The Big White Elephant.

The White Elephant in the Room…I remember hearing this expression as a child and not understanding what adults meant by it, not getting the sarcastic notion implied. Today, when I hear it, it makes me laugh. I love elephants – not the white ones that everyone wants to ignore, the gray ones…for their genuine nature, the way they truly pull together as a team, and a family, the way the bond for life and mate for life. They love each other regardless of how the other elephants look or if they are injured or hurt. There are some humans that could learn a lot from how the elephant families stick together. That’s a different topic for a different post, though.

Today’s post is about the white elephant that perks eyebrows, that makes even the most reclusive person in the infusion center look up from their magazine, book or Ipad when they here the three letters. It’s as if we have our own dirty little secret brewing in the lab…and we don’t want anyone to talk about it. I think it’s all because there hasn’t been enough talk about it.

So, what is the white elephant? PML. Well, actually there are two elephants. It’s almost as if they jockey for the space in front of us, taunting us for 1st place, seeing who can hold fears hand best. PML and JVC. Fear not….with knowledge of these two three letter acronyms – you can feel a little more empowered and turn these white elephants into smaller creatures, like, oh – maybe kitty cats…that just need a little bit of monitoring and attention every now and then. That attention we need to not take lightly – and that’s why we are all enrolled in the TOUCH program, and why we have wonderful caring nurses and doctors and pharmacists who are all enrolled in the TOUCH program.

OK – so what is PML. In a language that we can all understand puhleeeze! PML is short for progressive multifocal leukoencephalopathy, which is a rare brain infection that usually causes death or severe disability. Tysabri increases the risk of gettting this infection – usually if you have a weakened immune system.

 The Tysabri Website says:

Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other treatments for Multiple Sclerosis (MS) and Crohn’s disease (CD). You should not take certain medicines that weaken the immune system at the same time you are taking TYSABRI. Even if you use TYSABRI alone to treat your MS or CD, you can still get PML.

  • Your chance of getting PML increases if you have been exposed to John Cunningham Virus (JCV). JCV is a common virus that is harmless in most people but can cause PML in people who have weakened immune systems, such as people taking Tysabri. Most people who are exposed to JCV do not know it or have any symptoms. This exposure usually happens in childhood.
  • If you have been exposed to JCV, your chance of getting PML increases even more if:
  • you have received TYSABRI for a long time, especially longer than 2 years
  • you have received certain medicines that can weaken your immune system before you start receiving TYSABRI

Your doctor may do a blood test to check if you have been exposed to JCV before you start receiving TYSABRI or during your treatment. There may be other risk factors for getting PML during Tysabri treatment that we do not know about yet.

On another Blog, I found this information:  (by Julie Stachowiak, PhD )

The US Food and Drug Administration just approved a labeling change to Tysabri (natalizumab), which states that people who test positive for JC virus antibodies are at higher risk of progressive multifocal leukoencephalopathy (PML) if they take Tysabri.

 

I should start by mentioning that the scientific community has been studying the predictive ability of JC antibodies to indicate that people with a positive test are at an increased risk for PML, however, the test only recently became commercially available. There is now a new lab test from Quest Diagnostics, called STRATIFY JCV.
What does this mean and why is it relevant? Well, this means that doctors and people with MS can now make more informed decisions about Tysabri than before.
JC virus is the infectious agent that causes PML, a potentially fatal brain disease. However, many people in the world have been infected with the JC virus. The virus does not appear to cause any disease in people unless conditions are “just right.” In a small percentage of people who take Tysabri (and a few other medications), conditions will be just right for the JC virus to proliferate and cause PML, as certain immune cells that usually keep this virus in check can become depleted.
S0….what is the JCV Virus…the OTHER White Elehant in the room?  it’s the John Cunningham Virus.  A Virus that the majority of us pick up as children.
What does all this mean?
It’s still quite scary and it’s all still quite confusing.  Really.
But to be honest.  It means making a list of checks and balances.  Going back to the basics.  Pro’s and Con’s.  What is important to you.  For me…that means Prayer.  Praying to God.  Talking to my husband…and putting God first and prioritising.  God, Family and then work. Figuring out how to manage all things and balance all things.  For me – Tysabri is a gift – full of blessings.  And yes, I do test positive for the JC Virus.  I have since day one.  I have recieved #43 infusions.
For me, I keep a close watch on daily symptoms…a weakness in my balance is not something I take lightly.  I really monitor it – because I don’t want to risk that being a symptom of PML, that’s hidden.  It’s a kitty cat in the room that I have to pay attention too.  Not so much a white elephant that I don’t understand or that I ignore.  I hope you won’t ignore your PML or JCV like it’s a white elephant.  Knowledge is power – you should emplower yourself.  Visit sites and learn, call the TOUCH program and ask questions, don’t leave your docors office or infusion center next month until you feel like your fully understand all you need to understand. And by all means, don’t let them brush you off with hurried answers….get the answers you need and derserve – remember  YOU are the patient and YOU are paying to be there!
Tame your Elephant.
God Bless.
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Doing Great on Tysabri and Our Facebook Page is Growing!

