Tuesday, December 27, 2011

Does fatigue limit you?

Nicole Lemelle 

Fatigue has been a huge issue for me recently. On Tuesdays and Thursdays I attend my usual MS aquatics class, but this particular day fatigue had me in a bad way. So instead, I opted to go to the gym and walk on the treadmill. I clutch the bars for balance and creep along at 0.5 mph.

The goal for today was 10 minutes. Just 10 lousy minutes! That’s what I usually do on good days. What made me think I could go today even though I was too tired to go to the pool? I don’t know … Was it denial? Wishful thinking?

Six minutes into my walk, I saw Tommy, my husband, get up and stand closer to me. I thought to myself, “I must be dragging my feet. Nicole, pick them up. Pick them up.” At seven minutes, I could feel myself winded, sweating, and my heart rate was through the roof.  I’m still only going O.5 mph!

I made a very smart move. I pressed stop. I thought a break was called for. I guess hubby thought I was finished. Nope. I caught my breath and started again. The machine started at 0.3 mph. Yeah! Then it climbed back up to 0.5. Shoot!

I needed to believe, “I can do this!”

Then I took another step. My left foot didn’t clear the tread. In turn, I tripped and that was the end of my workout. Eight minutes!

I just want to walk again and in my delusion, this exercise was key to making that happen. Folks, I know you know multiple sclerosis doesn’t work like that. I do, too. But still, I lowered my head in defeat once again and muttered to my husband, “I couldn’t make 10 minutes.”

He smiled and said, “It’s only a number.”

Learn more about fatigue here.

Nicole Lemelle blogs regularly at My New Normals. Read more about her here.

Thursday, December 22, 2011

Does your cough last a long time? It might have something to do with your MS.

Writer, ms.about.com

As much as I welcome cooler weather, I always get a little anxious when the thermometer starts dropping, as that signals the onset of cold, flu, bronchitis and pneumonia season. Many years ago, I discovered that when I got a respiratory illness, my cough would be the very last symptom to resolve and it would last much, much longer than seemed "normal."

My bouts of coughing also tend to be a lot more prolonged and dramatic than those of others, as it is hard for me to catch my breath, so I turn red and have to lean on something to keep my balance. More than once, during public coughing fits, I have been asked by restaurant managers or salespeople if they should call someone to help me.

It turns out that this tendency to cough is at least partially related to my multiple sclerosis. It is estimated that about 30% of people with MS have decreased respiratory function. However, this number may be even higher, as studies of the muscles involved in respiration (breathing in and out) have shown that people with MS can have reduced breathing strength, even early in the disease. The tests that are used to measure breathing assess the functioning and strength of respiratory muscles by testing maximum inspiratory (breathing in) pressures and maximum expiratory (exhaling) pressures.

Lower respiratory strength can result in coughs that are weaker, and therefore, less productive (bring up less mucus). In some people, this may translate into a cough that lasts longer, since the coughs aren't getting the job done. One study found that lower "voluntary cough efficacy" is related to level of disability in people with MS, so that people with a higher EDSS tend to have "weaker" coughs.

I dread coughing so much that I have become very aggressive in my efforts to prevent or shorten such cough-producing illnesses. I have found that it is very important to see the doctor early.

In my younger days, I would let a cough go for a long time before seeking treatment. I remember a time during graduate school where my cough lasted from Christmas to Spring Break (you can imagine that I was a favorite in the lecture hall). Finally, it petered out on its own.

Now, I head to the doc within a day or two of developing a cough. Even if the doctor thinks it is a virus (that will not respond to antibiotics), she can give me instructions such as, "call me back if it is not better in 4 days," which may indicate that a bacterial infection has developed. A doc can also prescribe something to keep your cough under control – the over-the-counter cough remedies do nothing for me, I need the stuff that requires a prescription.

So, my bottom line here is to take all of the precautions to stay healthy during the "cough season" (avoid sick people, wash your hands, get your flu shot, get enough rest), as well as respond quickly to first symptoms of illness by seeing a doctor. What about you? What has your experience been and what do you do to prevent coughing or make it better once it starts? Let us know in the comments section.

