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MS or Not; We All Deserve to be Treated with Respect

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The Unspeakable Bits; From A Life With MS
 
 
I was riding the city bus the other day and we took a route I don’t normally commute along. At the side of the road I saw a billboard for a statewide hotline to report the abuse or neglect of elderly people. That, along with last month’s Unspeakable Bits blog about divorce and MS got me thinking about the abuse and neglect of people living with disabilities – particularly people living with multiple sclerosis. 
 
The stories of people living through unkind treatment first make me sad and then they make me angry. I feel like it’s time to address this unspeakable part of living with MS.
 
First, we must realize that we are just as good as everyone else in the world and we deserve to be treated with common courtesy and respect just like any living soul. If we require extra help or assistance to meet our everyday needs, it is not asking too much to request help (and to expect that it be given without a side-order of guilt).
 
We needn’t stand for people talking about us like we’re not in the room. We shouldn’t be made to feel a burden and we are most assuredly not to be the targets of some emotional archer’s misguided slings and inappropriate arrows.
 
When I read of a person being told that they are “lucky I stay with you otherwise you’d have no health insurance,” or some other rotten comment, I want to vomit. When I read that some member of someone’s family has called them “lazy” or a “fake,” I shake my head and wonder what’s wrong with people. And when someone tells me of a person with MS being “kept” like an unwanted pet in some room, I simply want to cry.
 
It breaks my heart when I hear people living with MS not feeling worthy of better treatment. I don’t pretend to know the details and intricacies of the emotional tapestry that makes up a person’s relationship. But, for those who suspect that they have become entangled in an unhealthy relationship, and that they shouldn’t be treated or spoken to the way they are, there are resourcesand help out there. Call 1-800-344-4867 to talk to an MS Navigator about resources and assistance in your area: 
 


Would we stand for someone talking ill of a deaf person in their presence because he can’t hear the comment? Do we sit by if a child is beaten in front of us? Don’t we call 911 if we see a dog locked in a car on a sweltering day? How is it that we allow this kind of treatment of ourselves?

We are not toys to be made fun of nor are we emotional punching bags on which frustrations can be taken out. We are thinking, feeling, sentient beings who deserve love and respect and understanding and we should not accept less. MS takes enough from all of us. We needn’t give over our dignity to someone who thinks they are put upon by our disease.
 
This is not an easy subject to talk about but one I believe must be addressed. If you feel strongly – as obviously do I – please leave a comment. We can help one another in these pages as much as the resources listed can.
 
Wishing you and your family the best of health.
 