Hi Everyone!! Wow! I logged onto facebook and was quite surprised to find our Tysabri Princess page had grown to have 94 likes!! That’s great. How encouraging! I will make an effort to make regular blog posts and be sure to try to answer any questions that come up about Tysabri…on the Facebook page. Feel free to post any questions you have regarding Tysabri. There are several friends at the infusion center I go to that would be happy to answer any questions that I may not be able to help with.

Don’t forget to use your COOLING VESTS this summer!! the HEAT is one of the worst things for MS. I use a cargo vest that I put gel ice packs in and small coolers ice packs in. You can’t even tell I’m using it as a cooling vests. I also have a couple of the traditional cooling vests, one that takes the ice packs and one that you soak in water that works off of evaporation – both work nicely. Other tips for keeping cool in the heat – 1. Stay Hydrated and 2. Visit a local shopping mall to take advantage of the air conditioned space, and a nice cool area to walk or scoot around. 3. Wear a hat for shade from the sun and 4. Stay out of the heat when possible!

Having said all that…I am about to pass that THREE YEAR mark on Tysabri! I am three years relapse free – and doing very well…I am stronger than when I was diagnosed…working full time – and full of energy. Tysabri is such a blessing to my life…the way that it has restored my energy and given me back so much of what MS had taken away.

I am so blessed to have such wonderful doctors, nurses, family and friends that have paved the way for Tysabri…and of course, for such a loving God.

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Cayman Inspiration

Check out our new support Group!!  Very exciting! 

http://www.facebook.com/#!/CayInspiration

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New Year – New You!

Okay – in reality, maybe not…but in reality – everyday IS a new opportunity for you to make the most of what is the beginning of what can be the rest of the new outlook you make bright and shiny!  Try finding the positive instead of the negative.  Try pacing yourself….use the popular spoon theory (here is a link if you aren’t familiar with it:   http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf).  Find a motivational theory that works for you this year – that keeps the positive thoughts with you throughout the day – instead of the negative.  Live. Laugh. Love. Pray. 

Stretch your muscles. Stretch your mind.  Set a goal or two.  Try hard to achieve them.  Write them down this year.  Put them somewhere you can see them.  Make them achievable!  Maybe make it something that you really want to do – but just never make the time to do it….like, maybe you want to have a picnic this year, or walk in the park.  Lets look at an example: maybe you want to run a marathon but you don’t run at all….so instead of setting your goal for ”I want to run a marathon” - how about set your goal for “going for a run” – that’s a good start!  then, after you reach that goal, step it up a little, make the next goal be “go for a longer run” and then eventually you might reach your ultimate goal….take it one step at a time….after all – every step counts!

Enjoy 2012.  My goal for Tysabri Princess…..Post at least Once a Month!  Hopefully more often :) .  My Initial Goal – is to post again before February :) .  See you soon!

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Confessions of a secret keeper

Our infusion center has two nurses, most of the time. I would imagine they follow protocol….asking us all if we have any new MS symptoms as soon as we come in…before we get any other information checked. Now key here would be interpretation, I guess. MS symptoms, hmmmm.

Ok, so I may have had a few symptoms that I may have been in slight denial about over quite some time. I did after all have to determine that they were indeed MS symptoms before disclosing these to anyone…after all I do not like to complain.

In all seriousness, I did learn that this can be a very fine line to teeter on. Letting your nurses know about your symptoms are very important, and should be considered more of a type of informing them, rather than a complaining to them. Anytime we experience new symptoms of any kind while on a treatment like tysabri, we should let the nurse or doctor know about them. If the symptoms happen during the weeks in between treatments, informing your nurses or doctors about them is still a Good idea…in fact, the more information you can give them, the better.

The information can help them determine what medication you may or may not need. It can also help them evaluate your current and future risk of exposure to PML and other conditions. Finally, if your infusion center is open and airy like the one I go to….basically one big room with little curtains (that no one uses) then your sharing of symptoms – well, it makes the rest of us, feel a little bit normal…at least for that ONE day out of the month…giving us other people to relate to!

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Subscribe!

Martha has graciously upgraded the blog and added a subscribe button!  On blogspot and other blogs, this is referred to as following – so follow me, subscribe to the blog – whatever you want to call it :) ….it now has a subscribe button making it possible to get updates automatically.

