Sunday, December 22, 2013

Improving Your Posture is More Than Sitting Up Straight

MS can contribute to poor posture in a number of ways. Muscle weakness or imbalance of muscles in the torso, especially weakness in core body muscles in your back and stomach, can lead to poor posture. When these muscles are weak, it is more difficult to keep your back and pelvis in proper alignment, which may lead to slouching and/or leaning backwards to compensate for the weakness.  Improper spinal alignment can cause neck and back strain as smaller muscles must work against gravity to hold the body upright.

Patients who experience weakness in the lower extremities may find standing for extended periods of time difficult, and may also begin to slouch or lean to compensate.  Patients who have difficulty walking due to foot drop or weakness in leg or hip muscles may experience poor posture because their muscular imbalance causes them to overcompensate by walking with an exaggerated gait.  Each of these circumstances may increase fatigue which itself can contribute to poor posture. It can become a vicious cycle.

Read this post in its entirety:

Living with MS: How to Improve Your Posture

Sunday, December 15, 2013

Improving MS Through Rehabilitation

Patients diagnosed with any form of MS may experience a variety of symptoms, several of which can interfere with everyday living.  Symptoms might affect strength, mobility, balance, gait, agility, cognitive function, speech, and functions taken for granted such as swallowing.  Rehabilitative therapies can help to counteract some of these symptoms and address very specific patient needs.

Rehabilitation specialists work with patients to help maximize physical abilities, function effectively at work and at home, learn strategies to compensate for symptoms and challenges, increase patient safety and independence, and promote general health and well-being.  To gain most benefit from rehabilitative therapy, patients must take an active role in following the treatment plan prescribed and guided by therapists.  Common rehabilitative strategies used in MS include the following:

Read this post in its entirety:

Effectiveness of Rehabilitation for Improving Multiple Sclerosis

Sunday, December 8, 2013

Is it an MS Relapse or Pseudo-Exacerbation?

Many people with MS who are heat sensitive may experience a temporary worsening of symptoms when the weather is very hot or humid, sunbathe, get overheated from exercise, or take very hot showers or baths. Some people may notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign.  Even a slight elevation in core body temperature of one degree can cause a temporary increase in MS symptoms.

These temporary changes in symptoms are called pseudoexacerbations which look like and act like real relapses, but are temporary and do not indicate disease activity or progression.  Realize that when we talk about pseudoexacerbations, we are certainly speaking of very real symptoms as there’s nothing “fake” about the experience; it is just temporary.  Common triggers that may cause a pseudoexacerbation include infection, especially urinary tract infection, stress, pain or fatigue, exposure to heat or cold, premenstrual syndrome, or certain medications.

Read this post in its entirety:

What is an MS Relapse versus a Pseudoexacerbation?

Thursday, December 5, 2013

Carnival of MS Bloggers #150

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

From Life Well Lived


nest
As I am listening to The Black Swan, The Impact of the Highly Improbable  by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking.  I can not help it.   Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me.  As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.

One of his examples is the 1,001 days in the life of a turkey.  For the first 1,000 days of the Turkey’s life, the farmer is the good guy.  In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.
Unfortunately for the turkey on the 1,001st day, the farmer has come to begin the Thanksgiving celebration preparations.  The 1,001st day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed.  The farmer was not providing food because he wanted to make the turkey happy.  He was doing it to fatten him up.  Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”

One of the central points in the book involves one of my favorite topics, perspective.  In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making.  For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him.  It is the 1,001st day that shows how wrong he was.  If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey.  Instead, they should be mindful of the story of the 1,001st day.

I try to take this story to my MS treatments.  I have been on Tysabri for 7 years, and it has been a quality of life saver for me.  If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells.  I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection).  Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study?   I do not pretend to know all that may go wrong.  When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like patientslikeme.com.

What I know is like the turkey during the first 1,000 days, I am currently happy and thriving.  When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths.  Still, other treatments had failed to abate my increase in symptoms.  Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.”  Nobody is promised the 1,001st day.  For that matter, nobody is promised tomorrow.  In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”

Now, I as I listen to the rest of the book, I am keeping in mind two facts:

First, nobody should stay on Tysabri for 7 or more years simply because I have survived.  To do so would be to fall for one of Taleb’s unseen biases.  Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it).  So deciding based on my blog and others like it may be and probably is unwise.

The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life.  I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points.  I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller.  As one of my teachers said in high school, the victors write the histories.  However, even they do not always know the truth behind why they won.

Still, without stories, we are left with only statistics.  Ironically, pure math misses as many truths as relying solely on story telling.  I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.”  She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20.  I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people.  It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.

So with this in mind, I come back to Tysabri and the turkey.  I continue to take it because it makes my life now better.  Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers.  They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered.  I may have my 1,001st day in the life of a turkey, but it will be after having lived for the full 1,000 days.  I prefer this to the life of the turkey who chooses to live always hungry, always wanting.

I note Thanksgiving does not come at the 1,001st day of every Turkey’s life.  In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided.


This concludes the 150th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 2, 2014. 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 31, 2013.

Tuesday, December 3, 2013

Imroved RA Treatments Have Led to 50% Reduced Disability and Emotional Distress

Nowadays, only 1 out of 4 RA patients are disabled after the first four years of treatment and the percentages of patients with depressed mood and anxiety have been reduced about 50%, according to a new study published today in Arthritis Care & Research, a journal of the American College of Rheumatology (ACR). That’s good news for patients diagnosed today whose treatment choices, both pharmacological and non-pharmacological, have improved since 20 years ago.

