Monday, April 30, 2012

MS Dysfunction of the Bowel

The Unspeakable Bits; From A Life With MS

Rounding out our discussion of the “plumbing issues” that can be brought on by MS (we spoke of Sex in February, Bladder in March), we now move on to something that many of us fear to even think about: MS-related bowel symptoms. The very idea that something might go wrong with our excretory system – a very private matter for most people – is so far beyond polite conversation that we might not even discuss it with our medical team.

Truly, MS bowel dysfunction is one of the “Unspeakable Bits”!

While symptoms of the bowel are not all that uncommon, severity beyond management is rather rare in MS.

Not unlike MS symptoms of the bladder, bowel symptoms come – mostly – in two opposite forms: constipation and loss of control. Couple these with the always-possible loss of sensation and we might not even know we have to go, or feel the discomfort of constipation.

As I said, severity of the symptoms is usually relatively mild and in many cases, the symptoms predate diagnosis and have never been thought of by us as related to MS at all.

Relatively simple (and healthy for the general population) bowel management strategies can be implemented by you and your MS medical team (if symptoms are intense enough, this may include a gastroenterologist). Steps like drinking enough water to stay properly hydrated, eating enough fiber in our diet and taking note of changes in regularity can be more helpful – particularly early on – and have fewer side-effects than prescription medications used to regulate bowel function.

A lot people with MS cut back on fluids in order to manage bladder issues, and that cutting back can get in the way of bowel function. So the strategies to manage the bladder and bowel actually need to be coordinated.

One factor often overlooked that can both cause and exacerbate bowel issues is the result of another MS symptom: lack of mobility.

The simple act of moving around helps our digestive system work properly. If a person’s mobility is affected by symptoms of MS, it stands to reason that sitting in a chair or scooter for most of the day will have detrimental consequences to bowel health and function. A few, low-intensity stretches each morning can help wake mind, body and bowel.

Shakespeare, in a monologue from “As You Like It,” writes that “All the world’s a stage…” and by the seventh and final age we have returned to childhood once again. While we don’t think about it much, we somehow expect that adult diapers may play a part in our final act. We have a hard time, however, thinking that we may require this prop while still “seeking the bubble of reputation.”

It is important, therefore, that we not risk our health for the sake of humility. Many bowel symptoms of MS can be easily attended to well before they become severe. Not talking to our docs about our concerns early (before they happen, even) and hiding behind the bathroom door seems rather childish and, let’s face it, MS makes us wise beyond our years.

Wishing you and your family the best of health.



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

For additional information and resources – including referrals to medical professional in your area – call an MS Navigator at 1-800-344-4867.

Friday, April 27, 2012

Sunlight and MS

Most of us are familiar with the evidence to support the theory that that low vitamin D levels are related to the risk of multiple sclerosis.  Researchers are also studying the ways in which  exposure to vitamin D after diagnosis may impact the progression of MS. (Of course, there are many people that have believed this for years and take supplements to make sure their vitamin D level is within a certain non-deficient range.)

Usually, the research has focused on vitamin D supplementation or levels of vitamin D in the blood. However, a recent study looked at sunlight exposure and disability progression in people with relapsing-remitting MS (RRMS) as well as primary progressive MS (PPMS).

The study was conducted among 1372 people registered with the Flemish MS Society in Belgium who answered a survey. The researchers looked at amount of sun exposure and skin type and how these related to MS-related disability, which was defined as 6.0 on the Expanded Disability Status Scale (a score of 6.0 indicates that the person needs some assistance to walk).

Here is what the research showed:

  • People with RRMS who "always" wore sunscreen were 1.8 times more likely to have reached an EDSS of 6.0 or higher than those who "never" or "sometimes" wore it. 
  • People with RRMS who reported equal or higher levels of sun exposure than their peers without MS were about 30% less likely to have reached an EDSS score of 6.0. 
  • Interestingly, people with PPMS who reported having "sun sensitivity" from birth, defined as burning within 30 minutes of being in the sun, were 1.8 times more likely to have reached an EDSS score of at least 6.0 than those with less sensitive skin. This was not the case in people with RRMS.

Researchers are not sure what these results mean. It could be that sun exposure has a beneficial effect on people with MS, perhaps because of increasing their vitamin D levels. It could also be a situation of "reverse causality," meaning that people who are less mobile will naturally spend less time in the sun because their outdoor activity is more limited.

We have to be careful not to draw too many conclusions from this study, as there are several weaknesses to the research. Only 50% of people contacted responded to the survey. The survey was based on self-reporting, which can lead to recall bias – in other words, a person’s awareness of the possible link between vitamin D and MS might have influenced her or his answers. For example, this knowledge might have influenced them to say they didn't get as much sun as people without MS did. So while this is an interesting study to generate hypotheses for future research, this is NOT a call to stop wearing sunscreen and hang out in the sun all day.