Monday, December 19, 2011

Your own best advocate

Jennifer Mason

Recently I was hospitalized for what turned out to be an MS exacerbation compounded by pneumonia. It all started when I took a sip of coffee and choked on it, dropping the cup. I knew something was wrong and was thankful I had done a lot of research in the past.

My high fever and inability to find the words I was looking to speak sent me to the Emergency Room after another call to my doctor. I was very sick.

I have been keeping a log for many years, which has helped me to realize when things in my life are not ok. It helps me when I go to the doctor’s for an appointment and allows me to keep track of how my meds are affecting me as well.

Here is what I keep track of daily:

  • How am I feeling when I wake up? Am I still tired or refreshed? 
  • How are my motor skills? Do my arms and legs move evenly? 
  • Am I in pain? Where and what level is my pain on a 1-10 scale? 
    • Is this new pain or continuous? Can I stretch it away or do I need to take medication? 
    • What kind of exercise did I do today? Yoga, walk, weights, or was I unable to exercise?

  • Am I happy or sad today? What are my thoughts about? 
  • Did I interact with family and friends or did I find ways to avoid them? 
  • Did I have any new symptoms today?

  • Did I remember to take my medication today and was it on time?
  • Did I have any unusual side effects?

What did I do to make myself and others around me smile today?

Four things I am grateful for today.

During this last hospital stay, the log helped me explain all the changes that had happened to me in the past few days, including when they started. I always take my log with me and update it with new medications that are prescribed. I also have an area where I can write down the questions that I have for my doctors.

We are our own best advocates when we are in an emergency and it is so important to have all your information at hand. How many times are we asked the same questions at the Emergency Room or doctor’s office? 

It is important to go to your visits with as much information as you can provide your physician (For more tips, click here.) You may even find it helpful to keep a card in your wallet with all your medications and emergency contact information on it. Are you prepared?

Thursday, December 15, 2011

Why are parties hard for some people with MS?

Writer, ms.about.com

Parties, holiday or otherwise, take many different forms, such as: 

  • children’s parties (think 20 six-year-olds, wild with excitement about opening presents and fueled by sugar, sugar, sugar)
  • an office party on a Friday evening (think 30 adults, happy to be done with the workweek, getting a little loud and maybe tipsy as they discuss interoffice gossip)
  • a family celebration (think about all of the emotional baggage that comes with this particular mix of people, not to mention your role in preparing the meal and other tasks)

Any of these scenarios can be draining for anyone. However, people with MS have specific symptoms related to the disease that can make parties like this particularly demanding — emotionally, mentally and physically.

Many people with MS have cognitive dysfunction. Most people associate this with things like not being able to remember something they just heard, or putting something, such as the house keys, down and being unable to find them again five minutes later.

However, cognitive issues can also make it difficult to keep up with a conversation, especially if lots of people are talking at the same time. We may have a hard time finding just the right words to communicate a thought — often, by the time we figure out how to express ourselves, the conversation has moved on to a new topic.

Fatigue can also be a big impediment to being the life of the party. Many of us barely have the energy reserves to make it through a normal day. Holiday time, with the extra stuff that we have to do, can really wipe us out. A holiday party can require more energy than we have.

Speech problems are another type of MS symptom. Dysarthria is a speech disorder in which the pronunciation is unclear, but the meaning of what is said is normal. It can cause people to speak in slow or strange rhythms. It can also make people with MS speak more softly than they would like or slur their words. This makes it hard to participate in conversations at parties, especially if there is loud music or lots of background noise.

These are just some of the challenges that people with MS bring with them to parties. Let's not forget other MS symptoms that can impact many of us, such as urinary incontinence, mobility and balance issues, various pain symptoms — all of which can make it difficult to relax and enjoy a party.

However, this doesn't mean that we should sit at home while others are having fun. I have a few suggestions for how to enjoy yourself at a party, particularly during this holiday season:
  • Be picky. If you don't really, really want to go to a party, don't go. 
  • Plan ahead. Rest up before the party, so that you build some energy reserves to carry you through.
  • Strategize your socializing. Have a two-sentence answer prepared for the "how are you?" question, so that you don’t find yourself stumbling around looking for an appropriate response. 
  • Have one-on-one conversations. Trying to participate in a large group discussion can be hard, especially if the topics are moving quickly. Find an interesting person and have a nice chat, preferably in a quiet place.
  • Don't be afraid to leave early. Listen to your body, and do what it says in terms of getting out of there and into bed.
  • Limit the booze. Alcohol can make fatigue and other issues worse. A drink or two is fine, but don't try to keep up with "Party Marty" from the office next to yours.