Not only have attitudes toward evidence-based medicine changed in recent decades, but treatment options have increased dramatically.  Rheumatologists are also more likely to recommend non-pharmacological treatments such as physical exercise to patients.

Read this post in its entirety:

Physical Disability and Psychological Distress in RA Patients Reduced by 50% in Last 20 Years

Sunday, December 1, 2013

Relapsing Forms of MS vs. Progressive MS

MS is not a disease that follows a standard disease course, identical from person to person.  However, the disease does present with certain patterns and characteristics which help neurologists classify the type of MS a person may have.  In general, MS can be divided into relapsing forms of the disease and progressive forms of the disease.  Note that some forms of MS can have both relapsing and progressive features.

The four commonly accepted types of MS are:
  • Relapsing-remitting MS (RRMS)
  • Secondary-progressive MS (SPMS)
  • Primary-progressive MS (PPMS)
  • Progressive-relapsing MS (PRMS)

Read this post in its entirety:

Differences Between Relapsing-Remitting MS (RRMS) and Other Forms of MS

Thursday, November 28, 2013

Positive Focus Learned in Studying Music

During graduate school, I studied with a number of horn professors, each of whom had their own style of performing and teaching.  Some were very positive and nurturing and others were rather demanding (and loud).  Certainly the kinder, gentler teachers were less frightening, but did they actually push me hard enough to be my best.  Without the luxury of having contrasting and complementary experiences, I would not be the person/performer/teacher I am today.

In my own style of teaching, I try to blend the best of my experiences and cater to the needs of each child.  One of my goals is to provide each student with the necessary tools to measure his/her own progress and to learn how to be self-nurturing and self-demanding at home.  Each student becomes his/her own teacher.

Sometimes I think that life teaches us lessons and, although it may be uncomfortable or awkward at times, these lessons help to shape the way we function in the world.  When someone asks you how you are doing, really doing, what types of things are the first ones which come to mind?  Do you focus on the positive or the negative initially?  My gut reaction is often to focus on what is “wrong” in a situation.  It takes practice to focus on the positive first.

Read this post in its entirety:

Lessons Learned in Music Help to Improve My Health

Sunday, November 24, 2013

Also Tell Your Doctor About Minor MS Relapses

For an attack to be considered an MS relapse, it must meet the following criteria:
  • New symptoms appear or old symptoms of MS become worse
  • The episode of new or worsening symptoms lasts for more than 24 hours
  • Symptoms of the relapse do not occur within 30 days of a previous relapse
  • There is no other explanation for the symptoms
Treatment for relapses typically involves a course of high-dose intravenous steroids to reduce inflammation in the central nervous system and help speed relief of relapse-related symptoms. Some neurologists may have differing opinions as to when to treat a relapse, so patients may feel there is no reason to call the doctor’s office if the symptoms are relatively mild and do not significantly interfere with normal activities. Or, patients may feel they won’t be taken seriously by the doctor, so they don’t bother to call.

However, every relapse is an important event to acknowledge and report.  Even if a patient does not need or want steroids, it is recommended that their fluctuating symptoms be documented in their medical record.  Often, treatment decisions are made by examining your past medical history, including the number, frequency, and severity of relapses the patient has had.  Although no disease-modifying therapy (DMT) has been shown to be 100 percent effective in preventing relapses, experiencing too many relapses (even small ones) may indicate that the patient’s DMT is not working as well as it should.

Read this post in its entirety:

When to Report MS Relapses to Your Doctor

Thursday, November 21, 2013

Disease-Modifying Therapies (DMTs) Help to Slow Down MS

To alter the course of the disease, a number of disease-modifying therapies (DMTs) are available which are designed to help slow down the long-term progression of MS.  These treatments, or disease-modifying agents, have been shown in clinical trials to be effective in decreasing the frequency of relapses and the number of lesions in the brain or spinal cord.  Some of these medications have also been shown to slow down the rate at which a person with MS accumulates disability.  Using DMTs is one way to fight back against MS.

Read this post in its entirety:

Slowing Down the Long-Term Progression of MS by Using Disease-Modifying Therapies (DMTs)

Thursday, November 14, 2013

Massage Therapy Wins Over Exercise in Reducing Pain

Exercise is important for keeping our bodies healthy no matter what disease we may have, but especially important if you have MS. Exercise can help to combat some MS symptoms by improving endurance and stamina, cognitive function, strength and flexibility, pulmonary function, fatigue, psychological health, and overall wellbeing.

But did you know that massage therapy may be as effective as exercise therapy in combating certain MS symptoms?
- See more at: http://www.healthcentral.com/multiple-sclerosis/c/19065/164097/effectively-shows#sthash.j8o6StSx.dpuf
Exercise is important for keeping our bodies healthy no matter what disease we may have, but especially important if you have MS. Exercise can help to combat some MS symptoms by improving endurance and stamina, cognitive function, strength and flexibility, pulmonary function, fatigue, psychological health, and overall well-being.

But did you know that massage therapy may be as effective as exercise therapy in combating certain MS symptoms?

Read this post in its entirety:

Massage Therapy Reduces Pain More Effectively Than Exercise in Multiple Sclerosis, A New Study Shows

Tuesday, November 12, 2013

Kindness of a Child's Heart

A few years ago, my 19 year old cat Joshua died.  I had gotten Joshua just when he was a little kitten during my senior year in college.  He was my buddy and close friend who was by my side as I moved from state to state to attend different graduate schools and finally as I ended up in Northern Virginia.  We were very close.  We had the type of relationship where I only had to click nail clippers a few times and he would jump up on my lap to have his nails trimmed.

