She's sleeping now

Douglas Winslow Cooper

I just looked in on my wife Tina as I often do during the day. It’s shortly after noon, and she is asleep. Her breathing is regular, with the help of her ventilator. The baby monitor brings its reassuring sound to the kitchen where I am preparing her food and medications.

The good news is that she is resting peacefully, unaware for a brief time of the limitations her quadriplegia has imposed upon her. Slowly, very slowly, neurological repair is occurring while she rests. Where there is life, there is hope that someday her life will be enhanced by a medical breakthrough for multiple sclerosis. Meanwhile, we make the best of our half-full glasses of life.

The bad news is that this is yet another period when Tina and I cannot communicate. At times, both her thinking and mine are clear, and we can talk as we once did, understanding each other as few, if any, others can. We can have conversations rivaling those we had when we first fell in love at Cornell University in 1963, almost 50 years ago. She quickly grasps my meanings, laughs easily at my puns, speaks carefully so as not to hurt any feelings.

She was Tina Han Su before marriage: Her given middle name, Han, means “reserved,” as in “quiet.” Still waters run deep, and she can be profound. At other times, MS has stolen some of that mental acuity, and our interchanges are less satisfying. Fortunately, mercifully, she rarely seems aware of these cognitive losses so common to those with advanced cases of MS such as hers.

The phone rings, and I hustle to get it before Tina wakes up. Sleep is good for her, but I miss her when she is asleep. Still, Tina’s sleep is a mixed blessing—it’s a time to catch up on other things that need attention, like writing this perspective to share with you. I’ll tell her about it when she wakes. She’s sleeping now.

Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon, Barnes and Noble, or their website, tingandi.com.

Escape from MS

Nicole Lemelle 

Since I’ve formally been labeled “disabled” by society, I’m still struggling to reestablish myself amongst it. I know I will most likely never live as I used to, but it became important to me to snuggle in with myself here and now, as I am – it’s important to me to still try to be me. Does that make sense?

For me that means holding onto things I used to do before MS was in the picture – things I can still take part in – if they include accommodations. In time, my psychiatrist has helped me see these activities as a bridge that allows me to remain in the land of the well.

I realized this when my psychiatrist asked me if I had a hobby that had nothing to do with MS. Hobby? Lady, I’m not sure if I even remember what that is. I live Multiple Sclerosis 24/7. I may have even been slightly offended! Hobby? I don’t have the energy for that. Hobby? I began to sound like Jim Mora and his “Playoffs” rant!

But within a few minutes, I got my bearings and remembered my love for the Spanish language. Yes, I had started learning and speaking Latin Spanish in early college. But several years and many dollars later, I am functional at best! Now, I know there is a cognitive component to MS, but I chose not to let that limit me and returned to learning Spanish.

Do what you can while you can. That’s what I live by! I know this is much easier said than done, but I do things within my means. That’s the key. To my husband’s annoyance, I ended up investing hundreds of dollars in Spanish educational materials. I told him my psychiatrist recommended it!

As I sit here pecking ever so slowly on my laptop, my typing is getting slower and more difficult. I imagine one day I’ll need voice recognition software. An example of yet another accommodation, but am I ready for that one? Nope. I’ll just keep pecking away until I can’t anymore.

Unfortunately, I tend to accept necessary accommodations slowly. I like to do water aerobics, but originally refused to use the chair lift that lowers disabled folks in the pool. What a hypocrite! Right? Well, it took a little coaxing, but I finally used it and felt the cool touch of the water was well worth the short miserable ride into the pool!

So, within 2 months I was able to answer my psychiatrist with a resounding, “Yes, I do have hobbies! I do things that have nothing to do with MS!” How about you?

FDA updates Tysabri label to include testing for PML risk

Julie Stachowiak, PhD 

Writer, ms.about.com

The US Food and Drug Administration just approved a labeling change to Tysabri (natalizumab), which states that people who test positive for JC virus antibodies are at higher risk of progressive multifocal leukoencephalopathy (PML) if they take Tysabri.

I should start by mentioning that the scientific community has been studying the predictive ability of JC antibodies to indicate that people with a positive test are at an increased risk for PML, however, the test only recently became commercially available. There is now a new lab test from Quest Diagnostics, called STRATIFY JCV.

What does this mean and why is it relevant? Well, this means that doctors and people with MS can now make more informed decisions about Tysabri than before.