My goal here is not to be a Scrooge, but to remind all of you that we can still enjoy the holidays. Doing some things on our terms can reduce stress and fatigue and keep the season merry.

Happy Holidays, my friends.

Monday, December 12, 2011

From the Frontlines: What’s New in MS Research for 2012

Chief Research Officer, National MS Society

I’m having a hard time believing it’s December already! This has been a very busy year, but it’s not over yet.  Today is day one of a 2-day, international summit we’ve convened to explore whether it’s possible to PREVENT MS using vitamin D. This is just one big idea in a year that has seen progress in every aspect of the search to STOP progression, RESTORE function and END MS forever.

It’s fitting in December to think back over the year and anticipate the next. I’m very pleased that tomorrow evening, December 13th, I get to do just that. I’m going to sit down with four very savvy experts and talk about progress that’s occurred this year in MS research. Two of them will have just come from the vitamin D summit.

Sound intriguing? You’re welcome to join us for this LIVE WEBCAST–go here for details. Our panelists bring expertise in a wide range of topics, including MS therapies, the role of vitamin D and the immune system in MS, the promise of cell therapy, CCSVI and prospects for repairing the nervous system. We’ll also hear their predictions for MS breakthroughs we’ll see in 2012.

Did you know you can post real-time or advance questions for the panelists?

What a year it’s been!  If you want to read more, check out this summary of 2011 progress on our website. And I look forward to fielding your questions during tomorrow’s webcast!

Thursday, December 8, 2011

A multiple sclerosis wish list

Writer, ms.about.com

I’m pretty sure that if every person living with multiple sclerosis made a list of their wishes, all of the lists would have one item in common: we would wish our MS away. I sure would. I’d like my MS to go and to take all of the symptoms, the injections, and the nervousness about the future with it.

What do you think the doctors and the researchers who focus on MS would wish for? To me, this is a pretty big question, as these people are our partners in the MS fight. I would like to think that their wishes around MS would pretty well map onto ours.

The editors at a new journal, Multiple Sclerosis and Related Disorders (January 2012), came up with five goals on a “multiple sclerosis wish list.” I’ve paraphrased what they would like to see happening in the field of MS:

Figure out what causes MS
This one is crucial to being really successful at anything else. If we know what exactly is causing MS, we have a much better shot at learning how to prevent it and how to treat it.

Get a specific diagnostic test for MS
 We need a biomarker that can tell docs with certainty whether or not a person has MS. A biomarker is something in our bodies—a gene, a hormone, an antibody—that can be measured to give information about health status and specific diseases. Simple examples include such things as: high blood glucose levels that can indicate that a person has diabetes, or a positive antibody test to hepatitis C, which means that person has been infected with that virus.

Right now, we do not have a test like this for MS. Many of us had symptoms for weeks, months or years before we received an MS diagnosis. (In my case, docs tell me that I probably had MS for 15 to 20 years before I was diagnosed, although I had seen several specialists for what I now know were MS symptoms.) Other people live in “MS limbo,” being told that they “probably” have MS, “might” have MS, or will likely develop it in the future. We need a yes/no type of test for MS.

Find effective treatment for chronic MS
 This means that, while we have drugs that can suppress progression of disease and prevent relapses in people with MS, we do not yet have anything to rebuild the damage that has been done and allow us to regain some of what is lost. Really, the current drugs are not so much treatment, which I associate with getting better, as they are attempts at "damage prevention." We need something that will repair what MS has done to us.

Prevent MS
While this sounds lofty and out-of-reach at this time, there are actually some possibilities. Vitamin D supplementation and vaccination against Epstein-Barr (EBV) infection are two very tangible (and possibly feasible) measures that could be tried in preventing some cases of MS. The difficult part would be measuring their impact on MS incidence and prevalence. It is one thing to launch a polio vaccination campaign and see the immediate effects of preventing thousands of cases of childhood paralysis. 

