Reminders

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 me.....now if I can just keep up with my phone!

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?

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?

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!

Flu season is upon us!

Avoiding getting sick is a new hobby of mine.  My kiddos are older so this is easier now than it used to be.  Although, they are getting sick of  me, due to my constantly reminding them to wash their hands.  Of course, if you are around people you are going to be exposed to germs, so other than becoming a recluse, here are some suggestions from the CDC:

• Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
• Wash your hands often with soap and water. If soap and water are not available, use an alcohol-based hand rub.
• Avoid touching your eyes, nose and mouth. Germs spread this way.
• Try to avoid close contact with sick people.
• If you are sick with flu-like illness, CDC recommends that you stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. (Your fever should be gone without the use of a fever-reducing medicine.)
• While sick, limit contact with others as much as possible to keep from infecting them.

I don't think I have ever taken the flu vaccine.  However, I am thinking about it this year.  I really don't like to be sick in general and a fever tends to affect my walking ability these days.  The National MS Society posted an article recently regarding which flu vaccine MS patients should take.  You can read it here.

In short the article states that MS patient's SHOULD take the INACTIVE VERSION in the shot form.  They should AVOID the FLUMIST.  The mist contains the live version of the virus and is NOT recommended for people with MS.

So shot, not mist, got it?  What's one more shot in the grand scheme of things, right?  (Yes, that is sarcasm.)

Have a great day and don't forget to wash your hands!

Cool As A Cucumber!

Yes, yes! I have ordered and received two shirts that are made with a relatively new material that activates a cooling sensation when moistened. I am super excited to try them!

In the meantime however I have discovered a wonderful little "evaporation towel" called Chilly Pad by Frogg Toggs. It is pretty terrific and as a matter of fact I am using one right this minute!

Today we are attending a soccer event. I didn't wear one of my new cooling shirts because this one is at an indoor facility. As an afterthought though, I did grab my new Chilly Pad as we walked out the door this morning. I am so glad that I did!

As the day has worn on and the hot Texas sun has beat down on this place it has warmed up inside. I have my Chilly Pad draped across the back of my chair and it is perfect for keeping me cool while watching the kids work on their skills!

I discovered my exciting new find based on a tip from a new acquaintance I met at a recent MS program hosted by Shared Solutions. She had one and passed it around for all to feel. She uses hers draped across the back of her wheelchair to help her keep cool.

I found mine at Wal-Mart in the hunting section.  I couldn't find it on my own but when I asked the young lady working in the department, she took me right to them. 

They are also available online on a number of sites or

 you can get one by clicking here -->   

I definitely recommend them!

How am I going to pay all these medical bills? Some practical advice.

After the initial shock of a diagnosis with Multiple Sclerosis wears off you realize that this is a very expensive disease.  If you are lucky you have good insurance and a healthy savings to help with the expenses associated with diagnosis and treatment.  If the previous sentence describes you, you can stop reading now.....this post is not for you.

You may also be behind on other bills as a result of trying to maintain your medical coverage.   If you are still reading you have already probably begun to wonder what to do with the mounting medical bills that are flooding your mailbox.   Kindling?  No, just kidding.  The answers are going to vary depending on your situation which can include but likely are not limited to the following:

• No insurance.
• Medical insurance with high deductible.
• Medical insurance but still just finding it hard to cover all of the bills.
• Medical insurance with prescription drug limitations.

Over the course of the next few weeks I am going to share tips for each of the above scenarios. 

If you know of additional ways to help please feel free to add comments or helpful advice as appropriate!

MS Family Discovery Camp at Camp For All is drawing near!

I got a notice on Facebook a couple of weeks ago that MS Family Discovery Camp registration would soon be taking place.  I am super excited to see some of the folks we met last year and make new friends as well!  Last year was our first year to go and it was a pretty fun, educational and enlightening experience for our entire family.  Yes even the teenagers enjoyed themselves! 

You can read more about our experience here!

"Am I going to die?" well yes, but probably not today....

Being newly diagnosed with Multiple Sclerosis is scary business.  

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible. 

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”  Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle. 

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs. 

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.  

• ·         Make healthy menu choices; avoid high fat, high sugar foods.  

• ·         Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.

• ·        Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

• ·         Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!?  It is doing its job!  Let it work!

So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!