JC virus is the infectious agent that causes PML, a potentially fatal brain disease. However, many people in the world have been infected with the JC virus. The virus does not appear to cause any disease in people unless conditions are "just right." In a small percentage of people who take Tysabri (and a few other medications), conditions will be just right for the JC virus to proliferate and cause PML, as certain immune cells that usually keep this virus in check can become depleted.

Since PML cannot develop unless a person has been infected with the JC virus, one approach to preventing PML in people who are taking or considering Tysabri is to test for JC virus antibodies in their blood. In one study, an antibody test successfully identified JC virus antibodies in 100% of samples of people with Tysabri-related PML.

The challenge here is that many, many more people have been infected with the JC virus in their lives than will ever develop PML, even among those who take Tysabri. In fact, one study conducted in Sweden showed that 61% of people with MS tested positive for antibodies to the JC virus – a huge percentage, considering that less than .002% of people on Tysabri ever develop PML. The test is pretty effective if the idea is to prevent all cases of PML by refusing to give them Tysabri, but that approach does exclude many people who would be eligible for Tysabri (and may never develop PML).

Also, a negative test for JC virus antibodies does not mean that the person is at NO risk of PML, as they can become infected with JC virus in the future or have a “false positive” test that incorrectly suggests they have not been infected.

Let's take a look at risk levels for PML, based on the JC antibody test and other risk factors:

• The risk of people who test positive for JC virus antibodies (with no other risk factors) is less than 1/1000. 
• If a person tests positive for JC virus antibodies AND has taken Tysabri for more than 2 years AND has previously taken an immune-suppressing drug (such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate mofetil), their risk of PML is 11/1000. Before anyone panics, however, keep in mind that even with all of these risk factors, this represents a 1.1% chance of developing PML – or about one in one hundred. People who meet all of these criteria and are taking Tysabri should not assume that they will develop PML, but should carefully consider this information about elevated risk. 

Bottom Line 
My goal here is to help people make rational decisions about treatment, not to sell Tysabri and not to discourage anyone from taking it. The STRATIFY JCV test will give people more information to enter into their personal treatment equation. Some people with a positive test will decide that the benefits of Tysabri warrant the risk of PML. Other people, even with a negative test, will still decide that Tysabri is not the drug for them, as a risk for PML will still exist. It is a very personal decision, based on many factors.

People with MS and their doctors should take a positive JC virus antibody test as just one piece in the whole equation, especially if other therapy options have been explored and failed. A careful risk-benefit analysis with their doctor will help people figure out whether or not Tysabri is right for them.

What About Progressive MS?

Tim Coetzee, PhD

Chief Research Officer, National MS Society

Recent news stories have again brought sharp focus to an issue that can’t be brushed aside. No matter how many successes there have been in developing therapies for MS, many of them do not apply or don’t work well in people whose MS either started out without relapses (the primary-progressive form), or whose MS started with relapses, but eventually got worse and worse (the secondary-progressive form).

We are painfully aware of this issue. When the Society held a think tank focusing on progressive MS over a year ago, one of the first things participants discussed was the knowledge gap about progressive MS.   

We need to fill this knowledge gap with more research that will get us to a place where we can stop MS progression in its tracks and fix what’s been damaged in the nervous system. Here are a few of those unknowns related to gaps in progressive MS:

• What are the underlying mechanisms that influence why some people have very slow progression while others worsen quickly? Answers to these questions will help point to new therapeutic targets. 
• What factors influence the transition from relapsing MS to the secondary-progressive stage of MS? Understanding these factors should make it possible to interfere and stop progression. 
• What causes nerve degeneration in MS? Finding ways to stop the loss of nerve tissue, and to repair the loss, is crucial to restoring function. 
• How similar or different are progressive forms of MS? Determining this will help inform future research and clinical trials.

Progressive MS is front and center in the Society’s Strategic Response to MS, which guides the Society in its mission to end MS forever. One of the next steps from the think tank is happening this week in Washington, D.C.: the launch of an international consortium on progressive MS by leading MS societies around the world. The idea is that combining our forces will propel this effort forward much faster than if we each try to tackle it alone.  

In coming weeks, I’d like to share with you how the Society, our collaborators and others are working together to advance treatments and understanding of progressive MS. This includes clinical trials now underway in progressive MS; the promise of stem cells; progress in nervous system repair; and new insights into what’s causing progression. In the meantime, I’d like to point out a few resources on our website that may be helpful.

