ms-is-not-the-boss-of-me

[ms-is-not-the-boss-of-me]

Patti O'Brien‎United States Marine Corps

Trying to find the owner of this lost ring. It is engraved with initials and the date 10-03-14 and found in Cape Coral Florida at Bike Night on 10-13-14. Please share! Thank you.

[ms-is-not-the-boss-of-me]

Commonly prescribed drugs could raise risk for Alzheimer's

FYI for the MS Community:

In case you had not heard this news, it is always a good idea to know information on your medications so that you can make informed choices for your care. 

http://www.cbsnews.com/news/anti-anxiety-drugs-could-raise-risk-for-alzheimers/

By Jessica Firger  CBS News   September 10, 2014, 5:59 AM

Commonly prescribed drugs could raise risk for Alzheimer's

Long-term use of some common anti-anxiety and insomnia drugs may increase the risk of developing Alzheimer's disease later in life.

According to a new study, regular use of benzodiazepines -- which include medications such as Valium (diazepam), Ativan (lorazepam), Xanax (alprazolam) and Klonopin (clonazepam) -- is associated with as much as a 51 percent increased risk for Alzheimer's among people who use the drugs for three months or more.

For the study, published in BMJ-British Medical Journal, researchers looked at data from the Quebec health insurance program database. They tracked elderly people living in Quebec, Canada who were prescribed benzodiazepines (sometimes called 'benzos'). The researchers analyzed six years of data, and noted 1,796 cases of Alzheimer's disease.

The study found that beyond three months on the drug, the longer people took it, the higher their risk for dementia. Additionally, the study indicated that long-acting or extended release forms of the drugs were associated with higher risk for Alzheimer's than shorter acting forms of the same medication.

Brain stimulation helps ward off dementia in seniors

While the study did not prove cause and effect, researchers say the findings suggest benzodiazepine use among older patients presents a significant public health concern. An estimated 36 million people worldwide currently suffer from dementia, and rates of Alzheimer's disease continue to grow as the population ages.

This is not the first study to suggest a link between use of this class of drugs and increased dementia risk. Another study published in 2012, also in BMJ, followed 1,063 elderly individuals for 20 years. The researchers in that study determined that the risk for dementia was 4.8 per 100 person-years among people who took benzodiazepines versus 3.2 per 100 person-years in the group not taking the drugs.

The drugs are frequently prescribed because anxiety is a common problem among aging people. According to the National Institutes of Health, anxiety disorders impact approximately 3 to 14 percent of older adults each year. The condition is also one hallmark of Alzheimer's disease. People with dementia frequently experience "sundowning," a phenomenon in which a person develops high levels of anxiety, agitation and delirium in late afternoon, evening or before bedtime.

An accompanying editorial points out that the American Geriatrics Society recommends against benzodiazepine use for seniors because of their long-term impact on cognition.

"Older adults have increased sensitivity to benzodiazepines and slower metabolism of long-acting agents. In general, all benzodiazepines increase risk of cognitive impairment, delirium, falls, fractures, and motor vehicle accidents in older adults," write the authors of the American Geriatrics Society in a 2012 report.

However, the organization says this class of drugs "may be appropriate for seizure disorders, rapid eye movement sleep disorders, benzodiazepine withdrawal, ethanol withdrawal, severe generalized anxiety disorder, periprocedural anesthesia, end-of-life care."

Experts recommend older patients not use these drugs for longer than three months. Benzodiazepines can be highly addictive, and their sedative effect means many patients become reliant on them as sleeping aids.

The authors of the latest study say doctors and regulatory agencies should consider the risks of long-term use carefully. "It is now crucial to encourage physicians to carefully balance the benefits and risks when initiating or renewing a treatment with benzodiazepines and related products in elderly patients," they write. They recommend younger patients avoid long-term use of the drugs as well, as a precaution.

© 2014 CBS Interactive Inc. All Rights Reserved.

[ms-is-not-the-boss-of-me]

Retirement Is a Good Thing, Right?

I had my children in my late thirties.  Most of my friends had started their families in their twenties but I was married to a man who had made it clear that he did not want children.  I am not completely sure why he was so against children, though I do think the hard life he had growing up in a large family with an alcoholic father played a large part.

I remember when I finished high school telling my sister that I didn't want to go to college but I wanted to be a mom.  At the time I did have a boyfriend but I wasn't so stupid to think that I just needed to get pregnant or married to have a happy life.  A year after high school my boyfriend and I went our separate ways and I did go to college.

