We lost a great advocate for MS.

Portland Trailblazer fan-favorite and MS advocate Jerome Kersey passed away February 18, 2015. The cause of his death is unknown at the of this post.  Hearing of the passing of Jerome Kersey made me very sad.  I did not have a chance to meet him personally.  I did see him on several occasions out and about in Portland.  He regularly attended MS events and supported his wife Teri is battle with MS.  

This article from August of 2014 gives a better perspective on his role as care partner:

www.columbian.com/news/2014/aug/07/ex-blazer-lends-his-voice-to-wifes-battle-wit/ 

Being from the Portland area and knowing the community I know the community will be there to provide love and support to Teri and her children.  

I always loved the now retired Bill Schonely's Trailblazers broadcaster's call of "mercy mercy Jerome Kersey" when Jerome made a great play.

I know we'll be praying for his family to find peace in time sadness.

Thank for reading.

-Brent

Reject Defeat

Take charge of your MS health!

Does the American healthcare system have your best interest?  I say no, it does not.  I think the American health care system is simply a disease management system. There is so much money made in disease management why cure anything?  For instance Jenn uses Copaxone for her MS.  Without insurance the cost for a one month supply of Copaxone is $3,297!!!  That's $39,564 per year with a crushing $108.39 a day!  There are not many people who can pay that kind of out of pocket cost.  From the business side of this I understand there is research and development, trials, licenses and so on that costs a lot to bring it to market.  But $3,297 a month?  With that being said.....most (if not all of them) do have financial assistance programs if you need it. Below is list of some of the most common MS treatment drugs and their financial assistance program:.

• Copaxone:://www.copaxone.com/shared-solutions/copaxone-co-pay 
• Avonex: http://www.avonex.com/avonex-cost-financial-services.xml
• Rebif: http://www.rebif.com/pages/affordable-access/patient_assistance_program
• Tysabri: http://www.tysabri.com/tysabri-cost-and-support.xml
• Betaseron: https://www.betaseron.com/betaplus/affordability

Don't get me wrong.....doctors and medicine are absolutely necessary and can be a great thing.  There are a lot of fantastic doctors who really want the best for their patients.  The problem can be the system itself.  Let me ask you this....how long do you wait in the lobby to see you neurologist?  When Jenn was going to her first neurologist (who we both like) we waited up to 3 hours after the scheduled appointment time.  And we were stuck because the wait time to get another appointment was normally months.  We finally made the discovery that he triple booked his appointments.  Our work around was to call a couple hours ahead and ask how far behind he was and go in later.  Once we got in to see him it seemed like just seconds and he was off to the next patient.  This is how it works.  Almost every clinic gives their doctors 7 minutes with regular patients.  Intake appointments are much longer and the doctor most often schedules full days of intake appointments.  To make sure we got the most out of our appointments I would right down questions we had and if there where forms he needed to sign I would fill in everything for him except his signature.  Otherwise we had to leave it there to be completed at a later time.........a much later time most often.  It wasn't ideal but it worked.

The other portion of the healthcare system is pharmaceuticals. Pharmaceutical companies have armies of lobbyists.  The pharmaceutical industry spends the most each year to influence our lawmakers, forking over a total of $2.6 billion on lobbying activities from 1998 through 2012.  That is by far the most of all lobbyists. To get some perspective on just how big that number is, consider that oil and gas companies and their trade associations spent $1.4 billion lobbying Congress over the same time frame while the defense and aerospace industry spent $662 million.  Now you see why there is a prescription for everything.  These companies make mega money off of people being sick.

Here's the real danger in it. You can be over medicated very quickly.  We found this out first hand.  When's Jenn's health was really down she ended up with a pharmacy in our cupboard.  She had pills for tremors, fatigue, vertigo, sleep aid and so on.  Every neurology appointment we left with a fistful of prescriptions.  Jenn topped out at 14 different medicines a day.  One night while having dinner I looked across the table at her and realized her eyes were ridiculously glossy and she looked dazed.  I asked her how she was feeling and she said "ok, I guess....I just feel pretty numb".  Right then it really hit home how over medicated she was. We took out all of her prescriptions and reviewed them.  Holly crap!  The side effects all counteracted one another.  The one to treat vertigo makes you tired and the one to treat fatigue makes you dizzy and so on.  It was shocking.  Our mistake was assuming the doctor was aware of the side effects of each one and would prescribe ones that played well with the others.  Not the case at all.  That night we flushed everything down the toilet and just kept the Copaxone.  After the drugs left her system she was feeling a ton better.  Do yourself a huge favor and really analyze any prescriptions to prevent over medicating yourself and doing you more harm than good.  More meds does not equal better quality of life.

