In the beginning...Parts1&2 from a care partner's perspective

As a care partner I am given a different set of challenges when it comes to MS.  I know each MS fighter has a different set of challenges and a different way of handling them.  Below are my thoughts, emotions and actions when Jenn started having issues with her MS.  After my last post I received a great suggestion from Bonnie.  I had been using the phrase caregiver and she said they use care partner.  I was never to wild about caregiver and care partner really hits the mark and I will be using that going forward.

When Jenn and I got married I knew almost nothing about MS.  I knew she had it and that it could pop up at any time and cause problems.  She was not symptomatic when we got married.  I was like "you have MS?  You don't look sick"....one of the MS fighters most hated phrases.  At that time Jenn knew a fair amount about MS but since she wasn't having any problems with it she didn't fully educate herself on it.  I had no idea if or when she would have any complications from her MS.  I figured we should just take advantage of this time in case things change.

When she first started having issues that is when I started really questioning things.  I thought about all the "what if's" and pretty much scared myself to death.  Then I realized my worrying about the "what if's" was a waste of my time and that I had to let that go and be here for Jenn now.  Though she didn't say much about it I could see that she was scared.  At this point I felt it was just best to "be there" for her.  If she wants to talk about great and if not that's fine too.  I didn't bring it up much.  When I did it was to get a question or two answered that I had.  I always carefully chose my time to talk and how I approached it.  It was always premeditated.

As Jenn's care partner one of my biggest challenges was to watch the person you love struggle and there is nothing I could do.  I can't fix it or cure it.  As a guy my instinct is to fix problems it's just hardwired into me.  Here was a problem I couldn't fix.  I had to accept it and find the best way possible to be a great care partner.  Since there is no rule book or guidelines on being a care partner I had to figure it out on my own.  Challenge accepted.  Since Jenn is the one doing the fighting I made myself her corner man.  In boxing the corner man towels them off between rounds and cheers them on in their fight.  I wanted to be the best corner man ever.

I never let being a care partner get me down or depressed.  I have always had people comment saying "I don't know how you do it?".  For me it's not that hard.  You have to commit to being the MS fighters biggest advocate, support and leader.  I am nothing special.  There are thousands of care partners out there dealing with more than I ever have and they do it like a champion.  My goal has always been to treat her the way I would want to be treated if I was the one fighting MS.

Like most newly married couples the discussion of having children came up.  This was a particularly difficult area.  Upon doing research we realized that having a child is horrible for MS.  Most cases we read the women said they "never felt better" while being pregnant.  Maybe it was hormones?  After having the child is when the issues came up.  We knew someone who had (she has since passed) a child while fighting MS.  Before having her baby she was doing great with her MS and worked full time and was virtually symptom free.  Five weeks after she had her baby she was in a wheelchair and never got out of it.  I thought to myself that would be awful to take care of baby and your spouse at the same time.

After a lot of discussion and some tears shed we made the choice not to have children.  It was very hard on Jenn and over the years she has felt guilty that her health was the reason we didn't start of family.  We did take it upon ourselves to spoil our friends and families kids and at Christmas we started a tradition of not buying gifts for each other but finding a "Giving Tree" and pulling a bunch of tags off of it for children who might not have received anything for Christmas.  We still keep that tradition and we have so much fun shopping for the kids.

From my standpoint what makes MS so difficult it that it has so many ways to effect you and there is no telling how long one thing will last or how severe it will get.  Of course there is the physical aspect of MS and that is what people see.  To me that is not the most difficult thing to deal with.  I would say the most difficult things to deal with is everything you can't see.  It's things like guilt and depression that really pack a knockout punch.  If you suffer from fatigue and have walking issues you can for the most part plan around them.  Not with guilt and depression they just linger around and constantly poke at you.  To stay tough mentally is huge.  Even when your health is getting worse and worse staying mentally strong is a challenge.

