they look at a person who seems to have it together they are not seeing the struggles the person may be overcoming each day to keep it together. Our girls know people are fragile and that mutual support is the only way to make it through this world.

I believe they are more independently minded than they might have been. They will think for themselves. They will not be quitters. They have seen an independently minded woman refuse to give up.

They have seen a woman determined to make good happen when it would have been easier to stop. They have watched a remarkable woman maintain a positive attitude in the face of daily struggles.

My daughters know the effort required for their mom to be present and help organize events at school. They’ve heard her speak in science classes about the impact of MS on the neurological system and the consequences that impact has on what an MS patient can do. My wife has been a powerful role model for our girls and their friends.

I’ll stop there. We’re at childhood’s end. My wife and I are looking forward to enjoying the just the two of us again!

Living with MS Reasons for Hope

Readers of the Multiple Sclerosis Caregiving blog make comments that can usually be separated into just a few subjects related to caregiving: 1) shock at an MS diagnosis, 2) concern about the future and worry about how difficult caregiving will be, 3) questions about a particular aspect of caregiving, and 4) support for another reader.

I wrote in my initial post, I’m an MS Caregiver, “My goal for this blog is that it become a helpful resource for other MS Caregivers. I hope you can use what I share to improve your own life. And in making the caregiving lifestyle easier for you, I believe it will be easier for you to be more helpful to the one for whom you care.”

That fourth subject, “support for another reader”, is the one that has become a very pleasant surprise. That MS Caregivers spontaneously help each other, share insights and tips, and offer emotional support to each other has become the part of this blog I enjoy the most. Thanks for helping other MS Caregivers!

Caring for Yourself MS Caregiving Reasons for Hope

If you’ve ever wondered how new Multiple Sclerosis drugs are developed, evaluated, and finally approved for the market, offers a link to the video of the FDA Committee Meeting on Novartis’s new Gilenia, the first pill for Multiple Sclerosis.

After drug testing and before the FDA approves a new medication, a panel of health experts considers the drug studies and, if the panel is satisfied, recommends approval to the FDA for approval. The FDA usually does as the panel suggests.

The panel reviewing Gilenia recommends it as safe and effective for controlling tremors, concentration problems and other symptoms of relapsing remitting MS.

If the medication’s side effects do not derail the FDA’s approval later this year, Gilenia will be a welcomed medication for MS patients because it is the first MS treatment available in pill form. Approval would mean no more routine injections or infusions for those who take it — no more needles or injection site reactions.

Reported side effects of Gilenia include eye disorders, heart problems and lung problems. In spite of these, the panel recommend approval of the drug for the treatment of Multiple Sclerosis.

With each medication they choose to take, MS patients are faced with the persistent question, “Will my MS treatment be worse for me than the long term effects of the disease?” Because this is a new medication, there really isn’t an answer to this question yet. Not enough people have taken it for enough time for researchers to know the long term effects.

In light of the side effects, the panel did recommend Novartis study the effectiveness of lower doses of Gilenia.

More information about Gilenia:

MS Medications MS Research MS Treatment Reasons for Hope

MS has a history. I highly recommend you explore it for the “big picture” it provides.

“Multiple Sclerosis: a journey through time” is an audiovisual tour of the history of multiple sclerosis. Available in English and German, the online presentation is offered by the German MS Society, Deutsche Multiple Sklerose Gesellschaft (DMSG) and AMSEL Association, a self-help and advocacy organization for MS patients in Baden-Wuerttemberg.

The History of MS gives viewers an excellent overview of the history of this neurological disease beginning in 1395 AD. It’s a very useful educational tool. For example, I didn’t know lumbar punctures have been used for diagnostic purposes since 1913 or that 1972 brought the use of visually evoked potentials to measure the speed of optic nerve conduction as a diagnostic tool for Multiple Sclerosis.

But even more than an educational tool, The History of MS offers viewers a broad perspective. And broader perspectives are important for caregivers.

First, a broad perspective puts your personal situation into a context. It’s easy for some caregivers to feel alone. Others, overwhelmed by the newness of a diagnosis, are confused and without foundation – especially if all they know about MS is the little that most people who are untouched by it know.

Second, because one hears, “there is no cure for Multiple Sclerosis”, the history of medical research is heartening. There is no cure now. But perhaps a cure will be discovered.

