November 8, 2008

Exercise!

Posted in multiple sclerosis tagged , at 11:35 am by melissasummers

No matter anyone’s physical abilities, physical activity is important to support the body and it’s functions.  Living with MS, exercise has become important for me to keep my muscles stretched to help combat my spasticity.  My spasticity is only slightly relieved by medication, and that combined with exercise lowers the pain levels a touch further.  Spasticty and it’s best friend, MS fatigue make exercise difficult.  My stamina is nonexistent which had completely taken any cardiovascular exercise out of my routines.

A few weeks ago I invested in a currently popular and difficult to find video game system that has an exercise program designed for the typical couch potato.  This program concentrates on strength, yoga and most importantly to me, balance.  It offers interactive training while safe in your own home, another plus for myself.

Lately I have a new favorite on this program…jogging in place.  While running through a nice virtual park filled with happy “people” waving and cheering me on, I am able to get my heart rate increased.  The jogging in place allows me to not worry about foot drop causing my to stumble, unlike my treadmill which had become a very dangerous piece of equipment!

As for the balance workouts, I believe my overall balance has improved.  However, there are still some days that no matter how strong I am, MS completely steals away my coordination.

October 3, 2008

Fall Neurologist Visit

Posted in multiple sclerosis tagged , at 6:31 am by melissasummers

Since my relapse in February, I have seen my neurologist every 4 months to monitor my recovery.  During my visit we discuss my progress on any medication changes.  After my last appointment, the dose on my anti-spasticity medication was decreased due to magnified existing fatigue and unbelievable brain fog!

As silly as it sounds, I literally was sleeping on my feet.  While everyone smiles at a small child that has fallen asleep in the midst of a meal, it’s really not as cute when you’re 35!  Although I am still having spsticity problems, the changed dosage is the best balance at this moment in time.

Next, a few simple muscle resistance exercises on each of my arms and legs to see where any weak areas or motor skill dysfunctions may be occurring.  These are just simply a “push and pull” against the neurologist’s hand.

Finally my gait is observed.  I find it difficult to show how I walk “normally” while crossing a small exam room, very aware that my steps are carefully watched.  I still have occasional foot drop on the right side.  Good news is my left leg which was affected by the most recent relapse has very little difficulty!

Finally the words I have been waiting for….

“Come back for a recheck in 6 months.”

Yeah!  A 6 month recheck is my usual, normal, routine visit!   Now the question is…does this qualify me as usual and normal?

September 19, 2008

Happy Birthday!

Posted in multiple sclerosis tagged , , , at 8:20 pm by melissasummers

Happy Birthday!

Happy Birthday to me,

Happy Birthday to me,

Happy Birthday to me…e…e..e..

Happy Birthday to me!

Today was the perfect day for a birthday, the kind of day that many born in January fantasize about. The sun was shining, a perfect 71 degrees and not a snowflake in sight!

Of course, nothing against my “day” in January, for it marks the origin of my start in this life. Today is another birthday, not an anniversary, holiday or festive occasion created to provide greeting card creators a reason to generate income. Today was the day that I administered to myself interferon shot number 52.

The interferon that I take to help combat Multiple Sclerosis is one that is injected once a week. Since there are 52 weeks in a year….that equals ONE YEAR OF INTERFERON THERAPY!

Honestly, I never dreamed that I would make this milestone. It has been a year of doubts, fears and weaknesses. Interferon therapy is not fun, it’s hard on the body, and it makes me ill for the 24 hours following my shot. There had been more than one occasion in which I seriously considered going off the medication. Thankfully, deep logical thinking and reviews of the medication studies kept me on track.

I do find it odd, the feeling of celebration that is surging through my body. Is it possible for me to celebrate a medication that makes every inch of my body ache? Celebrate waking up at 2am with chills so severe, that my teeth are chattering hard enough to make my jaw hurt? Celebrate that every Friday night I get to sink a needle almost 2 inches in length deep into my leg, knowing that it will bring on these side effects?

NO.

