RSS

Tag Archives: tysabri

Freedom and Frustration…

Our trip to the SCI Unit was interesting, eye opening, helpful and sad.  It seems that there is a lesion causing all of this, and it did not respond to IV steroids.  It is likely caused by going off Tysabri and taking a drug holiday.  It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.

He is now fighting for his freedom at every turn.  What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week.  It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us.  It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door.  It means ignoring me when I am just trying to keep him safe.  It means laughing in my face and not responding when I try to reason with him.

He is fighting for freedom and I am so frustrated I could SCREAM.  Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot.  It will be a roughing it kind of weekend in a cabin with heat but no running water.  But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.

I wish he could have his freedom back and I could let him be.  But for his safety I can’t.

Advertisements
 
1 Comment

Posted by on November 8, 2014 in Daily Living

 

Tags: , , , , ,

Drug Holiday…

No it has nothing to do with a vacation in Central America or any other type of vacation that involves recreational drug use.  For an MS patient a drug holiday is a time when they are taken off all disease modifying drugs.  For my husband his current drug holiday started in April when he stopped taking Tysabri.  The doctor had a wait and see attitude about it, thinking that it is quite likely that Pete is secondary progressive at this time and the drugs may not really be helping him anymore.

I have been keeping a close eye on him since that time for changes in physical strength and cognition.  Physically he has good and bad days but had not been losing significantly until this past weekend.  The weather has been very hot and humid and he was slowing down noticeably.  I attributed this to the weather, heat does sap his energy and strength and to add to this we drove 3 hours stayed in a hotel and spent all day Saturday at an amusement park riding roller coasters.  He should be tired.

But he has been having another symptom, he seems out of it, slow to speak and respond to questions. Sometimes he doesn’t respond at all, as if in the effort to formulate a response he grew too tired to bother to spit it out.  His quick wit was gone and also his irritability was gone.  I know that might seem like a blessing BUT it is not normal for him to be this mellow.

I emailed his doctor on Sunday afternoon filling him in on the behavior changes and asking what he wanted to do.  He wants us to come in tomorrow to see him.  I am hoping he has something in mind that can help stop whatever is happening, he had mentioned IV steroids as a possibility.  Pete hates those BUT they do help sometimes.

Wish us luck.  I can’t believe I am saying this BUT I am hoping this quiet mellow Pete is not the new normal.

 
Leave a comment

Posted by on September 8, 2014 in Cognitive Loss, Daily Living

 

Tags: , , , , , ,

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.

 
Leave a comment

Posted by on August 9, 2014 in History

 

Tags: , ,