Moving

Amy's MS Blog is in the process of moving!

I'm consolidating my two blogs, Amy's MS Blog and The MS Mom Blog, and moving them over to WordPress.  The new URL is http://www.themsmom.com/.  If you go over there now, you'll see a work in progress - the old posts are there, but I'm working on updating the format.  It's just like a real life move.  I'm unpacking boxes and figuring out where things belong.  I'll soon have it set up so that the syndication, following, RSS feeds, etc. are available options.

In the meantime, I've published a first person article on Yahoo about my life with MS: http://voices.yahoo.com/multiple-sclerosis-me-unwelcome-companion-11533120.html.  Other than that, I've been like most Americans lately - fighting the heat.  The temperatures have been bad enough for most people, but for those of us with MS, it has been a nightmare.  I especially feel for those folks who've been without power.

Real Housewives of North Carolina

On this week’s episode, Amy gets Botox.

Yup, I did it.  I never thought I would voluntarily allow botulism to be injected into my body.  But like a lot of women, my opinion of it changed as I grew older.  The biggest reason for that?  Because I found out there are other reasons to get Botox injections.  It’s not just for shaving off years anymore.

There are actually three approved uses for botox in the treatment of multiple sclerosis:

1. Botox is injected in the legs to address lower body spasticity.
2. Botox is injected in the arms to address upper body spasticity.
3. Botox is injected in the bladder to address issues with urination urgency.

The third one makes me go “Ew.”  It’s one thing to think about injecting a limb, but the bladder?  My skin crawls just thinking about it. 

Fortunately for me, I was dealing with the first situation, lower body spasticity.  A common treatment option for spasticity is baclofen, which can be taken by pill up to four times a day or delivered into the bloodstream via pump.  Since my leg still locks up on the maximum recommended pill dosage, my neurologist referred me to a rehabilitative specialist who could administer the Botox.  It usually takes about a week to realize the benefits of the shots, and they last for about three months.

So how am I doing?  Too soon to tell.  Meanwhile, I’m scheduling physical therapy to work on gait management and develop a home exercise program.  I’m hoping the Botox plus therapy plus home exercise equals walking minus a Frankenstein shuffle.

When a Celebrity Has MS

One of the biggest MS discussions in the past week has been Jack Osbourne's diagnosis with the disease.  Personally, I've run through a wave of emotions and thoughts as I've been processing the coverage of his diagnosis.

Sympathy - Jack's diagnosis came after experiencing decreased vision in one eye, which ultimately became so bad that he had no central vision in his right eye for a period of time.  I understand all too well what he experienced, since that's the symptom that led to my diagnosis.  The condition is called optic neuritis, which means that there is a lesion on the optic nerve that impacts vision in the affected eye.  When it happened to me, I did some online research.  The good news?  For a large percentage of optic neuritis sufferers, the vision returns to almost as good as it was before the episode.  The bad news?  A majority of optic neuritis sufferers either already have MS or will be diagnosed with it between 5-10 years of that episode.  I can only imagine the fear, confusion, and other emotions he was dealing with, based on what I dealt with myself.

Helplessness - Jack's mother, Sharon, has been expressing so many of the same things that my mom did when I was diagnosed.  Had she done/not done something during pregnancy/childrearing that could have prevented the MS?  It was painful watching my parents dealing with their helplessness as their daughter dealt with something that they couldn't fix.

Frustration - There are so many sources of frustration.  When you're diagnosed with MS, you're suddenly and vehemently reminded that you're not in control, that any moment your own body can turn on you.  There are ways to try and improve your situation, but there are no guarantees.  For me, one of the biggest frustrations is the misinformation and sensationalism about MS.  Is it an incurable disease?  Yes.  Is it debilitating to many of those striken by it?  Yes.

Is it fatal?  NO.  But that doesn't stop magazines like People Magazine from putting titillating headlines on its cover ("I won't let my son die") to feed the media frenzy.  A public figure's diagnosis can increase public awareness, but it can spread misinformation.  If you follow Jack Osbourne on Twitter, you'll see that he's as annoyed with this media tendency as I am.

