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Monthly Archives: August 2014

Today…

Today is a day when I am reminded just how much my husband has lost.  Today I had to help him figure out how a hard drive went into a PC.  Today I had to try and diagnose why his laptop will no longer connect to the internet and when I couldn’t figure it out I had to back up his files and re-install the operating system on his laptop.

Why does this make me sad you might wonder?  Well because in 2007 before the exacerbation that started this whole chain of events my husband was a Computer Network Engineer.  He was a master PC Tech.  He could build a computer from scratch and was a pro at diagnosing networking problems.  Before 2007 I would go to him when I couldn’t figure these things out and people paid him a hefty salary to keep the network for an entire hospital running 24/7.  He was good at it, VERY GOOD.

Today he could not remember how the hard drive fit in the case so he could screw it back together.  Thank GOD he remembered how to plug it all in because I really am no good at hardware at all.  Today he could not diagnose a problem with ipconfig (and neither can I which is why I chose to perform a fresh install of the OS and start over).

In 2007 he was one of an elite group of MCSE Certified Networking Professionals.  Today he can’t even set up his own email.

Life is not fair.

 
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Posted by on August 30, 2014 in Cognitive Loss, Daily Living, History

 

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What dementia means to me…

Many moons ago when I was much more naive and innocent I thought the word dementia was reserved for very, very old people, with Alzheimers. I never thought it would affect my life in any way.  I thought dementia had to do with memory loss and aging.  Again I had no clue.

“Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior.”

Memory – yes my husbands short term memory is shot, he can tell you in great detail things that happened 20 years ago but if you ask him what he ate for lunch today he may not be able to remember.

Thinking – wow is this ever an issue, his thinking is really messed up.  A man who used to be so logical it made my creative mind hurt has no logic left in him at all.  For example he thinks it is perfectly logical to drive 100 miles round trip to save $5 on something that we could buy locally.  It’s cheaper in the city so it makes perfect sense to drive 100 miles with gas at $3.59 a gallon to save $5 to him.   I have more sinister examples but perhaps another day for those.

Language – he can’t think of words, his vocabulary is shrinking, the words he does use are more crude at times, he struggles to spit out his thoughts.

Judgement – let’s just say he has none – tell a dirty joke in front of your sister’s 7 year old daughter?  Sure why not?  Tell same dirty joke to mother-in-law’s church lady friends?  Yep again why not?  Carry on illicit conversations with ex girlfriends on facebook where in you tell blatant lies about yourself and your wife?  Again his judgement tells him that this is a-okay.

Behavior – to me this all goes together with judgement.  If you have no judgement and can’t think clearly or logically than your behavior is bound to be deplorable.  And his is at times.

So how do I cope – well some days not very well.  My husband is 47, I am 44!  Dammit I’m not supposed to be dealing with this for another 40 years at least.  But here we are.  My family treats him as they would anyone with a mental disability or mental illness – to say they don’t call him out for most of his behaviors or words, but also do take anything he says or does seriously.  I have a harder time with it, especially with people who may not know about his disability.  The physical disability is obvious but the mental part is not so obvious and many people may think he is just a jerk when he starts in, or sometimes he is terribly charming and they find him endearing but often he does or says something that ends this.

I used to cut in and try and stop him but that just angers him and then he yells at me calling me horrible names at times and in front of friends, family, strangers, anyone really it is just mortifying.  So mostly I let him go and if these are people I will have to interact with again I be sure to privately fill them in.

Dementia…. it’s not just for great grandparents anymore.

 
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Posted by on August 18, 2014 in Daily Living

 

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One of the posts that started it all…

This was the post that inspired the name of this blog, six years ago – so much has changed since then but here is a bit of history.

WEDNESDAY, AUGUST 20, 2008
Married to the MonSter…
Lisa of Brass & Ivory asked me to talk about being the spouse of someone with MS and what it means for my life.

When I met my husband in December of 1997 he was already diagnosed with MS – had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how “in shape” he seemed.

I knew about MS – a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend’s mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R(relapsing remitting) MS – he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don’t want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he’d beg off due to heat when it really wasn’t hot because he just doesn’t want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I’m wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation – he had the steroids to halt it but this time they didn’t work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn’t admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it’s gone for good.

My handsome husband with the runner’s build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard – use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn’t feel like he’s getting better. I do think his memory loss is better. For awhile he couldn’t remember from day to day things that happened or people said. And he wouldn’t admit it was him instead accusing the other person of not having told him. This rarely happens these days – if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel – scared, helpless, alone – and I don’t have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn’t seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in “wait until he dies” basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.

 
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Posted by on August 9, 2014 in History

 

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In the beginning…

I was clueless.

My husband was diagnosed with MS 6 months before we met.  He told me about it before we even went on our first date.  I thought I knew what I was in for.  I had several friends who had parents with MS and thought I knew what the disease might entail.  MS was a physical disease, it affected muscle control and made someone tire more easily.  I could handle that.  No problem.  By the time I realized just how much MORE MS could be I was emotionally invested and not getting out without major pain. I still had no idea of the cognitive impairment possible or the severity until 7 years into my marriage when my world just fell apart at the seams.

Since 2007 I have delved into a world of confusion, lies, deceit, dementia, impulsivity, disinhibition, lability, depression, anxiety, occasional violent behaviors.  Let me tell you had someone given me a preview of coming attractions when my future husband mentioned he had MS I may have skipped that first date and have had a whole different life.

But there is a reason we don’t know our future, most of us would run screaming for the door.  And given my upbringing, and my personal belief system I will not run screaming now.  I’m in this for the duration, “til death do us part” if you will.

What I hope to do with this blog is be honest, what life can be like when living with someone with MS who is on the entire other end of the spectrum from those I knew 17 years ago when I decided it was okay to date someone with MS.  I don’t want to scare people away from potentially wonderful relationships, but I do wish I’d known all the possibilities back then, perhaps being 27 and optimistic I may have taken the same chance and knowing myself I probably would have.

In the beginning I was naive.

 
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Posted by on August 8, 2014 in History

 

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Introducing…

I have had a blog for about 7 years, in the beginning I posted a lot, it was random and silly and mixed in with many posts about having a husband with MS.  It was an outlet for me, sometimes I whined, other times I really spoke from the heart.

I intend for this blog to be much more focused.  My topics will be MS (multiple sclerosis) and the many ways it can affect a life such as physical disability, cognitive dysfunction, dementia, lots of fun topics all told from my personal perspective.  As well I may touch on veterans issues as my husband is service connected and covered by the Veterans Administration. The ongoing struggle for benefits from the VA will be a fun topic to tackle.  I will also bring forward some of my past posts that are relevant.

So if you are reading this, thank you.  I hope to help other spouses of MS patients as well as spouses of disabled veterans who may be seeking benefits, and hopefully anyone who has ever had to take care of or advocate for someone who they loved who could not do it themselves will find something here.

Hang on it’s bound to be a wild ride.

 
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Posted by on August 7, 2014 in Purpose

 

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