MS Education Monday: What does it cost to find a cure???

What does it cost to find a cure is really a loaded question to most.  However, I have been researching for months about the funding that goes in to the research of MS and related illnesses. As many people know, research for these diseases are funded through non-profit organizations, fundraisers, and major drug companies.  For example, I am participating in the Walk MS event.  Events of this nature bring people together that are somehow effected by the disease or people who know someone that is.  Each participant is asked to seek donations to contribute to the fundraising efforts of the National MS Society.  All donations go to covering the cost of the event and research for treatment and cure of the disease.  This is similar to the Susan G. Koman race for the cure.  However, the MS Society does not ask each participant for a registration fee... it is free to partcipate. This is their way of basically raising awareness. 

So.... I researched the cost for a clinical trial for medication or research.  It was astounding to me.  It is estimated that a clinical trial on average costs about 2.5 million dollars for early development, research and one 12-week study series.  This means that the clinical trial would only be about one-forth complete with enough data for the FDA to even recognize its findings.  Kennedy Krieger Institute at Johns Hopkins University like many other advanced colleges of medicine studies specific aspects of the disease through reseach and willing participants.  Without these colleges support, many studies would never be able to even break ground. 

Why is this important? Well just like everything else, research is expensive.  However, there are too many people who are dependant upon this research to live as much of a normal life as possible.  I think many people get tired of being asked for donations or even discussing money in this economy. I commend the companies who are assisting MS patients.  Like many other expensive drugs, if you are unable to pay for your meds (including co-pays) they offer assistance to make it possible to never miss a dose due to financial reasons. So all I ask is for people to really do their research when donating to a cause.  The number one most important question to ask is how much of my donation goes directly to research?  If its less than 50%, I recommend chosing a different charitable cause.

Happy MS Education Monday!! Next week I will discuss Unique Protiens in Early Stages of MS (reasons behind the Spinal Tap for diagnosis).

My Son is in the Running for Cute Kid!!

So, I am trying to drum up all the support I can.... Luke is in the running for Cute Kid for the month of January from Parents Magazine.  Please help him win with your vote!!! You can vote daily, free of charge of course.  If chosen the winner, he could win up to $25,000 in scholarships and prizes!! Thanks for voting! Check back later today for my MS Education Monday post! Have a great Monday :)

Click here to vote:
Cute Kid Photo Contest      

This was the photo I entered:

Five Year Old's Version of the history of "Martin Luther Junior King"!!

So I think that kids are hilarious when you ask them what they learned at school.  I am fortunate to have two kindergartners that not only have fabulous teachers, but also love learning.  When they got in the car today I immediately asked them how there day was, what they had for lunch, and what they learned about.  This is sort of our everyday routine that they usually answer with one or two word responses acting annoyed that I would even be asking these sort of questions.  Today however, Luke was a wealth of information on the topic of "Martin Luther Junior King." It started out to cute for me to even begin to correct the proper saying of his name. Here is how the story went:

Luke: "Mom, today we talked about Martin Luther Junior King since yesterday was his birthday.  He was brown, and he wanted to be a minister like his dad and help out all the rest of the brown people. Did you know that people thought brown people would make us sick if we were around them?"

Me: "Well Luke, there was much more to the story than that..."

Luke: "No Mom, they couldn't drink with us, eat with us, go to school with us or even ride the bus with me."

Me: "But you don't ride the bus."

Luke: "Well if I did ride the bus they couldn't be on there. I mean... this happened way back in the 80's!!!!"

Me: "Wow, are you sure it was the 80's? I was alive in the 80's!"

Kennedy: "Luke, I thought she said the 50's."

Luke: "Well whatever she said. Anyways, I am not going to help people anymore because that's what got him shotted and I don't want to be shotted!"

So, really cute story.... but I just can't believe that out of all he learned today he has decided we shouldn't help others!! Oops! Guess I should keep that in mind the next time I am teaching my history lesson on Martin Luther King, Jr. :)

Luke and Kennedy

MS Education Monday - What is MS to me?