Pharmaceuticals are needed and they are a good thing.  You dictate how you treat your MS and let your doctor know what and how you are doing and they should provide care that compliments what you are doing.  Take charge of your MS treatment and know everything you are taking! 

Next post: The National MS Society is your friend.

Thanks for reading.

-Brent

Reject Defeat

Merry Christmas

Every year Jenn and I watch A Charlie Brown Christmas.  It never fails that every year we find something new/different to take from it.  This show was made in 1965 and is so timeless.  The one thing that really stood out to me this time was commercialism of Christmas vs. the real reason for Christmas.  We say every year "wow, Christmas seems more commercialized this year".  Then I see the Charlie Brown being frustrated that his friends are all about how many presents they can get and that they are the "right" ones.  Even in 1965 Christmas was busy with most of the things we see today.  However, at the end all the kids realize spending time with each other was more important than gifts.

Most MS fighters I know could care less about material items.  They value relationships.  Material items come and go but good relationships last a lifetime and if you have those types of relationships don't let them go.  When you have good relationships you don't need many.  In fact if you have 1 solid relationship you are blessed.  Hopefully you get the opportunity to spend some time during Christmas with them.

As a MS fighter or a care partner you spend all year battling MS and all the garbage it brings.  One thing Jenn and I learned was to slow down, relax and enjoy family, friends, movies and of course great food.  It's easy to caught up in the hype and the hustle.  Christmas really is special and for us slowing down, relaxing and taking in everything has been a blessing.  Not only do we get to really savor the moments but MS issues that can (and often do) pop up from all the stress and hustling around are not an issue.

For Jenn and I we celebrate Christmas for the birth of Jesus.  We say "Merry Christmas" to everyone (even when they say Happy Holidays).  We love Christmas, the reason for Christmas and being able to put health issues aside as much as possible and simply enjoy.  We hope you and your family can do the same.

Next post:  From a wheelchair to walking.

Merry Christmas.

-Brent

Do you have Hope or Faith for an MS cure?

Do you have hope or faith there will be a cure for MS?  Does this seem like an odd question?  Maybe you say "I have both".  It's kind of a one or the other choice.  Let me explain.  Marian-Websters dictionary provides the following definitions for both.  Hope: a feeling of expectation and desire for a certain thing to happen.  Faith: complete trust or confidence in someone or something.  Does reading the two definitions change your view on hope and faith?

It seems to me that as a society we have made both hope and faith mean the same thing.  That's a mistake. Both have a great purpose but they need to be separated from each other.  I remember as kid at Christmas I hoped that Santa would bring me a certain toy(s).  Did I have Faith that Santa was going to bring me them?  No, I figured it was 50/50 shot and sometimes far less because I really made some of my toy requests a bit outrageous and I would put it in the "doesn't hurt to ask" category.  

Part of the mental and emotional battle with MS is to have both hope and faith.  If you don't have either one you have sentenced yourself to a mental and emotional jail that MS is the warden.  Not good.  Having hope and faith everyday is fuel for better health.  Not only does this help you it also helps your care partner or support people.  When people know you are hopeful for a cure and that you have faith that things will get better it makes it easier for them.

Having hope and faith will not be easy all the time.  It will challenge you.  When you are in the middle of an MS storm it can look easier to lose hope and faith than to gain it.  This is time when you dig your feet in, ball up your fists and shout "no way, you are NOT taking this from me".  You do not have control of what MS does to you physically.  You do have control of your hope and faith and MS cannot take it away.  The only way you lose it is to give it up.