Jenn has never played the role of a victim.  Even in her worst times she would point out to me "at least I don't have something terminal and there are always people in way worse situations than me".  I have always loved this about her attitude.  She really is a "roll up your selves" and get to work person.  I have met others who are not as mentally tough and they play the role of victim all the time and are willing to tell anyone who will listen.  I am not judging but just pointing this out.  I have no idea what would happen to me mentally and emotionally if I was the fighting MS.

Another important thing I discovered for myself was to always be flexible.  Even with the best of planning stuff happens and I am always prepared to change plans to accommodate the situation.  It may be that we scheduled to go somewhere or meet up with friends and dizziness hits or massive fatigue.  At that point we just change plans.  I never feel cheated that we didn't do whatever we had planned.  Jenn never planned for the stuff to happen and we just make the best of the situations.

As I pointed out in my first blog posting that being a care partner is not for the faint of heart.  It is not always easy and can be very tiring but I will never stop striving to do my best as Jenn's care partner.  I found that you have to be great at juggling schedules, tasks and staying flexible.  Even though I do not have MS I feel very much a part of the MS community I have tremendous respect for anyone fighting MS and care partners that take their role seriously provide their fighter with love and support.   The most helpful thing I have done for myself as a care partner is to realize nobody can care for Jenn better than God and I turn to Him for guidance and wisdom.

The next post will be In the beginning part 3: Good bye to employment.

Thanks for reading.

-Brent

Reject Defeat

In the beginning......part 2

Part 2: The dreaded handicap parking sign

With Jenn continuing to struggle with balance, stamina, a numb leg, increasing tremors in her right hand and memory issues work was getting more and more challenging.  Sneaking into work early so nobody sees her using her cane and staying late until so nobody sees her cane was growing old for her.  The employee parking lot was a bit of walk for someone without MS and for Jenn this was turning into a three part walk.  Part one: from the car to the lobby...rest.  Part two:  to the elevator, up to her floor.....rest.  Part three:  from the elevator bank to her desk.....rest.  Even using her cane it was becoming increasingly difficult.  Her frustration with this was growing too.  When she would get home from work she would tell me about her struggles getting to and from her car.

Then I asked if her work has handicap parking.  She said they do.  I then asked "what do you think about getting a handicap parking permit and parking there?".  Her reply was quick and definitive.  She said " no way!  Some of my coworkers know what car I drive and they would see it there and start asking questions".  She chose to resist this too.  She knew it was the logical thing to do but emotionally she was not ready to make this step.  I took the liberty of looking up how to get one, where to get it one and how long they are good for.  Another piece of advice for caregivers.  When your MS fighter is resistant to change even when it makes sense YOU do the homework.  Arm yourself with information.  I chose not to tell Jenn I was doing it.  This will serve you well when the time comes to make that step.  It also shows you are there for your fighter and you care about their well being.

Another point of resistance was when we went someplace I would offer to drop her off at the door and park the car.  No way, not for Jenn.  She wanted to walk with me even if meant she would be exhausted by the time she got to the door.  Even though I knew it would be best for her I agreed to her request.  As time went on and we zipped by the empty handicap parking spots to park elsewhere she was warming up to getting the parking permit.  Then it happened!  One rainy, cold Northwest day we parked as close as we could to the store without being in a handicap spot she said "I'm ready to get a handicap permit".  

In Washington State to get a handicap parking permit you have to get it from your doctor and Jenn had a neurology appointment coming up shortly. So, at the appointment I asked the doctor for it.  Advice:  I have been to every single neurology appointment Jenn had.  I still go.  I do this for a few reasons: one, I am there to support her.  Two, her memory isn't the best and I can take mental notes of everything that happens in the appointment.  Three, it's comforting to her to have someone there to support her.

