Friday, December 20, 2013

It's flu season again!

Well here we are all the way back around the calendar to flu season again! 

The flu is hitting the Houston area particularly hard this year with many reported cases of H1N1 and several confirmed deaths in the recent weeks.  This has sent folks into a panic, it seems.  The debates over the safety and the benefits (or lack there of) of the current vaccine are being waged on the news and in social media.  Here are the most recent recommendations from the National MS Society regarding the Flu Vaccine:

2013-2014 Seasonal Flu Vaccine (includes H1N1)

  • The 2013-2014 seasonal influenza (flu) immunization is a single preparation that provides immunity to three different flu virus strains. It contains anH3N2 virus, an influenza B virus and this year’s H1N1 virus, which means that only one ‘shot’ is needed.
  • The injectable flu vaccine, which is an ‘inactivated’ vaccine, is recommended for everyone over 6 months of age. It has been studied extensively in people with MS and is considered quite safe. The injectable flu vaccine may be taken by people who are taking an interferon medication, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, teriflunomide, or dimethyl fumarate. Although there were early concerns that the vaccine might not be as effective in people taking natalizumab or fingolimod, data (Vagberg et al., 2012; Mehling et al., 2011) suggest that people taking those medications do mount an effective immune response to the vaccine. A recent study (Bar-Or et al., 2013) also confirmed the effectiveness of the vaccine in people taking teriflunomide. No similar study has been done to date with dimethyl fumarate; however, there is nothing about its mechanism of action that would interfere with the efficacy of the vaccine.  
  • People who are experiencing a serious relapse that affects their ability to carry out activities of daily living should defer vaccination until 4-6 weeks after the onset of the relapse.
  • FluMist® is a live-virus flu vaccine(sometimes called LAIV for "live attenuated influenza vaccine”) that is delivered via a nasal spray. This live-virus vaccine is not recommended for people with MS. Live, attenuated vaccines are those whose biological activity has been reduced so that their ability to cause disease has been weakened but not totally inactivated.
  • A high-dose flu vaccine is available for people over age 65. This high-dose vaccine has not been studied in people with MS of any age. At present, the Centers for Disease Control is not recommending the high-dose vaccine over the seasonal flu vaccine for the general population.
The flu virus (like any other virus) can precipitate MS exacerbations, and people with limited mobility are more likely to develop complications of the flu, including pneumonia. The Society's National Medical Advisors recommend the seasonal flu shot as a safe and effective vaccination for people with MS.
Additional information about flu can be found at:
If you have any questions about the flu vaccine, contact the Society's Information Resource Center at 1-800-344-4867.

Wednesday, October 23, 2013


Ahhhhhh, my memory has taken as bad a hit from MS, perhaps worse of a hit than my body!  I used to have a wonderful memory. I could remember nearly verbatim anything I had read and if I heard something I just needed to write it down once and I could retain it.  Now, at certain times during the day I can't even keep a thought long enough to carry on a simple conversation. It is always very frustrating and quite honestly often embarrassing as well.

Recently I decided that I would try to blog first thing in the morning because frankly it is when I am at my peak cognitively. I am well rested and my mental resources have not been taxed by anything yet. And by first thing in the morning I mean first thing! I'm still lying on bed as I write this! :) 

As I was about to start this post today on memory, in the morning (at the peak of my cognitive performance for the day, mind you), I was distracted by a muscle twitch. Not an unusual occurrence for me. Click here for post related to twitching.  So what do I do?  I promptly draft a post (see previous link)  about muscle twitch, save it, open my email and twenty minutes later remember I was supposed to be writing a post about memory this morning!!!! 

Obviously, because I am having problems with this I have had to and am continuing to develop strategies to help me cope.  Obviously, they don't always work ....... at least immediately. 

One thing I do is make lots of lists. If I think of something that I need to do, accomplish or purchase, I write it down, immediately  (for obvious reasons). I try to be consistent with this and have one particular notepad or device that I use so I'm not losing my list(s).  If I am using a hand written list I mark off anything completed immediately. If it gets too cluttered with scratch outs, I rewrite it because the clutter distracts me. 

As the day wears on and I become more fatigued both physically and mentally I have more difficulty even remembering to check a hand written list.  The afternoons are when I am thankful for technology. I am learning to use the reminder function on my smartphone more and more. It sends me a little jingle at a programmed time to remind me to check it. If I get something done with a single tap I can remove that task and the next one is moved into its place. If I don't get something taken care of on that day, it is automatically moved to the next day for me. 

Taking advantage of the technology available has been a life and sanity saver for if I can just keep up with my phone!

Monday, October 21, 2013

Twitching and Muscle Cramps Are No Fun!

As I am lying here in bed catching up on email, Twitter and Facebook I realize that I'm having a hard time focusing literally, but not because of my eyes this time. I'm laying on my side and my muscle in my back is twitching (not to be confused with twerking) making my entire body move up and down.  Twitching and muscle cramps are something I have had for years and years....long before I was diagnosed with Multiple Sclerosis.