Cheers 

Trevis 

Multiple Sclerosis and Divorce

Blog Summary

The Unspeakable Bits; From A Life With MSHaving multiple sclerosis does not preclude one from susceptibility to other ailments. In fact, it could be said that – due to some of the many symptoms and complications of the disease – people with MS should be a bit more vigilant in the face of “other” health issues.  So too can it be said of MS complications in a marriage.There is no need for me to list the reasons that marriages fail. We have all been near enough to friends, family or our own situations to know that these things happen. What is worth noting is the ugly fact that many marriages in the USA end in divorce. The actual rates vary by factors of age, income, length of marriage, etc.  While some studies show the divorce rate for couples with MS (and chronic illness in general) slightly elevated, many others show rates surprisingly near the same as (if not a little lower than) the general population.  Did you know that? I didn’t. I assumed that our rates would be significantly higher.  That said, it may be that a divorce hits a person living with MS a little bit harder – not that anyone goes unscathed by the emotional impact of a “disillusion” (Ha! Who came up with that legal term for divorce? Talk about a truism, “disillusion”).  According to Dr. Rosalind Kalb, in her book, Multiple Sclerosis; A Guide for Families, the divorce rate may be a bit lower for people with MS than the general population because of a few reasons:1. A person with MS may stay in an unhappy relationship for fear of being alone with the illness.2. “Well” partners may stay in the marriage through a sense of commitment or obligation.3. Couples may stay married in order to maintain insurance coverage for the person with MS.  A study I read in Discover magazine about divorce and illness had a rather shocking figure as to gender distribution. In research done by Dr. Marc Chamberlain, it appears that the gender of the partner with the illness (he studied patients with either MS or cancer) makes a massive difference in the rates of divorce.  The divorce rate for marriages in which the man had MS was as low as 3%, while nearly 21% of couples in which the woman had MS ended in divorce.  It seems some men may not have the same “sense of duty” women have…  One factor that hasn’t really been studied is how “happy” the marriages that ended were beforediagnosis. This seems like a difficult variable to study because, by the time a relationship is in that place where divorce is being considered, “happy” seems like a distant memory.  Child custody can be a major sticking point for divorce in general.  Throw MS into the mix and things can get ugly in a hurry.  The Society recommends Through the Looking Glassfor those families where disabilities play a role.  They can offer legal programs that assist parents, advocates and professionals in the legal and social services system when they are involved in custody litigation involving the child of a parent with a disability.  I’ve also been reading unfortunate comments on my Everyday Health blog and the Life With MS Facebook pageabout marriages and partnerships with MS that support Dr. Kalb’s first point and that really bothers me.  I see a growing number of people admitting that they are not being treated well by their husbands (and to a lesser extent, by their wives).  Some partners who stick around after diagnosis seem to feel it’s within their rights to belittle, neglect and even abuse their partners who have MS.  Equally as concerning is when I read about someone sticking around because a bad marriage with MS is better than being alone.  Just because you have this disease, it does not make you a lesser person or partner. We should neverstand for neglectful or abusive behaviors--from anyone. To that; we’ll chat about abuse and neglect in September’s Unspeakable Bits blog.  But before we go “there,” let’s have a discussion about MS and divorce.  Wishing you and your family the best of health.  Cheers  Trevis 

Multiple Sclerosis is a Damned Expensive Disease!

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The Unspeakable Bits; From A Life With MS  When people in the general public read that multiple sclerosis is a “prime-of-life” disease, I really don’t think they understand the totality of what is being stated. It may even take those of us diagnosed a bit of time to realize, but when MS hits in the “prime of life,” it can also hit our prime earning years.That’s just one of the ways that MS can hit us in the pocket.Even if we are able to continue working, many of us have had to reduce workload, hours and stress, and excuse ourselves for medical appointments – all hindrances to those brass rings of promotion and pay increase. As a co-leader of my Men With MS self-help group puts it, “We go from ‘thrive’ to ‘survive’ mode.” These changes to our pay and potential pay can come back to haunt us a second, third and even fourth time when it comes to long-term disability payments, Social Security Disability and even reduced Social Security retirement checks when we reach retirement age.Reducing the money that comes in isn’t the only way in which the disease tolls our life. Increased insurance premiums, larger and larger out-of-pocket medical expenses and unbridled rise in the price of MS meds can make us feel that MS has accessed our PIN and hacked into our bank accounts.For those who do have to leave work and apply for various disability programs, the wait can be long and expensive. The current two-year waiting period for Medicarefor those applying for Social Security Disability can drain a savings account tout de suite. The expense of a disability lawyer to help appeal rejections – while regulated, and often worth the cost – can add expense at the lowest point in our financial lives. Modifications to our homes and purchase of quality assistive devices are rarely covered to the extent many of us need. One studypublished last year indicated that although the interferons are clearly beneficial, the benefits do not come cheaply either for insurers or for patients who have to pay their share in terms of co-payments or co-insurance. Another recent studyhas called into question the ability of the interferons to delay progression to disability, causing some to question their costs and benefits. (Editor’s note: Since other studies have contradicted these findings, additional research is needed to more effectively gauge the long-term impact of the interferon therapies, and to determine the most appropriate therapy for each individual.) Then there are the costs that we might not think of. When gas prices go up, those of us forced to use larger and modified vehicles in order to accommodate scooters and power chairs are hit harder, for example. I’m sure that many of you could jump in (and I hope you will) to relate some of your surprises as to where MS hit your personal economy.   It is important to realize – hopefully beforethings reach their toughest – that help can be found in many forms. The National MS Society’s financial assistance program offers guidance, support and resources to help contain the financial impact of MS. To speak with an MS Navigator®, who can review available resources and provide an application, call 1-800-344-4867. I would add money to the well-known list of polite unspeakables of politics and religion. Today, however, I’d like to open the conversation about the financial burden that MS can be to a person and family. We didn’t name this blog “The Unspeakable Bits” for nothing. Only by talking about it can issues be identified and addressed. And you can take that to the bank.Wishing you and your family the best of health.CheersTrevis  