Check out another Tysabri users blog – amiamess.blogspot.com!

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Each person’s progress

Each of us, with MS or not, have arrived at where we are through our own journey’s in life.  I wanted to post this evening about how Tysabri has helped me reach new places and go further distances in my journey.  I think our journeys are part of what makes us who we are.  Good things and bad things – they mold us and help to give our character the refined edges they have as we grow and continue our journeys.  (I know I had mentioned posting on fatigue next – but this is what was sparked on my last journey – so I wanted to share it as soon as possible.  Fatigue will be next! promise).

About two years ago, my family of 4 set out on a Fall vacation or holiday.  Our holiday was in the picturesque mountains in a wonderful cabin situated on a gorgeous hill with a small flowing stream at the bottom.  The cabin had a hot tub on the outside deck that overlooked the stream, a fire pit that was situated just off the path down to the stream, complete with picnic tables and rock border for safety.  It was a dream!  and it was one of the best holidays we have had.  No complaints at all!

I had just started taking Tysabri when we began planning for our mountain escape.  The planning that went into the holiday was extensive….how many stairs were there to the bedroom, did the cabin have a ground floor bedroom, how steep was the hill to the stream.  Was there a wheelchair ramp to the front door.  What activities were around that would use little to no energy (watching the stream and watching the kids make smores!).  The considerations that had to be made for that holiday were extensive. We had a great time and I was very cautious as to what I did…and energy was still a premium resource for me, so activities were well planned around lots of rest.

Fast Forward two years….zzzrrrrrrrpppppppp….to NOW.  My family of 4 just completed a marathon holiday!  It was wonderful…we started in Miami, after my infusion treatment.  We flew into Seattle, and did a rode trip up to Vancouver where we spent 4 or 5 days.  Let, me just tell you…..we visited the zoo (TWICE) – one time of which we pedal biked our way through…with ME helping to pedal.  We went to the sea aquarium at Stanley Park and walked the entire thing, no wheelchair or walking aide assistance required.  We ventured up Grouse Mountain and my 2 Caribbean Boys saw Snow for the first time!  Played in it. We then hiked a very small way up the mountain (I hiked!) to see the bears…and some birds.  Big Bears!  We then raced back to catch the sky tram before our parking time ran out….(yes, I raced too!).  After our Vancouver ventures were over – we went to Seattle and met some additional family, where we walked the entire Market on Pike Street, explored the Seattle Space Needle and did an awesome duck tour (boat or truck? it’s BOTH).

We then all put our Sea Legs on and boarded a Carnival Cruise Ship and cruised up Alaska and enjoyed whale watching, train rides and small hiking excursion and bird sanctuary and a double decker bus ride tour.  The boys were a bit overwhelmed with all of these items, but they really enjoyed themselves.  We cruised, we ventured, we ate!  We did excursions and tours.

I had to stop and really think about the last time we planned a proper holiday, which was that fall trip in the mountains.  So much worrying over how to incorporate a holiday into MS.  This time, it was how to incorporate more stuff than I could imagine and almost forget I had MS!  LOL!

Tysabri made a huge difference for me. It is making my journeys in life much more pleasurable and enjoyable  Its making my journeys be MY JOURNEYS again.  Not some journey that I have worked around my MS symptoms and the ramifications of what will happen.  Oh no…..Ty has made it so I am ME AGAIN :) .  In all seriousness, I was able to plan for this holiday and not even think about how any of the places we went or the activities we wanted to do would be affected by my MS or effect the MS itself.  It was like forgetting that I had it (almost).

Reality did kick back in, as we landed in Cayman and the heat permeated the air.  I am still adjusting to the hotness, the stickiness and the UV rays.  I sure do love my home and my Island, but it sure does take my body some time to adjust to it.

Hope everyone’s summer is going great and that you are able to do all you wish…with or without MS and hopefully, if you have MS it is with Tysabri on your side :) .

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Diagnosis

Two topics that come up, almost always, when talking with other persons with MS is Diagnosis and Fatigue.  Today, I’m going to blog about Diagnosis.

Most often, I am asked about when I was diagnosed, and if that was the “start” of my MS.  Most of the people reading this blog have likely been diagnosed with MS for several years…as Tysabri is not usually the first line of medication given to patients.  Most of those people will have their own story about just how long it took them to reach a real, true diagnosis.  For my own self, my symptoms starting showing up in my last year of college.  I was originally diagnosed with outdoor asthma, and walked around with an inhaler in my purse for several years.  Truth be known, that was the heat!  and it was affecting my ability to be able to walk properly…had nothing to do with asthma.  Later on, it was rheumatoid arthritis and carpel tunnel syndrome - but those didn’t stick either, then lupus, but again, not tests could prove it.  Finally – after more than 15 years, I was diagnosed with MS…and had the scientific MRI’s to prove it.  Not to mention all of the symptoms.