At the time I wanted to get away from home and going away to college made that possible.  Through my friendships at college I met and eventually married my first husband.  I was content to be childless as he wanted our marriage to be until I started caring for our friend's children, then that old desire came back.  One of my girlfriends had told me to go ahead and get pregnant, my husband would change his mind once the child was born.  I thought different.  I figured he would leave me for forcing him to be a father. 

I had chosen a life without children to be with him and in the back of my mind I knew that having children requires that both parents to be willing to put the child first over everything else they may want.  I knew my husband enjoyed his freedom to do whatever he wanted, when he wanted, and a child would only have me hugging and caring and going to events.  That is no life for a child.

If you asked me when I was in my twenties if I believed in GOD I would have said, "Yes", but my faith was that of a "holiday christian" as I pursued a man and fun, and gave GOD an occasional thought.  Prayer was a "give me this or that" or "forgive me my choices"  while I had no desire to change my relationship with HIM much less my choices.

After thirteen and a half years with the man I had chosen, I realized that though I was loyal to all he wanted from me, he had become loyal to alcohol and cocaine and I was not as important to him anymore.  I was his roommate not his wife.  Eventually I had to leave him, but I continued to make stupid life choices.  The one thing that was different was that I began to talk to GOD daily and slowly I began to make better and wiser decisions about my life.

At this point I am in my mid-thirties, supporting myself and I meet my present husband.  A year and a half later we married and because of our ages, we decided that we better do children right away.  Sara was born after our first anniversary (almost 24 years ago!).  Two years later due to complications we lost a little girl and three years after that Aaron was born. 

My husband and I both began to pursue a relationship with GOD when the kids were young and now church, fellowship, service for GOD is key to our family.  My husband worked, I raised our children.  He would come home and they would climb into his lap.  I volunteered at their schools, helped them with homework, drove them wherever, held them when they were sick, and brought them to GOD. 

My husband reflects what it means to be a "Man Of GOD" while he provides for us.  He wrestled with them, he coached their sports teams, showed them love and gave them advice. If an event was important to them, my husband was there. 

My husband and I made (make) a good parent team I think.  We are also still a good couple.

Yesterday we dropped off Sara at college.  She is far enough away that I know I won't be seeing her except on holidays.  I know we will talk on the phone because we did when she moved once before.  She is old enough to fly and the distance will keep me from trying to make sure all her decisions are the "right" ones.  That is a hard thing for this mom.

Last weekend we dropped our son off at college as well.  He is only a couple hours away, can easily drive home but I don't expect he will call me often.  He will text occasionally, but not call.  He really wants his independence and I am trying really hard not to "help" him with deciding how to pursue his independence.  That is a hard thing for this mom.

I have typed all of this and now my eyes are tearing up.  It is like I have been forced into retirement.  In some ways it feels like when I left my first husband.  This is something I have to do but I do feel a little lost.  I guess a big part of my identity was being a mom.  Yes I work part time and it is with children so I still have kids to love on, but right now my house is very quiet.  Quiet is something I am going to have to get used to.

On the trip to drop off our daughter we stayed in a nearby hotel.  ONE BED.  Wow, in the last 24 years when we traveled we have almost always booked a room with two queens.  When I walked into the hotel room and looked at that bed, I realized that that is how we are going to travel for now on. When we drove home, I didn't talk much (that's a BIG deal because I am always talking) but I was thinking about how I am going to make this transition to being a mom with adult children who have left home. 

Rediscovering being a couple seems to be a good starting point.  The last couple of days I have been wanting to cuddle and love on my husband but he has a cold.  Just my luck.  We can't .......... We don't know how my body is going to react when I get a cold because of the Rituxan has modified my immune system.  We are being careful to avoid germs for the time being. 

I am left with dealing with the quiet house.  The vacuum cleaner is noisy.  Let's see how much cleaning I can do before my body quits on me.

Retirement is a good thing, right?

[ms-is-not-the-boss-of-me]

Please help get the word out

Hello,

I AM LOOKING FOR PEOPLE WITH MS WHO ARE ON RITUXAN

I am writing a new blog detailing what I am experiencing on my new treatment. On July 25, 2014 I had my first infusion of Rituxan. This blog chronicles the experiences of myself and I hope other people on Rituxan will share what if any changes they are experiencing as a result of having Rituximab for the treatment of their Multiple Sclerosis. I have found little information that details what actual physical improvements people experienced from this treatment, I was only able to find statistical data on lesions and side effects. For this reason I want to collect stories of people's experiences while on Rituxan.