Depression and MS —The Perpetual Motion Machine

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The Unspeakable Bits; From A Life With MS  Physicists have forever searched for a device which, once started, would run forever unless acted upon by an external force. I am here to tell you today that multiple sclerosis can drive depression, which falls back upon itself in a loop of perpetual motion that would have made Archimedes proud.There are a number of resources on the Society’s websitethat describe depressionin very good clinical language. Depression is a “clinical” issue—but let’s face it—unless you’ve been inside that cloud, you have no idea what it’s like in there.  Manifestations of depression can range in depth from profound sadness and disinterest to soul-crushing terror and pain.  Part of the current understanding of depression is that it can be caused by chemical imbalances in the brain. The delicate equilibrium of compounds with names like serotonin, endorphins, dopamine, norepinephrine and others have long been equated with keeping our emotions in a socially accepted “sweet spot.” MS does crazy things to our central nervous system and, therefore, our brain’s chemistry.  Because depression is both a symptom of MS and a reaction to the stresses of life with MS, it is significantly more common in MS than in the general population or other, equally disabling chronic illnesses.  Until relatively recent history, depression was socially stigmatized. One can’t help but wonder if the myriad of television adverts for antidepressants claiming happy romps in a field full of happy children aren’t now minimizing the condition with their promised ease of treatment.   “Take our pill,” the happy women of these commercials try to tell us.   “Everything will be just like it was before … Better even!”  Don’t get me wrong; medication can indeed be a valuable tool for reversing depression and balancing wonky brain chemistry. But things will never be how they were before. I’m not pitying myself or our lot—just stating the fact.  Personal bouts of depression have slashed through my post diagnosis life. Many times I did not see them for what they were. Oftentimes I was too proud to admit that the cloud (or “funk” or “sadness” or “apathy” or the stack of feelings that I could not label) were, in fact, symptoms of depression.  More than a few romantic endeavors flattened under the weight of my inability to recognize or cope. Not that my partners didn’t try…  I’ve often said that MS doesn’t steal away our futures; rather, it robs us of our intendedfutures. In my case it stripped me of a sense of purpose. My personal journey through that difficult period in my life after MS brought a new understanding of what purpose might be found within me, and not one imposed upon me from without.  Still, even today, a dark and seamy shadow can creep up from behind – most often in those moments just before sleep when I am totally alone with myself – and whisper (in the words of DebW, in a comment on my Life With MS blog) untruths into my ears.  MS can cause depression. Depression’s symptoms can make coping with symptoms of MS seem worse than they are. Our disease has enough on its team. We shouldn’t afford it another player if we can help it.  And we can help it.  For me that help came in the form of a most remarkable clinical rehabilitation psychologist. For others I know, therapy coupled with medications helped. Dietary and physical activity, and other lifestyle modifications have worked for others in my life. What will work for you is as individual as you, as individual as your MS.  The important thing to remember is that help can only be offered if it is asked for and we can only ask if we recognize depression ourselves, or accept the possibility if someone close brings it up.  Be sure to discuss any significant mood changes with your healthcare provider (getting help for mood changes is not a sign of weakness, it’s an act of strength); connect with an MS Navigator for help finding a mental health professional with experience in MS; check out the many resources on the Society's website,   Wishing you and your family the best of health.  Cheers  Trevis  

New Study about MS and Marijuana Stirs the “Pot”