Click here to view video related to progressive MS.

View the Webcast “Research to Improve Quality of Life” with moderator Tracey Kimball and panelists Dr. Dennis Bourdette, Dr. Robert Motl, and Dr. Nicholas LaRocca.

Read more information about progressive MS.

Get Rid of Clutter and Think More Clearly

Julie Stachowiak, PhD 

Writer, ms.about.com

I, like many other people with multiple sclerosis, struggle with cognitive dysfunction.

Some days are worse than others, of course – those are the times that following a familiar recipe seems as difficult as building a combustion engine from scratch. Conversations seem to be in another language, with it taking so long for me to formulate a response that the topic has usually changed, often more than once. On these days, I feel like I am viewing and interacting with the world from inside a phone booth, with walls between myself and the rest of my environment.

I utilize all sorts of mental aids in my quest for functionality. Sticky notes, organization systems, electronic calendars and reminders all come into play. I try to function in a world that is increasingly becoming geared to the multi-tasker.

What really slows things down in my fuzzy-headed existence, however, is clutter. I'm talking about stuff, the kind of stuff that just happens as a result of life. I have six-year-old twin girls, so it is possible to look around and find tiny Barbie shoes, tiny kid shoes, a goldfish cracker or two, school backpacks, Lego blocks, beads that fell off of a half-finished necklace, markers and several pieces of paper with failed attempts to draw Pegasus unicorn creatures. All of this can occur within an hour of the girls being home from school while I am trying to cook dinner.

We also have two adults living in the house with these little people. My husband might leave his shoes in the hallway or walk away from the kitchen, sandwich in hand, with all of the fixings still on the counter. I am not innocent, either. I blame my flighty brain on things left in truly bizarre places (recent head-scratchers include milk in the laundry room, one shoe on the kitchen counter, a wooden spoon on top of my dresser).

All of this is perfectly normal, of course. However, clutter can be a mental drain. You focus on the stuff scattered about and start thinking about how you wish it was gone, you wonder how it got there, you think about who to ask to clean it up, etc.

We all need a quiet place to rest our eyes, yet many of us don't have that. Let's regain (or create) it by tackling the clutter.

Here are some tips:

• Talk to your family. Explain to them that it makes your brain work more slowly when clutter is present. Ask them to help you keep things neat. 
• Spend 15 minutes a day getting rid of clutter. Set a timer if you need to, but just pick an area and go to work, preferably at the same time every day. If you do this for a week, you will make good progress. 
• "Quarantine" your clutter. If it seems overwhelming, grab a large cardboard box and pile stuff in there, then put the box out of sight. You will know where it is if you need it later. It will be much easier to sort it in a week, as you can sit in one area and make piles of stuff to "keep" or "throw away," rather than picking things up one at a time and trying to put them in proper places at that moment. 
• Look at ways to prevent clutter. We recently installed a shoe rack on the back of the closet door near the entrance to our house, eliminating all sizes of shoes from the floor. A big bin is great to collect toys at the end of the day – sorting can happen later. Make it easy for everyone to help. 
• Once you get rid of all the junk that is not supposed to be there, take a hard look at what is left. Try "quarantining" any decorative items that are not serving a function. If you still miss them after a couple of weeks, bring them back out.

Trust me, getting rid of your clutter is one of the best things you can do to help your brain. It will also make you feel better about your surroundings (and your family, if they are clutter offenders). Let us know your thoughts in the comments section.

Make things easier for yourself in 2012

Julie Stachowiak, PhD 

Writer, ms.about.com

You may have made all sorts of new year's resolutions in the past that involved doing things that are pretty difficult, such as losing weight, quitting smoking, or exercising more. I want to encourage you to do something that will actually make your life easier.

I would like all of us to take a hard look at how our MS is affecting our lives in terms of getting the day-to-day stuff done. This is certainly not easy, as acknowledging loss of function must be one of the hardest parts of this disease. However, regardless of how much we wish things were different, struggling against some of these physical impediments that MS has tossed in our paths often just ends up adding to our fatigue and making us more frustrated.  

Therefore, I would like each of you to make a list of how accomplishing everyday tasks in your life has become a little more challenging. For instance, do you find that:

• You are increasingly holding onto walls and furniture to walk without falling? 
• You will leave a parking lot if you cannot find a parking place close to the entrance? 
• You wish it were a little easier to get in and out of the bathtub or off the toilet?