Third, having one’s perspective broadened opens one up to experience hope. I’ve considered many times that even if a cure is discovered, it still will not restore the lost neurological functioning. If my wife has lost the ability to walk or swallow, having a cure for MS will only stop those symptoms from worsening. But The History of MS projects into the future, too. It is not unreasonable to think that medical research will, as the presentation offers for 2020, discover a way to repair myelin.

Will myelin repair happen? No one knows. Could it happen? Again, no one knows, but that scientists are imagining it, gives me significant hope!

Website: The History of Multiple Sclerosis

Etiology of MS MS Research MS Support Groups Reasons for Hope

A few tears caught me off guard early this morning. They slipped down my cheek while I read, of all things, a newsletter from a neurological clinic.

If you know someone with Multiple Sclerosis, you’ll want to read the newsletter, too, and learn about the CCSVI research that is being done at the Buffalo Neuroimaging Analysis Center. (I’ll offer a link to the newsletter at the bottom of this post.)

The tears weren’t because the article described a brilliant research technique or procedure. Although, the research is incredibly significant. Nor were the tears because of fancy wordsmithing on the part of the author.

A simple thing happened.

As I read the article about CCSVI, I felt the feather-light touch of potential hope. My heart swelled and my brain shouted, “I want my wife healed!” And my eyes dripped with the hope.

Then, of course, there’s reality. It’s still too early to know whether CCSVI causes MS. Nor does anyone know yet what the best treatment will be if CCSVI is determined to be the cause.

While the research continues, here’s what I do know.

I know I hate that she self-administers injections without any obvious return. I hate that she’s more miserable when she takes the treatments hoping to forestall future decline, than when she doesn’t and risks accelerated decline.

I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.

I hate Multiple Sclerosis. I flat-out, passionately hate it.

And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.

I’m waiting with tears behind my eyes.

Newsletter link (PDF File): Buffalo Neuroimaging Analysis Center CCSVI Newsletter

MS Research Reasons for Hope

Read the CBS News report, “Treating MS Symptoms With Stem Cells: Promising Northwestern University Trial Uses Patient’s Own Stem Cells To Treat Symptoms Of Multiple Sclerosis

Today, the CBS News Early Show presented an interview with Edwin McClure, a young MS patient, who participated in a Northwestern University trail which involved using a patient’s own stem cells and chemotherapy. McClure’s family says he is “cured”. The researchers describe the trial as a treatment of symptoms. Either way, the results presented look very promising. This is definitely a study to keep our eyes on.

Here’s a link to information about the study on the website:

MS Treatment Reasons for Hope

Researchers Disprove 15-year-old Theory about the Nervous System

( — A delay in traffic may cause a headache, but a delay in the nervous system can cause much more. University of Missouri researchers have uncovered clues identifying which proteins are involved in the development of the nervous system and found that the proteins previously thought to play a significant role, in fact, do not. Understanding how the nervous system develops will give researchers a better understanding of neurological diseases, such as multiple sclerosis and Charcot-Marie-Tooth disorders.

Etiology of MS Reasons for Hope

The National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health, offers a well-written online paper titled, “Multiple Sclerosis: Hope Through Research”.

Reasons for Hope

My wife made a comment last week that I’ve thought about a lot since she said it. It was said in passing in the middle of a conversation that I cannot remember (apparently, my wife’s not the only person in our family with poor memory). In this case, though, I think I fail to remember the rest of the conversation because her comment stunned me.

“I don’t think I’ll live a long life.”

I knew if I talked to her about it then, I would become too assertive about how wrong I thought the statement was and that she had no right to think that way. (Actually, she has the right to think any way she wishes … and usually does … even if I don’t like it!)

I knew, though, I wouldn’t be able to listen to what she was really saying. So, a week later, yesterday morning, I asked her about her comment.

“I imagine you said it because you have MS, but having MS doesn’t mean you’ll have a shorter life. Are you thinking you’ll have a shorter life because of something you’ve read? Or is it just a hunch?”

She’s a realist and a pragmatist. “I need the cane to walk around on and it’s getting worse. I’m headed for a wheelchair in my future and I don’t think people confined to wheelchairs live as long,” she explained simply.

I know her gait is worsening. And I won’t be surprised when she requires a wheelchair. But I’m not ready to believe it will shorten her life. I said, “Unless you’ve read some significant study, I wouldn’t assume being confined to a wheelchair automatically shortens one’s life.”