Today I celebrate that I was strong enough to continue the interferon therapy. I celebrate that although I had a disease relapse that took my left leg, the strength and control in that leg quickly returned. I celebrate that I have a wonderful and knowledgeable health care team. Finally, I celebrate that I am doing everything that I can possibly do to keep this disease from progressing.

 

 

 

August 11, 2008

The “Blues”

Posted in multiple sclerosis tagged , , at 6:39 am by melissasummers

The blues.  In the music world, it is a genre that encompasses deep emotions, deep rhythm and deep sounds.  Despite the pessimistic channels, “the blues” has the power to lift the spirit, the heart and also the physical body.  I dare anyone to listen to the beat of the blues and to try to keep their feet from tapping!

In multiple sclerosis, “the blues” take on an entire different tune.  The National Multiple Sclerosis Society has  mentioned  that studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions. 

During my own minor roller coaster fluctuations, I spent some time looking through the numerous studies to find out how to battle this facet of MS.  Just as there are many theories on the cause of MS, there are also many theories and variables that make depression a common “symptom” of MS.

First, there are medications used to combat the effects of multiple sclerosis.  Personally, I am on 4 main medications, 2 of which list depression as the most frequent side effect.

Next, there is the physical limitations.  A day fighting to keep moving and battling fatigue is exhausting.  Once again, personally speaking I find that when physically drained, I am also emotionally drained.  My temper becomes short and  cognitive skills diminish.  I call it my child without a nap syndrome.

Another quite reasonable possible is the disease itself.  Emotions are created in the brain, the brain is composed of nerves coated in myelin which is damaged from the disease.  A simple explanation on this process can be found on my 3-8-08 Multiple Sclerosis thread.  Once the emotion areas are damaged, it damages the way they are processed and the ability with how to express them becomes diminished or even overactive.

Finally, there are some that manifest depression as a result of the inability to cope with a disease that is so unpredictable.  With MS there is no knowing what each day will bring, or take away.  My thoughts on this portion are that even healthy people do not know their own future, lives can be changed in an instant.  Dwelling on such thoughts produces nothing but more negativity.

There are medications available to assist those with this symptom.  It is recommended that anyone with depression spanning longer than 2 weeks should seek medical assistance.

For myself, my ups and downs are part of routine life.  I believe in balance, everything evens out.  I try to live and look at things realistically.  If I am feeling down, I ask myself a few questions.  Am I safe from harm at the moment?  Have my nutritional bodily needs been met?  Do I have a home to protect me from the outside elements?   These questions cover the basic needs, once answered I am assured that I should be comfortable, safe and can relax from any fears created by my mind.  A friend of mine has a wonderful saying “Live in the now”.   Those questions enable me to do just that.

  Often I  “arm” myself with education. By learning about my disease I am able to not be caught by surprise.  I am able to eliminate any fears of the unknown, preventing my imagination from getting the best of me.  Emotional fluctuations are common in everyday life.  I also know that if I ever need assistance , my medical team, family and my knowledge of what the processes and symptoms are, are immediately available.

For the record dear family and friends, I have life’s basic needs, and I am safe from harm, comfortably “Living in the Now”, and enjoying listening to the blues!

July 31, 2008

No Pain, No Gain?

Posted in multiple sclerosis tagged , , , , , at 6:07 pm by melissasummers

  As with many others with MS, I have muscle spasticity.   Spasticity is a tightening or contraction of a muscle or group of muscles.  I experience this daily in both of my legs, occasionally the back of my arms and once in a while my stomach. 

  Imagine that you are on an exercise regimen, fulfilling a late New Years Resolution or just trying to get in shape.  A balanced exercise plan usually includes some weight workouts to gain muscle tone.  So out come the weights…don’t forget to dust them off!  As you start to lift the weights..one..two..hey, pretty easy.   Seven……oh boy, can I do eight?  The muscles are tiring, the body begins to struggle to maintain the motions that were once easy.  At this point a burn begins and there comes a point in which you will not be able to lift that weigh for another repetition.  So, if you are like many others, the weight goes back into the closet to gather dust, and you rest your muscles.  With spasticity, the muscle contracts as if holding a weight and then holds it’s position.  A burn begins and the muscle becomes fatigued. Movement becomes not as fluid and is sometimes shaky as the muscle struggles to work.  There is no weight to put down to relax the muscle.  It will quit when it is ready..or not at all.  When I was first experiencing spasticity,  I honestly did have fantasies of a super toned body without the workout!  Buns and Abs of Steel tapes?  Not this girl!!  Needless to say,  yes, I am toned..but will definitely not be entering any body building contests!

