Friday, March 30, 2012

Time of Day, Fatigue and Walking Ability

Writer, ms.about.com

I don't know about you, but when I am feeling fatigued, things are hard. In fact, the more fatigued I feel, the harder everything is – and I mean everything. I find it harder to think, to talk and certainly to do anything physical.

Therefore, I found it interesting that a European study found no correlation between fatigue levels and how people with MS scored on a walking test.

It is pretty well reported by people with MS that fatigue levels worsen as the time of day progresses. It is assumed by many that fatigue levels affect physical functioning, such as mobility. Therefore, it could be deduced that a person with MS-related mobility problems would do worse on a walking test in the late afternoon or evening than they would in the morning.

In this multicenter test among 8 European MS centers in 5 countries, 102 people participated. The group was split into those with "mild" ambulatory dysfunction (EDSS 1.5-4.0) and "moderate" ambulatory dysfunction (EDSS 4.5-6.5). They were asked about fatigue levels at 3 different points in the day (morning, noon and late afternoon). They also were given two walking tests at the same 3 times of day – the 6-Minute Walk Test and the 10-meter walk test, performed at their usual and their fastest speed.

Here's what happened:
  • Although the people in the mild and moderate ambulatory dysfunction group clearly had different degrees of mobility problems, fatigue levels in both groups were the same.
  •  In both groups, reported fatigue was worse later in the day than it was in the morning.
  •  However, time of day did not affect performance on the walking tests in either group.

This is pretty important stuff to understand. For one thing, if researchers are conducting a clinical trial to see if a certain drug or intervention helps with either fatigue or walking ability, it is important to know whether time of day when these things are being measured or reported matters. Looks like it is not that crucial to measure walking ability at the same time of day. However, to measure fatigue, one would want to make sure to ask about many parts of the day and overall ability to function.

On a personal level, this data makes me wonder, then, if things just seem harder when I am fatigued. I am sure that I am much less likely to want to do anything as the day wears on – maybe, in my case, this is a cycle of being tired, thinking things are hard, avoiding doing them and feeling more tired from not accomplishing things. Perhaps I'll try to fight the fatigue when I can and see what I can really do, rather than assuming it's too hard. It may be worth a try.

However, it should be noted that a research situation is much different than real life. Although participants' walking speed seemed unaffected by their fatigue in the study setting, this does not necessarily translate to meaning that fatigue is not a factor in endurance or simple physical ability to get things done. What I am going to try is pushing through the fatigue on a couple of small things and seeing how that works out.  

What do you think? Do you feel worse as the day wears on? Do you have more problems walking later in the day? What about other things? Let us hear from you in the comments section.

Tuesday, March 27, 2012

Cuddling

Douglas Winslow Cooper

My wife, Tina, and I no longer sleep in the same bed together overnight, as we had been pleased to do for most of the first two decades of our marriage. We stopped in 2004 when she came home from the Critical Care Unit, quadriplegic and ventilator-dependent due to her multiple sclerosis. 

She shares her bed with an alternating-pressure air mattress, her ventilator tubing, and a Teddy bear and is awakened once or twice each night for medications and ministrations. 

Her bed is a hospital bed, and I slept there uncomfortably one year when we had no overnight nursing, but it is narrow and her care and my sometime insomnia have made sharing the bed overnight impractical. It is a loss we both felt, both commented on when it began, both have almost gotten used to now.

Last evening, for a half an hour, we cuddled there. Turned on her right side and supported in that position, Tina could see me and speak to me easily as I lay beside her. We chatted a bit and reassured each other, as we often do. We listened to romantic music given to us for Valentine’s Day, the forty-ninth anniversary of our falling in love. She fell asleep briefly, as I held her hand.

She awoke. I got up. We agreed to do it all over again tonight, if we can.

Life and love are precious. Carpe diem! Seize the day! Seize the evenings, too, while you still have them.



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.