Remember, although I do think sunlight makes me feel better, we are all still susceptible to sun damage and skin cancer. I still put sunscreen on before stepping outside. I also limit my time in the sun. Like most people with MS, I am also heat intolerant, so when the temperature gets above 85 degrees or so, I can be found inside.

Source: MB D’hooghe, P Haentjens, G Nagels, M Garmyn, and J De Keyser
Sunlight exposure and sun sensitivity associated with disability progression in multiple sclerosis. Multiple Sclerosis. April 2012 18: 451-459,

Tuesday, April 24, 2012

“Twogether” Forever

Douglas Winslow Cooper

In love for nearly half a century, married more than a quarter-century, we lay next to each other in her bed that night, beside her life-support equipment.

My beloved wife Tina Su Cooper asked me, “Will we be together through eternity?”

Yes. If heaven is in store for us, we will be there together. Otherwise, we will lie side by side. Our graves will share a headstone that says, at the bottom, ‘together forever.’ If I go first, don’t hurry to join me. If you go first, I won’t hurry, either. There will be an eternity through which to remain united.”


“Dearest Ting, thank you for loving me and for being someone worthy of my devotion.”

“Thank you, too.”

“Our love is something like a work of art, and we are collaborators in its creation. It is not as tangible as a picture or a sculpture or even a book. It is more like beautiful music, and in that way it can endure forever.”

“I like that: beautiful music, a duet.”

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,

Wednesday, April 18, 2012

But you look so good

Susan Skoney

In my last vent, I was feeling very crabby about the host of problems that having MS creates. The problems have not been solved, but I am coping a little better. And, thank heavens, my mood has improved. Maybe because I got my hair cut and for the first time in my life, professionally colored and highlighted. I can see your eyes rolling and I can hear some of you laughing out loud. But it did perk me up, and I have gotten so many compliments, including the dreaded, “You look so good.”  

This got me thinking. What is so bad about looking good?  Remember Billy Crystal doing the Fernando Lamas shtick? His big line was, “You look maahvellous,” followed by, “It is better to look good than to feel good.”  There are many days I would sell my soul to feel better than I look or move, but neither will happen. So I’ll gratefully take any positive comment and just hearing it makes me feel better. Really, would you prefer people coming up to you and saying, “I hope you don’t feel as terrible as you look.” I wouldn’t. Do you think our discomfort with the “But you look so good” line comes from fear?  Fear that those around us have no clue about our pain and the struggle we have just to get through the day?
A few years ago, I was depressed and overwhelmed by MS and how it can turn your life upside down. I took to my bed and it was not pretty. It was also very disturbing,   especially to my kids and husband. One of my dearest friends, someone I have known since eighth grade, showed up at my house. Not the shy type, she came right upstairs and said, “What the H... are you doing? Auditioning for a role in a nursing home commercial? Get the H…UP!” She helped me shower, dress, put on my makeup and was completely oblivious to my complaining and whining. After pasting me back together, we had lunch, at which time she pointed out that I was one of the vainest people she knew (one of my endearing qualities) and even though I had MS I didn’t have to look or play the part of sick person.

She was right. I am vain. And I like to look good. So even on the days I’d be getting an infusion, I would start out in well-styled hair, lipstick and a nice outfit. Now the end of the day was another story, but when I arrived the nurses would all comment on my great appearance, which made me feel better, even if just for a little while. Having MS is bad. Looking good even though we have MS, in my opinion, is a GOOD thing. So, don’t be mad when people tell you how great you look. Thank them and tell them you feel maahvellous.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Thursday, April 12, 2012

A couple looks at multiple sclerosis

Dan and Jennifer Digmann

These were the headlines from the flyer promoting our presentation for MS Awareness Week:

“2 different forms of MS. 2 inspiring voices. 1 continuing love story.”

As part of Clarke Historical Library’s annual speaker series at Central Michigan University, we had the opportunity to share our stories as a husband and wife who both are living with this chronic illness.

Combined, we’ve taken on MS for more than 25 years and show how the disease impacts people so differently. Jennifer was diagnosed in 1997, has secondary-progressive MS and no longer walks. Dan was diagnosed in 2000, has relapsing-remitting MS and is training to run a 10K.

According to the National MS Society, more than 400,000 Americans have MS. Of those diagnosed with this disease of the central nervous system, more than 18,000 live here in Michigan. Knowing these numbers makes it even more amazing that we found each other and continue to defy the odds we face together.