Here is the good news – many of these things can be made easier for us. There are solutions for these problems, once we admit that we need a little help.

For instance, you can:

• Consider getting a cane if you are having balance issues or are unsteady on your feet. Many people who get a cane or walker say that they wish they had done it sooner. If you think you are not ready yet, go ahead and get one for hard days or "just in case." Ask your MS doctor to refer you to a physical therapist who can help you get a cane that fits you and teach you how to use it properly. (Read more: When should I get a cane if I have multiple sclerosis? And, Adaptive Equipment, Emotional Adjustment.) 
• Get a disabled parking placard (aka "handicapped tag") for your car. Having access to those parking places closest to the entrance of a store or office building can really make a huge difference (especially on a hot day) by allowing you to conserve energy or get out of the heat. Your doctor should have all the forms that you need and will be able to help you fill them out (you may also need him or her to write a prescription for the placard). Again, you may not need to use it often, but it is wonderful to have "just in case." (Read more: Get a handicapped parking placard.) 
• Bathrooms can be dangerous places, with slippery hard surfaces that are unforgiving if you fall. It can also just be annoying to need help to do personal things like use the toilet or take a bath. An occupational therapist can visit your home and help with things like installing "grab bars" next to the toilet or bathtub/shower.  Your MS doctor can give you the necessary referral to an occupational therapist. (Read more: Make Your Bathroom Safer and Easier to Use, and  Occupational Therapy for Multiple Sclerosis.)

Look, I know that admitting to yourself that your body is malfunctioning in one way or another is emotional. Tangible manifestations of these problems, such as canes, parking tags or grab bars, often serve to make these problems feel a little more real.

However, you must remember that life is not a contest. We all need to do the best we can to enjoy our time here without striving for perfection, but aiming for feeling good about those things that we can do. That said, make your list and give yourself a break by pulling in little "helpers" where needed. You'll be glad you did.

If you would like additional information about adaptive equipment, disabled parking placards or home modifications, contact an MS Navigator at 1-800-344-4867 or contactusNMSS@nmss.org. You can also learn more about home modifications in Shelley Peterman Schwarz' new book, Home Accessibility:300 Tips for Making Life Easier.  

Hi ho! Hi ho! To the doctors we go

Douglas Winslow Cooper

My beloved wife, Tina Su Cooper, now quadriplegic due to a near-fatal MS exacerbation eight years ago, limits her trips now almost exclusively to doctor visits. We have a specially equipped van for transporting Tina, her wheelchair and equipment, including back-up supplies. However, we live in a rural area, and a breakdown on the sometimes lonely road would be a major problem. Unnecessary trips represent unnecessary risks.

Even so, Tina travels many times a year to see various doctors, including her pulmonologist in Middletown, NY to whom we give the lion’s share of the credit for saving Tina’s life almost eight years ago, during her 100-day battle against pneumonia and septicemia in the Critical Care Unit of Orange Regional Medical Center.

Perhaps surprisingly, she looks forward to her doctors’ visits. We try to shield Tina from pain, and she is an exceptional patient: alert, upbeat, stoic, appreciative. Being alive and married to each other is a daily miracle, and we try to find a laugh wherever possible, joking that we’ve “put the humor back into quadriplegia.” Not always, of course. Now and again, tears are more appropriate than laughter.

Each doctor is a character. One is a mountain of a man, truly a gentle giant; I call him “the Moldovan Marvel,” acknowledging his country of origin and his surgical talent. Our family doctor epitomizes the caring, gentlemanly country physician; he is the former head of the county medical association. And her now semi-retired pulmonologist knows us longest and best; he wrote a lyric forward to our memoir and has come to truly care for Tina, I believe.

So—Hi ho! Hi ho! To the doctors we go. Even medical trips can become change-of-pace, change-of-space adventures.

 

Douglas Winslow Cooper, PhD, a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37. She is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available at tingandi.com.

2012 Resolved: To Speak of the Unspeakable

The Unspeakable Bits; From A Life With MS

My name is Trevis Gleason and I live with multiple sclerosis.

For the past decade, I’ve lived with my diagnosis; for the past 25 years (probably) I’ve lived with symptoms of MS. For nearly seven years now, I’ve been the nominal leader of a community of people living with this disease through pages of the Life With MS Blog at EverydayHealth.com.

