Category Archives: MS related
A new drug for The Curmudgeon
The Curmudgeon saw his neurologist’s nurse practitioner yesterday. And, after having a blood test run, it looks as though he’s cleared to start the Tecfidera.
He’s excited about not having to do injections anymore. He’s not excited about some of the possible side effects, but is willing to live with them if it helps.
Wish him luck, he will soon begin this new adventure into the land of weird drugs and MS.
You all have a good one!
Could a change in medication make a difference? We shall see.
After having such a bad week last week and a not so bad one this week after not taking his Avonex, The Curmudgeon made an appointment with his neurologist for Monday to discuss stopping the Avonex completely and switching to one of the new drugs, Tecfidera.
This what Web MD has to say about Tecfidera:
How does Tecfidera work?
It appears to have anti-inflammatory actions and brain-protective actions. The main problem in MS is that immune cells are getting into the brain and the spinal cord and they are attacking the nerves. One of the main ways they cause damage is by inflammation, particularly in relapsing-remitting MS. So Tecfidera does a number of different things to lower inflammation and lower the ability of the immune cells to get in and attack the central nervous system. Additionally, it may protect nerves from damage.
For Tecfidera, the common side effects are abdominal pain, diarrhea, and some bloating. And it causes flushing. You also have to watch the white blood cell count and the liver enzymes.
The Curmudgeon is hoping he has better results with it than he’s had with the Avonex of late. Keep your fingers crossed people!
You all have a good one!
Side view of the brain and spinal cord (Photo credit: Wikipedia)
Welcome to our world
The Curmudgeon’s bad days are coming closer together, rougher, and faster. Yesterday was bad enough to make me want to pack up my van, grab the dogs, and run. Other solutions passed through my brain too. Not one of them was anything I’d act on, but I can’t lie and say they weren’t thought of at least once.
If anyone tells you there is help available out there, only believe it if you have barrels of money. For those of us living a tad above the poverty level, it’s another whole world.
While trying to help him, I threw my back out again. Managed to scream at him like a harridan and hate myself for it.
He needs me kind, calm, and loving but I can’t seem to get to that place any more. I’m over tired, over stressed, and I don’t know what all. I don’t like myself very much at the moment.
No one was home in the neighborhood and he didn’t want me to call 911 for help. I managed to find my neighbor’s youngest son and he tried to give us a hand.
This is secondary progressive MS folks. It doesn’t get any better, it only gets worse.
You all have a good one. I’m going to have a glass of wine or a dirty vodka martini.
Newsflash!
After me giving The Curmudgeon both barrels on the need to get his muscles working and in better shape, I heard him using the weight machine.
He was whining the other night about how sore his legs were after a short trip through Home Depot. Yesterday he did some more whining and I went off on him.
Even though it killed me to do it, I read him the riot act because all he does is sit in his chair. If he doesn’t work his muscles they will stop working for him. He may have MS and his nerves may not be normal but by allowing his muscles to atrophy he is helping this disease beat him.
I think he finally got it! Let’s hope he keeps this up and gets his muscles back in working order.
You all have a good one.
MS so sucks
The Curmudgeon went with our friend to get a part for our leaking flush valve flapper. His friend replaced it for us today. Yay, no more running toilet to cost us $$. We should see the water bill go down a tad. Thank you R for doing the repair.
Unfortunately, The Curmudgeon went with our friend to get the replacement part. Why unfortunately you ask? Because after being out in the heat, he was shot for the rest of the day and night.
It drives The Curmudgeon crazy that he can’t even do the simple jobs around here anymore. According to the dogs, he even needs help to make his own toast.
A thank you to our local firemen.
Yesterday began with a call to my phone at 8:30 a.m., The Curmudgeon’s voice swam into my dreams and yanked me awake. “I can’t get up.” Four words that send me into a heart pounding, adrenaline pumping, wide-awake, on my feet dash for wherever he is.
Once I found him, I knew I couldn’t get him up. I called the neighbor, he didn’t answer his phone. I asked The Curmudgeon what he thought we should do, I wasn’t going to attempt to lift him since my back is just beginning to feel better.
The Curmudgeon decided to call 911. I am so glad he did. Four fireman showed up at the door, they had him up and in his chair in mere seconds. Thank you so much guys!!!
Patty says, “Diz my Daddy. I takez care ob himz.
MS sucks.
The Curmudgeon had another really bad MS day. He finally gave in and went back to his bed. Sleep did not come, he grew weaker, and more miserable as the afternoon turned into evening.
He refused to eat dinner. Gee, I could have skipped cooking and rested had I known he’d do that. He did take his medications. However, they didn’t help. The Curmudgeon is having great difficulty walking and I cannot pick him up from the floor. This makes for a very frustrating time for both of us.