Friday, March 23, 2012

Multiple Sclerosis Bladder Issues

The Unspeakable Bits; From A Life With MS

Multiple sclerosis bladder “issues” can range from discomfort and annoyance to downright life threatening and they’re not something we’d fit into the “polite conversation” category. These issues, therefore, fall into the “Unspeakable Bits.”

When I wrote “downright life threatening,” I was not being dramatic.  Medical conditions that can result from our unwillingness to speak of and deal with our bladder concerns can cause sepsis, shock, permanent kidney damage and even death. We may giggle or ignore the subject of pee, but we do so at great risk.

If we were to really think about it, a lot must go perfectly right in order for our excretory system to work properly. Most people don’t think about it much after we’ve been potty trained—or maybe in high school biology class—but it’s true and for those of us living with MS it’s worth thinking about.

Symptoms of Bladder Dysfunction

The two main (and opposite) bladder symptoms to show up due to multiple sclerosis can be summed up as:

Overactivity (urgency, frequency, incontinence) and

Underactivity (hesitation, retention, inability to empty)

In both cases it is usually the pathways that connect the brain to the bladder’s sphincter muscle (which opens and closes on command when healthy) that are affected by MS. The nerves that control our bladder (as well as our bowels) are very long, longer than those which control our legs, in fact. It’s no wonder, with so much area to be attacked by MS, that over 80% of people living with this disease report some sort of issue with their bladder

Overactivity of the system can and is usually recognized. If you’re going more often, feeling like everything is normal and then Must Go NOW, or are waking several times in the night to go, then you’re likely to seek help (or at least you are aware that it is an issue).

Odd as it may seem, the next step in overactivity —incontinence—is so embarrassing that some people may be more inclined to see their medical team more quickly with minor symptoms of overactive/spastic bladder then for incontinence. 

We are funny about these things… 

Simply going to the market and picking up Poise Pads or Depends and not telling your doctors about “a little bit of leaking” is equivalent to self-medicating recurring migraine headaches without reporting the symptom. Tell your doctor!
When our symptoms are from underactivity, that’s when many people think everything is fine—or don’t think of it at all.

We can’t know if we’re not emptying fully without having that checked (though frequent urges with small return can be a symptom of underactivity. I know, weird! Going more often can be a symptom of not going enough to empty fully). Not emptying can cause recurrent urinary tract infections (UTIs) and repeated UTIs can lead to more, and permanent damage.

As if these are not enough with which to cope, reduced or total lack of physical sensation in the area due to MS can cause us to not feel that something is going wrong even if it gets serious. Infections can cause dehydration; they can travel up the system to our kidneys and cause fevers that can raise all kinds of havoc with multiple sclerosis.

Awareness & Treatment

Many of us think only (or at least, think first) about pharmaceutical treatments for our bladder issues. As many of our symptoms are shared by an aging general population, we see television and print adverts for drugs that might help. There are other treatments that an urologist familiar with MS might offer.

Exercise of the muscles (men, do your Kegels right along with the ladies!) can help, as can better management of fluid intake and other dietary modifications. Do NOT simply drink less water so you have to pee less frequently. 

Unsupervised modification in this manner can lead to dehydration and that raises its own set of risks.

One treatment option which scares the heck out of many people is (intermittent or continual) catheterization. I suspect that most who do not “cath” just cringed, while those who practice catheterization are expressing relief.

I have not spoken with a single person with MS who self-catheterizes who doesn’t wish that he/she had started earlier for the benefits they have found in the practice. I suppose it’s not unlike putting off using a cane for so long and then realizing that you can walk a distance—with help. “Intermittent self-cathing has cut my tether to the john,” said one man I know about the task.

Now, I’m sure that any one of us would rather not have to look at this as an option.  It’s hard to look at the benefit from the before side of the equation. I’m just saying that the after side isn’t as bad as most of us think.

Hesitancy to begin and interruption while urinating can be signs of reduced control of the bladder.

Time to talk about it!