When Joshua approached the end of his life, his health had not been good for quite some time.  I was devastated when he finally died on a Friday morning with the help of a visiting veterinarian.  I cried and cried.  On Monday, I tried to teach my normal lesson schedule but I couldn’t stop tearing up and one of my younger students turned and saw me.  I ended up canceling lessons for the remainder of the week after that.

Later that week, there was a knock at my front door.  I was greeted by a student holding a small bouquet of flowers she had picked and a card she had drawn.  In the center of the card was a drawing of me and all around the picture were hearts of many sizes and colors.  Her message was clear: You are surrounded by love!

Read this post in its entirety:

Surrounded By Hearts and World Kindness Day

Thursday, November 7, 2013

Carnival of MS Bloggers #149

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

by Alison of One Shot Two Shot Red Shot Blue Shot

I seriously do not know how parents who both work outside the home full time do it.

I "work" at home, and we still find it incredibly challenging to ensure that our nine-year-old keeps up with all the homework she's getting. Luckily, because she and Graham come home to me after school and not to after school care, I can encourage her to do some of it right away. This has actually happened on several occasions. But even if she doesn't get to it until after supper, because I'm home we are usually done with supper by 5:30 or 6:00 and there is still an hour before bed time rituals begin.

I know that some children are not even picked up from their caregivers until 5:30. Supper in homes where both parents have outside jobs may not even get onto the table until 6:30 or 7:00.

If my daughter is too tired to finish her homework after supper or, as on Tuesday evenings, has an outside activity to attend (Hip Hop Dance), she is lucky to have me here in the morning to make sure she sits down and completes what she didn't finish the night before. Quite often she breezes through homework in the morning that she was struggling with the evening before.


We are so lucky to have the luxury of time. Although it is not an ideal situation financially (!), the fact that my illness makes working full time outside the home a virtual impossibility and definitely a bad idea, may just be a blessing for our family. True, we only have one car and will probably never be able to afford a bigger house, but we have enough to live comfortably. I am here with a listening ear when the kids come home from school, and I walk them to school in the mornings.

My husband benefits from this situation as well. We don't have any childcare expenses which, even for after-school care, can be substantial, and he doesn't have to worry about taking time off when they are sick, because I'm here to look after them.

Although I'm sure there will be things that the kids will regret about the fact that they had a mom struggling with MS, at least it has given me the opportunity to be present for them in a way that a lot of my friends can't be. No doubt they will be sick of me by high school, but I will still be here, keeping an eye on them, checking on homework, making dumb jokes and cooking chicken nuggets for supper.

~ Alison


This concludes the 149th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 5, 2013. 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 3, 2013.


Thursday, October 31, 2013

Please, Let's Just Schedule Infusions at the Hospital


I wasn’t sure what to expect at the new office, but at least I knew that things shouldn’t change too much since the important relationship I already had was with my rheumatologist.  Of course, there was lots of paperwork to fill out and I brought a copy of my medical records which had been requested from the other medical center.  I realized that I would need to learn this office’s procedures, but it was a bit odd not recognizing any faces as I checked in.

When I did get back to see my rheumy, the visit went smoothly.  I didn’t really have many complaints which gave her the extra time to hound me about exercising more.  (I know that I need to do that for my own well-being, not just for my arthritis.)  We also talked about scheduling the next round of Rituxan infusions.

Read this post in its entirety:

Getting What You Need May Not Be So Simple When Your Doctor Moves Offices

Thursday, October 24, 2013

Living with RA: Finding a Treatment You Can Stay With

In a recent study, researchers at the Hospital ClĂ­nico Universitario de Valladolid, Spain, took a closer look at the records of RA patients who were treated with select anti-TNF therapies between January 2011 and January 2012.  Researchers gathered demographic information and therapy assessments from medical and pharmaceutical records.  Staying on a treatment (also called drug survival or persistence of therapy) was presumed to be an overall marker of treatment success.

The primary objective of the study was to assess how long patients stayed on a particular anti-TNF drug and to identify potential predictors of drug discontinuation.  The overall goal of the study was to confirm whether or not current clinical practice is appropriate in terms of the choice of anti-TNF therapy for treating RA patients at this clinic.

Read this post in its entirety:

Enbrel vs. Remicade vs. Humira: Which Anti-TNF Drug Do RA Patients Stick With Longer?

Thursday, October 17, 2013

When Reporters Don't Report Much

The news coming out of medical conferences can be exciting for the MS community.  The results of clinical trials are often released at these events.  Snippets of groundbreaking research can be hidden in the abstracts and poster presentations.  Publicity surrounding research is often considered good for scientists, their academic institutions, and the MS community at large.  Even if nothing comes of preliminary research, it is beneficial to be able to see how that research had developed over the years in retrospect. - See more at: http://www.healthcentral.com/multiple-sclerosis/c/19065/163535/opinion-reporting#sthash.0t5EeWfO.dpuf
The news coming out of medical conferences can be exciting for the MS community.  The results of clinical trials are often released at these events.  Snippets of groundbreaking research can be hidden in the abstracts and poster presentations.  Publicity surrounding research is often considered good for scientists, their academic institutions, and the MS community at large.  Even if nothing comes of preliminary research, it is beneficial to be able to see how that research had developed over the years in retrospect. - See more at: http://www.healthcentral.com/multiple-sclerosis/c/19065/163535/opinion-reporting#sthash.0t5EeWfO.dpuf
The news coming out of medical conferences can be exciting for the MS community.  The results of clinical trials are often released at these events.  Snippets of groundbreaking research can be hidden in the abstracts and poster presentations.  Publicity surrounding research is often considered good for scientists, their academic institutions, and the MS community at large.  Even if nothing comes of preliminary research, it is beneficial to be able to see how that research had developed over the years in retrospect. - See more at: http://www.healthcentral.com/multiple-sclerosis/c/19065/163535/opinion-reporting#sthash.0t5EeWfO.dpuf
The news coming out of medical conferences can be exciting for the MS community.  The results of clinical trials are often released at these events.  Snippets of groundbreaking research can be hidden in the abstracts and poster presentations.  Publicity surrounding research is often considered good for scientists, their academic institutions, and the MS community at large.  Even if nothing comes of preliminary research, it is beneficial to be able to see how that research had developed over the years in retrospect.

