Tuesday, February 28, 2012

The Cost of MS

Susan Skoney

Do you need to vent? I do. I have just about had it with all the problems that having multiple sclerosis brings. And if the physical issues weren’t enough, the mental anguish caused by all the obstacles MS throws my way makes me really crabby.

Some of these hurdles are ongoing, like the financial havoc MS creates in my life.

I am completely disabled, but I am ineligible for Social Security Disability Insurance. Even though I have worked and paid into Social Security since I was 16, the quarters that the Social Security Administration looked at were more recent—the years when I was home caring for our children, and not earning income. Oh, well. If I live to be 62 years old, I can collect early retirement benefits.

I also don’t qualify for Medicaid because my husband’s income is too high. But is it really? Not when we figure in all the expenses of MS, such as my fabulous aide who comes every day to help me shower, dress, get to the bathroom, do laundry, take me to appointments … you get the picture. We pay for this help.

We also pay for health insurance and right now my health insurer is refusing to pay for my MS treatment. It allows 20 physical therapy visits a year, of course, with a co-pay. But 20 physical therapy treatments per year for a patient with MS are hardly adequate, so we pay privately for more. Then I need a customized brace for my ankle, but the co-pay is $450. My daughter also needs braces on her teeth, but we have no dental coverage. So my brace will have to wait.

Between extra help, co-pays, modifications to our house and the ever-increasing costs of medical insurance, MS has just about broken us financially. We now live paycheck to paycheck with an ever-growing stack of bills. So I’m really, really crabby. MS stacks the cards and it feels like everyone else is holding them. Something must be done. I’m thinking about that. But I’m also thinking about how beautiful my daughter’s smile will be.

For questions about SSDI or Medicaid, or to ask about financial assistance, call an MS Navigator at 1-800-344-4867, or visit nationalMSsociety.org/financialassistance.

Thursday, February 23, 2012

Cause & Effect

Travis White

I’ve heard that people who own their own homes commit fewer crimes, proportionally, than people who don’t own homes. But what causes what? If owning a home reduces your propensity to commit crimes, then perhaps we should promote home ownership as a way to reduce crime. On the other hand, it may be that people who don’t commit crimes are more likely to accumulate the resources needed to buy a home.

So, does home ownership promote good conduct? Or does good conduct lead to home ownership?

When two variables are associated, it’s often very difficult to tease out which one is the cause and which one is the effect. It’s a thought I often keep in mind when I consider my MS.

Before I was diagnosed, I generally thought of my brain as being in control of my body. My brain was the cause; my body was the effect. But lately, I’ve been wondering, if the brain and body are all part of the same system, shouldn’t communication flow both ways? Perhaps then, my body can send signals to my brain that can teach it to work around those nasty little lesions.

My most annoying symptom is a loss of sensation on the right side of my body. (As luck would have it, that’s my dominant side.) So I try to stimulate the right side of my body in various ways. I have a studded massage ball that I like to roll on and under my foot. I rub my hand and foot against various uneven surfaces to stimulate the nerves. I tap on the right side of my head. I also try to do more things with my left hand to create new mental connections or remap old ones.

I also practice balance exercises to teach my brain to form new connections in—and perhaps a new conception of—my body. I can’t say if I’ve changed my brain or not, but my balance has improved significantly and that, in turn, has bolstered my confidence. That’s a pretty good outcome even if I’m not doing anything to directly affect my lesions.

I’ve also learned that a smile can be both a cause and an effect. I used to think that a good mood caused me to smile. Now I also realize that a smile can create a good mood. Since depression often accompanies MS, I find that this is a very useful discovery. If I can just force myself to smile, I can often chase the blues away, at least temporarily.

That’s a very good effect from a very simple cause.

Tuesday, February 21, 2012

Independently Dependent

Nicole Lemelle
Blogger, My New Normals

One of the worst things about the state of my health is the dependency on my husband for … EVERYTHING! OK, that might be a bit melodramatic. It just feels like everything.

I’m constantly yelling his name. “T-O-M-M-Y!” It aggravates me to need something and not be able to get it for myself. Especially since what I want may be as simple as my purse, opening the blinds, or locating a necklace.

In this instance, I ask him to get my choker that is in the next room. After I explain what a choker is, it takes him a while to find it. He finally arrives, hands me the choker, and leaves the room. I try to put it on and my fingers fail to open it. Darn it!

Meanwhile, I know he has every right to be busy doing something for his own enjoyment, although chances are that he is preparing dinner or washing dishes. This only serves to heighten my frustration. He is such a good caregiver/husband and I can only bark so loud. How can I be so selfish? How can I be so dependent? It’s an especially annoying dependency because in reality I know I could be so much worse.