I am no expert on multiple sclerosis. I am only an expert on living my life with MS. I only have the limited knowledge of my MS bladder issues upon which to draw. I know that the readers of this blog have much more information on living life with MS bladder issues.  I hope that some of you are willing to share!

First we talked about Sex & MS and now the bladder. We might as well round out the “plumbing issues” in next month’s Unspeakable Bits with a blog about MS bowel symptoms.

Wishing you and your family the best of health.

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.


For additional information and resources – including referrals to medical professionals in your area – call an MS Navigator at 1-800-344-4867. The Society’s MS Navigators can also provide you with resources related to bladder dysfunction and MS.

Tuesday, March 20, 2012

Technology to Improve Adherence to Injectible Medications

Writer, ms.about.com

Raise your hands: How many of you forget to give yourself your MS injections occasionally? How many of you have had things come up that prevent you from injecting when you were supposed to? How many of you just can't bring yourselves to do it some days? (You don't have to answer that last one.)

I'll admit that I can answer "yes" to all of the above. I'm pretty sure that I am not alone in this, either.

While not directly related to MS (yet), I was pretty excited to read about a new microchip drug delivery device that just went through its first trial successfully. The device, developed by a company called MicroCHIPS, Inc., was used in a trial to collect data about the pharmokinetics of the osteoporosis drug, teriparatide as it was released from the implant. Under normal circumstances, the drug has to be injected daily. The trial took place over a month in seven post-menopausal women diagnosed with osteoporosis.

Not only was the dosing method found to be just as effective as daily subcutaneous injections, the device was found to be safe with no adverse reaction to the implant. Furthermore, the trial provided proof-of-concept data that indicated that this device could be viable – reliable and durable – for at least a year or more.

The microchip device seems easy enough to deal with – it is implanted and explanted (taken out) using local anesthetic. The people who participated in the study said that they would repeat the implant procedure. The implant procedure lasts less than 30 minutes, and trial participants were "able to walk out of the facility and go home unescorted."

Not only that, the dosing can be adjusted wirelessly and (get this), docs can track dosing schedules and adjust them remotely.

MicroCHIPS plans to file for regulatory approval for its first microchip device in 2014. The company is working on new designs of the device so that it will be able to deliver daily doses for one year or less frequent doses over several years. Although there are still many steps left before FDA approval is granted, the lead author of the study, Robert Farra, (also MicroCHIPS President and Chief Operating Officer), says that the company is intending to develop a "range of products for use in important disease areas such as osteoporosis, cardiovascular disease, multiple sclerosis, cancer, and chronic pain."

Certain components of microchip technology, such as the micro reservoirs that hold the medicine and the first microchip opening mechanism, were developed at the Massachusetts Institute of Technology and licensed to MicroCHIPS.

The whole concept sounds pretty good to me. I'd happily submit to one "procedure" a year than the daily shots that I am supposed to give myself. What about you? Would you grab the chance to forget about injections for a year, but still know that you were getting your medication? Or would you prefer to skip the idea of implanting something into your body and stick with the needles that you are already used to? I'm anxious to know what you think – post your comment below.

Friday, March 16, 2012

One

Marc Stecker

One is the loneliest number, at least according to a song written by Harry Nilsson in 1967 (and made famous by Three Dog Night in 1969). Though social interactions are a basic emotional necessity, for a patient plagued with increasing physical disability along with fatigue and an assortment of other symptoms, sometimes one is just about all you can handle. Chronic disabling illness often brings with it a troublesome companion: isolation, a condition that is often feared, but which has a more benign companion, solitude. The problem of isolation/solitude is a paradoxical one; although in anticipation loneliness is often dreaded, there are times, when caught in the thicket of illness, when a patient just wants to be left alone.