The news coming out of medical conferences can be exciting for the MS community.  The results of clinical trials are often released at these events.  Snippets of groundbreaking research can be hidden in the abstracts and poster presentations.  Publicity surrounding research is often considered good for scientists, their academic institutions, and the MS community at large.  Even if nothing comes of preliminary research, it is beneficial to be able to see how that research had developed over the years in retrospect. - See more at: http://www.healthcentral.com/multiple-sclerosis/c/19065/163535/opinion-reporting#sthash.0t5EeWfO.dpuf
Read this post in its entirety:

Opinion: Reporting on the "Not So Much News" News

Tuesday, October 1, 2013

Scientists Say 110 Genetics Variants are Connected to MS Risk

In the largest genetics study of its kind, researchers from around the world as part of the International Multiple Sclerosis Genetics Consortium (IMSGC) have identified an additional 48 genetic variants which may influence the risk of developing multiple sclerosis.  This work nearly doubles the number of known genetic risk factors, bringing the total to 110, and underlines the role that the immune system plays in the development of MS.

Published online September 29 in the journal Nature Genetics, the study, “Analysis of immune-related loci identifies 48 new susceptibility variants for multiple sclerosis,” represents the work of an international team of 193 investigators from 84 research groups in 13 countries.  The study, which was led by Jacob McCauley, Ph.D., of the University of Miami Miller School of Medicine, was funded by more than 40 agencies and foundations, including the Wellcome Trust, the National Institutes of Health, and the National MS Society.

Researchers used sophisticated genotyping technology known as ImmunoChip which was specifically designed to target a select set of genetic variants linked to one or more autoimmune diseases.  IMSGC researchers used the ImmunoChip platform to analyze the DNA from 29,300 individuals with multiple sclerosis and 50,794 unrelated healthy control without MS.  In addition to identifying 48 new genetic variants, the study confirmed and further refined a similar number of previously identified genetic associations.

Read this post in its entirety:
International Research Consortium Identifies 48 New Genetic Variants Associated with MS Risk

Thursday, September 26, 2013

Using Yoga for Mental Wellbeing

Yoga helps me to stay focused and in-tune with my body.  So often I will find areas of tightness which need to have the courage to “let go.”  If you are wondering if I mean this physically or mentally, it’s a bit of both.  Unless I’m listening to a yoga instructor who has the class doing something which I absolutely am incapable of doing, I am traveling within with my mind.

The yoga class I’ve most recently attended locally is called the “Gentle Yoga” class.  We do a lot of stretching and gentle movements.  After a 90-minute session, I always feel better.  My joints seem to have more space in them as does my mind.

To be honest, it’s the calming the mind aspect of yoga which I find more challenging.  I am not one to not be thinking about something.  I’m always thinking about something.

Read this post in its entirety:
Living with RA: Get Up and MOVE IT! Exercising with Yoga to Stay Centered

Sunday, September 22, 2013

Treatment Decisions: Is Your MS Stable?

New research suggests that it may be safe to stop taking disease-modifying medication if your MS has been stable for an extended period of time.  In a recent study published in the the journal Arq Neuropsiquiatr, researchers in Brazil followed a group of 40 patients with relapsing-remitting MS for whom their disease had been clinically and radiologically stable for more than five years and who voluntarily chose to stop using disease-modifying therapy.

Patients included in the study had continuously used one of the following immunomodulatory disease-modifying drugs - Avonex, Betaseron, Rebif, Copaxone - for more than 5 years and up to 14 years.  To be included in the study, participants had to be disease-free for at least 5 years while on therapy.  Disease-free activity was defined as no clinical relapse, no sustained increase in disability as measured by EDSS (expanded disability status scale) score, and no new gadolinium-enhancing or active lesions as seen on MRI scans.

Read this post in its entirety:
MS and Medication Decisions: Can I stop taking my disease-modifying drug and still be okay?

Thursday, September 19, 2013

Carnival of MS Bloggers #148

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

By Miss Chili's Hot Stuff

Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.

Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.

Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk want to participate in, and not just once but as often as there is space available.

Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it.


from Miranda's MS Blog

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

george Jelinek et al, breakfast OMS meetingSo in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?
a) I didn’t know it all… & I’ll share my new understandings here,                                b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!
for this, it helped having a little cell, with no TV or internet connection….

Prof Jelinek & his wife SandraSo, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

prof jelinek teaching UK retreatHere’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation
I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.


This concludes the 148th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 3, 2013. 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, October 1, 2013.

