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.


verybadcat said...

I love you.


Tricia, thank you SO MUCH!!

It's sometimes easy to forget that our loved ones suffer along with us and perhaps are cheated even more than we know. The MonSter is certainly a parasite, isn't it?

I'd like to share this in the next Carnival if that's okay with you.

pessimisticredhead said...

You're a good wife and friend to your husband and I really admire you. Hang in there.

Lauren said...

Oh my goodness Tricia, what a profoundly moving post... I believe that you have expressed much of what the spouse of a MS patient deals with, thinks about, and fears. God bless you for not only sharing this information with others, but in dealing with the MonSter that is affecting your husband, and is also affecting yours by proxy.

I too am on Tysabri therapy, having currently completed 24 Tysabri infusions. While I have not been able to experience some of the improvements that others have while on Tysabri therapy, I understand and accept the fact that most of my damage from prior relapses over the last 32 years is probably permanent. This is no ones fault, it's just the nature of the disease.

What I do focus on now is that I have not had one single relapses & no new lesions in over two years since being on Tysabri therapy, and my neurologist and I both believe that without Tysabri, I would be bedridden by now. Therefore, because my MS is now stable, my Quality of Life is vastly improved. I no longer dread waking up each day wondering what has MS taken from me now; Rather, I wake up with a renewed sense of hope, real hope, that I may once again regain some of what MS previously took from me...did I want more? Yes, in all honesty, yes I did...but I don't focus on the disappointments, I focus on the possibilities & hope that Tysabri has brought back to my life.

You stated, "I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment"... this is not necessarily true Tricia, as I am Secondary Progressive with relapses. Most people do not realize that SPMS has two different categories: 1)with relapses (the semi-inflammatory stage) and 2) without relapses (the demyelinating stage).

Tysabri has kept my MS in the SPMS with relapses stage, and for that, I am ever-soooooo grateful.

I send all my very best to you Tricia and to your husband, including many, many, many support hugs for you both...Lauren :)

Jennifer said...

Thank you for sharing this with us!

Bex said...

Tricia - What a beautifully written piece. My little brother has MS. It sucks. I hate it. He had his first obvious symptom on September 11, 2001 as he stood in his 60th floor office of a bank in Manhattan and watched the twin towers collapse. One entire side of his face went completely numb.

He thought it was stress as his then girlfriend (now wife) worked two doors down from what is now known as ground zero. The events of that day would and did stress everyone there. But then the symptoms didn't go away. He went to the emergency room, then a regular doctor, then a neurologist where he got The News.

I really think (and dearly hope) that there will be a cure in our lifetime. There just has to be. This disease BITES. It takes away SO much.

Well, I didn't mean to rant. But I admire your husband for living with it. And I admire you for living with him. (I mean this with total respect to you both - there are many days when I KNOW that I get the admiration of others for living with my husband.)

One of these days I'm going to get off my ass and start fundraising for the MS Society. I really think that they need some serious funding and then they will find the cure.

Oy. I started ranting again, didn't I? OK. I'm going now. Really. Thanks for the wonderful piece. Loved it. Ok. Here I go....

Shauna said...

I came here from the MS Carnival and want to say thank you for contributing. Everything you have said is what I feared most when I was diagnosed. I really was, and still am, worried about how my loved ones cope with my MS.


Denver Refashionista said...

You said it so well. Sometimes we find ourselves frustrated with our caregiver for focusing on how MS affects them and not how it feels to go through it. It is good to be reminded that caregivers suffer too so we can remember to walk a mile in their shoes too.

johnroy said...

Wow,I'm totally with you.I'm 44 married 3 yrs my wife all ready had m.s when we met.She to is very stubborn!Pushes herself to hard.But I'm amazed at her determination and will to live life to it's fullest.I just think I can never complain because look what she has to deal with.It's encouraging to hear I'm not alone .