There are a few medications out there to help combat spasticity.  Unfortunately they also have side effects, the most common being drowsiness and fatigue-both symptoms that are already present in those with MS.  While I am on a medication to help ease my muscles, it is not as effective as my body would like it to be, and my body cannot handle a higher dose.   When I am very tight, the quickest cure is a nice warm bath.   Now, the fun part.  Heat aggravates MS symptoms!!    It is 85 degrees outside, I am stiff and sore, longing for a hot bath, but I am so heat sensitive!

Any MSers out there with that have a hot tub?  Truly, I am curious as if I make that investment, if I am careful with the temperature settings if that may work to help.  I am sure that it will definitely be of benefit once the weather cools down.

 

 

 

P.S.    Wow, over 500 hits on this blog…people are actually reading this?

July 16, 2008

Heat and MS

Posted in multiple sclerosis tagged , , , , at 5:29 pm by melissasummers

With the temperatures climbing above 90, I fantasize about climbing inside my refrigerator.  Hey, my little man that takes care of the light has been on vacation for the last month, which leaves room for me!

While heat can drain most people, those that have MS are very sensitive to the warmth.  Any symptoms that had been present, are worsened or magnified when the body temperature rises.  July weather, baths and even a fever can  cause this to happen.  Long before diagnostic technologic advances were around, MS was diagnosed by placing a person in  a warm bath to see if symptoms would increase.  Honestly, sounds more comfortable than being crammed into the shaft of the MRI tunnel!

While the heat can raise the feelings of weakness, being removed from the heat source will let the symptoms recede.  So to combat the heat I have in my arsenal the following:  Several cooling scarves in which absorb and retain cool water for a couple of hours (think running around in a wet swimsuit feeling), Cooling sandals that are kept in the fridge until ready to wear.  As nice as these sandals sounded, they only stay cool for about 30 minutes.  I also have a pillow cover that can be soaked in cool water and should work similar to my scarves.  As for how well the pillow cover works, it is new and I have yet to try it.

There are also vests available to keep MSers cool during the summer.  Some contain cool ice packs and other more advanced models actually pump and circulate cold water through channels in the vest.  These vests are more expensive than the items I already own, however if my heat sensitivity ever increases, I definitely will look into getting one.  Then again…Dad, you have an extra pond water pump?

July 8, 2008

Accidental Creativity

Posted in multiple sclerosis tagged , , at 11:40 pm by melissasummers

My apologies on lack of updates recently!  As the weather warms, things get busy..I know I am not alone on that scenario.

Multiple Sclerosis affects many different parts of the body, physically and mentally.  Losing cognitive skills is a very common symptom or side effect of the disease.  I have found in the last year that multi-tasking is a bit more difficult and learning new things does not come as easy as it has in the past.  However, age is also a culprit. Yet, my next visit to my specialist, I would like to bring up this concern.

A couple of weeks ago, after arriving at work, I had the feeling that my right leg was longer than the left.  My foot placement felt odd and my gait was off.  Now of course with MS, odd feelings and symptoms are “normal”, so I plodded onward.  Since I felt like my foot was not stepping down where it should, I glanced down to see where my left foot was landing when I took a step.  To my surprise and horror…I was wearing TWO DIFFERENT SHOES!!  In my own defense, they were both brown and I had the right shoe on the right foot, the left shoe on the left foot…that should count for something correct?  

 So what’s a girl with two different shoes to do?  This girl laughed, laughed hard and long, and then showed off my “pedi-creativity” to my co-workers.

June 12, 2008

I did it!