Now with the signed paper to get the permit we are off to the DMV.  I believe the DMV is some level of hell on earth.  Understaffed, cranky employees, long lines and a minimum of 3 kids screaming and crying at the same time.  A tidy hour and half later we leave with 2 handicap parking permits.  Advice:  If you have to obtain a handicap parking permit get 2 (or more) of them.  Keep one in your vehicle at all times and the other you can take with you when you travel with other people.

I was interested to see if Jenn would her parking permit right away at work.  I was a little surprised that she used it right away.  She was still going in early and staying late.  That was coming to end.  Jenn's game of "hide and seek" with her cane was slipping away from her.  As we went into the fall her coworkers where coming in earlier and staying later.  She had seen by a few coworkers with her cane.  They had no idea what was going on and assumed she had hurt her leg.  When they asked if she hurt her leg she would reply "yup" and quickly move along.  She didn't want to get into the real reason for the use of her cane.

She was telling me about the coworkers seeing her use her cane.  I asked "isn't about time to let your work know about your MS?" and she said "no, it's none of their business what my health is".  My response was "true, but if you need to have any accommodations made for you they are going to want to know why".  A few more days passed and a few more coworkers spotted her using her cane.  Jenn came home one night and said she was ready to tell her work.

The next day Jenn scheduled a private meeting with her manager.  In that meeting she informed her about her MS and said that at the next staff meeting she wanted to inform everyone.  Smart move on her part.  Get it out to everyone at once instead of one by one. The next staff meeting was only a couple days away.  At the meeting she makes the big reveal and explains that is why she is currently using a cane.  The reaction from her coworkers was supportive and fortunately they didn't ask her a lot of questions.  If she didn't want to talk about her MS with me she REALLY didn't want to talk about it with her coworkers.

A few weeks later we had a new visitor to the MS party.  Introducing Mr. Vertigo.  Yes, that nasty little bastard that makes the room spin like you have a world-class hangover without the alcohol.  Jenn has had little bouts with dizziness but that would be for a few minutes or a couple of hours.  Mr. Vertigo set up shop for 2 weeks with Jenn.  Because she was dizzy all the time her stomach was upset all the time.  The only relief from it was when she was sleeping.  Otherwise it was laying in bed or on the couch.  When I looked at her eyes I could see them "twitching" trying to focus and track things. This 2 week visit from Mr. Vertigo was the longest she has ever had.  When she gets it now it's normally a few hours or at the most 2 days.

With everything going on with Jenn's MS it was clear to me what was next.  She was going to have to leave work.  To this point I have not even suggested it.  I took it upon myself to look in to Social Security Disability.  I called the S.S. office with a few questions.  The representative I was talking to was very nice and helpful.  However, she blew me away with one of the last things she said.  She said "don't be surprised if you get turned down.  Everybody gets turned down the first time they apply".  Wow, I get having to screen out the people looking to abuse the system but to turn down everyone is just an awful way to do it.  By doing that you penalize the legitimate cases.  This put a determination in me to pursue a way to get this done on the first try.  I printed out the application and filled out the entire thing other than the dates so when and if needed it was ready to go.  Jenn knew nothing of my covert Social Security work.

This ends part two.  Part three will a caregivers perspective of part one and two.  Since this my first go of doing a blog I am not well versed on building readership.  If you have suggestions on how to make it a better reader experience feel free to contact me at info@msfightclub.com.  Use the same email address if you have any questions for me or comments. 

Thanks for reading,

-Brent


Reject Defeat
     

In the beginning....part 1

After years of talking to many people about MS and sharing everything I have learned from it I thought this would be a good venue to share it with everyone.  I am a graphic designer and writing is not my really my best strength.  So, knowing that please forgive me for any grammar errors.  :)

Having a wife with Multiple Sclerosis is not for the faint of heart.  The challenges MS presents are enormous. The physical, emotional and psychological issues come in all kinds of forms.  My 17 years with this awesome women have taught me a lot.  First of all Jennifer is a FIGHTER.  Her will to fight everything MS throws at her, keeping her chin up and staying positive is beyond inspirational.  She does have her days of feeling down and somewhat defeated, but she always snaps out of it pretty quickly and marches forward.  When she is feeling down she feels guilty and says she's having a self "pitty party".  My response has been consistent.  I tell her that you are in a war with your body everyday and the war will wear you down at times and it's okay to feel down.  It is part of the having MS and being human.