Hope - Yes, MS is currently incurable.  Yes, right now there are limited options for treating the disease.  But there are a lot more options now than there were when I was diagnosed 10 years ago, and there are a lot more in development and testing.  While the current picture for MS is definitely not sunshine and roses, the end of the tunnel is definitely brighter than it has been.

Will there be a cure for MS in my lifetime?  Don't know.  And not sure that's the right thing to be looking for right now.  I keep thinking back to a speech by David Lander (Squiggy from "Laverne and Shirley") at an MS conference about 10 years ago.  There are so many different experiences with MS.  Would a cure help many or just a few?  What would it mean to "my" MS?    But I don't want the talk about whether or not MS can be cured to interfere with the efforts underway to address MS symptoms and relapses.

So what do I have to say about all of the media frenzy surrounding Jack Osbourne as he deals with this diagnosis?  Godspeed, my colleague.  We didn't want to be put on this journey together, but we are.  Don't let this illness get in the way of the joys with your loving family (especially that sweet new baby you have).

Hot Fun In The Summertime

Summer's here, and it brings a whole set of challenges.  How do we beat the heat?  How do we exercise safely?  

When I first got diagnosed with MS, my neurologist encouraged me to go swimming.  Last year, I found out what a disaster it could be to try and swim in the ocean.  Oh, the ocean water wasn't the problem - I just couldn't walk in the sand to even get to the ocean.  Dry sand + MS mobility issues = nightmare.  And the pool scared me.  Slip sliding everywhere did not appeal to me.  But I've learned that there putting together a simple survival kit alleviates my fears and makes it easier for me to enjoy pool time.

If you want to know what's in my survival kit, check out my article on the Yahoo Contributing Network here.  Yup, I'm a writer now.  I'd like to expand my blog from being a simple journal of one woman's MS and take a broader focus.  I'll be writing articles, following other blogs, and contributing to other sites as appropriate.  So if you have any ideas to help me increase my presence and participation in the online world, please let me know.

Walking the Tightrope

I'm watching Nik Wallenda walking the tightrope across Niagara Falls as I write this.  I wasn't going to watch this stunt, but I'm finding myself inspired by his walk.

He's talking to the reporters as he walks.  He's pumping his fist, kneels for the crowd, and still is moving forward.  This is such a wild journey, and it shocks me that he is able to keep his eye on the prize with all of the distractions.  The wind, the mist, the wet wire, the crowd, the reporters...all of them could be an excuse for failure.  Instead, he's smiling and keeps moving forward until he crosses to the finish.

One of his responses to the reporters just blew me away.  When asked about the challenge, he talked about all of the people facing obstacles and how they should just focus on the accomplishment.  He didn't dwell on the obstacles, he just kept moving forward.  He just told the Canadian border officials that the purpose of his trip was to inspire the people around the world, and he did that for me.

Take your time.  Step by step.  Sounds so simple, but it wasn't simple for him.  And those with multiple sclerosis have our own tightrope to walk every day.  It's so easy to lose the concentration, lose the focus, lose the faith.  It seems so easy to just focus on the next step, but we know it's not the easiest to execute in reality.  Wind gusts and mist are replaced by fatigue and spasticity.

Wallenda cited his training, his focus, his prayers, and his family as the reasons for his success.  While we can't be trained to conquer MS, we can learn ways to adapt and ease the struggle.  We may have trouble focusing sometimes due to cognitive challenges, but we can try to train our brain and take care of ourselves so that we struggle a little less.  We may feel horribly alone, that no one can understand what we're dealing with, yet we can reach out for support from friends, loved ones, and a higher power if we believe in one.

Take your time.  Step by step.  Sounds so simple, but it's not simple for us.  We may not have chosen to walk this tightrope, but it's the only path ahead for us.

Meal Planning

Meal planning can be an effective weapon in the battle against MS, allowing for increased nutrition and fatigue management.  Check out the latest post on The MS Mom:  Meal Planning 101.

MS Fatigue

CNN is featuring MS in a lot of health articles lately - good to see a major news outlet keeping MS in the forefront.  Here's a link to their articles about a common MS issue, fatigue: Fighting the Fatigue of MS.

