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

Are you trying to fool people about your MS?

When I was a child I remember hide-and-go-seek as game you could play with just about anyone.  Some kids picked ridiculously good hiding spots and others ridiculously easy ones. When I played I always wanted my hiding spot to be good but not too good.  I wanted the thrill of the possibility of being found.  I could have went into the attic and NOBODY would have found me but that wasn't fun to me.  As am adult hide-and-go-seek is not something I want to participate in.  However, most MS'er's have or current do with their MS.  Don't kid yourself you know you have.  For example you have been planning on going to event with your spouse or family but you don't feel good...at all but you tell them you feel better than you actually do.

Jenn has tried this with me.  Most of the time I would catch it and call her on it.  I get it, you don't want to look like a whiner, weak or feel like you're being a burden by saying how you really feel.  I have 3 words for you.  Get over it.  Sounds harsh but it has to be.  Yes, you have good intentions by playing the MS hide-and-go-seek game but it will come back to bite you.  The fact is you are going to miss things or have them interrupted or shortened because of your MS.  It sucks but it is something that is a part of managing your MS both physically and mentally.

When I ask Jenn how she is feeling I do it for a couple of reasons.  First, I care how she is feeling and if there is something going on that I can help with then I can do something.  Second is that I notice that she is "off" and I want know what it is so I can help (if I can).  When I noticed she was "off" and I asked her how she was feeling and she would be reply "I'm doing okay".  I would respond with "really.....because I can see that everything is not "okay".  Now can you please tell me what is going on?".  At this point she would spill the beans on what was going on.

I don't ask how she's doing to be a pest or make MS and her health the focal point of everything.  I genuinely want to know.  I also mentally mark down any patterns or new things as they happened.  It helps me as a care partner to recognize health patterns and when new or different things come up.

Something you may not have thought about when you telling people you feel better than you do.  It creates a pattern of deception that will have your care partner (and others) questioning what you are saying about your health.  This is not good for anyone and can be a very slippery slope.  It can get to a point that everything (not just health) you are saying is questioned is questioned if it is truthful.

The people around you want the best for you and even if it means altering a plan be upfront about how you are feeling.  If you feel that someone doesn't understand why then use that opportunity to give them a quick education on why.  Having to be upfront and truthful about how you are feeling is not easy.  The last thing you want is to have your MS get in the way of anything.  Unfortunately it's going to but trust me as a care partner we are prepared to make adjustments and go with the flow.

Next post: Holidays + Stress = MS nightmare!

Thanks for reading.

-Brent

Reject Defeat

Don't poke the bear.

I think most of have heard the expression "don't poke the bear".  It simply means don't disrupt something if you don't have to.  For this post the "bear" is MS.  Sometimes it's better to leave things the way they are.

A friend of mine I went to high school was diagnosed with MS at the age of 29.  I witnessed the whole process.  He was the pitcher on my men's softball team.  He was always very good at sports and had outstanding hand-eye coordination.  Then odd things started happening to him during games.  He would get a hit and running to first base and would just trip over nothing and fall.  On a few occasions when he was pitching after he released the ball he would just fall down.  This was so not like him.  He laughed it off and so did the rest of the team.  We had a little fun imitating him falling down and he would laugh right along with us.  I was talking to him in the dugout one game and he told me his right arm and leg where getting numb and that it was getting worse.  He thought it was a pinched nerve in his back or neck even though he no pain in either place.

This was before I had met Jenn and I didn't know what MS was.  But I did know that whatever was going on with him he needed to see a doctor and get it figured out.  This kind of stuff doesn't happen to a 29 year old guy who at the time was in pretty good shape.  That game was the last time he stepped onto a softball field as a player.

After a few months of tests they gave him the official word that he has MS.  Once we all heard the news we all looked at each other in disbelief and mainly because we had no idea what MS was.  His MS was aggressive.  Each time I saw him he was worse.  Slower moving, slower speaking and couldn't walk too far before he was exhausted.  He started using Avonex.  He noticed a marked improvement after he started using it.

A couple months later I went to visit him.  He tells me that he is quitting the Avonex and going to battle MS without any prescription drugs. I looked at him and said "you're out of your mind.  What you are doing is working.  Why mess with success?".  He then tells me that he is going to defeat his MS with his mind and willpower.  Really?  That would be great if you could do such things.  I said to him "if that was possible people could cure their own cancer or whatever ails them".  He said "maybe, but most people don't have my determination and willpower".  I have always been an optimistic glass is half full guy.  But, in this case all I saw was disaster.

I had known him for many years and he was always known for his fierce competitive nature and determination.  He is the guy who dives in to rocks in the "friendly" family volleyball game.  Win at all costs.  He poked the bear.  It took a about 6 weeks but his health started going down hill quickly.  This coupled with his Taco Bell diet and late night video game playing the "bear" was giving him a beating.

If I remember right it took him 6 months before he went back to using Avonex.  Shortly after he started Avonex again I saw him and asked him how the "willpower" cure was going.  He chuckled briefly and said "I don't know what I was thinking.  That didn't work at all and I am back using Avonex".  He learned the hard way that as tempting as it may be sometimes to change your MS treatment it is truly better to not poke the bear.

Next post: Are you trying to fool people about your MS?

Thanks for reading.

-Brent

Reject Defeat