Tuesday, July 31, 2012

Multiple Sclerosis is a Damned Expensive Disease!

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 Medicare for 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 study published 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 study has 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 before things 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.



You can follow Trevis via TrevisLGleason.com, 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.

Friday, July 27, 2012

Talking about multiple sclerosis with little kids

Writer, ms.about.com

I'm going to start by saying that I am not an expert in child psychology and this piece is not based on any formal research. I am a mother of young twins and I am living with multiple sclerosis.

Like most parents, I am doing the best that I can. Some days I feel confident that I am doing a great job at raising my children. Other days, I wonder how it is possible that the majority of adults emerge from childhood as functional, capable people – I question everything, convinced that my every move could result in some sort of emotional impairment of my girls in their later lives. 

Mostly, I hover in between the two extremes, trying hard to portray and instill confidence in my girls during the day and replaying different interactions at night while they are sleeping, wondering what I could have done better.

However, one thing that I am proud of in my parenting is how I have handled the matter of my MS. I am not saying that my approach is for everyone, but it has worked out for our family pretty well.

Ever since the girls were about two and a half years old, I have been fairly open about my MS and how I was feeling. Of course, this was tempered and came across in those early years as "Mommy is a little tired and could use a nap. Does anyone else want a nap?" or "Wow. Mommy's feet feel a little funny right now. Let's sit down for a minute while those silly feet have the tingles."

Now I say things like, "My body is telling me that I need a rest. Anyone else?" (Still no takers.)

I did my best to explain the mechanism of MS to my girls when they were about four. This resulted in them telling people, "My mommy has a sick in her brain and has to hold the railing when she is on the stairs." This is (clearly) a work in process. They are almost seven now and I am able to explain the nervous system and demyelination a little better to them.

The girls are also aware that I give myself injections. There were some occasions when they were tiny that there was really no choice but to inject in their presence – it is not advisable to leave crawling or toddling twins alone for even a couple of moments. They didn't really pay attention then and don't really find it that interesting now.

Here is what I would say about my approach to letting my small children "participate" in my MS:

I make it a fact, not a drama. By this, I mean I tell them what I want to share in a matter-of-fact way, rather than an emotional confession. I don't think it's a good idea to set the stage by sitting them down and starting with "There is something that I need to talk to you about that might sound a little scary, but don't worry, I love you." Big announcements like this can make adults very nervous, kids even more so. I tend to share medical news in a low-key manner and then let them ask questions.

I use examples that they can relate to. Clearly, with small kids, throwing around medical lingo about paresthesia or ataxia will not get you very far. Instead, I gently rub a comb on the bottom of their feet or have them try to balance on an uneven surface to explain how I feel much of the time. They remember this and tend to be sympathetic when I bring it up later.

I remind myself, they are my children, not my spouse or friends. Although I say that I am honest with my kids about my MS, this is not entirely true. They get the rated-G version where everything will be okay and there are just some extra challenges that we have to deal with as a family. They don't know that when I say that I'm tired that I really mean that I feel nauseated and incapacitated from fatigue. Nor do they know that some days I get angry at the world and have my own childish "it's not fair!" fits. I can let all of these emotions out with other grown-ups in my world, but I truly believe it's important that kids be allowed to have childhoods that are as worry-free as possible.

Again, let me reiterate that this is how I have brought the fact of my MS into our family. I would love to hear from those of you who have done things differently, or similarly, and what the results have been. 

Resources for children & teens:
  • Keep S’myelin
    Colorful newsletter for children, 5-12. Articles, interviews, games, activities, and a special pullout section for parents. (Online version has interactive games.)
  • Someone You Know Has MS: A Book for Families
    For children, 5-12. A story about Michael and his family explains MS and explores children’s fears and concerns.
  • When a Parent Has MS: A Teenager's Guide
    For older children and teenagers who have a parent with MS. Discusses real issues brought up by real teenagers. 

Tuesday, July 24, 2012

TLC: Tina-Loving Care

Douglas Winslow Cooper

When I came into Tina’s bedroom yesterday, I was surprised. She and her nurse were watching TV together. Not unusual. My beloved wife, now quadriplegic and ventilator-dependent due to multiple sclerosis, enjoys television, watching anything from news to Dr. Oz to travel to home and garden to documentaries.