I don't think there are many that have tried this treatment.  If this treatment has good or bad results I want to provide a venue where people can share and where others considering this choice can gain information that is more than scientific data.

If you are a member of the MS community, please reblog this "flyer" to help spread the word.  It is going to be hard to reach the target group because this treatment is new and I don't think there are a lot of users of Rituximab out there.

The blog site is: A Quest for Recovery:  www.http://rituximabjourney.tumblr.com/

[ms-is-not-the-boss-of-me]

The drug trial is over

I have left the drug trial.  I do not know if I was on the drug or not but I the summer is really making me weak.  Last summer was the best I have had in more than 5 years and this summer is a reminder of how much heat can make me hurt.

The posts that I will do after this will probably just have to do with what I am thinking.  Probably mostly about my faith. 

[ms-is-not-the-boss-of-me]

MS Service Day Is Not Just For the Able Bodied

  My favorite part of MS Awareness Month is the different service projects that are organized by the local National Multiple Sclerosis field offices.  My name is Debbie and I am in my late 50’s and I am an MS Society volunteer. 

As March approaches I like to help with the planning for MS service days by helping to follow-up on requests for assistance and writing up the needs.  This has given me the opportunity to meet many different people living with MS, many who I get to see again at the MSWalks.  I also like to be involved in at least one of the projects each year.  I love to volunteer my time to help where I can.  In the past I have participated in neighborhood, backyard and streetside cleanups for many organizations, but my favorite projects are those involving carpentry and building things.  Through volunteering over the years, I have learned how to construct walls, repair roofs, widen doorways and install doors, hang drywall, renovate a bathroom and plan volunteer projects.   

Today I can no longer strike a nail hard enough to sink it nor can I count on my legs not to fail me when I do get involved in projects.  I have MS.  I have had symptoms that I now connect to MS, since high school, but it wasn’t until my 50th birthday, (yes, on my birthday), that a doctor told me that I had MS. 

Having MS may have taken away my strength but it can’t change the joy I feel when I can help and meet new people.   One person I got to meet this year was Lennie who lives with his wife Karen only a couple of miles from my house.  Lennie was asking for some assistance in cleaning up the weeds in his large backyard.  When I viewed his property for consideration as an MS Service Day’s project, I saw that Lennie could also use help with trimming a large Mulberry, help removing many random trees that had sprouted up alone his fence line and help hauling off trash that had accumulated over the years.

 Each year members of my church small group have assisted the MS Society by helping to build cement ramps, widen doorways and complete other projects.  This year we chose Lennie and Karen’s project.  I may not be able to rake or chop or haul or lift, but I can talk, and Lennie and I got to know one another while the work was getting done.

Lennie and I are Christians and as we talked I found out that we both have Harley Davidson and the biker lifestyle in our pasts too.  We spoke of his almost 30 years of marriage and how he had moved from Los Angeles to Bakersfield to be able to buy a home and make a better life for his children.  Before the MS force him to quit, he was a radiology technician.

Lennie told me about how he came to know CHRIST because of a neighbor in this neighborhood and how he now volunteers to run the sound board at his church.  He may not be able to work in the medical field anymore but he can still volunteer. 

Our group started at 8 o’clock in the morning.  My friend Phil had borrowed from a business associate, a big dump truck as well as a forklift with a dumpster attached.  That business associate came by to see what we were doing with his equipment.  He left and came back with a skip-loader, scraping the backyard after we cleaned out the weeds, trees and trash.  That was totally unexpected and really made what we did for Lennie and Karen look professional.  We filled up the huge dump truck twice, hauling away branches, grass, and trash.

Having MS does mean that we have to give some things up, but that doesn’t mean we want to sit and do nothing.  Talk to your friends and family and then call your local National MS Society office and let them know what skills you, your family, and your friends can bring to MS Service Days.  Many projects just involve house cleaning not construction, but if you got skills, bring them on, chose a project and you will have the best time and maybe even make a friend.

GOD has blessed me with some wonderful people to call my friend's and they in turn bless our community on MS Service Days because they are my friends.  Become a blessing.

[ms-is-not-the-boss-of-me]

'10 big brain benefits of playing chess'

My children no longer compete in chess tournaments but the "brain benefits" is why I still volunteer to coach at my school. 

On TV they like to show chess players as brainy kids who are first class snots and jerks when they compete or nerds with terrible social skills who get beaten up by "regular" kids.  Nothing is farther from the truth.  Chess is a gentle, polite game with manners incorporated in the rules.  Rarely do you hear insults or trash talk and the rivalries are fun and the friends made are lifelong if you play long enough.  A Chess Club is a safe place for the popular, the discipline problem, the un-popular and the shy kid.