World MS Day

Today is World MS Day.  The NC chapters of the National Multiple Sclerosis Society are honoring the occasion with an advocacy day.  Today is a day to contact elected officials and be one of the 1000 Faces of MS, personalizing what it means to live with or be affected by MS.

Here's my story:

I am a married mother of 2 small boys who was laid off from work
earlier this year.  I've been fortunate enough to have insurance that
covered all of the expenses associated with MS, such as MRIs, frequent
medical appointments, IV infusions, and numerous medicines.  But once
my COBRA runs out, I'll be faced with the horrible dilemma of not being
able to afford insurance, or not being able to get the treatment I need
to function. Trying to find work with MS is a struggle, since some
people equate trouble walking with trouble getting any job done during
the day (even a sedentary one).

This face of MS knows I have a lot to contribute, as a mom and an IT
professional with a master's degree and multiple certifications.  Like
so many people with MS, I don't want a handout - I just want a chance.
People with MS can still live and thrive, if they have the access to
the medical care and medicines.  During the 10 years since my
diagnosis, there has been so much progress in treatment options...but
there's still so far to go.

MS strikes people in the prime of life, when they still have so much to
offer.  Supporting MS research and treatment options is an investment
in a vital part of the population that has a lot to contribute.

I am one of the "1000 Faces of MS" and this is what living
with MS means me.

Mobility Devices

Walking can be a huge challenge for people with MS, courtesy of balance issues, spasticity, strength problems, and fatigue.  CNN has a slideshow on some of the mobility devices available for MS patients: Stepping Through Multiple Sclerosis.

I've used a few of these.
- The foot up was useful for foot drop issues, but it complicated those moments when I needed to let my foot down, like going down the stairs.
- I've relied on a cane quite a bit.  When I realized I'd need a cane, I told my husband I wanted a cool one.  Not only did he find me a beautiful one, but he got me a collapsible cane so I could keep it with me.
- I used an ECV (electric conveyance vehicle) when my family went to Disney World.  Without it, I would not have been able to enjoy the vacation with my family.  It was surprisingly easy to navigate, and I got to spend a lot more time in the parks.  There's no way I could have handled all of that walking.

MS Symptoms Article

Here's a good slideshow from Health Central summarizing more common MS symptoms:  10 possible MS symptoms.

Into the Tube

MRI.  One of my least favorite acronym when it comes to MS.  Besides, of course, the acronym MS itself.


It would be more accurate to say I have mixed feelings about MRIs.  Since I'm claustrophobic, the idea of getting into a loud, confining tube is not the way I'd choose to spend my time.  On the other hand, the MRI is such an effective tool for neurologists in monitoring MS activity that I've just had to suck it up and deal with my fears.

MRIs can provide useful information both about your current situation and your progression with the disease.  The MRI can show hot spots of activity that explain current or recent exacerbations.  For example, when I had a bout with double vision, my neurologist was able to see the lesion that had caused it.

For those of us on Tysabri, an MRI can provide even more valuable information.  My neurologist explained that sometimes MRIs can show early signs of PML.  The sooner PML can be detected, the better the chance of being able to treat it.

Comparing MRIs over time provides a lot of valuable information to your neurologist.  By comparing the most recent MRI to previous MRIs, neurologists can see whether there's been any changes.  If there are no changes, then that tells the neurologist that your current course of treatment is effective.  If there are changes on the MRI, then the neurologist can adjust treatment options accordingly.

So, how do you get through an MRI?

This is NOT the time to be brave.  If you have the slightest suspicion you are claustrophobic, tell your neurologist.  You could be prescribed a relaxant, or you could even be given a valium IV during the MRI.  If you get the meds you need to get through the MRI, it's better for everyone - you'll get through it faster, and the technician has a much better chance of getting good images.  Trust yourself and don't listen to others.  Before my first MRI, a family member told me I was being a diva, so I tried a medicine-free MRI.  I had to be pulled out of the tube sobbing.  Instead of getting the images, I had to reschedule for another date, which meant I wasted everyone's time.  On the plus side, I did enjoy saying "I told you so" to the family member who had questioned me.  Small benefit, I know.  Ever since, I've had my neurologist prescribe IV valium, and the MRI goes smoothly for everyone.