We have had around-the-clock nursing since Tina Su Cooper’s nearly fatal MS-caused aspiration pneumonia in February 2004. Our nurses have come to like or even love Tina, and they stay for years, giving her what we call “TLC” for “Tina-Loving Care.” Tina is an exceptional patient, and we select her nurses carefully. The nurse in this instance was raised in Britain and of Jamaican ancestry, and has lived in the U.S. for a decade or so. 

Although there was much that Tina liked about Britain when she spent her junior year abroad there in 1964, she noted that her Asian ancestry generated a certain cool distancing from many of the British people she met there. She and others “like” her—blacks and Asians—were segregated in a new dorm, rather than interspersed with the “home” folks. Perhaps such a situation would no longer occur there, but it hurt a bit then. No doubt our nurse could tell of similar slights here and there.

But what had surprised me and pleased me deeply? Our nurse was holding Tina’s hand, the first time I had seen that done by any of our nurses, though many will give Tina a kiss of greeting or goodbye.

Nurse Angela said quickly, “She finds this comforting.” Clearly, Tina did. So did I.

I was deeply touched. “Please do so … any time.”

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, July 20, 2012

The Power of One

Marie Cooper
Writer, MS Renegade
I taught childbirth preparation for many years at our local hospital and spent much class time discussing how to manage pain. I emphasized how it was important to have as many skills as possible in your virtual tool box, so when one wasn’t as effective anymore, you could reach for another. But most of all, I would tell the couples in my class over and over, that one of the most basic and effective tools in managing pain was simply having another person there to offer support and caring.

Those lessons that I once taught have actually been helpful to me all these years later in dealing with the physical and emotional pain associated with MS. Unfortunately, that basic strategy, having another person to share the load, is not always available to me. 

It can be hard enough being single under the best of circumstances. But when you throw a chronic illness into the mix, the words “challenge” and “lonely” acquire a whole new depth of meaning.

I like to remind myself there are definitely some plus sides to being a singleton.  I‘m independent. There are never any quarrels over money or what to watch on television or what is for dinner. I have only myself to answer to and I usually agree with myself. And when I don’t, I simply tell myself to shut up and that is the end of it. I don’t even have to be polite to myself.

On the other hand, it can feel overwhelming to be responsible for everything. It is endless work coordinating rides to medical appointments. It is upsetting to struggle through painful or tedious procedures with no one to hold my hand. And, while it is a luxury of singlehood to be able to stay up till all hours reading without disturbing anyone, it is those middle-of-the-night tidal waves of anxiety that can knock me off my feet because I feel so alone.

Those dark moments are part of the human condition, I think, no matter what. But there are things we can do to help balance them. We can develop a sort of virtual tool box, much like the one I used to talk about in my childbirth classes.

Friends: One of the most important things I can do is to foster my friendships. With a chronic illness, it is so easy to lose touch with friends. As I get more immobile, I find I isolate more because I don’t want to be a burden. To me, it feels like so much work to do something as simple as going out to dinner, so I tend to decline invitations. But, my friends don’t look at spending time together as though it is work. Those who can are happy to help. They remind me that they actually like my company.  It is hurtful to them when I make assumptions and limit the opportunities they have to help me out. Plus, while physically it may be hard to get out, a change of scenery often helps lift my mood. And you never know who you are going to meet along the way. I have finally accepted the fact that Prince Charming is unlikely to turn up spontaneously at my front door.  Instead, I might actually have to go out with my eyes peeled.

Revise personal expectations: In my former life I outdid Martha Stewart in terms of type-A, every-detail-precise entertaining. I have had to force myself to reassess my standards. This hasn’t been easy. It just about chokes me to even type that sentence. But, again, people come over to see me, not to see if the underside of my antique dining room table has been hand-rubbed with beeswax.  (Yes, I actually used to do that. Hey, I never said I was not insane.) While it makes me want to cry that I can no longer whip up a multi-course luncheon with 10 minutes warning, most of my visitors are more than happy with store bought food. Or with a glass of water. Or with nothing at all but a lovely chat. And they prove it by coming back again and again.

Make serenity an objective: Through painful experience, I have learned that peace of mind is a choice. Knowing this does NOT mean I am always in a peaceful state, however. For me, it requires constant work, constant practice, constant reminders. So I read encouraging literature, I put affirmations on little slips of paper and tape them to my laptop and desk, I meditate to slow my speeding mind to a low-level buzz and I try to keep a positive perspective on things. All easier said than done, but the key word here is “try.”

