Monday, December 31, 2012

The 2012 MS Year in Review including all my MS-Related posts written for HealthCentral is now available.

Thursday, December 27, 2012

Needle-Free Injections: Reality In the Future?

Biologic drugs have been used to treat RA during the past ten years. and are typically used as second-line drugs for patients who do not respond to traditional DMARDs.  Some biologics are used as first-line drugs for select patients with moderately to severely active RA.  There are nine biologics which are used for the treatment of RA, with the first receiving FDA approval in 2001.  A tenth biologic drug, Xeljanz (tofacitinib), was approved in November 2012 and should hit the market soon.

Traditionally, RA patients may be prescribed treatment with one or more of the non-biologic DMARDs before receiving treatment with a biologic drug (which is considered more aggressive).  A recent meta-analysis of 70 studies involving drugs used for RA compared the effectiveness of various treatments and combination of treatments in preventing joint erosion caused by RA as seen on x-ray image.  One outcome of the analysis revealed that combination treatment with 2 DMARDs plus periodic steroid treatment may be as effective as a biologic agent plus methotrexate (Graudal, 2010).

Besides being very expensive, a drawback to the biologic medications has been that they are given as subcutaneous injection (shot under the skin) or intravenous (IV) infusion.  However, many patients who fear self-injections are able to learn to give themselves shots with appropriate training and support.

Read this post in its entirety:

DMARDs, Biologics for RA, and Needle-Free Injections

Thursday, December 20, 2012

Cognitive Skills and Driving in MS

How do you know if you should or shouldn’t be driving?

Research has found that information processing and visuospatial skills are predictive of driving performance among persons with MS. Cognitive tests, specifically the Symbol Digit Modalities Test (SDMT) and the Spatial Recall Test (SPART 7/24), may be useful as screening methods for identifying the potential impact of cognitive impairment on driving (Schultheis, 2010).

However, Dr. Akinwuntan, a professor at Georgia Health Sciences University, says that the current practice is to administer 15 to 22 different tests that can last up to three hours and cost as much as $450 to patients with MS who need to be evaluated for driving appropriateness.

Read this post in its entirety:

New Study to Test Driving Ability and Cognitive Function in Multiple Sclerosis

Monday, December 17, 2012

Driving and MS

Studies indicate that automobile accidents involving drivers diagnosed with MS occur at a higher rate than those involving healthy drivers of the same age.  About three times higher, according to early research studies on the subject from Denmark (Lings, 2002) and New Jersey (Schultheis, 2002).

Although the majority of people with MS can drive safely, there are symptoms, such as vision problems, muscle weakness, or spasticity, which can make driving more difficult.  During an exacerbation, some people with MS may temporarily give up driving.  Others may lose their license if involved in a serious accident.

According to Dr. Akinwuntan in Augusta, Georgia, patients whose level of disability is low, scoring less than 2.5 on the Expanded Disability Status Scale (EDSS), “are relatively good drivers and those above 7 are not fit to drive.”  Of course, this is a wide generalization which may not apply to your personal situation.

Read this post in its entirety:

Safety, Driving, and Multiple Sclerosis

Thursday, December 13, 2012

Tremors in MS

A study published in the open-access journal Tremor and Other Hyperkinetic Movements reviewed recent advancements in the understanding of tremors in MS.  The review explores the prevalence and clinical features of tremors in MS, including physical  cause of tremors, and treatment methods, including surgery and/or prescription medications.

Reviewers searched MEDLINE with the terms “multiple sclerosis” and “tremor,” published between January 1966 and May 2012.  My own search revealed articles dating back to 1958, and at least six additional relevant articles published since May 2012.

Prevalence of tremor in MS
Studies indicate that tremors are prevalent in 25% to 58% of the MS population.  Upper limb tremor was described in 58% of 100 randomly selected MS patients from an MS specialty clinic in London (potential for selection bias); 27% with minimal tremor, 16% with mild tremor, and 15% with moderate to severe tremor (Alusi, 2001).  In a community-based study of 200 MS patients in Olmsted County, Minnesota, tremor was noted in 25.5% of patients with severe tremor seen in only 3% of patients (Pittock, 2004).