If you do get IV valium, you need to have a driver, and you're not supposed to drive or make any important decisions that day.  The receptionist told my husband he could take advantage of me that day.  When she realized how that sounded, she reminded him that she meant that for legal matters only.  He grinned.

You'll also be given a questionnaire to determine whether there's anything that could interfere with giving you an MRI (ex. if you've been shot).  Some MRI facilites have music (and in some cases videos) to help distract you during the procedure.  You'll change into scrubs and head into the room where the MRI machine is located.  At this point, I introduce myself to the machine by sticking out my tongue at it, but that's not required.  Then the technicians will get you set up for going into the tube.  If your doctor has prescribed valium, a doctor will come in and adminster that as well.  Before you go into the tube, they'll hand you a panic button that you can push if you need to come out of the machine before the procedure is complete.  Trust me, the button works - you don't have to test it for yourself.


You may hear the doctor and technician refer to contrast or dye.  In those situations, the technician will get a series of images, then inject some dye into your IV before taking the images again.  This dye will provide contrast, which could make it easier for anyone reading the MRI to detect lesions.

After your MRI, you may be given a CD with a copy of the MRI images.  Store this CD in a secure place.  If you go to another doctor or a different MRI facility, you'll be able to provide those treating you with some valuable history to help them treat you better.

P-M-L J-C-V M-O-U-S-E

I am JCV positive.

For most people, that doesn't mean anything.  But people on Tysabri, or those who know people taking Tysabri, will probably understand why I know or care about JCV.

Let me backtrack by explaining a few terms....

Tysabri - It's an MS drug administered every 4 weeks by IV infusion.  Unlike the earlier disease-modifying drugs, Tysabri is not self-administered, so no more shots at home.  You go to an infusion center every 4 weeks and sit in a comfy chair with an IV in your arm.  Then you stick around for another hour so the nurses can make sure you don't show any allergic reactions to the drug.  That's it.  You don't have to think about medicine for another 4 weeks.  No more Sharps containers, no more alcohol wipes, no more psyching yourself up at home to stick a needle into your own body on a regular basis.  During clinical trials, patients showed a significant reduction in relapses when taking Tysabri, and the drug was hailed as a huge positive step in the treatment of MS.

PML - PML stands for progressive multifocal leukoencephalopathy, a rare brain disorder that can kill or cause serious disability.  Unfortunately, one of the risks of taking Tysabri is an increased risk of developing PML.  That's a big reason why Tysabri is not usually the first drug of choice for MS patients and is usually recommended only after other disease-modifying drugs don't produce satisfying results. This risk is why Tysabri is one of those drugs with a black box warning detailing the potential dangers of taking the drug.  It's also why patients on Tysabri are closely monitored and can only have their infusions in IV centers participating in the TOUCH program which oversees the administration of the drug.

JCV - JCV is the virus that causes PML, and it's a virus to which a large percentage of the population (I've seen numbers ranging from 50-90%) have been exposed.  People taking Tysabri will be tested to see if they have the virus in their systems.  If not, then they don't have to worry about developing PML.  If they do, then they are at risk for developing PML.  The risk increases further the longer you take Tysabri and whether you took certain immune-suppressing drugs before taking MS medications.

Given the high percentage of the population that has been exposed to JCV, I was not surprised when my blood test showed that I had been exposed to the virus.  My neurologist and I talked about it during my last appointment, and I'm sure it won't be the last discussion we have on the subject.  Typically, JCV-positive patients are at greater risk after taking Tysabri for 2 years, and I've only been taking it for 7 months.  We agreed that for now, it's OK for me to still be getting the infusions, but that I need to speak up IMMEDIATELY if I notice any new or worsening symptoms.  It used to be thought that there was no cure or treatment for PML, but when symptoms are detected early, stopping the Tysabri and doing a plasma exchange to flush out any remaining drug.