One thing I’ve read and heard over and over (and over) from people on my blog and when I speak to groups about MS is, “I thought I was the only one” or “I felt so alone…” These comments particularly come up when we converse about some of the ‘stuff’ about MS that people don’t talk about in polite company.

I am honored and humbled that the National Multiple Sclerosis Society has asked me to, on a monthly basis, address some of those dark-corner conversations and fearful topics in the coming year.

In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and – quite frankly – by many of us living with MS) to discussion. This evolution is not intended to be a grandstand for the doomsday set – quite the opposite. I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning.

By peeling away the layers of mist and fog and politeness, we hope to see the scariest parts of living with multiple sclerosis for what they are; possibilities from which we should not hide and about which I’ve felt better once I’ve acknowledged them.

In a world where the internet will get you answers to every question under the sun (and a certain percentage of those answers might actually be factual. . .) I applaud the Society for offering us the space to discuss the scariest questions about MS.

We have some basic starting points in mind for these discussions. If, however, there is one thing I have learned through my years of blogging it is that when we open these things up to the community we end up with a far richer conversation. To that end, I’d like to take this opportunity to ask you – the readers of The Unspeakable Bits – what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?

Will there be information in these pages that you might rather not read about? Likely. Do I intend to candy-coat any of the topics? Not A Chance. We owe it to ourselves to be honest.

Oh, by the way, I have also been told I’ve a bit of a “dark” sense of humor when dealing with these things in my own life. Were I you, I’d expect a bit of that to come across in these pages as well. I guess that it’s just how I cope…

People who live with MS are some of the strongest people I’ve ever met.  I believe that by linking arms with one another and around the facts, we can raft ourselves together and survive the MS storm far more effectively than by swimming alone against a sea of rumors and half truths.

To this end, we will begin our conversations next month – the month which will see us acknowledging/celebrating Valentine’s Day – by discussing one of the most joyous parts of human life, but an element of life which MS has changed for many of us with this demandable disease.

Our next blog will open the bedroom doors to a conversation about Sex & MS.

What other taboo topics – what other “Unspeakable Bits” – would you like to see opened for conversation in these pages over the next months?

Wishing you and your family the best of health (and a Happy New Year!)

Cheers,

Trevis

You can follow Trevis via his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

Multiple Sclerosis Symptoms and Winter Weather

Julie Stachowiak, PhD 

Writer, ms.about.com

Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. When I asked people with MS on my blog what their MS temperature “limits” were, I was surprised that many people came back with answers lower than I would have expected – most said that 80 degrees was pretty much their cutoff for comfort and that 55- to 70-degree weather was really ideal.

However, it got even more interesting when several people said that while hot temperatures were not good, the cold wasn't so great for them, either.

Many people wrote in to complain of increased spasticity in the cold weather. Readers mentioned that their limbs "felt like wood" or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs.)

I also know that some people living with MS tend to feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight are exacerbating depression, which can be a symptom of MS.

New data is emerging all the time on the role of vitamin D in MS. Experts are fairly confident that low vitamin D has a role in developing MS, but now it is really looking like vitamin D levels have an impact on relapses and disease progression. It has been well-established that vitamin D levels in people are lower in winter months due to less exposure to sunlight (which is necessary for the body to produce vitamin D). Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet by scientific studies.

However, the effects of cold on MS symptoms have not been studied extensively. I was able to find one study that compared people with MS in the same four-week inpatient therapy program held in two different locations: Spain (warm) and Norway (cold). After therapy, the average walking distance had increased more in Spain (70 meters, as opposed to 49 meters in Norway) and participants also reported less exertion after walking in Spain than they did in Norway.*

I've put together a few tips below to help you enjoy the colder months if you find that you are bothered by frigid temperatures. Please add your own stories and tips in the comments section.

• Soak up the sunshine. As much as you can stand to be outside during the warmest part of a sunny winter day, do it (within reason). Help your body produce vitamin D. Even better, get a little exercise outside while you are at it. 
• Don't overdo the heat inside. I tend to get a little dramatic when I get too cold and, as a result I take really hot baths or showers. Recently, I got dangerously dizzy from my hot shower. Remember, extreme heat is not our friend, either. 
• Warm yourself from the inside. Try drinking a hot beverage to take the chill off and warm your core faster.

Like many other situations that we must navigate through with MS, a little strategic planning about winter activities can help you have a little control over symptoms. Really put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months.

*It should be noted that the people in this study were not heat-intolerant.