Read this post in its entirety:

Tremor in Multiple Sclerosis: Prevalence, Cause and Treatment

Monday, December 10, 2012

"Walking on Rocks" and RA

Patients living with rheumatoid arthritis may experience symptoms which cannot be detected by just looking at their body.  Even squeezing and poking the tissues surrounding tender joints may not make swelling entirely obvious.  Doctors often have to trust that when we say, “ouch,” we really do mean it.

There have been times where one of my RA symptoms was the “walking on rocks” sensation in my feet.  Really quite unpleasant.  Some people might describe this sensation as walking on marbles or walking on pebbles.  Researchers at the University of Southampton aim to improve the health and mobility of RA patients who experience the “walking on marbles” pain. 

Last fall one of our health guides, V, asked, “Anyone else feel as though they are walking on rocks?”  Responses to her question reveal that this is truly a common complaint.

Investigators have developed new ways of using diagnostic ultrasound and MRI (magnetic resonance imaging) techniques to assess a patient’s feet, specially the area around the ball of the foot and toes.  Previously, it was thought that this pain was due to walking on joints which were directly affected by RA. 

Read this post in its entirety:

"Walking on Rocks": An Invisible Complication of RA

Thursday, December 6, 2012

Carnival of MS Bloggers #129

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Rediscovering One's Self

by Linda of Bright Wings of Summer

Funny days
Warning: This post may use the words poo &bum, and cause outright laughter...

What did you have for breakfast? Sometimes my days are very boring, and not much happens.  Other days...
It started yesterday.  During a fab day out Christmas shopping with a girlfriend I developed a sore ankle - which I naturally ignored - never let a foot impediment get in the way of a good Girls Day Out!  Then later that night, exhausted, and with Hubby just getting home at 6.45, and no dinner on the table - I said - well lets just have waffles!  SO there were were at 8.00pm at night having waffles, and cream and maple syrup - for Dinner!! (At least they were sourdough, and have eggs in them... I won't mention the vast quantities of fat in the butter.  or cream. Not if you don't. )

Anyway - My sore ankle? is still sore... this morning I discovered it has a reduced range of motion.  So what? Well after a quick google check - don't you love google - it has ALL the answers!  I have spasticity in that left foot now it seems. Yucky yucky yuck poo bum.  (I DID warn you!)

So what?  Well I have MS (Multiple sclerosis) (If you don't know what that is go and google it.  Try wikipedia.  I'll wait)...

So - this is my First sign of progression since 2006,  I'm not happy 'bout that.  Which means today is now a designated "rest, stay cool, and no stress day"... Right... other than paying the bills, taking the framed art to the shop, returning a broken frame to K-Mart, and the FN (fortnight) grocery shop?  With a heat wave coming.  Well 30 is a heat wave for me...    Hmmm my list of things to do is huge, and now I need to make dr appointments, and think about treatment for spasticity -which means physio, or doing stretches myself, which will still take more time out of my day - groaning melodramatically -
why is life never simple?  
O.K. need to stop thinking about the list. It's making me stressed just thinking about it.  Right then - No lists. They are evil.  (Except when you read other peoples lists on Aimees List it Tuesday :-).

I Breathe. Nice thoughts. watching the birds enjoy the bird bath.  Oh, and see the cat watching them through the window - cute.  But  I know what he wants to do - go outside and eat them.  Don't think about the psycho teenager Alpha Male Cat who wants to go outside and hunt...or the fact that both the cat litter trays really, really do need freshening up... or the cat hair dust bunnies I know are there somewhere if I look... nope not looking.

Instead Look at the pretty flowers in the vege garden...without thinking of the fruit fly that have already stung the tomatoes, which requires a trip to Bunnings to buy fruit fly traps, or netting, or napalm... and definitely don't think about the 28 spotted lady beetle that you know is lurking on your eggplant leaves having a munch...
Thinking about munching...Hmmm getting hungry - time for breakfast.  At least we have bread (it's only just a little stale), and eggs, and milk (just enough for a coffee).. which I'll surely need if I am to be superwoman and figure out what I can do with the 2 wrinkled apples, and a sad lemon, I can see in the fruit bowl...  Nope can't be bothered with the eggs - there is just enough waffle batter left for 1 more - and THAT's what I had for breakfast!
by Kim of Doc, It Hurt When I Do This...