My neurologist also told me that brain MRIs can assist in the early detection of PML, so it was back in the tube for me.  Since I'm claustrophobic, I wish I could avoid MRI machines, but when it comes to MS, neurologists get so much information about the disease and its progression that I have to just suck it up, take my IV valium, stick my tongue out at the MRI machine before going in, and begrudgingly accept the value that the MRIs have on my continued treatment.  I can't let my fear get in the way of my treatment.

Our Non-MS Lives

Primary elections took place today here in North Carolina.  After I left the polling place, it hit me how I did something important that had nothing to do with having MS.  Yes, my decisions may have been influenced by having MS, but I was doing something important for all adults, not just those with MS.

One of the pitfalls of having MS is letting it take too much of a central role in my life.  Yes, I have MS, but there are so many other aspects to me too.  I can't let my disease completely overshadow the rest of my life and responsibilities.

Managing my health - One of the biggest mistakes I've made - one that almost cost me my life - is ignoring health issues other than MS.  I ended up in the hospital earlier this year because I had mistakenly attributed my leg problems to spasticity.  Yes, that's part of the problem, but I was ignoring the symptoms of a life-threatening blood clot in my leg because I wasn't thinking outside of the MS box.  There's a reason that MS patients are advised to keep a close relationship with doctors other than their neurologists - we're not immune to other health issues because we've got MS.  I've got to make sure I keep up with all of my medical appointments and make sure I don't get so focused in on treating my MS that I forget to handle the other health issues that come my way.

Citizenship - I voted today.  I can't ignore my responsibilities as a citizen of this planet just because I have MS.  Sure, I may need to use my car more than the average person because of my disease, but that doesn't mean I have to drain all of the earth's resources.  I can still reduce, reuse, and recycle.

Stewardship - OK, there are some volunteer activities I used to do that I can no longer do.  My days of walking a 5K to raise money are over.  And I'm not the right person to call up when it's time to chaperone a field trip.  But there are still ways I can serve my community.  Ushering a church service doesn't work well for me, but I am part of the prayer ministry.  I'm not comfortable committing to regular committee participation, but the head of our health ministry knows that I am a resource.  I'm not the most recently diagnosed person in my congregation, and I'm willing to answer questions, offer support, listen to venting...whatever's needed.  I let that slip when I went to the hospital, so now I'm going to prioritize these relationhips again.

I've also been learning about online opportunities to support causes that only require clicks on the computer.  On Facebook, I virtually volunteer at animal shelters and foster dogs.  After earning a certain amount of points, then advertisers contribute food to animal shelters.  I also go the The Hunger Site, where advertisers donate to hunger organizers if I click daily.  From that site, I can also get to their other sites to support literacy, autism, veterans, and a number of other causes.

I've been told over and over that I'm more than my MS.  These are just a few of the ways that it's obvious to me.

Ashamed To Admit

I am so ashamed of something I did earlier this week.  I cut off another driver to get a handicapped space.

I didn’t mean to, honestly.  I was coming up to the space on the right, and I believed that the driver on the left was only waiting for the driver in front of her to move so that she could find a parking space.  I had no idea she was planning to park in that one and only handicapped space near the café.  It wasn’t until she limped into the restaurant that I realized my mistake.  I had selfishly assumed that no one else would have use for that space, and I took it.

In that moment of realization, I had so many memories flood over me.  I thought about all of the frustration when I pulled up at the drugstore and saw that the closest handicapped space was occupied by a driver sitting in his car waiting for someone inside.  I thought about all of the times I’ve been unable to use the sloped pavement areas to avoid tripping over a curb because it’s been blocked by a car in the fire line.  I thought about emailing the principal at my sons’ school because the handicapped spaces in front of the after-school care had been filled up three times in a week by drivers parked illegally.

I don’t know how those drivers felt when they saw me limping past their cars.  I do know that when I saw someone I had wronged, I felt very small.  I was also ashamed of my arrogance, that feeling of owning that space that allowed me to ignore the person in need who had been waiting for it.

I sometimes make the mistake of thinking I’m the only person dealing with a setback, or dealing with a physical burden, or having a bad day.  I need to get over myself and remember that I’m not the only occupant of this planet and take a moment to remember how my actions are impacting others.