For the past few weeks I have given a lot of general information about Multiple Sclerosis, its treatments, symptoms, etc.  So today, I thought I would take the opportunity to discuss what MS currently means to me and the impact it bears on my life. One of the most important things for people to understand is that MS comes in all shapes and sizes.  You can line up 20 MS patients and they all might share different symptoms or difficulties.  I find this to be one of the reasons people have so much trouble understanding or accepting the disease. 

For me, Multiple Sclerosis is a scary, life changing pain in the butt.  To wake up blind is an indescribable feeling.  I have never been so confused or nervous. For days I thought all of this was a bad dream.  To be diagnosed with MS was alarming, yet a huge relief.  I had spent a week being a lab rat to several doctors and technicians who were working desperately to figure out why a healthy 29 year old female woke up and was bleeding in her brain causing extreme vision loss.  No car wreck, infectious disease, traumatic injury, nothing.  Just a pure phenomenon. But, finally my vision began to restore in small increments and stabilized about a month ago.  Although I cannot see perfectly, I am able to see well enough out of one eye to drive.  The only other symptoms I currently have are numbness in my left hand, tons of bruises from injections,  inflammation in my brain and optic nerve and a slight blood leak in my left eye.  All of which are able to be kept under control with medication and injection therapy. So that is what I am dealing with these days!

On a personal level, MS has been a blessing for me.  I am closer to the friends that I should be, have let go of frienships that were unhealthy for me to maintain any longer, and left me with an even stronger relationship to my sister.  My mother has been given another reason to get to mother me, my brother has yet another nick name for me (Ray Ray) and my dad has been the man he always is... great.  I never though I would ever be given the reason to ask someone if they would still love me if I were blind, could not walk or be the same me I always have been.  I guess now I know that if I find someone who is willing to accept me, my beautiful children and my illness, they must be one hell of a person!! So never take life for granted, live each day to the fullest and take a moment to see everything around you as a blessing.... Love the life you live. 

Here are some pics of the injections I recieve... in case you're curious :)

Pretty gross, but kind of cool. LOL

Kenalog Injections

Copaxone Injection Site

Twenty Wishes :)

This weekend I read a great book!  "Twenty Wishes" by Debbie Macomber is a journey of several widowers who are searching to find happiness again.  Although I am not a widower, I think we all could use a little help getting back to happy.  With a new year beginning, many people resolve to do certain things.  They may want to lose weight, stop smoking, fall in love or even finish school.  But, what if we quit the resolution business.... According to Dr. Oz, only 1 in 750 New Years resolutions are actually kept or achieved.  I don't think these odds are particularly good.  So, I suggest making a wish list instead.  Wish for things you have always wanted.  Make the wishes realistic and encourage your closest friends to join in!

In the novel, many of the widowers "wishes" were coming true and without the help of their friends, they may have not even noticed all the good that was happening around them.  Some of the wishes in the novel included:

• Learning karate
• Finding a honorable man
• Learning to belly dance
• Travel to Paris
• Own a pair of red Cowboy boots
• Learn to knit
• Learn to laugh again

I think that all of the above mentioned are within reach.  So, I have already started my list of 20 Wishes.  Since I am turning 30 this year, I think its a good time to love the life I live and really look for my true happy.  It's good for all of us to do a little cleaning sometimes, even it that cleaning includes ourselves or our priorities! Here is a sample of some of my 20 Wishes..... but some just have to remain private!

1. Take a foreign language class.
2. Perform at least 1 act of random kindness a day.
3. Let go of old grudges.

Book Credit: Macomber, Debbie. Twenty Wishes. Mira Books, Ontario Canada. 2008

MS Education Monday - Does Weather Affect MS Symptoms?

With the recent change in temperature in Arkansas this weekend, I decided to dedicate this MS Education Monday to the weather's effect on MS symptoms.  And, I am happy to report that most of the information recieved was positive.... as long as you are in a cold climate!! So, here is a article I found on the Real Living With Multiple Sclerosis website.  I think it sums up the "weather effect" on MS! Happy Reading.... Oh, and of course I had to add a little picture of one of my little snowbunnies to the bottom of this post. Kennedy sure is enjoying her snow day!

Weather or Not!

Real Living with Multiple Sclerosis, Sep 2004 by Zielinski, Karen 

Persons with MS can experience heat and weather sensitivity.

