Word Fishing

I learned a new term used a lot in the MS world.  It's nice to see that we have a name for the times when we draw a complete blank on simple words.  I talk a lot so for me it seems like every 3 words get hung up in my head and I'm trying to figure out what to say or at least use a synonym.  I am not very good at explaining things.  God has taught me so much about myself since my MS diagnosis.  He taught me how to slow down a bit and not to bite off more than I can chew or put too much on my plate.  Anyways, I haven't been able to master the "tongue".  It's a constant battle for me.  I have gotten better though since my attention span is so short.  I thought I was just an amazing multi-tasker.  I start one task in the kitchen, walk into a room and see something else that needs my immediate attention.  Then the phone rings and it's my mom.  She uses me to talk to her on the phone because she gets her house cleaned without even realizing it.  Then she hangs up on me.  Then I go back to the kitchen and I have now forgot what I was doing. If multi-tasking means starting all these little tasks and not accomplishing anything then clearly I am an amazing multi-tasker.  So far today I started getting ready for work, then I decided to make some coffee, now I am editing this blog while I wait for my coffee to brew.  Truth be told, I do this every single morning and I end up forgetting to wake up my daughters to get ready for school.  On that note, I gotta go.  I have 2 minutes before I have to wake them up.

New Symptoms pt. 2

Last night I experienced a new symptom.  I was sitting in bed and I noticed this tingling sensation in my forearms and hands.  It went on for about 20 minutes.  It felt like they were asleep but really it's what happens before you go numb.  My feet started out the same way in the beginning.  Since this sensation is in my arms, that means that I must have new lesions in my spinal cord near the nerves that affect my arms.  I don't know. Since I'm on Tysabri, I'm supposed to contact my neurologist anytime I experience new or worsening symptoms.  I cannot take any other disease modifying drug or steroids for 6 months after stopping Tysabri.  Supposedly that's how long it stays in your system.

 I was explaining to a friend that MS affects both your brain and spinal cord and that's why I experience such a wide range of symptoms.  She didn't realize this and she asked me if I worry about my future.  Yeah, maybe sometimes I find myself thinking ahead but I don't worry about the future because tomorrow isn't promised to me or anyone else.  I'm finding out that a lot of people, including my friends don't know much about MS at all.  They seem to get it confused with Muscular Dystrophy, another debilitating disease except it can be fatal.  MS is rarely fatal. 

I see that my thoughts of becoming an MS activist need to be put into action.  I would like to speak to others about MS.  I actually enjoy answering people's questions about my condition.  As long as people want to know, then I don't mind telling them.  I guess I better get started on finding out what my next step should be because I am very serious about this.  I do as much research as I can and that's another thing.  People don't feel like they have the time to research their situations but I strongly encourage it.  Whether you have MS or any other condition, take the time to educate yourself as much as you possibly can.

Risky Business

Tysabri is my current MS therapy.  As an African American MS tends to be more aggressive for us so we must be equally aggressive with our treatment.  Tysabri is the most aggressive treatment that I am aware of.  Since it is so aggressive, there is a down side of course.  With it comes the risk of developing a fatal brain disorder called PML caused by JC Virus or JCV. 

JC Virus was first isolated from the brain of a person suffering from Hodgkin's disease & PML .  PML tissue contains virus-like particles in the nuclei of abnormal oligodendrocytes, which is the pathognomonic cell of the disease.  JCV will only grow in a very restricted range of cells, mainly in the brain.  JCV is known as a DNA virus that maintains a latent infection in the body which can be reactivated from time to time.  The oligodendrocytes in the peripheral zone surrounding an area of demyelination are grossly abnormal.  The nuclei of abnormal oligodendrocytes are packed with JCV.  Typically, PML evolves gradually, with impairment of mental function and disturbance of speech and vision.  Movement may also be affected.  The disease then progresses rapidly and patient is severely disabled, eventually becoming demented, blind, paralyzed and finally, coma and death.

Antibodies of JC virus in the Cerebral Spinal Fluid (CSF) is rare but if detected, it suggests active multiplication of JCV in the Central Nervous System (CNS).  Cytarbine is an anti-viral drug that has proven to be somewhat effective against PML.  Out of 8 cases, long term improvement was only seen in 2 cases.  Another case had a dramatic response within 24 hours but was not maintained.  Rapid progression was halted in 1 case but the neurological damage was severe.  The other 4 cases did not show any improvement.