If your child's school does not have a chess club, use this article to argue for one.

http://www.chessvibes.com/reports/10-big-brain-benefits-of-playing-chess

Reports | April 02, 2012 15:18

'10 big brain benefits of playing chess'

Not for nothing is chess known as "the game of kings." No doubt the rulers of empires and kingdoms saw in the game fitting practice for the strategizing and forecasting they themselves were required to do when dealing with other monarchs and challengers. As we learn more about the brain, some are beginning to push for chess to be reintroduced as a tool in the public's education. With benefits like these, they have a strong case.

1. It can raise your IQ Chess has always had an image problem, being seen as a game for brainiacs and people with already high IQs. So there has been a bit of a chicken-and-egg situation: do smart people gravitate towards chess, or does playing chess make them smart? At least one study has shown that moving those knights and rooks around can in fact raise a person's intelligence quotient. A study of 4,000 Venezuelan students produced significant rises in the IQ scores of both boys and girls after 4 months of chess instruction.

2. It helps prevent Alzheimer's Because the brain works like a muscle, it needs exercise like any bicep or quad to be healthy and ward off injury. A recent study featured in The New England Journal of Medicine found that people over 75 who engage in brain-stretching activities like chess are less likely to develop dementia than their non-board-game-playing peers. Just like an un-exercised muscle loses strength, Dr. Robert Freidland, the study's author, found that unused brain tissue leads to a loss of brain power. So that's all the more reason to play chess before you turn 75.

3. It exercises both sides of the brain In a German study, researchers showed chess experts and novices simple geometric shapes and chess positions and measured the subjects' reactions in identifying them. They expected to find the experts' left brains being much more active, but they did not expect the right hemisphere of the brain to do so as well. Their reaction times to the simple shapes were the same, but the experts were using both sides of their brains to more quickly respond to the chess position questions.

4. It increases your creativity Since the right hemisphere of the brain is responsible for creativity, it should come as no surprise that activating the right side of your brain helps develop your creative side. Specifically, chess greatly increases originality. One four-year study had students from grades 7 to 9 play chess, use computers, or do other activities once a week for 32 weeks to see which activity fostered the most growth in creative thinking. The chess group scored higher in all measures of creativity, with originality being their biggest area of gain.

5. It improves your memory Chess players know — as an anecdote — that playing chess improves your memory. Being a good player means remembering how your opponent has operated in the past and recalling moves that have helped you win before. But there's hard evidence also. In a two-year study in 1985, young students who were given regular opportunities to play chess improved their grades in all subjects, and their teachers noticed better memory and better organizational skills in the kids. A similar study of Pennsylvania sixth-graders found similar results. Students who had never before played chess improved their memories and verbal skills after playing.

6. It increases problem-solving skills A chess match is like one big puzzle that needs solving, and solving on the fly, because your opponent is constantly changing the parameters. Nearly 450 fifth-grade students were split into three groups in a 1992 study in New Brunswick. Group A was the control group and went through the traditional math curriculum. Group B supplemented the math with chess instruction after first grade, and Group C began the chess in first grade. On a standardized test, Group C's grades went up to 81.2% from 62% and outpaced Group A by 21.46%.

7. It improves reading skills In an oft-cited 1991 study, Dr. Stuart Margulies studied the reading performance of 53 elementary school students who participated in a chess program and evaluated them compared to non-chess-playing students in the district and around the country. He found definitive results that playing chess caused increased performance in reading. In a district where the average students tested below the national average, kids from the district who played the game tested above it.

8. It improves concentration Chess masters might come off like scattered nutty professors, but the truth is their antics during games are usually the result of intense concentration that the game demands and improves in its players. Looking away or thinking about something else for even a moment can result in the loss of a match, as an opponent is not required to tell you how he moved if you didn't pay attention. Numerous studies of students in the U.S., Russia, China, and elsewhere have proven time and again that young people's ability to focus is sharpened with chess.

9. It grows dendrites Dendrites are the tree-like branches that conduct signals from other neural cells into the neurons they are attached to. Think of them like antennas picking up signals from other brain cells. The more antennas you have and the bigger they are, the more signals you'll pick up. Learning a new skill like chess-playing causes dendrites to grow. But that growth doesn't stop once you've learned the game; interaction with people in challenging activities also fuels dendrite growth, and chess is a perfect example.