Give me a cool, dry day any time! My MS rears its ugly head a lot more when the heat and humidity go up. I'm especially sensitive to humidity, and, when the day is hot, the humidity often is high (my understanding of basic science tells me that warm air can hold more moisture).
People often say that their arthritis acts up when the weather gets cold or unusually humid, and I wondered if there was a correlation between the weather and MS. When I talk with the nurse at my neurologist's office during extremely hot weather and ask her how her day is going, she says, "Well, we've had an unusually busy day because of this weather. People feel a little worse than usual during this type of weather."
What happens to me is this: My hands get numb, and I'm a little more klutzy on those days. I don't feel up to doing my physical therapy routine because my legs don't have the same energy or stamina as when it's not so humid. Woven into all of this is that when it's humid, I don't sleep well at night; when I don't rest well, I don't perform as well physically.

Weather's affect on people with MS
There's truth to the notion that weather affects our bodies. According to The MS Information Sourcebook (published by the National Multiple Sclerosis Society; http://www.nationalmssociety.org/sourcebook.asp), "many people with MS experience a temporary worsening of their symptoms when the weather is hot or humid or when they run a fever, sunbathe, get overheated from exercise, or take hot showers or baths. Some people notice that their vision becomes blurred when they get overheated-a phenomenon known as Uhthoff s sign. These temporary changes can result from even a slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses."
At home, keep the temperature cool in order to rest well and to best perform activities of daily living. And learn your body's patterns; it's an important matter of personal safety. If you already have considerable weakness in your body, you don't want to compound your risks by adding lethargy to the situation. If you're barely able to walk a few feet and the weather turns hot and humid, you need to be aware in advance that the weather can make you less mobile.

Advice to people with MS

Although the amount of activity a person with MS can handle during humid weather is quite individual (depending on the severity of their dis ease and the extent of how the weather affects them), the major point is to control your environment. If, for example, I have a baseball game at night and it's the hottest, most humid day of the summer, I have many choices: I may stay home; I may stay for only part of the game; and, if I do go, I can take a mini-fan or use an ice vest to try to keep cool.
So be aware of the weather and how your body reacts to it. If it reacts poorly to heat, wait for a cold front. If not, crank up that air-conditioning and take it easy. This, too, shall pass!

Loving her day off school!!

Happy B'day to my Mom!!

Well... its officially almost over, but still must be recognized.  Today is my Mom's 59th Birthday. I wonder if she minds that I am sharing her age?? Oh well, she'll recover.  But, that is the one thing that I love most about my mom.  She seems to be able to endure whatever we throw at her.  For instance, we have a million names for her.  Sal-Pal, Big Sal, Moomsie, Grammie, etc. Brad even calls her Fluffy sometimes and she will answer. Sally is the women that goes to the dentist for a crown and refuses to be deadened.  She lives in chronic pain but barely complains. She amazes me and these days especially, I look at her to gain the encouragement to keep moving and endure what life my hand you. 

 My Mom loves being a mother so much that she has even replaced all of her grown children with dogs.  I guess she just really misses all of our fighting so much that she traded in yelling for barking!! So on this day I salute her... for taking such good care of me all these years, being a good "Grammie" to my kids and most of all for always being here for me no matter what.  Thank you Mom... I love you.

Mom and B.B. 

MS Education Mondays -

 M.S. Treatment Basics

Patients diagnosed with multiple sclerosis face great uncertainty, since the course of the illness varies so widely among patients. Experts recommend a multidisciplinary approach to the disease, which might involve a neurologist, a nurse or social worker expert in MS, and possibly a specialist in mental health (since depression is so common and the suicide rate is higher than average).

Decisions to Treat MS after First Indications (Clinically Isolated Syndromes)

Evidence now strongly suggests that the most destructive changes from multiple sclerosis in the brain occur very early on in the disease process -- and may cause considerable damage even before symptoms begin.
Many experts are now urging treatment after a first episode of relapsing MS (a clinically isolated syndrome) using medication called disease-modifying drugs. They include three interferons -- IFN1b (Betaseron) and IFN1a (Avonex, Rebif)--and glatiramer (Copaxone). These drugs are all effective and may help slow down or even prevent progression in some patients. Definitive studies comparing them are ongoing.
The best current approach is to use specific findings from advanced MRI techniques to help determine which patients are at highest risk for progression and would be likely candidates for early treatment with disease modifying drugs.
Interferons and other disease-modifying drugs can have significant side effects and are expensive. Furthermore, a significant number of patients have a mild course that can be managed with less toxic drugs. Nevertheless, strong evidence suggests that delaying treatment in most patients increases the risk for severe disability.