Nothing can take the place of a fulfilling, loving relationship with one special person. But that does not mean our lives have to be empty otherwise. I have found that by keeping the focus on maintaining my health and keeping an open mind, I can indeed manage well, even though, right now, I am only one.

Tuesday, July 17, 2012

To Drive or Not to Drive with Multiple Sclerosis

Writer, ms.about.com 

A friend of mine recently had orthopedic surgery and was unable to drive for four weeks. "A whole month!" she complained to me. "Can you even imagine that?!?" In fact, I can imagine that. I did not drive much at all for about seven years.

About a year before I was diagnosed with MS, I became terrified of driving. I would get in the car and my hands would start shaking. I always made sure I knew exactly which route I would take and, many miles in advance, I would start dreading the known "challenges," such as traffic circles or places where other cars would merge with my lane. When I would notice a car switching lanes 500 feet ahead, I would flinch and be tempted to slam on the brakes. I was a mess. People kept telling me my driving anxiety had psychological roots, and that I needed to keep practicing or my fear would keep me from living my life.

Eventually, some other symptoms led to my MS diagnosis. Still, no one mentioned that my driving might be impaired. It was only after lots of reading that I put the pieces together and figured out that MS-related cognitive issues were behind the terror that I felt when I drove. Looking back, it all makes sense – if a person doesn’t feel as able to concentrate, react quickly, see the road as clearly, process the incoming stimuli as quickly, it could certainly lead to fear of driving.

So, I basically stopped driving any distance beyond a mile or so from my home. In fact, my husband and I chose a house within walking distance to a grocery store and the school that our future children would attend. Often, there would be whole months when I only got behind the wheel one or two times. For the first four years of my daughters' lives, I would not drive the car with them in it.

Today, things are better. I am much more comfortable driving and drive quite a bit. However, I still do not go on highways or to unfamiliar places.

Here are some rules I follow when deciding whether I am "roadworthy" and how to be safe behind the wheel:

Do a "gut check." This is the most important thing that I can do before I get in the driver's seat. I do a little inventory of how I’m feeling that day. I picture myself on a busy road and if the thought makes me uncomfortable because I might be feeling fatigued or experiencing other symptoms, I don't drive. Period. I remind myself that no matter how inconvenient it might be to cancel plans or miss an appointment while I wait for a time when I feel better or someone else can drive me, safety is the most important thing.

Get a professional evaluation. If you’re unsure about your driving abilities, look into a Certified Driving Rehabilitation Specialist. They can assess your physical and cognitive abilities, and recommend adaptions to your car that will help keep you driving. Visit the Association for Driving Rehabilitation Specialists. Occupational Therapists can also help assess how much symptoms are affecting your driving.

Avoid hectic places and times of day. Even when I feel great and fully roadworthy, I do not drive when and where I know traffic will be bad and people will be in a rush.

Stick with one car. Everyone has one car that we feel the most comfortable driving. I really recommend trying to only drive that car, rather than switching cars with your spouse or roommate frequently. We just don't need the extra challenge of trying to remember how to operate the wipers or locate other controls.

Concentrate. Turn off the music. Ask the kids to talk quietly. Do NOT talk on your cell phone (even with hands-free technology). When you drive, drive. Make a point of consciously noting traffic lights and stop signs and what other drivers are doing.  Frankly, I wish more people would tune in a little more when they are driving, MS or not.

Ask for help. Because I did not drive for so long, I got used to relying on other people (usually my husband, but also friends) to get where I needed to go. I would strategically plan out errands and appointments so that they were as convenient as possible for my "chauffeurs." While this can be a big hassle for someone used to having full freedom to go anywhere, it is hugely important if you are not comfortable driving. Make sure that you acknowledge those helping you.

Bottom Line:
Despite the urgings of well-meaning loved ones and their conviction that I just needed to "keep practicing," I know that driving is something that I can do some days and cannot do on others. Inability or anxiety around driving can be caused by many MS-related symptoms, such as fatigue, cognitive dysfunction that slows down reaction time and executive processing, vision issues and sensory symptoms that make it difficult to feel the pedals with your feet. Again, lacking confidence around driving is not "all in your head" – these are very real symptoms that can negatively impact driving ability and ultimately, safety.