Friday, September 6, 2013

NIH Funds Genetic Research into Cause of Nerve Damage in MS

The Benaroya Research Institute at Virginia Mason (BRI) was awarded a $1.9 million grant from the National Institutes of Health (NIH) to study molecular changes in the human genome which may be responsible for damage to the central nervous system as seen in multiple sclerosis.

Researchers aim to explain how and why certain white blood cells contribute to the development of MS.  “We want to understand the factors that make these cells target the spinal cord and brain to cause disease,” said Estelle Bettelli, PhD, BRI Assistant Member and co-principal investigator of the study in the August 4, 2013 press release.

"With Dr. Bettelli's research advances and with the new technological innovations in genome research, we can look at specific marks present in the genome of these cells and understand how they are generated and how they can be controlled," says co-principal investigator Steven Ziegler, PhD, Director of the BRI Immunology Research Program.

Read this post in its entirety:
NIH Awards $1.9 million to Find Genetic Markers to Explain How White Blood Cells Cause Damage in MS

Thursday, September 5, 2013

Carnival of MS Bloggers #147

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

By Jennifer Digman

Not so long ago, it really would puzzle me when someone would tell me what an inspiration I was. Generally, I would smile, say thanks and think to myself, “You really should strive to find inspiration in something a little higher than me and my Multiple Sclerosis.

I mean, has anyone ever told you what an inspiration you are? An inspiration not because of your latest accomplishment but because you’re living with MS or some other illness.

Really, like you had a choice in that matter?

It wasn’t as though some great mystic force said, “How about living with a chronic illness for the rest of your life?” and your reply was, “Why, yes. That sounds good like a good plan.” And your inspirational life began.

But it was my amazing husband, Dan, who made me realize people are not inspired by my just having Multiple Sclerosis: it is how I live with the disease that inspires others. My choice to move forward optimistically and with purpose regardless of what the disease dishes out may inspire some. I don’t live hoping to be an inspiration, but what a nice side effect to the decisions I make.

Honestly, there are times when my positive attitude tank gets a little low, too. Fortunately I’ve realized that inspiration can be found all around us. For example, after finishing my graduate degree and unburying my nose from textbooks, I’ve rekindled my relationship with my neglected television and have found some great sources of inspiration.

The Sundance Channel program Push Girls follows the lives of five women who have been paralyzed by either illness or accident. The reality show chronicles the day-to-day challenges and triumphs that Angela, Tiphany, Mia, Auti and Chelsie each encounter. Since my becoming wheelchair dependent, I had never seen such honest, accurate depictions of life with a chair.

My beautiful niece Elizabeth joins me on my Standing Frame
My beautiful niece Elizabeth joins me on my standing frame.
These ladies are role models, inspirations and my peer group all at the same time. When Mia or Chelsie used a standing frame, they were strengthening their muscles—not thinking, “Hope this inspires someone.” But it did inspire someone – me. After buying my own used standing frame, I now stand 2 to 3 times a week for 30 minutes at a time. My circulation and breathing has gotten stronger. I feel more powerful and better about my abilities.


Just as the summer season ended for Push Girls, I slipped into Lifetime’s hit fashion show Project Runway another one of my other TV favorites! But never did I expect this program would introduce me to a designer who inspires me in my life with MS.

Justin is a 27-year-old fashion designer who is deaf. He is incredibly talented and lets his work speak for itself. As he has gotten closer to his fellow designers, Justin has taken the opportunity to gradually educate them about his deafness and the deaf culture. His opening up to others about his realities is the same way I aspire to help others understand MS and what it’s like to live with this chronic illness Dan and I share.

This is why he and I advocate, blog, speak and lead a self-help group. In addition to helping to better our lives, these activities also provide opportunities to help others move forward with theirs.

Like all five Push Girls and Justin, I don’t believe any of us are trying to be inspirational. We are just living our lives as best we can—much like so many of you who are inspiring so many others just by the way you live.

Do you ever think you are an inspiration to others? Whether or not you realize it, you are.

Every day.


This concludes the 147th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 2013. 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, September 17, 2013.

Thursday, August 29, 2013

Migraine as an Early Symptom in MS

In two recent studies, researchers suggest that new or worsening migraine which doesn’t respond to treatment should be considered as a possible symptom of multiple sclerosis, especially early in the disease.

Researchers in Rostock, Germany, conducted a study investigating headache symptoms in patients already diagnosed with MS.  Their aim was to detect the prevalence of headaches, and of subtypes of headaches (such as migraine, cluster, and tension-type headache), in an unselected group of MS patients (n=180) and to isolate the possible influencing factors for those headaches.

The group comprised 125 women (69.4%) and 55 men (30.6%), which included patients diagnosed with relapsing-remitting MS (n=86, 47.8%), secondary progressive MS (n=67, 37.2%), primary progressive MS (n=24, 13.3%), and clinically isolated syndrome (n=3, 1.7%).  Patients were chosen, regardless of gender, age, or disability.

Read this post in its entirety:
Migraine and Headache as Early Symptoms of MS

Thursday, August 22, 2013

Carnival of MS Bloggers #146

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

by Joan of A Short in the Cord

It has been over two months since I returned from my trip (aka my “heroic journey”) to Provence in southern France.  

I continue to process my feelings and experiences from that great adventure, but think it's time to share some things with you because people keep bugging me asking me, "was it a good trip?" :-)

Okay, so I brought back some things: postcards from the Chez Christine cafĂ© in Saignon, bookmarks from an art gallery in Bonnieux, jams from a cherry festival in Casenuve, tapenades and placemats from a souvenir shop in  Fountain de Vaucluse.