Treating Acute Relapses

Corticosteroids are the standard drugs for treating an acute relapse and hastening recovery. Typically, intravenous methylprednisolone (IVMP) is given once a day for 3 days. Sometimes this is followed by oral prednisolone for a few days.

Maintenance Treatment for Relapsing-Remitting Multiple Sclerosis (RRMS)

Disease Modifying Drugs. Since the introduction of the disease modifying drugs -- interferons beta (Betaseron) and alpha (Avonex, Rebif) and glatiramer (Copaxone) -- relapsing-remitting multiple sclerosis is now considered a treatable disease. In patients with very active MS, some experts start with Betaseron or Rebif. For patients with possible or probable MS, they begin with Avonex. This drug is slightly less effective than Rebif and Betaseron but has fewer side effects. Copaxone is also be a reasonable choice for early mild MS. It appears to have the fewest side effects, longer relapse-free rates than interferons, and its benefits persist for years.
The newest drug, the monoclonal antibody natalizumab (Tysabri) was approved in November 2004 for treatment of relapsing forms of MS. The FDA withdrew it from the market, however, in February 2005 following reports of serious neurological events. In June 2006, the FDA allowed natalizumab back on the market but with special restrictions (see Drug Treatment section).
Other Approaches. Some research has reported benefits from the use of pulsed administration of intravenous methylprednisolone (IVMP) or intravenous immunoglobulin, although there is not enough evidence for either approach to recommend them as first-line choices. Other drugs showing promise include azathioprine (an immunosuppressant) and laquinimod (an oral immune-modulating drug).

Chronic-Progressive Multiple Sclerosis

Treating Secondary Progressive Multiple Sclerosis (SPMS). Interferons and other standard treatments for relapsing-remitting MS may be helpful for patients with SPMS who are still experiencing relapses. It is not clear if they help those whose condition has become continuously progressive.
Mitoxantrone (Novantrone) was the first drug approved for SPMS. The drug is an immunosuppressant and is proving to delay relapse and progression. Side effects, however, can be serious in some cases. Some experts recommend using mitoxantrone when evidence suggests progression to SPMS, and continuing the interferons Betaseron or Rebif for maintenance.
Other immunosuppressants, such as cyclophosphamide, methotrexate, and cladribine, may help some patients with SPMS. They can have very toxic side effects, however, and there must be clear treatment indications for patients who take these drugs.
Treating Primary Progressive Multiple Sclerosis. No treatments have been proven yet to slow progressive multiple sclerosis. Studies using interferons and glatiramer are under way.

Treating Complications

A number of treatments are available for managing symptoms and complications.

ON A PERSONAL NOTE:

I personally am on a interferon medication mentioned named Copaxone.  The medication is administered through daily injection therapy done yourself at home.  Although the long term effects of the medication are still unknown, this drug has been widely used to treat MS for over 15 years.  Studies show that the medication is highly effective to slow the process of the disease and may even help reverse some of the effects of the demylination. Copaxone also offers the patient with less side effects than some of the other injectable therapies.  This was the deciding factor for me when choosing my medication. Although an oral medication is currently on the market, research is limited and has been shown to increase the risk of developing certain cancers.  :)

Cute story from "Papa"

So most of you know that I made a puzzle for my dad for Christmas.  It took me a lot of time and I was prepared for him to not find it nearly as impressive as I did.  However, I was shocked to find that he loved it and then he shared this cute story with me.  Dad told me that when he and my mom were first married they didnt have a lot of money and for fun they would put together puzzles and then glue them to cardboard.  I thought this story was so sweet.  Its little things like this that I never hear my parents talk about.  It made my day. I hope one day I will have stories to share with my children that will warm their hearts!

Here is a pic of my dad and his present. So glad he loved it as much as I did.