MS is a transformative disease, and the changes it brings can leave the afflicted feeling like some strange new breed, with the memories and inclinations of the old conflicting with the stark physical and emotional realities of the new. The disease progresses at different rates for different people. Some can remain quite active participants in healthy society for years or even decades, while others find themselves considerably disabled and their lives significantly impacted in a relatively short period of time. Whenever it occurs, when the patient is cleaved from the day-to-day existence they once took for granted, a sense of otherness can set in, as what had been a daily routine becomes anything but. Activities and actions that had once been accomplished with hardly a thought slowly become difficult and then impossible, and though the person going through these changes may be surrounded by well-intentioned friends and family who suffer their own emotional distress at the plight of their stricken loved one, the full emotional toll of mounting physical deficits can only be absorbed by one, the patient themselves.

Like the main character in Franz Kafka's novella "Metamorphosis", who wakes up one day to find himself transformed into a huge cockroach, patients experiencing progressing disability find themselves living through alarming change. Though this change doesn't occur overnight, as in Kafka's tale, it certainly can feel as if it comes on suddenly, and the physical transmutations taking place are inevitably accompanied by troublesome psychological companions. Nine years ago I was happily taking my pooch for a long brisk walk on a very cold winter’s day when I suddenly realized I was limping; fast forward to today and it's a treacherous and painful struggle to take 10 steps with cane gripped tightly in hand, and more often than not my sorry ass is planted firmly in the seat of a wheelchair. Nine years may sound like a substantial amount of time, but despite the innumerable trials and travails of the intervening years, it feels as if I took that long walk only yesterday. And though I've tried to handle my situation with as much grace, courage, and humor as I can muster, deep inside I cannot deny there exists a well contained but always present silent scream (click here to hear my silent scream).

Of course, it's of the utmost importance to stay connected with the world at large, regardless of your physical state. There is substantial danger in allowing the psychological tentacles of the disease to have their way, grabbing and dragging the emotional focus of the patient deep inside themselves. Concentrating on every new weakness, numbness, or deficit can cast a crippling spell, a self-perpetuating cauldron of compulsive anguish, whose only antidote is social interaction. The comforting give-and-take of a friendly conversation or the diversion of an outing whose sole purpose may simply be to lay eyes on other human beings can truly be a much needed balm for the soul, a reminder that though the body may be broken the spirit remains intact, and that the world is still filled with wonders big and small, even if they must sometimes be dug out from under a huge pile of crap.

Yes, human interaction is key, but the problem is that being sick takes up so much damn time. As levels of disability increase, so too does the time it takes to do almost everything. Whereas an impromptu get together with a friend for lunch may have once made for a happy couple of hours, for the disabled there is no such thing as impromptu. The simple act of getting dressed, which once was about as problematic as breathing, now presents hurdles and obstacles that require a preconceived tactical plan, especially in the colder months when such hobgoblins as sweaters, socks, coats, gloves, and scarves come into play. Depending on the patient, showering without assistance can be a daredevil high wire act or an absolute impossibility. Even if there has been advanced planning, after going through the effort of readying oneself for a guest appearance in the outside world, that day's allotment of energy may have just about been exhausted. The fatigue patients experience is not any kind of normal weariness, but an at times absolutely complete and debilitating exhaustion of mental and physical energy, which no amount of willpower can overcome. Many times, the only place I want to go after getting dressed is right back to bed.

Even the prospect of talking on the telephone can sometimes be daunting, especially to folks with whom you haven't communicated in a while. After "Hello" comes the inevitable "How are you?", a loaded question if ever there were one. It feels incredibly disingenuous to answer with a token "Oh, I'm okay", or "I'm hanging in there", but for sure the person on the other end of the line doesn't want or need to know the full dossier of your afflictions. Discussing the details of a well friends active life can sharpen focus on the deficiencies of your own, and despite honest attempts at sympathy, hearing of another's problems at times makes me want to shout "Hey, want to trade?" Shooting the breeze, sharing some laughs, and talking about anything other than illness and medicine can be incredibly uplifting, but as much joy as talking to old friends can bring, at times the prospect is overwhelming, the effort required tapping deep into the paucity of energy that is a constant companion. I must admit I have an embarrassing number of calls from dear friends for whom I have deep fondness that I've left unreturned for far too long.