I ate tender and tasty lamb wrapped in eggplant in St. Pantaleon les Vignes, and rabbit in Apt.  I tried goat cheese, sheep's cheese, French coffees and wines.  I marveled at the amazing geology of the mountains, explored the trees and plants, and tried to identify birds.  I hiked, I drank, and I sat by the pool having deep conversations with deep people.  I said "wow" and "yum" a lot!  It was exotic and exciting.

But I was exhausted for almost the entire trip.  I'm not complaining.  Really.

I'm reminded of the song "My Body" by Young the Giant, which goes "…my body tells me, 'no,' but I won't quit 'cause I want more." And I wanted more of the experience of France.

I had physically prepared for this trip by working out and increasing my time and distance on the treadmill.  But I also studied meditation and practiced awareness, and worked on living in each moment. 

I had no problem with the walking, the climbing, the carrying luggage.  But I did have a problem with fatigue from over- stimulation, communicating in another language, dealing with disruptions in routine.  By the third day, I wrote in my journal that I was scared, didn't think I could make it to the end of the week because I was just so tired, so overwhelmed.

But then my zen training took over and I told myself to live in the moment.  Just this moment.  Right now.  Only right now.  Don't worry about the rest of the week, worry about just this moment.  And I can get through this one moment.

I savored each moment.  Then another.  Then another.

As I mentioned earlier, I brought back a few souvenirs (and pictures).  But they really don’t matter.  What matters is that I brought back a desire to continue to have fresh experiences, a willingness to try new foods, and a renewed confidence that I can go out in the world again with multiple sclerosis and debilitating fatigue.  Even if it's just for one moment.

So, YES, it was a good trip!


Back to Home Page

PS - In case you missed it, here are links to my Heroic Journey:
Part 1 - The Call
Part 2 - After the Call Is Answered
Part 3 - What to Take on a Heroic Journey

This concludes the 146th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 2013. 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, September 17, 2013.

Thursday, August 15, 2013

Avoiding Accidental Drug Overdose

It can be helpful to develop an organized system of handling your medications.  Some people like to use the weekly pill organizers which contain individual pockets for each day of the week into which you can place the pills you need to take at regular intervals during the week.  Some pill organizers are more specific and contain separate A.M. and P.M. pockets for each day of the week.  These organizers can be very useful.

However, I have a number of medications which are taken on an as-needed basis (such as pain medication) or a once-weekly basis (such as methotrexate).  As RA is associated with increased levels of depression and anxiety, you may have other drugs on hand such as the anti-anxiety drug alprazolam (Xanax) as I do.

Last month, I had a scary experience when I mistakenly took 10 pills of alprazolam instead of my weekly dose of 10 pills of methotrexate one late Friday night.  There were several contributing factors to the mistake.

Read this post in its entirety:
Medication Safety: Watch What You Put in Your Mouth

Wednesday, August 14, 2013

Vitamin D Deficiency and Depression in MS

Higher levels of depression and fatigue are not significantly correlated with vitamin D deficiency in Iran, says a new study.

Researchers from the Department of Neurology at Isfahan University investigated whether lower levels of vitamin D were associated with depression or fatigue in MS patients in Iran.  In 200 MS patients [154 female (77%) and 46 (23%) male], the relationship, if any, between FSS scale (measuring fatigue), BDI-PC score (measuring depression), EDSS (measuring disability) and low Vitamin D status were determined (Ashtari, 2013).

The prevalence of low vitamin D status was 48.5% (97/200).  Researchers found that low vitamin D status was associated with depressive symptoms in MS patients. However, results did not reach statistical significance.  There was also no significant correlation between vitamin D status and fatigue symptoms.

Read this post in its entirety:
Is Vitamin D Deficiency Associated with Fatigue and Depression in Iranian MS Patients?

Thursday, August 1, 2013

Ordering Household Supplies in Bulk

In running a music studio at home, one which is equipped with a private bathroom, it is important to keep well stocked on basic supplies such as toilet paper, hand soap, facial tissue, and towels.  As I have taught each piano student to wash their hands before every piano lesson, helping to not only keep the piano keys clean, but to cut down on germs and illnesses, the studio can go through a large volume of paper towels.

Rather than making several trips to the store throughout the year, using gas, time, and energy, I discussed the ease and benefit of ordering bulk supplies online a long time ago.  It is really very simple.  The same large office supply stores or discount stores which offer annual back-to-school sales frequently offer free shipping for online orders over a certain cost. 

Read this post in its entirety:
Easy Living with Chronic Disease: "Back to School" Anytime of Year

Thursday, July 25, 2013

Carnival of MS Bloggers #145

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

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

This concludes the 145th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 22, 2013. 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, August 20, 2013.

Tuesday, July 23, 2013

Can RA Cause Changes in Your Voice?

According to a new literature review in the journal Autoimmune Diseases, the prevalence of laryngeal symptoms of RA has risen from up to 31% of RA patients in 1960 (Lawry, 1984) to 75% by the end of the 20th century (Hamdan, 2013).  At least a portion of this significant increase is likely due to increased awareness and better clinical diagnosis.

Symptoms of larynx involvement caused by RA include odynophagia (painful swallowing), foreign body sensation, dysphagia (difficulty swallowing), sore throat, lump sensation in the throat, change in voice quality (e.g. hoarseness, breathiness, vocal fatigue), referred otalgia (earache), and respiratory symptoms (e.g. shortness of breath, decreased exercise tolerance, stridor, dyspnea, respiratory distress). In rare cases, patients with RA may also present with symptoms of croup.  Patients may also be asymptomatic.