10. It teaches planning and foresight Having teenagers play chess might just save their lives. It goes like this: one of the last parts of the brain to develop is the prefrontal cortex, the area of the brain responsible for planning, judgment, and self-control. So adolescents are scientifically immature until this part develops. Strategy games like chess can promote prefrontal cortex development and help them make better decisions in all areas of life, perhaps keeping them from making a stupid, risky choice of the kind associated with being a teenager.

[ms-is-not-the-boss-of-me]

We went to Mexico to build 10 houses for Hands of Mercy.  The families are chosen by local pastors and the pastors tell us where to build.  It rained and blew like crazy the night before and all the sites were wet and muddy.  The rain kept washing the paint off the walls in the morning. 

The poorest villagers live on the mountainsides, but oh what a view they have! 

We build the walls and floors the weekend before the trip.  We load them onto trailers and drive them to Mexico. This is a two story loft house.

I climbed a muddy mountainside to get to our building site.  That is my 60 year old husband climbing onto the roof to nail down the peak flashing. The family's old home can be seen in the last photo.  No windows, a dirt floor and the roof is made out of the vinyl canvas of a large billboard sign. It leaks.

The new home owner has prayed for 17 years for a new home and she thanked GOD for HIS faithfulness and she asked GOD to hold off the rain, so that we could finish her home.  The wind and rain lessened.  As soon as we gave her her keys and said goodbye, the skys opened up and a heavy downpour fell.

GOD really has a good sense of humor.

Be the Hands and Feet of JESUS.  Volunteer for Hands of Mercy. 

[ms-is-not-the-boss-of-me]

SHOUT WORLD!

Shout world because HE came down to earth!  If we live as HE told us to, we will have a peace bigger than anything anyone can make on their own!

There is no GOD but GOD!  HE came down to earth because HE could see we were never going to find our way to HIM without HIS "Way". 

HIS word is love.  HIS gaze is mercy.  HIS smile is joy.  HIS mercy is peace.

I follow HIM because of the peace and healing and happiness HE has given me!  I love HIM not for the promise of life everlasting but for the life changing mercy HE has shown me and has asked me to share.

Do you have HIS peace?

[ms-is-not-the-boss-of-me]

Battling Fatigue

At the beginning of the school year my doctor prescribed Dextroamphetamine Sulfate for fatigue.  I took it for a few months, didn't have any bad side effects.  I was told by my trainer that I would lose weight, but I didn't.  I guess that was a bad non-side effect. Anyway, it helped some but I began getting really tired in the afternoon.  If I took a tablet after 11 AM I couldn't go to sleep till after mid-night.

I don't understand how that works.  A pill at 6:30 AM leaves me tired by 2 PM but a 2nd pill at lunchtime kept me awake at night.

Well at my last visit my doctor change my prescription to Methylphenidate HCL.  The drug work well and I can take a couple a day without any sleep problems.  Matter of fact I started sleeping through the night which I hadn't been able to do for months.

I also noticed that I was a bit more focused, I was getting more things done and my memory seemed to improve a bit. 

I found out last week that the marketing name for Methylphenidate HCL is Ritalin.  Ha!  I work in a school and I need Ritalin.  My co-workers told me I am much better behaved now.  = )

I am only taking 5 mg per pill but I wonder if my body will start tolerating it and I'll need to keep adjusting the dosage. Hope not. 

Is there an older adult out there that has been on Ritalin for a while?  Someone over 50?  Could you share how well the drug has worked for your fatigue?

[ms-is-not-the-boss-of-me]

HOPE COMPOUNDING

    When we have trials in our life, be that trial just a chronic irritation or a season of suffering; our reactions and our deeds shape us and declare to others who we are.  Our perseverance will bring hope and strength to our families, our friends, and those who watch us, believer and non-believer, and testify to our love for our GOD and HIS for us.  

[ms-is-not-the-boss-of-me]

Worry leads to being self-absorbed

I find that I spend a lot of time worrying about what others think of me.  I don't mean I am constantly worrying about it, but multiple times a day it does enter my mind. 

Take today as an example, when I arrived at work, I drove around the line of cars waiting to drop off their kids and I turned into the parking lot. I wondered if I was making someone mad by cutting in and "getting ahead" of them.  I'm parking, they aren't, but as I walk through the cars leaving after dropping off their kids, I wonder if the drivers I drove around are bothered by my actions. I don't want someone to be mad at me. 

As I push myself across the quad in my wheelchair I always struggle a little because the surface is sloped slightly and I am having to fight my wheelchair's desire to turn down hill.  I worry that someone is going to see me struggling and interpret it as my health is declining. I don't want someone to feel sorry for me.