Jenn has been through some big battles.  She always had faith that things would get better.  She would say that it she did not to get 100% better but greatly improved.  I know big part of that was having faith that it was going to get better.  Don't ever give up hope or faith!

Next post: Merry Christmas

Thanks for reading,

-Brent

Reject Defeat

Holidays + Stress = MS nightmare!

The holidays can be a stressful time.  Worrying about planning, cooking, traveling and even worrying that your favorite uncle is going to end up passed out in the bushes again because he drank too much.  Stress + MS = bad news!  I know for Jenn stress makes her MS pop up to say "hello".  This did happen for her at the holidays.  For a few years I was confident of two things during the holidays.  One, Jenn's dad was going to watch the movie A Christmas Story a minimum of three time and second would be Jenn would get stressed out and her MS would give her troubles because of it.

I have often wondered how the Holiday's have seemingly become way more work and stress than they are enjoyable.  Maybe it's people competing to keep up with relatives or others around them with presents, cooking, decorating or travel.  Whatever it is obvious people get pretty worked up about holidays.  It's sad to me that holidays create this much stress for some.  It's almost like a wedding.  Everyone has to be "performing" at a high level.  It can be a total performance trap.  The real trap is that you can never live up to performance you want.  

A few years ago Jenn was particularly stressed out during the holidays.  Her MS started giving her troubles because of it.  After that holiday season I sat down with her and asked "why do you put so much stress on yourself during the holidays?".  She said "she was concerned that her MS was going to be a focal point and she wanted to do everything she could to mask or redirect it".  I said "It's not the focal point, the stress is murder for your MS and please quit doing it".  

When she made the decision to not stress during the holidays a couple things happened.  She looked forward to them and now enjoyed them.  Her holiday MS flare ups are gone.

Here are some tips I found to help avoid Holiday stress.

Notice the physical signs that you are suffering from stress. Having MS you are likely very aware of how your body is doing.  Some signs are:  Exhaustion - most MS fighters already battle this and trying to go above and beyond your capacity is going to compound it.  It is not something you cab fix with a night of proper sleep. You know the tasks on tasks you volunteer for have consequences, but you are not able to stop!

Notice the mental signs that you are suffering from stress. 

Irritability: Everything irritates you, and you do not know why. Unfortunately, this means you've forgotten to see the charm of your life, and you've started imagining that work's getting harder and your kids more demanding, forgetting the joys and only seeing the hassles.

Lack of resilience: Your boss criticizes one small detail in the paper you have spent months getting ready to free up time for the holiday break. You fall apart, sobbing. She looks at you like you are from outer space, and you begin to think she has a point.

Negative feelings: You are already planning to be disappointed by Christmas dinner or the New Year's party. Every other year has been a washout, so this one will be too. Oh, why even try? you start to wonder. You are setting yourself up for disappointment.

Feeling down, feeling the blues, or depressed: An inability to shake off the blues is a warning sign that stressors are getting to you. This is one step removed from negative feelings, which will also accompany feeling down but may also involved feeling like giving up.

Take a break. 

This time of year can fluster even the most unflappable.  If you are responsible for the majority of holiday preparations and planning you are under a lot of pressure.  Despite the fun moments you sometimes share, it is like your are overloaded.  If you have overlooked your own needs amid this; it is not surprising that you are feeling stressed.  Some of the things you might benefit from include:

Blocking out several hours every few days for rest. This is you-time and it does not involve flipping through magazines planning Christmas lunch or New Year's Eve cocktails. This is time to shut your eyes and put your feet up. Do anything other than what is expected of you.

Treating yourself to a massage or a spa visit. Amid all the chaos, seek some serenity. (Men, you are allowed to go to the spa, too, although manicures or pedicures are strictly optional.)

Taking time out to chat with a friend or two. Share your ideas for making it through the holiday season with greater ease. You might even help one another with babysitting arrangements or sharing tasks.

Visit your place of worship or spiritual spot more often than usual. Take time to pray, meditate or sit in a state of silence and peace. Allow the peacefulness to wash over you and remember the spirit of the season.

Eat well.