I didn’t live those 15 years thinking “something is wrong”.  I felt quite fine actually.  My MS was not very active…and I lived a very enjoyable life.  Even now, I don’t feel like anything is “wrong” until it hurts to walk….or I can’t see correctly….or my legs don’t work!   Even when they were diagnosing me with rheumatoid arthritis, I remember thinking, “hmmm, I don’t feel like I have that!  Just my thumb hurts!”.  and life went on….as the symptoms would go into remission before the test results even came back.  I would feel a bit silly for making such a big deal over something that must have been really small, as it wasn’t there anymore!

So, to keep this post short – diagnosis can take a LONG time.  In my case, I don’t think that was so bad.  I probably would have made a lot of different, “safer” choices if I had  known about my MS.  I probably would have not up and moved to a different country…I may not have had children…I would have never gone sky diving or deep sea diving!  I am thankful that my diagosis happened when it did and that the treatment that I have is available.

Next time…we can talk about Fatigue….right now…..*yawwwwwn*….I am just a little bit tired :) .

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Does stress impact MS?

If you google “stress research” you get about 315,000,000 results back!  There is a lot of study and research that goes into this topic.  We all experience stress.  There are, as research shows, good stress and bad stress.  Good stress would create excitement and joy in our lives…bad stress would create the opposite feelings.  So, since we all have stress, the question comes up…how does it impact MS?

I was recently under an extraordinary amount of undue stress.  This was definitely the “bad” kind of stress.  I noticed several things about this stress.  It certainly used up a lot of my energy.  Just the thought of having to deal with anything related to the stressful situation was exhausting….physically, emotionally and mentally too.  My cognitive skills were impacted greatly while under this stress.

While experiencing this stressful situation, I was not quite aware of the exact toll it was taking or the impact it was making on my MS.  The stress however, caused me to have an increase in MS symptoms and a severe lack of energy.  The stress induced lack of energy made it hard to concentrate and to stay focused on work items – even on sending simple emails.  I became more aware of the impact the stress was having when I removed myself from the stressful situation, my energy levels would increase back to their normal level and the MS related symptoms would fade.  As soon as I would reintroduce myself to this environment, the symptoms would come back and the energy would diminish.

My main symptom that was causing me much grief was the partial loss of vision in one of my eyes.  This is the same eye that I experienced optic neuritis in prior to being diagnosed with MS.  This was a bit scary, but a trip to the opthamologist and a quick check on my retinal nerve, showed no permanent damage.   even though my vision was still impaired.   This meant that my vision would likely come back.  Thankfully, this was without any pain.  So, was all this really stress related?  Was this an MS relapse? Could stress really cause something like this to happen?

Of course, research shows this to be the case.  Some researchers even indicate that stress is the single most worst factor when it comes to our health.  After my recent experience with undue stress, I can see how this would be rather impelling to research and try to scientifically prove.  It would be my recommendation to try to avoid all undue stress if at all possible.  I have since removed myself completely from the stressful environment, and found much calmer waters to surf in.

Not all things related to stress is bad though.  This experience with stress has caused me to re-evaluate my current surroundings – and be much more thankful for what I have around me.  Thankful for my family, my friends and my employment circumstances and the people I work with.  I am thankful for the current MS treatment that I am on, my friends that share this journey with me and my nurses and doctors that make my treatment possible.

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Sunday May 22, 2011

Happy Sunday to all!

Robot Walking?  have you experienced the robot walking symptoms?  Your knees slowly, as you get more tired throughout the day, begin to not bend quite as much as they “normally” do.  Your feet start to not come off of the ground as much as they “normally” do.  You begin to walk like you’re joints are all locked up.  Like they are locked into a non-bendable pose.  Your all “tight” and walk teeter tottering like a robot!!  This is actually called spasticity.  I personally would have never thought that – as spasticity sounds like “spasm” to me – so I would have gone right over that particular word and kept looking :) .

I have robot walking symptoms sometimes.  I especially have these when I am over-tired or have done too much physical activity.  If I exhaust my energy, sometimes I have this for several days – however, once I get up and start moving around, it eases up somewhat – but as soon as I sit down again, it all ‘locks’ back up.  While on Tysabri, I feel so good most of the time, that it is very easy to overdo things….and forget that MS creates some limitations.  The good news for me, is that this is a symptom that with rest…will go away!!

I’ve made a new tab called “symptoms” today – if you would like to share some of your symptoms – please feel free to post them…I think it helps us all when we share our symptoms!

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