I like to blame everything on MS. I’ve said before that I do hold some responsibility for how I respond to these maddening situations. This time I simply sit a little while longer than I had initially planned. Plus, I quit yelling for him. I’m sure my yelling tends to aggravate him as well. After a brief respite, I am able to awkwardly open the necklace for myself! I then cool down, exhale, and feel proud of my small independent accomplishment.

Keep in mind I don’t hear myself complaining when he is by my side at our gym’s pool. In fact, after aquatic class he comes into the assisted bathroom with me and helps me shower. I’ll spare you the explicit details and will just say he definitely had no idea what he was getting himself into when he uttered those infamous words,  “I do.”

I just never imagined myself being this dependent on ANYBODY.

Then I suddenly remember a fellow MSer telling me, “Nicole, I need someone with me at all times. I can’t even use the bathroom by myself.”

This kind of puts things in perspective for me because at least on good days I can go to the toilet by myself …

Friday, February 17, 2012

Multiple Sclerosis and Love

Julie Stachowiak, PhD 
Writer, ms.about.com
As February is considered by many to be the month of love, I thought I'd share a couple of thoughts about that very subject. I'm no expert on the subject, but I do know that it is easy to let MS taint many things that we hold dear. Many times the people in our lives also feel derailed and unsure of things because of our MS. Here are a couple of my suggestions for allowing love to help you (and others):

Let your loved ones in, but try not to drag them down (too often). I think it is important that my husband knows what I am feeling, so I share with him what is going on with me and my symptoms. He usually has already figured out most of it by the time that I tell him. He is very patient and listens when I want to complain, even when I want to whine. He will listen while I have a tantrum that includes a flurry of  "it's not fair" and "why me?" moments. I do feel that sometimes you really need to let it all out.

However, I have also noticed that if I go on too long about my mental and physical anguish, I not only bum out my husband, I feel worse – almost like I am stuck in this bad place. I think the best policy is to share what is bothering you, maybe even cry a little, then pull it together the best you can and see what the rest of the day holds.

When you are feeling good, celebrate those moments with your loved ones. It is true that many of us feel crappy a lot of the time. However, there are times when we feel less crappy – even good. Don't waste those moments. Grab them and share them. Be spontaneous. Tell your family that you want to go on a picnic or to a movie or for a walk. Work a puzzle or make a cake with your children. Have a conversation that doesn't have anything to do with MS. I can pretty much guarantee you that they will remember and treasure these moments. They will give you something to hang on to (and strive towards) during the not-so-good days.

Ask your loved ones about themselves. There are some days that the MS may seem bigger than we are and it is hard to think of anything else. Other people have their own problems, though. Make sure that you ask your loved ones what is going on in their lives. Try your best to really listen. If they don't feel good, show sympathy (and try not to use this moment to tell them what it is like to really not feel good). If they are nervous about something, share a story about a time when you were nervous and it all turned out okay. Or maybe just encourage your loved ones to talk while you listen quietly and supportively, making sure that they know that they count, too.

Tell people that you love them. Do this sincerely and often. Don't wait until you are feeling good or when you feel bad or when the moment is just right. Just tell your loved ones that they are loved. It makes the world a nicer place.

Tuesday, February 14, 2012

Sex & MS

The Unspeakable Bits; From A Life With MS

I wrote last month in 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 primer on 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. Before our 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 sensations too!

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 intimacy and sex some 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.


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 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 Romance
Article: MS vs. Good Sex

Friday, February 10, 2012

Everybody’s got something

Travis White
Travis Bikes America  

When I was a kid, I remember my mother saying, “Everybody’s got something.”  She didn’t say it frequently but often enough that I remember. Since it was often accompanied with a sigh and maybe a sad-eyed look, I always assumed it had negative connotations as in, “Everybody’s got a cross to bear.”

I gradually learned that my Mom’s words also had another layer of meaning. It wasn’t just that you’ve got something – you also need to deal with it. She was a practical woman – and a strong-willed woman – and she meant, “Don’t spend too much time whining and complaining. Everybody’s got something – you’re not a special case. Just get on with it.”

My Mom’s words came to mind when I was diagnosed with MS in 2008. Since I was 58 at the time and generally healthy, I was stunned. But then, I’ve always been a late bloomer. So what did my Mom now long dead – have to say to me?  Pretty simple: “Everybody’s got something – just get on with it.”

So, I’ve been trying to get on with it. I was angry for a while but then decided that anger was getting me nowhere. Like my Mom, I’m a fairly practical person and I realized that it’s not practical to waste any time being bitter. So, as much as possible, I stopped being angry and focused on what I could do rather than what I couldn’t do. (I should say that I have a relatively mild case – relapsing-remitting – and my main goal is to avoid a relapse). 

As I focused on staying healthy, I realized that my mother’s words had yet another layer of meaning. As she might say, “We’re all different but we’re all God’s children and everybody’s got something to contribute.” We all have problems to face but we all have something positive to contribute as well. 