Read this post in its entirety:
Hoarseness and Shortness of Breath: Is Your RA the Cause?

Thursday, July 11, 2013

Fighting Heat Sensitivity on Vacation

Summer time is in full swing here on the East Coast.  We’ve had temperatures in the 80’s and the grass is growing like weeds.  Actually we do have some weeds where there shouldn’t be since we’ve been getting tons of rain during the past month.  Definitely not drought weather here.

But with heat and rain (and humidity) come annoying MS symptoms and potential pseudoexacerbations.  If you are heat-sensitive (like me), then a trip to the beach may be a challenge.  I’ve been very fortunate lately and my MS has been fairly quiet.  But in gathering supplies for the trip, I’m being confronted with the reality of what it may take to have a good time.

On the top of my list is a battery operated fan which I picked up on clearance at a department store years ago for less than $2.  Actually I bought two.  Best summer money spent ever.  They even came in handy when we lost power last year during to storms and thus lost air-conditioning for a few days.

Read this post in its entirety:
Headed to the Beach with MS

Thursday, July 4, 2013

RA Treatment: Triple Therapy

Rheumatologists will often begin their newly diagnosed patients on conventional DMARDs such as methotrexate (MTX), sulfasalazine (SSZ), hydroxychloroquine (HCQ), each alone or in any combination.  In fact, when combining the three drugs, it is commonly known as “triple therapy” and is often used as a step-up in treatment after trying MTX alone.

Triple therapy as a treatment approach to RA has received recent attention in the news due to a study published in the New England Journal of Medicine (NEJM) on June 11, 2013.  In this study, no significant difference in disease activity was demonstrated in patients who received triple therapy as compared to those who received treatment with etanercept + methotrexate. All the patients prior to enrolling in this study had experienced active disease despite methotrexate therapy alone (O’Dell, 2013).

In a similar study, the Treatment of Early Aggressive Rheumatoid Arthritis (TEAR) study, patients were randomly assigned to MTX monotherapy (alone), triple therapy, or MTX + etanercept with no significant difference in primary outcome (based on Disease Activity Severity DAS28 scores) between the latter two groups. However, x-rays did show more disease progression in the triple therapy group.

Read this post in its entirety:
What is the Role of Triple Therapy in RA?

Thursday, June 27, 2013

Carnival of MS Bloggers #144

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

by Rex Parker of Biking MS

The reason I support the National MS Society is well-known to readers of this blog. There are so many other compelling stories from people I'm connected with that I wanted to start sharing them with you...

The more of these stories I hear, I realize that their stories are mine and mine is theirs - we're all connected. So many families struggle to cope with MS. So many of us have lost family members and close friends. I hope that many of you recognize your own struggles in these stories, and get the same sense of support and camaraderie that I do. And a sense of hope that we can all work together to realize a world free of MS.

First off here's my friend Megan Nettleton, Community Relations Specialist for the National MS Society here in Boise. Megan's story is well-known within the MS community here in Boise. Megan is married to Chris Nettleton, the sports director for KBOI Channel 2. Chris suffers from MS, and has been a vocal and active supporter of MS Society events here in town, often lending his talents to emcee events. 


Megan and Chris
Megan's story is interesting to me, as she has a unique personal and professional connection to the MS Society. Here's her story, in her words...

“Before working at the National MS Society, I managed a bank for six years. I was never one to believe that anyone could truly love their job, but I am a believer now. My husband has MS, so it is an amazing feeling going to work and ultimately helping my husband every day! Who else gets to say that they get to do that? And now, it is not just about him anymore, but I now work here for all the amazing people I have met along the way, people like Rex! People that give so much of themselves without a second thought. That is why I support the National MS Society…because they support me!”

Me and Megan at "Meet Me Monday"
Just think about what most people do when faced with an MS diagnosis in the family. Sure, there are phases of anger, denial, depression, etc. But Megan not only went about arming herself with the knowledge she'd need to help and support Chris - but she also went to work for the one organization that will give them the most support during this ongoing fight. Megan has the unenviable task of being a one-person shop here in Boise, and I appreciate the positive energy and dedication she brings to the job.


And, to give you more insight into what Chris and Megan have to deal with, I swiped the following post from Megan's Facebook page. This is something she wrote when raising funds for her Walk MS Boise team...

"I was thinking today that a lot of you probably don't know very much of my husband's story and his multiple sclerosis diagnosis. And here I am asking you for donations quite a bit lately, so I thought I would share a little bit about his journey:

In 2008 his feet went completely numb. His doctor thought it couldn't possibly be MS because it was in both feet equally - so he went through a lot of testing, including electro-shock therapy on his legs, and muscle tests that involved shoving a 3-inch needle into his calves and moving it around to see if his muscles were working properly. Crazy, I know. Then he had an MRI and based on those results, his neurologist told him that he either had a brain tumor or MS. It is weird to say this, but luckily, it was MS and not a brain tumor. 

Because my husband is an all-or-nothing kind of guy, he went on a therapy immediately, which entailed me ramming a 3-inch needle intramuscularly into his thigh. And any of you that know my husband - he is majorly phobic of needles, but this was something we did for the next 2 1/2 years. And then one day he went in for a generic check-up, and surprisingly his liver numbers were way elevated. They discovered that the therapy had started to damage his liver, so he had to immediately go off of it. His only other option at this point for therapy: a DAILY shot. Great. But, my husband bravely endured it for one month, even though he had a severe skin reaction that caused his body to be covered in red, itchy, sore welts that never seemed to go way. 