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The Unspeakable Bits; From A Life With MS  A small – but loud – studyreleased last week about the use of smoked cannabis (marijuana) for symptoms of multiple sclerosis has sent smoke signals around the MS community. As clinical cannabis (often called “medical marijuana,” or MMJ for short) is not legal in most states – only 16 states have MMJ laws according to the site ProCon.org– and against federal law all together, the topic certainly seems like an “unspeakable bit”….  Note:It is important to point out that even in states where MMJ laws are on the books and purport to protect patients with a number of conditions from harassment and prosecution, a 2005 US Supreme Court ruling negates all of these state laws. No matter where you live, the use of marijuana is a federal offense. Also, the act of smoking marijuana (the method studied in this report) has health risks in and of itself.  The National MS Society’s Facebook pagewas flooded with comments and shares when they posted a linkto their story about the study, prompting me to change course for my intended blog for this month.  That the study was conducted with science behind it, in the form of objective measures of pain and spasticity, rather than subjective reports from the research subjects, and was specific to people living with MS, is what made so many of us sit up and take note. Using the clinically accepted Ashford Scale to grade observed spasticity, a visual analogue scale for pain symptoms, and clinical control subjects who thought they were smoking MMJ but were not, researchers came to the conclusion that MMJ may be able to help with these two common MS symptoms.  As the study only followed 30 subjects, much more work needs to be done on the topic. The Society, in conjunction with the University of California – Davis, is currently recruitingfor a new study that will compare both inhaled (smoked) and tablet forms of MMJ with a placebo.  I said that the study was “loud.” My phone rang a few hours before the study was released, with a local TV station requesting an interview for the evening news, and TV and radio stations around the country offered pieces on the study all day long.  When I blogged about the study on Everyday Health’s Life With MS Blog and mentioned it other places in the MS community, I was assured that it is a topic of much interest for people with MS. Many lamented that they live in states where it is not legal, so they do not try MMJ; others spoke of the benefits they have received and some told of the fears they have as they know they are breaking the law in seeking relief.  One aspect of MMJ that must be considered is consistency. Like apples, for example, marijuana is a plant and can vary in its chemical components. Just as some apples are better for baking than for eating raw, some tart and others sweet, or one variety crisp while another is mealy, each variety or “strain” of MMJ offers differing levels of a number of compounds researchers believe may help with some of the symptoms of MS. Where one obtains MMJ, the reliability of the source, the consistency of the strength, the legal issues in play in your area,all affect what actually happens between thinking about and really using MMJ.  Another contentious issue in the use of MMJ is that this study showed an increase in fatigue and cognitive impairment when using the drug. I don’t know about you, but “getting stoned” isn’t what I’m looking for in a symptom-management therapy, and I’ve enough fatigue with which to contend as it is.  As you can see in the interview I linked to above, I use MMJ for a very specific symptom and in very limited quantities and circumstances. My doctor (also interviewed in the piece) has given his go-ahead for me to use MMJ and asks about its effects with each clinical visit. Even though I use sanctioned patient cooperatives to obtain MMJ, I have found a variance in what I have purchased; differing “strengths,” variable effect and peripheral side-effects can and do change often.  There is much more research and plenty more conversations to be had on the topic and it is notan easy or one-sided conversation in store for us. It is, however, a conversation that I find important and I am thankful that the Society has given us this platform to have said exchange of ideas … no matter on which side of the debate we currently stand.  Wishing you and your family the best of health.  Cheers  Trevis

MS Dysfunction of the Bowel

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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, Bladderin 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.CheersTrevis  For additional information and resources – including referrals to medical professional in your area – call an MS Navigator at 1-800-344-4867.  Bowel DysfunctionYou Can…Get Control of Bladder and Bowel IssuesBrochure: Bowel Problems

Multiple Sclerosis Bladder Issues

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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 & MSand 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.  CheersTrevis    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.  