So what can I contribute? Well, I have a background in marketing and I’m pretty good at asking people for money. I decided that I could contribute by raising money for the National MS Society. So far, I’ve raised about $40,000. I also enjoy writing and I’d like to contribute my thoughts for this blog. Maybe what I’ve learned will be useful to others as well. As my Mom would say, “Everybody’s got something.” Turns out she was right.

Tuesday, February 7, 2012

How I communicate about MS with my children

Julie Stachowiak, PhD
Writer, ms.about.com

I have twin girls who are now six years old. I was diagnosed with MS a couple of years before they were born, so it has always been present in our little family. I guess there was never a question whether or not to share my MS status with them – it was too big to hide.

One of my first memories of the girls really understanding that I wasn’t entirely well was an incident where I was reduced to tears when one of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.”

The experts will tell you (and I can confirm) that young children pick up on the fact something is wrong when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Children who are a little older may get worried that something terrible is happening – that their parent will die, that they will die, that they did something terrible and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school.

Those same experts say that we should answer all questions about our MS honestly and directly, adjusting the information as they get older. That might, or might not, work for you. I know that some people choose to keep the fact of their MS from their children until they reach a certain age or something happens where it must be revealed, the thinking being that they are letting their children have a good shot at a normal life, without the pervasive worry of having a sick parent.

I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do – I cannot tell you that you must be open about your MS with your children. The only thing I can tell you with 100% clarity is that it is impossible to show your children too much love.

As far as my situation goes, I have chosen to be very open with my daughters (in an age-appropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss multiple sclerosis and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or being outside in the sun for too long.

I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They also are not afraid of people who are different and easily talk to people with different situations – we have friends with Down syndrome, in wheelchairs and who are hooked up to oxygen – my girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that.

What about you? Have you told your kids about your MS? Why or why not? Share your story with us.

Society resources for families:

Thursday, February 2, 2012

Organize Your Meds

Julie Stachowiak, PhD
Writer, ms.about.com
I'm not as organized as I would like to be. Pants and shirts are mixed together in my drawers. Crackers and spices sometimes get intermingled in my pantry. I often have to hunt for something in a pile of papers on my desk. Although I would like to get better about this, I think that's all pretty normal and really not a problem.

However, I do think that one place that we all need to be very organized is around our medications. This is important for many reasons:
  • It helps us remember to take them 
  • It helps us remember when to reorder them or refill our prescription 
  • It helps when we go to the doctor and have to list our current meds 
  • It helps our loved ones find them if we need their assistance 
  • It helps if we ever have an accident or medical emergency and medical personnel need to know exactly which medications we are taking 

So, I am going to give you a little exercise that will take no longer than 10 to 15 minutes. By the end of this time, your medications will be in perfect order.

Here are the steps:
  1. Gather all your medications. This would include everything that you take on a regular basis – your disease-modifying therapy, your symptom management drugs, any meds you take for other conditions. If you take certain over-the-counter medications frequently (like pain relief for your headache or a vitamin supplement), put those in the pile, too. 
  2. Grab a piece of paper and make 5 columns, labeled: Medication, Dose, How Often Taken, Refill/Expiration Date, Special Instructions. Fill them out. It might look like this: "Copaxone; 20 mg; 1x/day; Call for refill 3/10; Autoinject set at 3." 
  3. Your list is done. I would suggest making a couple of copies of this and putting one with your meds, as well as in your purse or briefcase. Give one to your spouse or other family member (even if they don't live with you), just to have access to the list at all times. Also, make a copy to give to your doctors – I know my neurologist does not have me list out all my meds each time I go and often has no idea what I am taking from other specialists unless I tell him. Often, there are clues to some of the symptoms that we are having (ex. fatigue, constipation, insomnia) when the list of medications is in front of the doctor. 
  4. Put your meds in spots where you will find them easily and that make sense to you. I put my morning medications in a kitchen cabinet and my nighttime medications by the sink in my bathroom. 
You are done. Doesn't that feel good? Now, for extra credit:

  1. Go to Drug Interactions Checker on the Internet. Enter the names of all the medications on your list. See if any of them have interactions or special instructions that you need to ask your doctor about. You can even save your list on the site, which will allow you to check any drug that is prescribed or any over-the-counter therapy that you are thinking of trying. This is one of the most useful things that we can do for our health and I love this tool. (Read more here: Check Out Drug Interactions Checker.) 
  2. Go through your medicine cabinet and pull out ALL of the old medicine there. Look at supplements, over-the-counter and prescription medications that you aren't currently taking. Weed through these – discard expired stuff, antibiotics that you didn't finish, drugs that you will never take again because they didn't work or the side effects were awful. Don't just throw all of these in the trash – ask your local pharmacy about medicine disposal in your area.
Please, do put in a couple of minutes and organize your medications. It's just a smart thing to do for convenience and for our health.