OurIt’s ha relationship started nearly a decade ago at the Society program, “Finding Your Buried Treasure.”

“I think that boy kind of liked you, Jen,” is how Jennifer’s mom opened their discussion as they drove home from that daylong event.

“No, Mom. Dan’s a self-help group leader, and I’m a group leader too. Really, that’s all it was,” Jennifer answered back, but all the while she kept thinking, “Wouldn’t it be awesome if he did?”

She soon learned that moms always know.

“I know we both are self-help group leaders. Really, there could be so much more,” Dan remembers thinking as he drove home with Jennifer’s email address and phone number in his pocket.

We both wanted to get to know each other beyond the disease that introduced us.

Our relationship grew from emails and phone calls to three years of dating and a wedding on Sept. 10, 2005.

Since our wedding more than six years ago, we have actively led an MS self-help group, participated in annual Walk MS events and served on the regional MS volunteer council.

We also do as much as we can through our writing, speaking and living life to the fullest to increase MS awareness and help people throughout our community and beyond to move forward with their lives.

This is why our recent presentation at the Clarke Historical Library was especially important for us. In addition to speaking for MS Awareness Week, we were invited to present as Michigan authors and to share stories from our recently released book, Despite MS, to Spite MS. Our book is a compilation of personal essays about how we are living with MS, accented by haiku-style poems from author Judy Williams, who also has this disease and shares these poems on her blog, “Peace Be With You on the MS Journey.” Portions of the book proceeds are benefiting the Society and Camp Courageous, a camp for people with disabilities in Dan’s hometown of Monticello, Iowa.

As Jennifer writes in the book’s introduction, “Not only does our story need to be told, but our voices should be heard. Mine being that of a woman living life with MS and a wheelchair, being as hopeful and positive as possible, Despite MS. And, the voice of a man, my husband, who is working, running, and also living a hopeful and positive life, To Spite MS.”

We are excited to write for the Society’s newly created blog and look forward to sharing more of our stories with you here.

Monday, April 9, 2012

Slaying a giant

Travis White

What can classic mythology teach us about MS?  Well, it can certainly teach us how to slay a giant.

Most of us are familiar with the story of David and Goliath.  David killed Goliath not with a broad attack but by finding a very small weak spot in the middle of his forehead.

Similarly, Achilles was invulnerable except for one small spot. When his mother dipped him in the secret sauce, she held him by his heel. Thus, he had a small – but important – vulnerability.

Less familiar perhaps is the story of Siegfried, the champion of the German epic, the Nibelungenlied. Siegfried slayed a dragon and then bathed in its blood. As you may know, when dragon’s blood touches your skin, you become invulnerable. Unfortunately for Siegfried, a leaf fell into the small of his back while he bathed and no blood touched him there. Like Goliath and Achilles, Siegfried had a small but potentially fatal vulnerability.

What do these stories teach us? To slay a giant, think small not big.

For most of my career, I managed small software companies that competed against much larger, more established companies. I used to give pep talks to our employees that the way to beat our giant competitors was to focus on small advantages and market niches. As long as we maintained our discipline, the strategy worked remarkably well.

Now I have another giant in my life: MS. I try to follow the same philosophy, however. MS is bigger than I am. I’m not going to beat it with an all-out frontal assault. That would simply exhaust me. But I can perhaps hold it at bay by doing small things in a disciplined manner.

So, I try to do something every day – even very small things. MS could affect my balance, so I brush my teeth on one foot. Upper teeth, left foot; lower teeth, right foot. It’s not much but it’s something and it reminds me that there are many ways to push back. I also do thought experiments to affect my mood. By focusing on certain words and images, I can “prime” my emotional state. (More on priming in a future blog). 

Some days, I do more – a bike ride, yoga practice, or a session with my trainer. I also take a nap every day to preserve my energy and improve my mood. Every day, I do something to remind myself that MS doesn’t define me. Even the smallest actions can strengthen my resolve. In fact, I’m reminded of yet another classic story – the Dutch boy who saved a town simply by putting his finger in the dike. Small actions can create huge results.

Friday, April 6, 2012

Hot Weather Can Impair Cognition in People with MS

I bet that many, if not most, people with MS who are reading this are thinking, "This is news? I could have told anyone that my thinking (along with other things) is impaired in hot weather." This actually is a big deal, because it is the first time that the link between heat and cognitive functioning in people with MS has been formally demonstrated.

Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, conducted a study comparing  cognitive functioning in different temperature conditions in 40 people with MS and 40 people without MS. The data showed that people with MS scored 70 percent worse on tests of memory and processing speed during hot days, while people without MS scored the same during hot and cool days.