I am pretty sure that they were related to MS, I just didn't realize I had it at the time.  Fortunately for me the twitching is not painful, only annoying and doesn't happen too often.  The muscle cramps in my feet are more predictable now.  I formerly would get them without warning.  They would attack me from out of nowhere and draw my feet up into a contorted arch.  These days they only try to do go into that extreme type of cramp when I wear a shoe with a heel.  Yes, sadly I have had to give up any type of cute high heel shoe.  It is a sacrifice I am willing to make to avoid that kind of pain. 

Friday, October 18, 2013

You can do it!

One of the positives for me that has come from being diagnosed (yes I said positives!) is that I am more willing to take chances or leaps of faith. I'm not talking about my spiritual life here but my everyday, the: Can I do this?; I'm not sure of the outcome or my ability, riddled with self doubt life. You know the one......where you pass up career opportunities or personal opportunities that seem too good to be true and you over analyze or self doubt yourself right out of it.

For someone who is now plagued with the additional questions of: Am I going to get too tired?  Are my legs going to work the whole time?  Will I be able to make a decision or retrieve the correct words? the fact that I am more willing to step outside "my box" is quite amazing to me.

My daughter invited me on a trip over the summer.   It was a spur of the moment trip.  That is something pretty unusual for both of us.  We are both planners.  I wonder where she gets it from?  We both, although I am sure I am more inclined to do it, usually have everything mapped out well in advance.  We do spontaneous things, but we plan for them.  :)

I wanted to talk myself out of it.   There are always excuses, right.
  • How can I justify the expense?
  • I'll be too tired to be any fun.  
  • I can't leave the other kids because school is about to start.  I have supplies and clothes to shop for.  
  • What will they eat?  
Yeah right!  They are teenagers, they will hunt down food like wild animals.  Besides I had already decided earlier in the summer I was not going to miss out on things anymore because I thought I might be too tired which is really what most of my anxiety stems from when you boil it down; that I will be too tired to physically or mentally to complete, well, just about everything.  I decided that I was not going to BE the obstacle, I was going to overcome my obstacles.

So off we set to the airport.

First obstacle:  Pre-filled Copaxone syringes on a plane.  I packed them in my carry-on because I didn't want them to somehow get lost in "luggage land" without me.  I can't run down to the drug store and pick up a few extra.  They come from a specialty pharmacy, are shipped overnight via
refrigerated carrier; and they cost a bazillion dollars which insurance would not cover to replace.  I was anticipating trouble but was pleasantly surprised.  As I waited with my shoes off to head into the scanner, I leaned over to the lady screening the bags, got her attention and gently tapped my suitcase and quietly said "I have medication in syringes in my bag."  She smiled and asked if there was any type of gel pack with them.  I replied that there was indeed a refrigerated pack to keep them cool (I hadn't even thought about that being an issue).  She shook her head and motioned me on through.  After I went through, she smiled and said, "Thank you for letting me know."  That was it, no problems whatsoever.  We put our shoes on, grabbed our bags and headed to the plane.

One obstacle that wasn't an obstacle down.

So within one week of mentioning it to me, my daughter and I both boarded a plane from Dallas to Los Angeles.  We did have hotel reservations but that was it.  We had no plan for what we were going to do while there and we had no reservation for a rental car or ride.  She had mentioned that she had done some research and we should use public transportation while we were there.  I laughed at her, literally.  I know people use public transportation but we don't generally.  We live in rural Texas.  Other than Greyhound there is no real public transportation.  She and I both have used buses and trains in Europe, but that was pre MS.  Pre having to be more prepared (in my mind anyway) for obstacles. 

We made it safely to our destination and bought ourselves a Metro Tap Card for $20.00 each and we rode the Metro Rail and buses all over Los Angeles!    Not only did I overcome self imposed obstacles but she overcame her fear of needles by very carefully (and after much encouragement and coaxing) administering my shot on two nights while we were on our trip.  It was a time for us to enjoy each other and both experience and see things we had never before.  What an awesome adventure with my daughter that I would have missed if I had worried about everything and talked myself out of going because of what "could" have happened.


Thursday, October 17, 2013

Yep, I am finally doing it! The 30 Day Squat Challenge

Okay, I have finally given in!  I am doing the 30 Day Squat Challenge.  You know the one that made its way around social media last spring......Hey! Better late than never!  When this started going around Facebook last spring, I had numerous Facebook contacts who were participating and offering each other encouragement and accountability.  I wanted to try it then but was pretty sure that I could not keep up with the progressive nature of it at that time.  Sticking to one of my New Year's Resolutions however, I did do something.  I quietly and without any fan-fair began doing a few squats every day.  I think I actually started with five.  Over the summer I worked my way up to 25 every morning.  Now I can do those 25 without even blinking an eye so I decided it was time to start the actual challenge.   Exercise is so important to people with Multiple Sclerosis and aside from the physical limitations that may prevent us from performing certain exercises we also suffer from just plain lack of motivation!  Even though the "rush" of doing this challenge seems to have passed in my social media circles, hopefully there are a few of you out there that can keep me accountable and help me stick with it.  I am proud of myself for consistently working up to the point where I feel like I can even attempt it!  Anyone want to do it with me?