Do not devastate your energy levels by starving yourself over the holiday season.  Stay away from sugary, fatty, and unhealthy snacks that can take the place of healthier food.  It is fine to indulge in moderation but do not use it as an excuse to stop eating well.  Changing the way you eat as a reaction to the stress of the holiday season might seem like a way to make you feel better, but this can lead to weight gain. This can cause more stress and hurl you into another vicious cycle and a possible MS flare-up.  Eat three healthy meals a day and keep most of your snacks healthy. Focus especially on vegetables and proteins. Indulging occasionally is fine.  Eating less? Some people respond to stress by not eating altogether. This is hard on the body as well, draining you of much-needed energy. Indeed, you might take in so few calories that you cannot maintain your energy during the day, which is not helpful to your health.

Watch your alcohol intake. 

Alcohol is often relied upon to ease stress during the holidays.  Drinking more than usual and increasing frequency can more often increase stress, cause weight gain and cloud your judgement.

For events such as New Year's Eve, let yourself have a glass or two of the best wine or sparkling drinks instead of drinking to get drunk. You deserve the far better experience.  At the same time, let yourself unwind after a busy day. Have a glass of wine with dinner, or a hot toddy an hour or two before bed. If it helps you unwind, go for it.

Stop imagining that the holiday season is about being "perfect". 

A lot of stress you put yourself through comes from trying to match the perfect standard shown in magazines, TV, and other media. Marking professionals use perfection in images to create intrigue and demand not reality.  Don't pin your happiness on the success of your holidays. Your happiness should be bigger than just the holidays. Be thankful for the family that you do have, the opportunities you have been given, and the future you can look forward to. Put things into perspective.  Strive to perfect some duties and expectations, but don't expect perfection. Your polar bear cookies might be misshapen, and your chicken overcooked, but it is the thought that count.  This is where delegation is vital; delegation means shared responsibility for how everything turns out. Seek out help where necessary. This means letting go of some of your control, which is a great thing.

For Jenn and I our focus at Christmas is the birth of Jesus.  With this focus we are at peace and enjoy our time together with family and friends.  We hope you can too.

Next post: Do you have Hope or Faith for an MS cure?

Thanks for reading.

-Brent

Reject Defeat

Be thankful.

With Thanksgiving coming up it's a good time to reflect and be thankful.  I would suggest that being thankful should be a daily thing.  I realize some people are going to ask why on earth would I say "be thankful" when my MS is giving me hell?  Am I just an insensitive jerk who only sees things through rose colored glasses? Not for a second.  What I am saying that it is a positive and productive thing to do regardless of your situation.

Everybody is in a different place with their MS and life.  Maybe you feel like you are circling the drain or maybe your health has improved or you have no changes at all.  No matter where you are at with health and life it is helpful to be thankful.  Being thankful is the recognition that even if your situation is far less than what you would like it to be it could be worse.  For instance I read an article on the Philippines storm aftermath.  What stuck with me was the reporter approached a man walking by only wearing one shoe.  The reporter asks "why are you wearing only one shoe?" the man replies "I lost my wife, children and home and the shoe I am wearing was my sons and it was the only thing left".   I read this and paused to think about that.  His entire family and home was destroyed in the storm.  For me this story makes being thankful for every relationship and everything little thing we have very easy.

At her lowest health point Jenn was in a wheelchair and spent 5 years in it.  She would see a disabled child or someone battling cancer and say "I am in a wheelchair but it can always be worse".  I think it's important to be thankful for what you do have.  It is easy to get sucked into the "what I don't have" attitude.  Regardless if you have MS or not I think everyone has experience this to a certain degree.  We are bombarded with advertising telling us if we don't have this or that then we are missing out.  Of course the advertisers are going to say that to create a desire to purchase their product or service.  It wouldn't be good advertising to say "if you use (insert product or service) your life probably won't change but it's pretty cool!".  That wouldn't sell anything.  The truth is that we all would like something more.  The more could be anything.  More time with family, more nights of solid sleep, more money, more electronic goodies or more "good" days health wise.