Like many patients, I'm blessed with a social situation (in my case, a wonderful wife and caring family and friends) that keeps my periods of solitude, which I've come to quite appreciate, from morphing into isolation. Despite mounting physical difficulties, with effort I'm still able to get out and about on my own, to pursue my photography or just to break a bout of cabin fever. Still, as the progression of my disease continues, such outings require increasing effort, and I find I value time bereft of social responsibilities quite highly, hours spent meeting nobody's expectations but my own. I do know of many patients, though, who do suffer from isolation, whose lives are plagued not only by physical illness but by soul wracking loneliness, and to them my heart goes out. The Internet, through chat rooms and forums, offers opportunity to connect with others, if only in a virtual sense, but I know from experience that virtual friendships can indeed develop and deepen into surprisingly multifaceted relationships.

One is the loneliest number, but one can also be a source of solace as well. Persevering through chronic illness is a complicated affair, and navigating its hills and valleys, even with the solace of companions, is in many ways a solitary matter. Though others may help buffer the blows, ultimately each patient's experience is unique, and the mechanisms for coping theirs alone. Solitude and isolation are two sides of the same coin, a currency that can be prized or shunned, and in the convoluted and confused world of chronic illness, the line between the two can be fragile and blurred. Despite the difficulties imposed by illness, our connections to others are in many ways what keep us human. If isolation has too often become your domain, please make efforts to reach out; if you recognize isolation in others, please make efforts to reach in. Although the human state dictates that ultimately we all are alone, so too we are all in this together.

Give What You Know at MSconnection.org


This blog post has been re-posted on the National MS Society Blog with the author's permission. To view the original post, please click here.  

Tuesday, March 13, 2012

Connecting

Douglas Winslow Cooper

My wife Tina and I have wondered, from time to time, why we do not have more friends. Both of us were popular in school, but now the number of our acquaintances is small, and friends are fewer still. Some of this is due to Tina’s multiple sclerosis, which has left her bedridden for 18 years, quadriplegic and ventilator-dependent for the past eight.

Getting out and about is difficult. Serious travel is almost impossible, limiting the distance we can go to meet friends and family. They can visit us, but all are aware of Tina’s special needs and are careful, perhaps unnecessarily, not to interfere with our daily medical routine.

When we do enter the “outside world,” some people react warmly and considerately, while others are clearly uncomfortable, assuming they have little in common with us or fearing they might offend, even with well-meant words. It’s easier for them to look away or remain silent. Sometimes, I can make a joke that helps them feel more at ease, “putting the humor back into quadriplegia.” And once we get talking, these strangers sometimes tell us of friends or relatives with MS or similar conditions. They tend to remain strangers, though, and I cannot think of one whom we met casually who then followed up to get to know us better. Fortunately, neither Tina nor I mind such loss greatly.

Not all of this disconnection is due to MS. Decades ago, Vance Packard described America as A Nation of Strangers, who have little time for, and little in common with, each other. Today, loneliness is said to be endemic among today’s elderly. “Old age is not for sissies.”

Tina and I do connect with our nurses. We did connect with people in our MS support group, a group that became too far apart and, in fact, is no longer functioning. Even in such groups, the specter of being paraplegic or quadriplegic can make the newly diagnosed ill at ease with those whose MS has progressed.

Concern for Tina’s health may have made our immediate family members more connected with us than they would have been otherwise. Hard to say.

Tina and I have been in love for nearly a half century, married now for over 27 years. When I gave a talk recently about my book, Ting and I: A Memoir of Love, Courage and Devotion, an attendee asked me afterward for the secrets of a happy marriage under such conditions. Briefly at a loss for words, I realized what had worked for us: “Marry someone who deserves your devotion … and don’t fuss over little things.” MS puts much else into perspective.

Give What You Know at MSconnection.org


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.