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

From a wheelchair to walking.

Being in a wheelchair is no joke.  The wheelchair represents the loss of freedom to walk on your own power.  That is huge.  The mental and emotional tolls are tremendous.  For the MS fighter the loss of walking (even assisted walking using a cane or walker) is devastating.  By the time the MS fighter has made it to the point of being in a wheelchair they have already dealt with many losses of freedom and had to deal with them mentally and emotionally.  The unknowns become much greater and sometimes grimmer.  Like I said being in wheelchair is no joke and should be taken very seriously by the MS fighter and their care partner/support people.

For the care partner the wheelchair is a game changer.  There is a lot of planning.  Is this place or that place wheelchair accessible.  Sometimes requiring a quick trip ahead of time to find out.  Learning how to support your MS fighter during this change.  Having a vehicle that can accommodate a wheelchair and lugging it in and out of the vehicle.  Wondering if they are going to ever walk again or maybe this is an indicator that they their health is going to continue to get worse.  The emotional toll of seeing the person you love and care for struggle so mightily both physically and emotional is very tough.

I know all of these things very well because we have been through them.  If you think once you are in a wheelchair it is a life sentence I hope to break that thinking for you.  I have seen it.  Jenn was in a wheelchair for 5 years and has been out of it for years now.

Jenn did the "progression" of cane to walker and then to a wheelchair.  This progression was over a period of a few years.  Just like when she got her cane and walker she wanted nothing to do with the wheelchair.  She knew it would bring relief and allow her to go places and not have to worry about "gassing out" in 15 minutes.  Like the cane and walker she got used to it and came to terms that it was a good thing.  I did encourage her to give the wheelchair some personality and she did.  At Christmas she would put garland in  the spokes and a ribbon in the middle.  We looked into small battery operated lights but did not end up doing it.  She decided to share her love of cats to world by putting cat stickers on the backside of the back rest portion.

One thing didn't change.  She came to terms with the wheelchair but did not accept it.  Big difference.  By coming to terms with it she was agreeing that the wheelchair did serve a useful purpose and wasn't going to give anymore push back on using it.  She refused to accept because by accepting it she felt that she had given her MonSter the power and accepted defeat.  She was determined to do whatever it took to get out of the wheelchair and even if it meant going to using a cane or a walker.

Her quest to get out of the wheelchair had her hyper-focused to find a solution.  She knew that some how or some way there was something she could do to get her out of it.  One change we made was going to a naturopathic doctor.  She put Jenn on a really heavy vitamin routine. The vitamins did not really seem to do anything for her MS but her hair and nails grew at a freakish rate.

The real breakthrough came after Jenn had read some studies on the benefits of vitamin B-12 can have for MS fighters.  She took this information to her naturopath and asked for her thoughts and she believed it was worth a try and wrote her a prescription for B-12.  I was the one administering the subcutaneous shots twice a week.  She very quickly started seeing improvements.   It looked like the B-12 was really working.

Jenn started feeling less tingling and numbness, the thought to speech process was improving, speech became clearer, eyesight was getting better and most importantly her leg strength and balance were improving.  After about a month she had ditched the wheelchair and was using her walker.  Her stamina wasn't great but it too was improving.  After a few more weeks she went from her walker to her cane to unassisted.  Praise God.  It was unbelievable to witness this transformation.  She had not driven a vehicle in years and she was once again able to get behind the wheel again.

To this day Jenn is walking without assitance and I still give her a B-12 shot once a week.  Given the nature of MS we have no idea if she will have to use her cane, walker or wheelchair.  We still have all 3 and they sit in our garage collecting dust and for Jenn they serve as a consistent reminder to never take walking unassisted for granted.

I would love to tell all of the MS fighters to take B-12 injections and you will be better but that was be very reckless on my part.  In Jenn's case B-12 ended up being something that really works for her.  I do truly believe that for every MS fighter there is something or a combination of things that will provide great help.  Since MS is so individual it is a trial and error process.  Just know it can happen.

One thing I forgot to mention.  Wheelchairs are expensive.  Jenn's was a very basic manual wheelchair.  In our case insurance did not cover it and we simply didn't have the money to purchase one.  I did make a call to our chapter of the National MS Society and they provided us with a connection that we used and were able to get the wheelchair at a much reduced cost.  If you need to check with your local chapter.  If you are not sure how to contact your local chapter go to www.nationalmssociety.org and click on the "Find a Chapter" link at the top.

The reaction to her recovery was overwhelming to her.  For years we participated in the MS Walk and we would see a lot of the same people year after year.  They saw her go from using a cane, to a walker and then a wheelchair.  The next MS Walk she showed up with no cane, walker or wheelchair and she told me straight up "I am walking it this year.  I don't care how tired I am after I am walking".  It really hit us when we showed up to the walk and the other MS fighters saw her walking unassisted.  She had countless people coming to her crying tears of joy and hope.  They all wanted to know what she did to accomplish this.  Jenn was overwhelmed with this unexpected attention.  She is someone who does not like being in the spotlight and does not look for it.

At one point she turned to and asked "why me?  I am nobody special".  At that very point it hit me.  I looked her and said "you have a testimony to share with people.  You represent hope and people have seen it first hand and they are inspired by it".  She was not able to complete the full route of the MS Walk that year and had the shuttle bring her back.  When she got back I asked her how she was feeling and she said "I'm exhausted, but I wouldn't trade it for anything".

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

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