Posted in multiple sclerosis tagged , , , at 1:04 am by melissasummers

I did it. 

It took me all day, but I did it. 

 I did it all by myself. 

It’s been a long time since it’s been done by yours truly, but ….

I MOWED THE BACKYARD! 

I  began this task..umm not a task..  I began this event at 9 am this morning and finally finished at 8:37 this evening.  Hello, Guiness book of records, how do I apply?  Now, just to clarify, it did not really truly take me almost twelve hours, I had to take many many breaks!  It was about 4 separate “sessions” to complete. 

I haven’t mowed the lawn in almost 2 years. It has always been one of the more enjoyable chores to take on.   So why on earth would I do such a crazy thing on my “day off for rest in the middle of the week” ?   We had to buy a new mower..and I simply wanted to see if I could get it started. Now of course once it’s running , and with gas prices as high as they are, might as well make a few rows in the yard.  The new mower is much more difficult to manuever in my opinion.  However, my opinion may not count for much as I am no longer an expert at lawn care!  Four rows and my body decided that it had enough. Later I took the dogs out and looked at the goofy stripes in the lawn. Now who can leave stripes in their lawn? If it is possible, I could have left them!  Guess what?  I had to add a few more stripes so the first ones wouldn’t look so lonely.  As the day progressed, the stripes began to outnumber the unruly lawn.   Finally, this evening in the cool air, I started the mower back up again to finish the last 4 rows. The smell of fresh cut greens filled the yard, and a sense of victory began to arise at the idea that I was almost done.

Wheeling the heavy mower back to it’s home in the garage, I turned to my dogs with a smile.  “Did you see?  I asked them excitedly “Did you see what I just did!  I did it all by myself!”   Joker, my usually mellow black lab, jumped and cheered along with me. “Good job Mom!”   Harley, my chocolate lab who always had agreed with me in the past, just rolled his eyes. I stuck my tongue out at him and then the three of us shuffled through the fallen grass clippings to head inside, all exhausted from our adventure out of doors.

May 23, 2008

Turkey Vibe

Posted in multiple sclerosis tagged , , at 1:56 am by melissasummers

After moving from the city quite some time ago, I quickly learned that country life was not as secluded as it initially appeared.  The neighborhood is filled with a variety of folk of the natural sort.

It has been a learning experience for me as I have in the past, found uninvited creatures in my home, and had to quickly learn to watch for wildlife not obeying traffic signs or rules of the road.   Earlier this week I had a close call during my morning commute with a rather large, rather ugly and rather ungainly wild turkey.

My past experiences with turkeys have been fairly consistent..I drive down the road, look off into the fields and see a few turkeys loitering on occasion.  So, I was a little slow to identify the dark lumbering, flapping shape that was quickly but awkwardly advancing into the road.

Time slowed to a crawl as my brain raced to solve the mathematical equation:  If a Pontiac Vibe at Point A is traveling east at 55 mph, and a turkey at Point B is traveling southwest at a surprisingly quick pace, will they collide at Point C?   Yes! Arrghh! 

Time resumed it’s natural speed..in fact it may have sped up a notch!  The turkey cumbersomely waved it’s wings in the air attempting to raise it’s bulk from the earth.  Amazingly to me, the bird began to gain loft.  I say this is amazing, because I guess i didn’t know that turkeys could fly.  Now to call this process a graceful one would be quite false. He tottered in air, flopped , legs flailing behind. Luckily, his altitude was just enough to clear the hood of my car, leaving just his knobby legs to drag across the windshield.

In the end the turkey successfully crossed the road, the car suffered no indentations and I was left a bit in awe over the fact that turkeys fly..well..um fly awkwardly.

I have had many close encounters of the wildlife kind. It has been a few days and the turkey event has stayed in the forefront of my mind.  There is a reason that I experienced this particular event, a lesson was to be learned somewhere.  I thought long and hard over this story and then I came to this conclusion. This turkey had a difficult time taking flight, he did not give up trying, he gave that action 100 percent of his ability. I realize that no matter how ungainly, awkward, ungraceful or lumbering one feels that if you set your mind to accomplish something anything can be achieved.  Of course, yes this bird had a reason of self preservation to give him a boost..but lets just ignore that fact for now!