Wednesday, October 2, 2013

More Intriguing Information about Vitamin D

As you probably know by now, I am a big proponent of Vitamin D these days!  (If you don't know why Click here!)  I was just reading an article shared by Multiple Sclerosis Information on Facebook that just further enforces my beliefs!

The article is Researcher: Vitamin D Better Than Drugs in Treating MS.

The title sounds a pretty boastful based on the initial findings of the research presented in the article but regardless I firmly believe there is a strong correlation between MS and Vitamin D deficiency.   Based on how I feel when I am regularly on my Vitamin D regimen personally, I can confidently say there is a huge difference in my fatigue level.  While the Vitamin D does not eliminate fatigue for me I have had better results with it than a variety of alternative prescription solutions.  I personally take my Vitamin D in conjunction with Copaxone to help treat and manage my MS.

What are your thoughts on Vitamin D?

Monday, February 4, 2013

New Year's Resolution - Exercise More!

One of my New Year's Resolutions is to EXERCISE MORE!

This really should not be a difficult one for me to accomplish because pretty much if I exercise at all I will be doing more than I have been recently!

I have never been one that really enjoys "organized exercise".  I prefer to play a sport where I get exercise but am having fun, but also reaping the health benefits and I don't realize it!  :)

Now, while I am at a Soccer field for what seems like just about every waking moment, I get little to no health benefit from being a spectator.   To accomplish my goal I must actually move!

I was recently at a dinner where the topic was the benefit of exercise to a patient with MS.  With limitations on what we can do physically, sometimes it is a challenge to come up with an exercise routine that is both feasible and fun.

Initially after my diagnosis, once I was able to walk better, I enrolled in a Zumba class.  It sounded ambitious to me at the time but my daughter encouraged me and went with me while she was home on a school break.  I was not able to do all of the moves (especially at first).  However, as time went on, it helped me tremendously in regaining not only my strength, but balance and stamina as well.

As summer wore on, it became consistently too hot at the gym where the Zumba class was held and the risks outweighed the benefits, so I switched to water aerobics.  I loved it and was able to maintain a more consistent body temperature while exercising.  Water aerobics lasted through September (I think) and then with the rush of school starting and getting back into that routine any semblance of an exercise schedule for myself got left by the wayside!

My goal is to find several activities that I can do several times a week so that I neither get bored, nor physically strained.

My list for now consists of the following:
  • Walking in the neighborhood (weather permitting).
  • Zumba (at home on DVD, with my own thermostat!)
  • Water aerobics when it resumes for the year.
What are you doing?

Thursday, January 31, 2013

New Year's Resolution - Time Management

I have been doing pretty well with my time management goal lately.

However, I have realized I only have a certain amount of control over my own time. I can MANAGE all I want, but I am only able to carry out so much, regardless of what I have allotted for any particular time.  Even if I have allowed for rest, breaks, unforeseen circumstances, sometimes I am just not able to make it all work out the way I (originally) thought it should.

So really what my my resolution should be on this topic is to not be so hard on myself about not being able to do it all.

I recently skipped TWO soccer games.  One game each, of my son and one of my daughter.  Skipping a game is not something I do.  I make an effort to be at all of their events.  I am not able to always do this but I manage to get most of them.  These particular games were the same night in two different towns in opposite directions from each other.  On paper, I could have made it to the first half of my son's game and the last half of my daughter's game.  We had been to several games (preseason scrimmage) already that week.  The weather had been terrible - cold, windy and wet at all the previous games.  I was tired.  I should have been tired anyway and then the MS tired hit and hit hard.  I couldn't do a thing about it but stop!   That MS tired did not care a thing about what was written in my calendar.   I felt guilty and I felt sad that I was missing out on their games.

Funny thing is that the kids were fine.  They know I am their biggest fan, on and off the field.  When my son got home (he drives), he was surprised I hadn't been there.  He said, "I was pretty sure I saw you in the stands!"   We all had our usual post game talks about who did what, and how they felt about it, and what they needed to work on.  No one made me feel badly about me not being there but me!

So I am releasing the guilt!  I am going to keep trying and when I can't go anymore, well.... I will go to plan B, or C, or even better, no plan and just roll with it!  Everyone have a great day and just keep, keeping on!

Wednesday, January 9, 2013

Happy New Year! Are you making any changes this year?

New Year's is always a time for new beginnings!  My resolutions for this year are to:
  • Enjoy more time with my kids and husband.
  • Improve my diet.
  • Lose 5 pounds.
  • Manage my finances better.

Wish me luck and I wish you luck in all that you wish to accomplish!

Happy 2013!