When I sit in my wheelchair my clothing doesn't always stay down and cover my waistline.  I don't want people to notice I am getting thicker around the middle.  I don't want to be seen as getting fat. (I am now wondering if someone is thinking I am "fat shaming")

When I walk with my cane back to my car, I am often a little tired and I weave or stumble.  I don't want people to think I am drunk.

When I have trouble remembering a name or I use the wrong name, I worry that people might see that as me not caring enough to know their names. 

Right now I am wondering if as you read this you are thinking I'm _____________________________________ (fill in the blank).

Be honest, you have these frequent little moments too when you wonder if  your seen favorably. 

Why am I writing about this today?  It's because it occurred to me today that I worry more often about what you think of me and my actions, than I think about GOD or JESUS during the day. That needs to change.

[ms-is-not-the-boss-of-me]

I'm still here

Okay, I haven’t written since August 25th!  I haven’t even opened Tumblr.  Why did I stop writing?  Originally because I felt unimportant and overwhelmed, those dark thoughts were winning and bringing me down.  Then I got caught up in being busy and I stopped thinking about writing my thoughts. 

Ryan is encouraging me to write again.  Ryan is the young man that works with the different doctors at Kaiser, that are conducting drug studies.  I see him once every 4 weeks (sometimes more often) and I have actually become rather fond of him.  He is interviewing with different medical schools to get admittance.  He will start medical school in the Fall.

My daughter Sara has applied to attend a Bay Area College next Fall as well and Aaron my son will be leaving me as well to start college in the Fall.  All my children are leaving me!  Poor Frank, he is going to have to listen to me say things like,” I don’t see Sara enough,” or “This is the last birthday the Aaron will be at home with us.”  I’m sure he thinks these things too but he isn’t as vocal as I am. 

On the up side, my house will be easier to clean.  The kitchen and family room will always look neat.  I will only have one bathroom to clean instead of three.  Not quite an even trade though.  I love my kids, but I also can’t wait to see what/who they become.

My health has held steady for the last 6 months.  I am much stronger than a year ago.   I have been in the drug trial for a year now.  I still don’t know if I am on the placebo or the Tysabri. I suspect which it is, but I could be wrong.  I have been doing strength and balance training for almost 10 months.  I can lift my legs high enough to get my knee higher than my hip.  I can stand on one leg using a door-jam for balance. In October I walked almost a mile with my cane in the MS Walk.  I can now squat down to the ground and stand back up without relying on my arms to pull me up.  Things have improved.

The reality though is that I cannot exercise my way out of MS.  A week ago Tuesday, after helping to paint my brother’s home, my body quit working.  I couldn’t walk or lift myself.  After 15 hours I was able to get up but I still feel weaker than before I spent two days helping my brother.  That failure of my ability to control my muscles was sobering.  I will not give in without fighting but the MS will not go away quietly either.

In June I will leave the drug trial.  The drug company asked me to join a long term study of Tsyabri.  The drug would be free if I participate.  I am JCV positive and I do not feel like taking that risk.  I am going to try the two year treatment with Rituxan. 

In earlier blogs I discussed this option.  The treatment will destroy my B-cells (white blood cells that mature into plasma cells) and I must be monitored for a few hours during and after the infusion.  Dr. Langer said I can be treated here in town so I will not have to travel south for two hours.  Frank will not have to take a day off either.  

For those of you who don’t know, Rituxan (Rituximab) belongs to a group of medicines known as monoclonal antibodies. It is designed to recognize specific proteins that are found on the surface of some lymphoma cells. Rituxan may be used alone or in combination with other chemotherapy medicines to treat non-Hodgkin’s lymphoma (NHL) and chronic lymphocytic leukemia (CLL).

In smaller doses Rituxan is also used to treat autoimmune diseases such as rheumatoid arthritis and multiple sclerosis. It is often used in combination with other medicines such as methotrexate.  Rituxan can decrease rheumatoid arthritis symptoms such as tender and swollen joints and has proven to be a highly effective treatment for the most common form of MS (relapsing-remitting).  To treat MS, it is administered for two years, but of course there are possible side-effects.  There is also the likelihood of bladder, fungal and shingle infections.  Since I would most likely be getting bladder infections and I could be getting yeast and fungal infections as well as shingles, I am not thrilled about the treatment but if it results in a positive outcome on my health I’ll fight through the side-effects.

The drug is delivered as an infusion in a clinical setting because the most common immediate side effect is cardio; an ill-regular heart beat or slowed heart rate causing fatigue, requiring that I be monitored for a few hours.  I may be down and unable to work for a day or two after treatment starts so I am happy we are doing it in June right after school is out and after Aaron’s graduation. 