We cripples have learned a thing or two about the Laws of Physics.  For example, a body in motion stays in motion and a body at rest tends to keel over and plant itself face down on the sidewalk.  That’s one of the easy ones.  Gravity claims us all sooner or later, but it claims a cripple a little sooner than most.  We know that aging is the great leveler, we’re just waiting for our peers to catch up with us. We might need a cane or wheelchair in our fifties, but don’t we feel a bit smug whenever some able-bodied person scoots around us, frightened of his own inevitable decline?  That’s okay, we think, you just keep running, buddy, the day will come when you can’t run anymore. You go, Charlie. 

We cripples have also learned a thing or two about love. How spouses, for example, who love us very much, can entertain a twinge of disappointment when we cannot go for an impromptu walk around town, enjoy the rush of blood in our limbs and the air in our lungs, the quickening heartbeat, the children playing catch in the street and the sun slipping towards the horizon. It is an uncomfortable feeling, disappointment, it makes them feel that perhaps they are not good people for having such twinges. So they push it away.

But these small disappointments can accumulate over time. We are not aware of this, of course, though we do worry that it is being felt. We perform reality checks on an annual basis, we give our spouses opportunities to come clean.  But they reassure us, year after year, that it doesn’t matter, honey, I love you, I’m not going anywhere. And we believe them. We believe them because they dote on us, bring us coffee and cook our breakfast on Saturday mornings. They do all the housework and grocery shopping, open packages for us, chop the veggies for dinner. And they do not withhold affection, we get held and kissed and gazed at lovingly every day. So it must be true. It doesn’t matter. They love us. They aren’t going anywhere.

And yet we have doubts. We push those doubts away and tell ourselves they are of no consequence.  But they infiltrate our bliss in various ways; in my case, in a recurring nightmare. My husband and I are at some event in a large building with a stage. When the performance is over we head towards the exit along with everybody else. The crowd swirls around me and my husband is no longer at my side. I search for him, spot the back of his head a few yards away and push through the crowd in that direction. But I lose him. I cannot see him anywhere. My vision begins to darken and my legs weaken. I hobble along corridors through room after room and decide to head for an exit, he’s sure to be outside waiting for me. By the time I reach the door, the building is empty and I am alone. I step outside into the waning light, hysterical with grief, and peer at the narrow distances, past a now empty parking lot and across a barren landscape, and drag myself in the direction of home. Just before I go completely blind, I awake.

An MSer’s worst nightmare is not physical decline, it is abandonment. A couple of months ago, my husband of not quite two years, my partner for six, my doting, kind, funny, compassionate mate, informed me that he didn’t want to be married to me anymore because he resents my disease. I cannot be his activities companion. He feels like a coward about the future. He cannot be the husband I need and deserve.

It doesn’t matter, honey, I love you.  I’ll never leave you. Yes, he spoke those very words, year after year. Old reliable, he was. Like a 20th century car that gets an annual tune-up by its conscientious owner even though it never needs the points and plugs replaced. The fact that you cared enough to perform routine maintenance endeared you to it in a human kind of way. Unnecessary maintenance, but cute, very cute. I get a pat on the head for being so aware, so thoughtful, so painstakingly dedicated to taking nothing and no one for granted.

What isn’t cute is that annual reality check was never an invitation to placate me. I was not trolling for the lie, I was courting the truth, the whole truth, and nothing but the truth, so help me God. I’m funny that way.  I need to know even if it hurts. He knew that about me, knew that if he wanted out I would want to know about it. I told him that. Honey, if you ever decide that you don’t want to take the whole journey with me, I’ll understand. We’ve all got to follow the path we think will make us happy. And I meant it, every word.

Perhaps it was pride that held him back, or the prospect of getting bad press, I’ll never really know for sure.  Look, there goes that guy who dumped his disabled wife. What a putz. There are not a lot of ways to spin that kind of abandonment in a way that would make yourself a sympathetic character, goodness knows.  Judgments would be harsh, there is just no getting around that. It’s enough to hold a husband hostage in an unhappy marriage for months, even years. Keeping such a grave secret took its toll on him, and when he fessed up to me about his unhappiness, he wept deeply and often while I took in the news; I was at first incredulous, then defiant, bargaining for a delay in his decision until he sought therapy. Eventually, acceptance silenced me. I had just gotten the news that my marriage was dying and I had the grieving ahead of me, but for him it had died long ago and he was simply revisiting the grave with a heavy and regretful heart, only this time, he had brought me along. I had to leave.