She countered, “people in wheelchairs get less exercise, hearts grow weak, muscles grow weak. I don’t think they live as long.”

Ever the optimist, I responded, “Yes, perhaps that could be true, but I know people confined to wheelchairs who are in great shape. They even make racing wheelchairs for athletes!”

Her eyes said, “but I’m not an athlete.” She looked at me like I wasn’t understanding her. The fact is, I didn’t want to understand. I didn’t want to think that being confined to a wheelchair will shorten her life.

It’s obvious neither of us knew the real impact a wheelchair has on lifespan. So it was time for a little online research.

I’ll share what I’ve found about life span and wheelchair confinement. Interestingly, I’ve not been able to find a single study of the impact of wheelchair confinement on lifespan for MS patients.

So I’m approaching it from a different angle. I’ll start with the basic question, “Is MS fatal?”

MS is not a fatal disease, according to the National MS Society. “Researchers found that over the past 25 years, life expectancy for people with MS has increased.”

A more complete answer seems to be available on the Medscape Today website in “Aging With Multiple Sclerosis“, an article published in the Journal of Neuroscience Nursing (J Neurosci Nurs 36(5):245-251,259, 2004. © 2004 American Association of Neuroscience Nurses)

The authors write, “The disease (Multiple Sclerosis) causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).”

The authors did not separate the MS patient population into two groups, Those in Wheelchairs vs. Those Without Wheelchairs. The statistics include all MS patients.

So I’ve found an answer to my wife’s statement that she’ll not live a long life. I think she will live long.

Here’s why: 85%-90% of MS patients can expect to live as long as their age peers. (I don’t think I’m doing any funny math here, but the following works for me). Statistically, the bulk of MS patients will be found toward the average (inside the bell of the bell-shaped curve for those of you who like statistics and graphs). The 10%-15% of MS patients who do not live as long as their age peers are in the population that are outliers, they are a standard deviation or two away from the norm.

Based on her symptoms to date I believe she is having an “average” experience of MS. So, to extrapolate that into the future, I think she’ll find herself well within the 85% to 90% who live as long as their age peers … with or without a wheelchair.

Living with MS Reasons for Hope

Here’s news that gave me reason to create a new category: Reasons for Hope

Driving home for lunch yesterday I caught just enough of Paul Harvey’s broadcast to hear something about Prozac, Multiple Sclerosis and reduced number of lesions on MRIs. I mentioned it to my wife when I arrived home and then searched the web for more information. (I started at, but didn’t have time to relisten to the broadcast. It would be great if the broadcast transcripts were available on Mr. Harvey’s website – and maybe they are, but I couldn’t find them.)

Here’s what I found:

In Fluoxetine Show Promise in Multiple Sclerosis on the web site, the author describes the results of a small study which were presented at ECTRIMS 2007: 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis. The article is dated October 16, 2007, so we’re not dealing with “new” news.

I think the reason Paul Harvey’s broadcast mentioned it is because the study is about to be printed in Journal of Neurology, Neurosurgery and Psychiatry.

The study conducted by Jop P. Mostert, MD, and his colleagues at the University of Groningen in the Netherlands, showed a reduction in new gadolinium-enhancing lesions in the study’s patients with relapsing-remitting or relapsing secondary progressive MS who received Fluoxetine (the generic name for Prozac).

Read the article for the study’s details or search the web for Prozac + “Multiple Sclerosis” for additional information.

Here are some of the reason I created the “Reasons for Hope” category for this article:

  1. This study was not funded by any pharmaceutical firm. Funding wasn’t an influence.
  2. Fluoxetine/Prozac has been around for a long time and is generally well-tolerated (unlike other MS treatments).
  3. This isn’t a “new” new thing – Dr. Mostert’s report mentioned that, as early as 1991, psychiatrists were reporting that fluoxetine/Prozac was having a positive effect on MS patients.
  4. A list of Multiple Sclerosis Drug Treatments indicates the medication is already prescribed to MS patients for “depression without anxiety“.  And, as mentioned in the study report, psychiatrists were reporting positive effects of Prozac on MS as early as 1991.

Remember, I’m not offering (nor am I qualified to offer) medical advice, merely reporting what I’ve heard on the radio and read of Mostert’s study. Talk about this with your neurologist.

Caregiver Tip: Do your own research on the impact of Prozac on MS and talk to your doctor. It may be something worth considering.

MS Treatment Reasons for Hope