Here is a brief recap of our experience with MS.  I plan to expand on all areas of it in future posts.  Not long after we met and started dating Jenn told me that she has Multiple Sclerosis.  This was huge for her.  She thought I would run away from her like my hair was on fire.  Truth be told I knew nothing about MS.  She was 22 at the time and at that time was deemed "young" by her neurologist to have MS.  At the time she was not symptomatic and I didn't really think too much of it.  My thought was she may never have anything come of her MS or if she does I'll be right there with her.  Being newly diagnosed she was scared of what the future looking like for her health.  I said "you can't change the future, be happy right now and if anything come up we'll deal with it then".  For my marriage proposal to Jenn I wrote it.  I am not the best (understatement) at expressing my feelings verbally.  Guys, you get that....well some do.  Anyhow, in my proposal I wrote "I am not marrying a disease, I am marring a beautiful woman".  I stand behind that statement forever.

Two years into our marriage she began to have symptoms.  It started out very slowly but consistently grew over time.  Her fingers became "tingly" and her foot started loosing feeling.  Her stamina was slowing down.  The stuff she used to do with no problem was starting to wipe her out.  Jennifer began to worry about these symptoms.  At first, I started to worry.  Then I came to the realization that my worrying is not helping me or her.  God is in control of this.  Once I came to this conclusion I let it go from worry and vowed to deal with stuff as it happened and to just love and support her.  This proved to be a good choice.  I have met many people who worry all the time about their spouse, family or friend with MS.  It effects them negatively and most likely the person with MS.  To me the best approach is to look that person in the eye and tell them with great confidence "whatever happens to your health because of MS I will always be here to support you".  For the MS fighter those are encouraging words.

As her symptoms continued her foot was becoming completely numb and the "tingles" have expanded from her hand to her arm.  Her right hand (same one with the "tingles") had begun to have small tremors.  At the time we both worked in banking.  She worked in internet lending departing processing loan requests and I was a branch manager.  Her job required great attention to detail and to be highly organized.  This was a perfect fit for her.  Jennifer was both detailed oriented and very organized.  As her symptoms continued her cognitive skills started being affected.  Her memory (which had been rock solid) was having issues.  Her worry was now turning into frustration.  She knew that this MonSter was starting to really fight her.  It was starting make issues for her at work.  Not remembering where a particular file was or if she had already completed a task or not.  Through all of this she stayed determined and she thought to herself "this is just temporary and it will pass".

Fast forward 4 months.  Her numb foot was turning into a numb leg and this made her start to have a small limp.  Not too noticeable to most but I saw it right away.  When I asked about it she quickly dismissed it said she really didn't want to talk about it.  I didn't push it.  At this time she wanted nothing to do with talking about her MS.  She felt like by doing so she was giving it power and being a burden to me.  It was not true, but I let her continue to not talk about and only occasionally bring things up about her MS.  I kept a mental journal of her health and what benchmarks where made.  Her eyesight (which was 20/20) started to weaken.  Then, her left eye started to lose sight.  At this point she became worried about driving herself to work.  So, I started taking her to work early in the morning and would use my lunch hour to race (literally broke many speeding laws) to pick her up and take her home.  She ended up loosing complete site in her left eye.  This scared her to death.  Mainly at the possibility it could be both eyes and that she would never see again.  We did research on it and found that it has a name "optic neuritis".  The definition we found said:  Optic neuritis is inflammation of the optic nerve.  It may cause sudden, reduced vision in the affected eye.  After reading up on it we where relieved to know that this was very likely just a temporary issue.  Her site returned about 6 weeks later and she returned to driving herself to work.