Turkey vs. Vibe = Turkey Vibe.  My new saying for when I feel as if my accomplishments are a touch out of reach..and it’s just silly enough for me not to forget!

May 17, 2008

Aches and Interferons

Posted in multiple sclerosis tagged , , at 12:30 pm by melissasummers

I am very lucky that I was diagnosed in this decade.  There are many that did not have the benefit of having interferon therapy available to slow down the disease progression.  Interferons do not cure MS, they slow down the disease process, help the nerves heal better after a relapse , however they do not work for everyone.

When dealing with interferons, one must get over any needle phobia. For myself, I had no trouble with the fact that I had to inject myself, what I do have trouble with is that the interferons make me ill.  One of the most common side effects is flu-like symptoms which ease up over time.  Flu like symptoms was a major understatement the first month I began injecting myself! I was very ill with fever, tremors and nausea.  Now, seven months later, I still get ill on occasion with a fever.

So, here I am on a spring Saturday morning, my neck, elbows, hips and ankles aching from a mild fever. I don’t like it.  I don’t have to like it.  So many personal MS stories that I have read early on in the disease were so optimistic, how bright and cheery life can be with this disease.  The negatives are frosted over in these tales with chocolate icing, hiding the fact that there is no sugar in the cake. I am not saying that life cannot be bright and cheery by no means, I am saying that it is perfectly normal to have moments where you can be free to say “I don’t like this!” and “No cake for me, thank you”.  I know how important a tool interferons are to fight this disease. I realize that my injections played a major role in my fast recovery on my last relapse. I harbor no ill feelings towards them..I share my life with them..make accomodating adjustments like a perfect hostess…and it’s okay that I just don’t like it.

May 7, 2008

National MS Walk 2008

Posted in multiple sclerosis tagged , , , , at 9:54 pm by melissasummers

This years walk was simply amazing. It is difficult to find the words to properly explain the emotions, the atmosphere and even the physical portion of the walk.

The small town of Frankenmuth was crowded by those that came to walk, volunteer and support the efforts against Multiple Sclerosis.  The walkers were many and varied. There were those that walked fast, some took a pleasant stroll, some had wheelchairs or scooters, and there were some that walked those 3 miles with the supporting arms of friends and family keeping them on their feet.  There are days on this earth when we ALL feel tired, feel like we might collapse if we take another step.  There are times when we feel that we are physically unable to accomplish something due to limitations.  No one is immune from these feeling regardless of health or physical status.  But, the mind and the heart are powerful forces, nothing is impossible. Need proof?  Attend one of these events.  Watch the heart take control of the body. Watch those that can barely stand pass under the finish line balloon arch. Watch their eyes.  Were they letting their body tell them that was an impossible feat?

Now this years walk, just as the year before took place 2 months after I had lost use of a leg.  So yes, the walk for me has been a challenge…not sure if that is the correct word to use. Let’s just say the walk is my way of telling my body, who is in charge.  So not only am I raising money to further research and help fund education, but this event also has helped raise spirits and faith within me.

 

This year, I was accompanied by an official team!   Now not only did I physically have five individuals with me on that overcast spring day, but I had an uncountable number of those that were with me in heart, mind and spirit.  For everyone involved, I thank you all dearly.

 

I also have a very special thank you to my virtual but very real friends.  For those that spend most of their time on the material “real life” plane, I would like to introduce to you my virtual friends.  On an online community that replicates real life, but with fun added extras like flying, I work with a large group of amazingly talented and generous musicians. Routinely, they perform concerts from their home, stream it online into a virtual world. Now some of these musicians played in a nine hour benefit to raise funds for my walk.  And raise funds they did!  The total donations reached almost 300 dollars. Below is a picture of myself standing next to my virtual self “Summer” in the green dress. Around me are a few the the wonderful musicians from various parts of the world that donated their time and talent to raise funds for my walk.  Thank you First Call Musicians Cooperative, for your generosity and support in the past year.