I hope that today he feels better. I will know as soon as I wake up because these days he never lets me have one moment to catch my breath before he needs this and that. I do wish he’d wait until after I had my first cup of coffee. I function so much better then.
Keep your fingers crossed that he is improved by the time I wake. You all have a good one.
Run, run as fast as you can….you can’t catch me…
Don’t get me wrong, I love The Curmudgeon with all my heart, but some days I really want to run away from home. It’s been one of those days.
Seriously, ‘Nurse’ was never a career choice for me, NEVER…and we won’t go on with this part of my rant. No one wants to hear it.
I still say the MS Society sucks. After a ‘token’ amount of so-called help, they sure disappeared in a hurry.
The Curmudgeon had his falling apart shower chair replaced, and we got two grab bars–they need installing and I can’t do it. They had a ‘counselor’ talking to me…uh huh, those of you who know me know exactly how that went and how much eye rolling I did.
So yeah, big effing help, folks. Do not depend on them to help you out at all. The MS Society just wants you to donate money so they can play with it and make themselves feel good.
I am over tired. I am unhappy. I want to feel alive, which I don’t. I feel like a servant and not a wife. I want to be able to write but I can’t. Yeah, tonight I want to run.
You all have a good one. I think I’ll have a martini…
If it isn’t one thing…
Thursday morning, I woke to the sound of The Curmudgeon in distress, leapt out of bed and ran to see what was going on. He’d fallen, got his foot tangled in the bathroom rug. He couldn’t get up. My neighbor wasn’t available either.
By the time I finally got The Curmudgeon to his bed, sweat poured off me as if I’d just stepped out of a downpour, and we have the AC on. By then I was also cussing up a storm. He scares me so much when he does that, and I feel so helpless, all I can do is cuss. He lets me blow off steam, he knows I need to do it.
Once I had him settled in, I went down to take care of the dogs. When they were pottied and fed, I grabbed a cup of coffee, sat at my computer and caught up on the latest news.
I still hadn’t cooled down by the time I’d had my second coffee. I called G and told her not to worry about her dinner. I was going to take care of it.
Later, I picked up two subs, one for G and the other for me. The Curmudgeon had a hamburger steak, and his favorite tater tots since he can’t eat a sub. His idea, not mine.
I hope when I wake today, I will have an easy day. I need one for a change.
You all have a good one.
English: These are what tater tots look like. (Photo credit: Wikipedia)
Decisions, decisions…The Curmudgeon must decide.
Spent our afternoon sitting in the neurologist’s office. It looks as though they are finally going to change The Curmudgeon from Avonex to something else. The Avonex has prevented any further damage but his body’s reaction to it is getting worse as time goes on.
He will give himself his injection on a Monday night. Then for the next four days he’s in rotten shape, having trouble walking, and in general his quality of life sucks big time. This wasn’t working for us.
He has three choices, one of which is a pill taken twice a day. “Tecfidera™ is an oral therapy contained in capsules taken two times per
day. Tecfidera, formerly known as BG-12, is dimethyl fumarate, a
formulation that was developed specifically for use by people with multiple sclerosis.” He is hoping this is what he gets. Only problem is, the main side effect which lasts for about six months is the runs. Oh, fun…NOT. However, if it eventually improves his quality of life he’s willing to suffer through it.
Another choice is Tysabri it is given once every four weeks by intravenous infusion. And the third choice, one I doubt he’ll ever use, is Copaxone, it has a higher chance of side effects, is injected every day, and daily injections are something he refuses to do. Hell, he hates a once a week injection.
You all have a good one.
English: Copaxone Injection Site Reaction – Upper Left Arm (Photo credit: Wikipedia)
Crap, Monday again.
Lately, I’ve dreaded Mondays more and more. Mondays are when The Curmudgeon gives himself his Avonex shot and begins a downhill slide for the next four days. For anyone new to this blog, The Curmudgeon (my husband) has secondary progressive MS.
By Friday he does better. However, then it is almost Monday again. It’s a vicious circle and one I’m hoping his next neurologist appointment changes.
He is going to ask his neurologist to stop his Avonex and put him on something else. Keep your fingers crossed, his next appointment is coming up soon.
You all have a good one.
English: Progression types of Multiple sclerosis (Photo credit: Wikipedia)
A little pampering goes a long way.
It’s amazing how nice a bit of pampering can feel. Yesterday, late afternoon, I had a hair appointment. By the time I left the salon I felt relaxed, which was good after a stressful day.
The curmudgeon wasn’t having a good day, and I really noticed more cognitive problems. Not sure if it comes from his sleep patterns or from his MS.
When I have to explain something in detail more than two times, you know he’s having difficulty. I try so hard to be patient but I am not always successful.
It’s days like that, where a break and a bit of relaxation is important for my sanity.
You all have a good one!
Hair Cut (Photo credit: Kami Jo)
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