It is altogether another matter to show that vitamin D supplementation or EBV vaccines have any impact whatsoever on a disease that is fairly rare (1 in 1000) and which may develop after decades of vitamin D deficiency or exposure to EBV. It’s a noble thought, but a rough sell to public health officials. Still, they are avenues to pursue.

Improve and expand direct patient care
This one is easy—we need more MS-specific clinics that offer comprehensive care. MS is a complex disease and we need the docs who understand it working together where they are easy for us to find.

I like that list. It makes me happy to think that this is what the MS docs and researchers might be thinking about. What are your thoughts? What would you like to see added to this list? Give us your thoughts in the comments section.

Tuesday, December 6, 2011

Are you kidding me?

Susan Skoney

As a good friend of mine says, “Are you kidding me?” I had this response to yet another obstacle in an allegedly accessible building—the drug store. There are handicapped parking spaces and curb cuts outside of the store. But the doors are 1960s originals—heavy, manual, double doors that make it virtually impossible for anyone in a wheelchair to enter.

My frustration does not stop there. The MS clinic in the hospital where I am a patient has no automatic doors. One must rely on the kindness of strangers to let them in. This, of course, is the same hospital where the bathrooms in the rehab unit are inaccessible by wheelchair. Are you kidding me?

Then there is the door at the brand-new neurological center where one of my providers is located. The door is not automatic and so heavy that even those without issues have a hard time opening it. Are you kidding me?

It seems incredible that some of the biggest offenders to accessibility are healthcare providers. And it’s not just doors, it’s tables. Wouldn’t you think that a doctor’s office would have at least one examination table in their office that would be high enough for people with profound mobility issues to manage? There are those of us who can’t just “hop up”!

Last winter, I had to obtain an ultrasound for a suspected blood clot in my leg. I went to the imaging center, where they felt they couldn’t safely get all 115 pounds of me on the table, even with the help of my aide and their techs .The table was just too high.

I was then sent to their other location with the promise that an adjustable table would be available. It was. But it was located in a room the size of a broom closet. Equipment had to be removed so my wheelchair could get through the door. When I used my chair to start the transfer, it knocked over other equipment, half of me went under the table, and the tech and I both yelled, “Stop!” After all the hysteria subsided, I had the test. No clot.

Dealing with all the problems MS throws our way, I think the medical community could be more attentive to accessibility issues. No kidding, doors and tables would be a great place to start.

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, December 1, 2011

A roll and a stroll

Douglas Winslow Cooper

Now 67, Tina Su Cooper, my wife, has been quadriplegic due to MS for almost eight years. Married for 27 years, we have been in love for 48. (Read our story in the new issue of Momentum.)

These are big numbers, but life is made of seconds and minutes, as well as years and decades. Today, 20 minutes enhanced our happiness.

A rare late-October snowstorm here in the Northeast has been followed by a week of mild sunny weather. So Tina asked me to take her outside, for what we call “a roll and a stroll.” I’ll walk and she’ll roll in her “chariot.”

We get the wheelchair and Tina outside the house by making some tight turns while inside, followed by backing down the ramp that replaced our front steps. The path from our house to our lakeside community’s paved private road is bumpy (“Wheee!”). We go in reverse to make it less jarring. Big wheels in the lead are better for overcoming obstacles than are little wheels.

We roll and stroll up a gentle slope to the edge of the ninth hole of the community golf course. The sun is already low, as this is a fall afternoon. Some of the trees are bare, but others are dressed in reds and golds, vivid against a field of green. Tina says it is beautiful, and I agree. It is like living in a park. Our spirits are high. We return.

When we return, our nurse checks Tina’s blood oxygen levels. Tina’s is excellent, 97% saturation. I score a 96%, our nurse a 99%. Below 90% would be worrisome. The good news is that Tina’s breathing has been very effective even without bringing supplemental oxygen along on our walk. It confirms her apparent robust health.

We reverse the out-of-bed process and get her back into bed. Kisses ensue. She and I are happy. The roll and stroll was 20 precious minutes in a lifetime of them together.

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, and 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 through Amazon or his website.