Now my life isn’t all MS.  I am having fun a work, working with the students.  My Chess Club has been doing well in competitions and this weekend we took first place in the 4th Grade to 6th Grade Division. 

Unfortunately one of the parents that was very involved and supportive of the chess kids, died un-expectantly last month.  His son (5th grade) is one of the most talented chess players I have been blessed to coach.  His daughter (4th grade) is positive and kind as well as talented.  Their dad was very involved in everything they did and this last weekend’s tournament was a hard one for them and their mom. 

I know GOD is with them now, but more prayers will always be to their benefit.  Mom has some tough decisions to make and she needs the help of good councilors.  I ask that you consider saying a prayer for this family even though you don’t know them, and thank you if you do.

[ms-is-not-the-boss-of-me]

BECAUSE

HE loved me first.

HE waited for me while I was a fool.

HE lifted me up when I hit bottom.

HE calmed my fears.

HE forgave my sins. 

HE taught me to forgive myself.

HE brought me love and family.

HE led me to love and joy in community.

HE made it possible for me to be truly happy even in illness.  

HE died so that I would know HIM. 

HE blesses me even though I know I deserve less. 

I love and follow HIM because HIS peace is enough. 

May you know HIS peace. 

[ms-is-not-the-boss-of-me]

A Generous GOD

I have often asked myself why an all-knowing GOD created the heavens, the world, and life.  I have heard it preached that HE did it for HIS glory, for us to worship and obey HIM.  That may be partially true, but I think it is too simplistic, narrowing GOD’s being down to being solely egotistic. 

We are very egotist, but like GOD, not exclusively. We like rules that justify our actions and interests, and we grumble, rebel and fight against rules that justly or unjustly limit and force our behavior. 

We were made with this tendency to be egocentric so GOD had a purpose in giving us this quality.  Being egotistic has resulted in some wonderful and terrible things.  The act of creating art; be it sculpture, painting, a garden, the written or spoken word can at times be the most beautiful, calming, inspiring vision, or it can be turned ugly for someone’s self-glorification and or pleasure at the expense of another.

I have also heard it said that GOD and HIS purposes are complex and wonderful beyond our understanding, and that I do freely accept.  HE gave us freewill.  Freewill means free ego.  At church today we have begun a group of sermons called “Generous” and the question was asked again, “Why?”, as Jeff, our lead pastor, began the discussion with our generous GOD.  Today has led me to thinking.

How is GOD generous?  HE created the circumstances that led to the universe, the earth, and the life I have today. I do not have breath and self-awareness, except for GOD. 

For centuries HE has communicated and blessed a people that HE called HIS people, with HIS Word and at times HOLY SPIRIT, even though HE knew that their egotistic nature would lead them toward rebellion and disrespect toward HIM and each other at times.  Our rebellion would cause HIM to need to come to earth and become the man JESUS, to teach and die a painful death in order to leave an example of how we can live with each other, in peace and love. How we can enjoy a real forever fellowship with HIM and with each other. 

HE did this even knowing our egotistic self-interest could and did lead to us using HIS message to justify what we desire for ourselves above what HE wants for everyone.  HE gave us HIS life and we gave HIM, holy wars, segregation, oppression, inquisition, upper and lower classes, holocausts, a third world, smog, ozone and our greed.  But we have also given HIM music, dance, joy, prayer, charity, love, wonder and true life changing repentance. 

For every Hitler there is a Mother Theresa.  I fight my egotistic nature to be less Hitler and more Mother Theresa.  How about you?

[ms-is-not-the-boss-of-me]

Time to relax, turn on my tunes and think pleasing thoughts:

Chocolate

my garden

my children

hugs

my husband

fluffy clouds

shooting stars

hugs

wild flowers

baby animals

friends

hugs

sunsets

driving in the country

chick flicks

hugs

chocolate

[ms-is-not-the-boss-of-me]

Busy, Oh So Busy

Hope everyone out there is in a good place.  I pray for those I follow, and I wish you happiness.

Well I haven’t written about my 6 month infusion yet because my attention has been pulled in a lot of directions lately.  A trip 250 miles north to see my parents, followed by 2 trips 120 miles south for benchmark tests and my monthly infusion and three days later a MRI.  That was followed by another trip to my parents, interrupted temporarily by a wedding 90 miles away, followed by driving to another wedding 1100 miles north.  All this occurred over three and a half weeks!  Next week I head north again to help my parents move.  Whew!