This is important information for many reasons. The study scientists pointed out that this type of seasonality could really affect clinical trial results. For instance, if people enrolled in a trial in the summer and were followed for six months, a drug to treat cognitive dysfunction (or many other MS symptoms, really) could seem like it worked really, really well, when in fact, much of this improvement could simply be due to temperatures dropping.

That is interesting from a scientific perspective, but what does this information about heat and cognition mean for people with MS? There are no treatments that are effective for cognitive dysfunction, but there are some things we might be able to do to help ourselves. Most of us have strategies we use to stay cool and avoid overheating. Here are a few additional tips you may want to consider:

Ask for accommodations at work: Clearly, this applies if you have told the people that you work for that you have MS. If so, you may want to explain to them that the hot weather makes things a little harder for you and that you want to do a good job, but need a little help. Be specific in what you want – certainly, you could ask to be moved from a situation that had you outside during hot months. You could also ask for people to communicate with you in certain ways, so that you wouldn't miss anything that might be mentioned in passing – document requests in e-mail or using a shared online calendar might help.

Fix your world: I think many of us are our own enemy when it comes to cognitive dysfunction. We try to multitask while living in a world with constant noise and clutter, which leads to stress and frustration when we can't get everything done or forget things. Try this: Clean up your house. Turn off the television. Focus on one thing at a time – when you talk on the phone, just concentrate on the conversation – don't simultaneously fix dinner, surf on the Internet and keep an eye on your toddler. You may think you have no time for only doing one thing at a time – trust me, you will get more done and it will be done better if you don't try to do it all at once.

Be patient: Treat yourself kindly. Yes, I get mad at my brain for slowing down in the summer and I have gotten frustrated that my work doesn't get done and I forget things and on top of it, I feel lousy for a good chunk of the year. Guess what? That hasn't helped me one bit. In fact, it makes everything worse when I let myself get flustered. When I feel these emotions coming on, I try to slow down my reactions to things and figure out how to make my immediate situation better. Sometimes, dropping everything and having a big cold glass of iced tea is enough to derail the negativity. Other times, it may take a little more effort, like a cool shower or a phone call to a friend. 

As we head into summer, think about what you can do to make these months bearable for yourself. I'm going to make it a goal to try to find a way to enjoy myself during the upcoming hot days a little, rather than glaring out at the world from behind my curtains. 


Tuesday, April 3, 2012

Like A Child

As a child, I couldn’t wait to be all grown up. I hated how adults unapologetically and constantly made decisions for me. I wanted to make my own choices. What I failed to realize is that being a decision maker also makes you responsible for the outcomes associated. 

I learned that lesson during my teenage years by making bad choices, but as I matured I made better choices and my mistakes decreased. Now when I decide to do something, nine times out of ten, I recognize when it is a bad choice. If I elect to eat three cupcakes instead of one or if I stay up late watching a movie despite having an early morning appointment, I accept my bad choice. I also prepare myself to pay the consequences for that choice.

If only all of my decisions were so trivial everything would be all right!  I run into problems when I have to make important decisions. Making the wrong choice in these situations can lead to treacherous outcomes. That scares me.

Since being diagnosed, I have been on various MS medications.  Regardless of counsel from my doctors the decisions to switch, start, and stop certain drugs have been ultimately up to me.

Recently I was faced with the decision to begin taking a new treatment and I chose to opt in. I don’t know about you but I am always looking for that miracle cure. I was hoping to see some inkling of improvement but that really has not happened. Every time I get fatigued or when I can barely get out of bed, I question my decision. I know this is not relational thinking but I can’t help it. I am worrying that maybe I made the wrong choice and should have stayed on my previous medication.

I hate this MS brain of mine. It is causing me to second guess my every move. Of late, brain fog seems to be increasingly blurring my cognitive reasoning abilities. Because of my decreased aptitude, when I make life-changing decisions my husband is always with me. We talk and weigh our options but thankfully in the end the final determination is mine. When he disagrees with me I fight him tooth and nail.

One time in order to win my argument I even proclaimed, “It’s my life and this is what I want to do”.  He ultimately gave in to that one, but I am not sure how long he will allow it if I continually make bad choices. I don’t know if changing my medication was a bad choice but right now it sure feels that way. That scares me, too.

Making my own choices is my last bit of independence and I’m not ready to relinquish that privilege. When my decisions are overruled I feel belittled and sometimes embarrassed if done in public. My opinion is being reduced to one of an adolescent. I do recognize that I may have to defer more of my decisions to family as my decision-making abilities decrease. I just wish there was a way I could do this without feeling like a child again.