Sex & MS

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The Unspeakable Bits; From A Life With MS  I wrote last monthin our introduction to The Unspeakable Bits, that we were going to speak the ‘unspeakable’ on this blog. Well; erectile dysfunction, vaginal dryness, bladder leakage, sexual positioning, inability to attain orgasm, sex and multiple sclerosis. How’s that for speaking the unspeakable?  Sex is a natural, important and - let’s face it - fun part of human existence. We think about it, we save ourselves for it, we abstain from it, we revel in it and we embroil ourselves in discussions of its “proper” place in our society. Sex lives in a unique place in culture as we struggle with the animal nature of the act and the purely human aspects of its affection. Sex is natural, wholesome and a part of a healthy, adult life.But, like other parts of our “healthy life”, multiple sclerosis can and does take its toll on our sex lives.There is an excellent primeron various forms of “sexual dysfunction” caused by MS and its symptoms.  Those dysfunctions include, but are not limited to:Loss of Libido Reduced sensation (or painful, heightened sensation) Numbness Difficulty achieving/maintaining erection (for men) Vaginal dryness (in women) Difficulty achieving orgasm/ejaculation  Feeling like we’re speaking the unspeakable yet?How about some of the other symptoms of MS that can wreak havoc on the ancillaries to a healthy sex life?“I’m just too tired to________” can be a regular part of the day for people living with MS. “I’m just too tired to make love” isn’t a stretch at all. So, Fatigue can lead to sexual dysfunction.Pain (Yes, doctor. Pain can be a symptom of MS), spasticity, rigidity, vertigo… all of these can keep the flames of passion snuffed. Loss of use of limbs (both legs and arms) can be a significant barrier to sex for both the person living with MS and for our sexual partners (and more on them in a moment).I’m tempted to add something of a “societal symptom” to our list of sexual barriers – and that would be the barriers around speaking openly about sex.  For many people living with MS the idea of trying alternative sexual positions, bringing toys into the bedroom (let alone ordering/purchasing such things!) and discussing our sex lives with our medical teams are paths not easily traversed. Right alongside those societal symptoms would have to be our partners’ reactions to us and our MS.  Time and time again I hear from people whose spouses have gone from lover to care partner to care-giver. It cannot be stressed enough how important it is to hold on to the parts of our relationships that are not MS. For the partners who do most of the care giving, respite care can be an important element in keeping a loving relationship from sliding into a patient and aide relationship.Each partner must understand the difficulties the other may be experiencing in their life with MS. How we see ourselves and how our partners see us as sexual beings can easily be altered by MS if we allow it to happen.  Like any part of a good, working relationship we may have to consider our limitations in dealing with sex and MS. Beforeour relationships begin to suffer we may want to seek professional counseling to help us deal with these very intimate issues (see resources below). Of special embarrassment can be issues of bladder leakage, painful urine retention, constipation and incontinence as they relate to sex and MS.I read with great pain when I see comments from our community that people have simply given up on that part of their lives.  If MS makes it difficult to walk, we get a cane, or crutches or a scooter; we do not give up on mobility completely. Why then would we think that some ‘difficulties’ in the bedroom somehow make us asexual beings?As multiple sclerosis is nothing if not cruel; on very rare occasions MS can cause hypersexual behaviors and sensationstoo!As an act of disclosure (and to show that I’m genuinely trying to open the door to this conversation) I have some sexual dysfunction caused by MS and, if I’m to believe my urologist – who specializes in MS and neurologic conditions – I’ve more “issues” to look forward to, due to current levels of damage (and let’s just say they’re not “hypersexual behaviors and sensations.”)There, we’ve done it. We opened the bedroom door to how MS affects the goings on in the boudoir. My hope is that this will not be a one-way conversation. Now it’s your turn.What are your MS and sex issues? Do you talk about them with your partner? Do you talk about them with your medical team? Do you hide from them?  Do you fear them?If you care to listen, I hosted a couple of webcasts on intimacyand sexsome time ago with some very knowledgeable MS doctors and therapists. I’d encourage you to have a listen, with your partner, if you’re so inclined.Next month; we’ll keep this conversation open by opening the bathroom door. In March we’ll discuss MS and the bladder.Wishing you and your family the best of health.CheersTrevisFor additional information and resources – including referrals to therapists and medical professional 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 intimacy, caregiving and sexual challenges related to MS.Additional information related to sex and MS:Webpage: You Can...Fan the Flames of RomanceBook: Enabling RomanceVideo: MS Learn Online: Sex and IntimacyArticle: MS vs. Good SexBrochure: Intimacy and Sexuality

2012 Resolved: To Speak of the Unspeakable

Blog Summary

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