Jennifer's limp was getting worse and her balance was going just as quick.  I brought up the idea of using a cane.  She looked at me like I was a crazy person.  She said "no way, canes are for old people".  I quickly jumped in on that statement and said "no, canes are for those who need them regardless of age".  I made a special point when we went to the store or wherever to point out "younger" people using a cane.  The health insurance we had covered the cost of the cane.  I called to make sure it did just to avert the "we can't afford one" objection if it came up.  A few weeks later after much resistance she agreed to get a cane.  We had a medical supply store not too far from our house we went to get her measured and buy one.  By the way if you have to get a cane I would highly recommend going to a place that specializes in medical equipment to have them measure you for the correct height of your cane.  It will make a big difference in the way you use it.  We get in the store, get the measurements and the store employee was showing her how to properly walk with a cane.  Then......the dam broke and the tears came flowing out of her.  She quickly dismissed herself and went to the car.  I told the employee to please hold onto the cane and I would be back.  I went to the car to talk to her.  She said "I can't do it.  I can't get the cane because it means I have given up".  I said "no, you are simply using a resource that will help you.  We'll just pray it isn't for a long time".  After a few minutes more of talking she agreed to let me go back in and purchase the cane.  

Now Jenn and I and the cane are back at home.  She is still crying and very upset about the cane.  To Jenn this was a turning point in her fight with MS.  I asked her to try the cane out.  She shut all the curtains in the house so nobody could see her using a cane and proceeded to try it out.  She agreed that it helps.  However, she said "I'm only using this at home and don't tell anyone I have a cane".  I agreed not to say anything.  By using it in the house she quickly adapted to it and became very smooth and efficient walking with it.  A few weeks later we went to Target to do a small shopping run.  I asked her to bring her cane.  She did.  Then when we got to the store she insisted on leaving it in the car and if she by chance needed it she would have me go get it for her.  Fine, I'll do that.  I realized the cane was not a physical issue because it clearly helped her it was an emotional one and I had to be aware and let her do this on her time.  This became my "way" with Jenn in regards to her MS.  I let her for the most part dictate how she wanted to treat it.  The only time I stepped in and said anything was when I knew it was dangerous or she would be exhausted for a looooong time after she finished.  She did it.  Jenn finished the short trip to Target without using her cane!  Now to go home so she can recover for 3 hours.  

A couple of months later Jenn started taking her cane everywhere (but work).  When we went to the store she discovered her new best friend......the shopping cart.  The shopping cart provided a way to have something to lean on and assist her walking.  When we arrived at a store she typically dumped her cane into the shopping cart and off we went.  She still did not like the cane and one day said people would stare at her when she used it.  I said "of course people stare, your a young attractive women using a cane and that is different".  I found a tee shirt that I fell in love with for her.  I thought I would take her to the store and surprise her with it.  We are at the store and I found the shirt and I hold it up for her to look at and I said "this is for the people who stare at you when using your cane!".  She loved it!  The shirt had a stick figure on it and said "Keep staring I might do a trick".  The times she wore the shirt out in public people would read it and quickly look away.  It really worked!  I am going to make this shirt but it will be for the MS fighters.

Another couple of months have passed Jenn finally decides that she can't make it to her desk from her car at work without her cane.  However, she went to work extra early to make she was the first one there so nobody saw her using the cane.  Once at work she would stuff the cane under her desk and out of site and would not get up from her desk the rest of the day and would wait until everyone left work before she would leave.  When she told me that she didn't get up from her desk all day I asked the obvious question "what about going to the bathroom?" she said "I hold it" and I thought about that for a second and responded "you realize that is horrible for your health to hold it that long!".  She agreed but still continued to do it.  

This ends part one.  Part two will come next week.  It will start with the dreaded handicap parking permit!

Thanks for reading,

-Brent
  
Reject Defeat