Many people look at driving as one of the most important areas of independence in their lives, and it can be scary to think about giving up that lifeline. Don’t let fear keep you from speaking up about your concerns. Now more than ever, there are vehicle modification options. A professional evaluation and the use of recommended adaptive equipment can increase your safety and comfort, and promote independence for as long as it remains safe for you to drive.

Tuesday, July 10, 2012

Does this wheelchair make my butt look big?

Susan Skoney

Are you just really sick of being in a wheelchair? I am. I’m so sick of it I need to vent. I find being in a chair makes me feel claustrophobic, trapped and sometimes like an invalid. Or, am I “invalid”? Yesterday, during a heated discussion with my husband, in a big huff I rolled into another room. And he said, “Don’t you dare roll away from me when I’m talking to you.” If that statement hadn’t been so pathetic, it would have been funny, but I take comfort that at least I could pull off a dramatic roll.

When you are in a wheelchair, people see you differently. You are not at eye level with the rest of the adult world and can be easily overlooked or “invalidated.” How many times have people walked quickly by me, eyes ahead while I struggle to get a door open? 

Or take the incident I recently had in the supermarket, where some strange man came up and started pushing me thru the handicapped checkout lane because I wasn’t moving fast enough for him. My husband, a few feet ahead with our shopping cart, looked back, and the guy, while still pushing me, says, “Hey buddy, forget somethin’?” We should, as a group, carry small yet discreet stun guns for just such occasions, but the whole incident made me feel invisible, to say the least.

But I prayed for invisibility about a month ago on another shopping trip with my daughter. We were at a local department store and, while the main aisles are wide enough for a wheelchair, some merchandise displays can even make walking a challenge. I was trying to push myself along between two very full racks. My daughter returned from the other side of the display and was mortified that little plastic hangers holding pretty little panties were now stuck in the spokes of my chair. As I tried to extricate myself from the situation, my wheels knocked the rack just enough so the matching bras above started falling. We hung back up what we could and made a hasty retreat to juniors.

This time of year is especially difficult being in a chair. Rolling over uneven, hard grass to get to a picnic spot or soccer field can give you bladder issues even if you haven’t had them before. And the beach, well…. 

Another peeve I have with being in a wheelchair in the summer is fashion related. Summer attire is fun, bright and crisp, until I pair it up with the hot, black accessory that has become almost another body part. So as we leave the house, I ask my husband, “Honey is it my new slacks or is it the chair making my butt look big?” He reassures me that it is neither. 

I hate being in my wheelchair. My little cat Miss Lottie Lou loves being in my chair. In fact, my wheelchair is at times full of what we call “Lou-fur,” which means my backside is full of cat hair. But, who would know?

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.

Friday, July 6, 2012

The Travel Challenge

I love taking vacations, but I hate traveling. For years my job required that I travel by car and airplane. I think my dislike stems from associating travel with working. But now that I am “retired” (disabled), all of my travel is for pleasure. That’s the good side.

However, I still hate traveling just for a different reason. This time the offender is urinary incontinence.

I saw a definition for urinary incontinence that read, “Any involuntary leakage of urine. It can be a common and distressing problem, which may have a profound impact on quality of life.”

That says it all.

I can’t make any plans or go anywhere without thinking about the restroom situation. I have learned to manage traveling around town, but going out of town can be hard. 

On a recent car trip to a National MS Society weekend retreat, we stopped four times adding an extra hour to the drive. The problem is when the urge to go to restroom hits, I have to go to the restroom at that exact moment! There is no holding it until later. In a good situation I have five minutes tops to make it to a bathroom, but most of the time it’s too persistent and it comes out in less than a minute. I do take medication, which helps, but it’s not entirely fail-safe.

Because of this, I had to humble myself and begin using adult diapers. But, I must admit that, while horrifying to this 37 year-old, they have allowed me to be more relaxed and enjoy myself. I am no longer afraid to take long trips. Even though I still have to scout my surroundings for the nearest restroom location, I don’t have to continuously wonder if I have gone too far from a lavatory to make it on time. It has given me the freedom to enjoy festivities and the people I am with.

If I soil the incontinence panties during a long trip, we still have to stop so I can change into a new pair. I guess this is just another issue that I have to learn to deal with. 

How about you? What accommodations have you made to cope with the challenges your "new normals" present when traveling?

Monday, July 2, 2012

Depression and MS —The Perpetual Motion Machine

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 website that describe depression in very good clinical language. Depression is a “clinical” issuebut let’s face itunless 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 lotjust 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 intended futures. 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.



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.