On the 22nd I had my 6th month infusion and benchmark testing.  I started with the benchmarks and a visit with Dr. Langer.  Remember that neither the doctor nor I know if I am on Tysabri or a placebo.  Let’s talk about my numbers:

Benchmark 1- How far can I walk with my cane in 6 minutes?

Feb 7: 278m and July 22: 365m

This to me is a BIG improvement because I was not struggling like I did in February, when I remember doing the “Frankenstein stalk”.  This is where I would swing my leg forward instead of lifting my leg and stepping forward.  This time I did not find it a struggle to walk for 6 minutes.  I did not push myself to walk at a fast pace, just a steady pace.  I do not remember if I pushed myself in February for speed.  I did push to go as far as possible.

After I walk for 6 minutes, I continue to walk to see if I can reach 500 meters total.  In February I remember holding onto the wall, telling people to step aside so I would not have to walk around them, and finally I just said “I’m done.”, and sat down on the ground leaning against the wall.  This time I easily walked to 500 meters.  Woo Woo! Every summer I have gotten weaker and when I return to work in the fall, I am walking noticeably slower and relying more and more on the wheel chair.  Part of it I think has been the stress caused by the heat of summer (90s to 110 degrees).  At least the humidity is low.  Part of it has been the lack of physical activity because I am not working while school is out and I do not have somewhere I need to be every day. 

I have had relapses in summers past.  Years ago, 5 years I think, when I had a relapse in late June, my doctor prescribed a steroid infusion treatment.  1 gram of steroids pushed over 30 minutes for 3 days straight. I did not sleep for 4 days and on day 5, I blew up with swelling caused by water weight I guess.  This swelling was very painful, especially in my joints.  It was more than a few weeks before I felt normal.  I swore I would never do a steroid treatment again unless the relapse was making me feel worse than the steroids made me feel. 

I have relapsed since then and I have not call the doctor because what was she going to do that would improve how I felt?  I have been told that I have risked my health, and I have been scolded, but my treatment is MY treatment and I will decide cost/benefit.  It is my choice.

Oh what a rant!  Let’s get back to talking about my numbers.

Benchmark 2 - Peg Test-how fast can I do it? Feb-right-27.8sec    July- right-22.2sec           left-21sec                  left-23.9sec The peg test involves picking up inch long pegs and placing them into holes then removing them again.  I remember being sloppy about picking up the pegs in February.  I would knock pegs out of the swallow bowl while trying to pick up a peg. The pegs would fall on to the floor and Ryan and my husband would pick them up and place them back in the bowl while I continued to place the pegs as quickly as possible.

My time on my left hand has improved but my time on the right has actually declined.  The difference this time was I did not feel as sloppy about picking up the pegs.  I didn’t knock one out bowl more than once or twice.  Next Benchmark is the Symbol Digit Modality test.  This test was developed as part of a rating scale for Huntington’s disease.  A modified version is used as a neuropsychological test for MS. Benchmark 3 - Symbols Test – how many matches in 90 seconds?

Feb - 49 correct out of 49 attempted July - 51 correct out of 51 attempted

This test is kind of frustrating to me because each time I take it I am reminded of how much I have lost in my ability to memorize code.  I use to love to do things like this and quickly learn the symbol patterns.   I was great at those games where you turn over 2 cards trying to make a match.  No more.

I also use to remember with no effort how to get back to any place I had been to within a few years.  Now when traveling, I cannot remember how to get back to the freeway if I can’t see the freeway unless I have traveled the path multiple times. Now my parents are moving to a new home in a new community and I am very aware that I need to study how to get there and back. Thank goodness for GPS.

  Okay, now looking at the benchmarks, am I getting better or not?  Am I on the drug or the placebo? 

I have asked myself more than once, if the treatments I have had in the last 7 years have slowed the progression of my disease, or hastened it?  As I have said, before being diagnosed I had had symptoms I now connect to MS since high school (35 years). I did have some lost some of my mobility, can’t run can’t jump, before being diagnosed but in seven years I have gone from being able to walk unassisted for 2, 3 miles, being able to clean my home in one session, being able to stand and cook a special meal to not being able to do any of those things.

This summer I have felt better than I have in the last few years.  I still can’t run or jump, but I can walk further and I have been more adventurous in the kitchen.  I have started to clean out those closets than contain stuff I haven’t used in more than 5 years or stuff I just don’t need. I was not exhausted by the last three weeks!!!

Is it Tysabri or no treatment at all?  We will have to wait and see.