Our immune system routinely keeps the virus in check.  Anyone with a weak immune system run the risk of developing PML.  Life is risky every day.  I am too blessed to be stressed.

                                                                                                             

New Symptoms

My MS symptoms are somewhat mild.  My number one symptom is fatigue and the majority of people with MS will tell you the same.  This is not just your normal fatigue brought on by not getting enough sleep or after working a long hard day.  This fatigue is called lassitude or MS fatigue. I also experience numbness in my right foot near my toes and body aches from head to toe.  Mentally I have brain fog which is exactly how it sounds.  I have a lot of lesions in my brain and it affects my memory, cognitive skills such as writing and my mood.

Lately I have been noticing sharp pains in my neck and spine.  It feels like my nerves are backfiring and it hurts like hedoubleL.  Thankfully the pain doesn't last very long and it's sporadic.

I know and feel that I am truly blessed.  I have access to treatments that weren't availble 15 years ago.  I used to tell my family and friends that if I had to choose between MS and other diseases such as cancer or lupus or sickle cell anemia, then MS would be my choice.  God knows what He is doing and He has me in His hands.  As long as I stay close to God, I will always be ok.  He gives me strength that causes some people to wonder about me?  People used to say, "I don't know how you do it", and I tell them that it's the God in me.  Apart from Him then MS would probably have me feeling sorry for myself.  But there are too many blessings in my life to focus on this disease and let it have me down all the time.

Handicapped Parking

I have a question for my viewers. "When a person parks in a space marked for "Handicap", what should that person look like?  Should they be in a wheelchair or have a cane?  Is it ok if you cannot tell by looking at them or watching them that they be able to use that spot w/o you doing a triple take?  Disabled parking is not just for the obvious.  I have included a link to the DMV criteria for disabled parking in my state.  NV DMV Disabled Parking  I encourage people to read requirements by the DMV in order to receive a handicap placard or license plate.  You cannot tell by looking at me that I am approved to use handicapped parking but I am and I do.  At first, I actually felt bad and worried about what people would think of me.  I don't always feel the need for it and on days like that , I use regular parking spots.  I truly felt like I needed to explain myself or try to appear more visually impaired.  I finally got over that because guess what, if a person is ignorant enough to stare at you like you're doing something wrong, you will probably end up in an argument with them by asking them if they have a problem.  And for what?  I know better than to stress myself out since for most people, ignorance is bliss anyways.  So I have decided to keep it movin and go about my business. Then of course there are the people that know you a tiny bit so they feel comfortable asking you why you are parking there.  I still haven't learned how to respond to that question w/o saying, "It's none of your business or why do you ask?"  Cause if you knew me that well then you wouldn't need to ask me that question.  I know for the most part that curiosity can cause people to forget their manners.  If you are one of those people then I forgive you.  Just take the time to educate yourself every now and then and maybe you won't need to know why someone is parking in a "Handicapped" spot when they are not in a wheelchair or walking with a cane.  Let's all try not to be so simple minded.

What Doesn't Kill You

When I was diagnosed with Multiple Sclerosis at the end of 2007, my family was more afraid than I was.  None of us knew anything about the disease or what the prognosis would be.  I knew that my chance of having the disease was 50% by then because I started having problems about 9 months before my diagnosis. During one trip to the emergency room a doctor mentioned that she believed I might have MS.  Once I heard that word, I went home and did as much research as I could on the subject.  The only thing I knew about MS before that was that Montel Williams had it but I never gave it much thought until there was a possibility that I might have it myself.  The first thing I wanted to know is, "Will this kill me?"  I was very relieved to find out that most people with MS go on to lead a somewhat normal life and no it would not "kill" me.  That was a relief.  I am blessed to have a great circle of family and friends that support me.  My husband and 3 daughters even learned how to administer my nightly shot for the first 6 months but the shots weren't keeping the disease at bay so I now receive my treatments via IV at an infusion center once a month.  This approach is more aggressive because as an African American,  MS is more aggressive for us.  I will post more about that at a later time.  My main symptoms are numbness in my right foot and periodically other areas below the waist, fatigue (more about that later as well), brain fog and muscle aches.  This disease is teaching me a lot about life in general.  I believe that God is using me in one of His mysterious ways to shed as much light as I can to as many people as I can reach and bring Him glory in the process.  Not only that but "What doesn't kill you only makes you stronger right?"  I believe that without a doubt just as surely as I know that there is a God in heaven who loves me.