We live in a hyper fast paced world.  Do it, do it now and do it for less money.  It creates a lot of stress and can distract you from pausing to just take a look around and see what you are thankful for.  Here is a challenge for you.  Take 5 minutes with no computer, cell phone, television or anything that can distract you.  If you have a chaotic household with lots of noise maybe go into a closet or someplace that you can find some peace and quiet.  During this 5 minutes think about everything you have to be thankful for.  It is pretty incredible when you do this.  You start out with the basics of having a place to live, food and clothing.  I think when you are done you will have a clearer understanding of everything you have to be thankful for.

With all of this said I hope you have a great Thanksgiving holiday and enjoy some great food!

Next post:  Don't poke the bear.

Thanks for reading,

-Brent

Reject Defeat

Who supports you in your MS battle?

Everyone needs someone in their life that supports and encourages them.  For the MS fighter it is a must.  In most cases MS is more than someone can handle on their own.  Having a support system is critical and not just for the physical needs (if there are) but the emotional needs.  If you are a care partner you need to be the "go to" person for your MS Fighter.  They need to know they can count on you every time.  Do you have that rock-solid dependable person in your corner?

The fight with MS is much more than the physical symptoms.  There are emotional and physiological components that are unseen but I would consider the far greater challenge for most MS fighters.  The challenge for the care partner or support people is how to recognize the unseen issues.  Let's use depression as an example.  It is unseen and if not treated can become a beast.  How do you recognize if an MS fighter is depressed and especially if they do not say anything about it?  For me it is recognizing changes in behavior.  More eating, less eating, more time spent sleeping and emotions are all at the surface.  For Jenn these are small changes not wild mood swings and you have to really know the MS fighter to pick up on these changes.  As a support person or support people you have to be dialed in on your MS fighter.  Recognizing the small changes is critical.  By recognizing the small changes you can get a quicker handle of what is going on but more importantly it shows your MS fighter that you do pay attention and it really matters.

What does it mean to an MS fighter to have that person or people that will be there regardless of the situation?  The clear answer it means everything to the MS fighter.  I put myself in her shoes mentally and think about how I would feel or what I would do if I was given the challenges with MS.  The thought of not having a support person or people is frighting.  Most MS fighters (especially the ones who are unable to work) deal with issue of isolation regardless if they have a support person or people.  When I think about dealing with isolation and not having a support person or people that would make me feel like I was on a very small island by myself in the middle of the ocean.

If you are the care partner or support team always be prepared and be flexible.  These two attributes are very important.  Be prepared because you never know what is coming.  Even if your MS fighter is relatively symptom free you still need to be prepared.  Enjoy the time of good health but know that it can change and it can happen quickly without warning.  By being prepared and mentally ready if or when there is a downturn in your MS fighters health you can step up and do what is needed.  If you are not prepared and a downturn hits you both are dealing with the changes and everybody is struggling.  I say be flexible because things change.  For example let's say you made plans to meet friends for their kids birthday party at the park.  You get a card and gift and you're ready to go.  The weather is supposed to be a sunny 75 degrees and but the forecast was wrong and it is 10 degrees hotter and humidity spiked too.  Not good for most MS fighters.  You have decision to make.  One choice is to call your friends and let them know you cannot make it.  Or you go the party knowing it there will be a limited time spent there.  More than likely your MS fighter won't want to cancel or alter plans because they don't want their MS to dictate what they do when they do it.  It is a great attitude but sometimes the tough decisions are put onto the care partner or support people that is best for the MS fighter.  Be prepared to always make the best choice for your MS fighter and be flexible.

This subject is much bigger and deeper than a blog post.  I wanted to least get some information out there that may be useful.  If you are an MS fighter please know you are not alone.  If you have local resources like a National Multiple Sclerosis Society chapter close by then use it.  There are a lot of people out there cheering for you to beat the MonSter!  You can email me at info@msfightclub.com and myself or Jenn will get back to you depending on the need.  It is far too important to have support and understanding and the thought of even one MS fighter that does not have that is unacceptable to me.

As you can see below I finally was able to ad a comment box.  For those who don't know this is my first blog I have done so I have a learning curve.  Please feel free to comment, share or whatever!

If you have not visited my wife's blog please do so at www.battlingthemonster.com.  She provides her experience and information as a MS fighter.

Next post:  Be thankful.

Thank you for reading.

-Brent

Reject Defeat