What other choice did he have? Remember...all or nothing! 

It was then that the first pill for people with MS was released...TRIUMPH! He has been on it ever since, and has done very well! And this is all thanks to research...which brings me to my conclusion: please donate to our Walk MS Boise team to help raise money for research so more therapies may one day be available!"

Of course, the funds we are raising for Bike MS contributes to the same research that helped provide new therapies for Chris.

Thanks for sharing that, Megan! Look for more "other voices" stories over the coming weeks...

This concludes the 144th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 11, 2013. 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, July 9, 2013.

Sunday, June 23, 2013

Muscle Spasms and MS

For a few days back in June, I had a collection of muscles around my hip and at the top of my thigh which have been causing a great deal of pain and a lopsided limp.  At first, I thought that maybe pushing a REALLY heavy grocery cart, even for only a fraction of the time around the grocery store on Wednesday, may have caused an avalanche of spasticity.

Then, my leg and hip were so painful that I finally filled a prescription my nurse practitioner had given me in April (for diazepam) to combat painful muscle spasms.  I’ve tried it and so far, it has made little difference.  But each day has gotten a bit better as long as I limit how much I stand and walk around the house.  Today the spasms seem to be almost gone.

This episode of muscle spasms and pain has been rather annoying but nothing which required a trip to the doctor.  (Although if it had continued to get worse, I would have been seriously considering it.)  I had a little talk with my muscles and we tried to come to some sort of agreement.  I will try to remember to do things within my strength and ability without straining large muscle groups, and my muscles will attempt to remain non-spastic.  That seems fair enough to me.

Read this post in its entirety:
Muscle Spasms, Relationships, Patience and MS

Thursday, June 20, 2013

Heart Disease, Not MS

MS is such a bizarre disease which affects the body in many different ways because it disrupts the central nervous system (CNS) which is the headquarters of the body’s electrical system.  Sabotage the electrical impulses traveling to and from the brain and it’s hard to predict just what might happen.

Let me tell you about two MS friends.  Each had a heart attack, but only one had a positive outcome.  The first friend, Laura, shares that she had a heart attack and was fortunate enough to get help quickly and suffer little heart damage.  She says, “dumb luck and listening to the voices that told me something was wrong sent me to the ER before my heart attack happened and it occurred in the hospital while I was already hooked up to nitroglycerin.”


Read this post in its entirety:
Listening to your inner voice: When it isn't MS but Heart Disease

Thursday, June 13, 2013

Carnival of MS Bloggers #143

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

by Annettia at My Life According to MS

I still have days where I forget about my new reality.  I guess sometimes it is quite easy for me to forget.  I mean, minus the bone-numbing fatigue and the almost peeing in my pants at least once a day and the excruciating nerve pain I really can forget that I have different abilities.
I mean, I guess that’s expected, right?  I am still considered a newbie…I think.
So, sometimes I forget about my ability status.

Until I am reminded…

Usually by that cold, hard, deep blue rear-view mirror placard I keep in my purse.
This recently happened to me.  I’ve been feeling quite “normal” whatever that means.  Then this week it was a tad humid and I’m kind of fighting a cold or allergies or something.  That always messes with my abilities.  Then it was a bit warm at work.  And I had to walk quickly.  And I started to feel off…

I always start to get a little bit scared and worried when that feeling happens.  You know, that feeling where my legs get a little weak.  And this isn’t the good weak like I just saw my crush walking toward me.  This is the weak where I may not be able to walk to my car after work.  Or the kind of weak where I may need my mom to wheel me out of Target in the shopping cart.  Or the kind of weak where I have to find a seat in the middle of a store and rest for a bit before I move on.

Then, the unthinkable happened.  I went to lunch with my work team to celebrate a coworkers baby.  My supervisor sat right next to me. 

Now, remember, I keep my handicap placard in my purse in case I’m ever not driving and I need it.

I am normally very aware of the bright blue placard in my purse and do a fabulous job at hiding it from people that do not yet know of its existence.
Until this day.

Oh yeah, I totally forgot that I was with an entire TEAM of people that are not yet aware of my ability status.  And I am not yet ready to inform this team of people.  And my supervisor was right next to me.

As I was shuffling through the contents of my purse looking for my wallet, my cold, hard, blue placard found its way to the top of my purse and poked its head out of the zipper.  I noticed my supervisor discreetly glance at my purse right at that moment.
I think I was found out.

But she didn’t say a word to me.
We are all therapists!  Come on.  What would she say?  “Why are you a cripple?”  Or, “You don’t look like you need that!”  I doubt any of those words would come out of her mouth.

But I still felt that fear.
I made it through the rest of the day without any other incidences involving my ability status and actually forgot about the entire scenario until I was driving home that evening. 
That’s when it hit me.
I have a disability.
I honestly, truly, 100% have a permanent disability.

What. The. Hell.
And cue the uncontrollable tears. 

How do I forget these things?  It’s not like MS is easy to forget.  Especially when it pervades every single fragment of my life.  It’s not as if MS is something that just fades into the distance and can easily be forgotten.  It’s not like I don’t wake up every single morning wondering if this will be the day when my next relapse hits or the day where my legs decide to not work again or the day my eyes decide to develop optic neuritis.

But the fact of the matter is…I often forget.
Until I am reminded by that cold, hard, blue truth.
I think I would forget more actually, without that placard.
Maybe I have a lesion on that part of my brain that should remember about my disability!

This concludes the 143rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 27, 2013. 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, June 25, 2013.