He moved me back to my mother’s house where I had lived for twelve years before meeting him. I lay on my old full-sized bed and cried, feeling as though I had been punished and sent to my room without supper.  My mother had painted my old bedroom white after I’d moved in with him. And I suddenly felt as though I had never left that bed, that I’d been in a coma for five years, dreaming that I lived in another house with a husband, two dogs, three birds, a garden, lulled by the sweet strains of marital devotion, and now I had awakened back in my old bedroom, the white walls being the only proof of the passage of time.

A month has passed since the separation. I was sad, grieving, angry, bewildered for the first two weeks, but I’ve stopped crying now. I feel relief, I’m free. Liberated because I am no longer waiting for him, no longer feeling guilty for not being normal, no longer afraid that I’ll disappoint him. The worst has happened, I’ve been abandoned because of my disease.

But it is not the hardship that I feared it would be. I missed him for a while, for two weeks, but then I stopped, and that in itself troubled me. I realized how distant he had become for the whole previous year and how easily I had made excuses for him. He was tired, he worked two jobs and had other responsibilities besides. He was in a twelve-month rehab program and I figured I was there on a rain check for a year, I’d wait for him to finish it and then I’d get him back again. So I waited. I championed his progress, felt proud of him, in love with him, desirous and lonely, yes, but he was going through a tough time and I should try not to act too needy. I was very patient. I thought we were happy. I thought I was happy, but I wasn’t. And the fact that I stopped missing him so quickly saddened me, it meant the relationship had been over for me, too, and for quite a while. I simply hadn’t owned it.

I saw a therapist immediately, before I left my husband.  In my first session, I told my therapist that I was suffering from low self-esteem, that my self-worth was in the toilet. After all, I’d just gotten dumped out of a marriage because I was not whole. But by the end of the session, he told me a startling thing:  I possess very high self-esteem, I just think I don’t. We call that cognitive distortion.  

The distortion, it seems, came about when I got the bright idea to abandon my expectations. One should have expectations in a marriage, who doesn’t know that? Apparently, I don’t. I didn’t expect my husband to want to share activities with me, explore the depths of intimacy. I didn’t expect him to make plans with me for the future, be my health advocate in an emergency, I didn’t even expect him to want to be married to me forever.  Gratitude had displaced any reasonable demands I might have made. Gratitude so deeply ingrained that I felt I hadn’t the right to intone: “Please, sir, I want some more.” After all, I wasn’t a starving, abused orphan in a workhouse. I was well-fed and loved. What more could a middle-aged cripple want from a new husband?

And I had my own pride to contend with, my own fear of bad press. The odds were against us, so many women with a chronic disease or catastrophic illness are abandoned by their husbands. I didn’t want to become a cliché. Having expectations certainly wouldn’t tip the odds in my favor. And so I never protested when he wanted to stay overnight on his sailboat Friday nights, join a rock band, rehearse two days a week, and gig on the weekends. He had his freedom and I retreated to my office, seeking refuge in my online patient community of friends. There, I developed the intimacy my marriage lacked.

Now that I am single again, my friendships continue to nourish me, I still have the intimacy. And I’ve made plans to find my groove again as a writer, I’ve long neglected a book I started writing several years ago.  But what continues to haunt me is the notion of expectations. If I ever consider marriage again, I must bring to the table a list of expectations and a promise to myself that gratitude shall be reserved for acts of kindness only and never become the sole tenet of my marriage philosophy. The prospect of such a thing seems daunting right now, in fact, it upsets me to think about it.

The fact that it troubles me to imagine such a testament to self-worth means I have some healing to do yet.  And heal I shall.  My husband has given me a gift I would never have asked him for: I’ve gotten my whole self back, intact, for the most part. And I won’t squander it.  Not ever.

This concludes the 129th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 20, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 18, 2012.

Tuesday, December 4, 2012

Just For Fun - Mnozil Brass

Mnozil Brass - The Competition

This took me back to music school years, and made me laugh. Love the variety of genres (and personalities) combined into a brilliant show of musical theatrics. Enjoy!

Oh, and how could you not love a performance which includes an Alphorn?