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Another Ampyra post
Posted by doggonedmysteries
DH was born in this town. He might’ve been born in the house we live in had his mother not insisted on going for a walk after dinner one night fifty-seven years ago. It turns out she went into labor about a half a block from the hospital. Had they been closer to home she probably would’ve dropped him on the front steps while his father got the car started. Even though DH was her first (and only) child, she wasn’t in labor for very long. As it was, she barely made it into the hospital before he made his appearance.
Yes, it seems that DH has always been in a hurry. This is probably why his MS tends to frustrate him so much at times. He had to slow down to a three-legged creep. That is until recently.
He’s on Ampyra and it has improved his walking. He’s not back to full sprint capabilities but he is walking better. He’s even walking without his cane occasionally and that’s something he hasn’t done for a few years. Even the dogs have noticed a difference. He’s not riding on his scooter and running them. They walk.
Posted in MS related
Tags: 4-Aminopyridine, Acorda Therapeutics, Ampyra, Author, Biogen Idec, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
One month on Ampyra
Posted by doggonedmysteries
DH has been on Ampyra a little over a month now and there is a definite improvement in his walking. The other day he even said he felt he walked better. Thing is I noticed the improvement before he did, but then I watch him.
It’s been quite a spell since he’s forgotten to grab his cane upon leaving the house. He forgot it two days ago when he went over to his mother’s house for lunch. Yep, I’d say there’s been a good deal of improvement. The upturn in his walking does pose a few problems like him pushing himself too hard and over doing it.
I’m not saying he hasn’t had a couple of bad days because with hot days nothing helps. However, it’s been a long time since he worked on his truck and he did just that yesterday.
He’s been lucky not to have any side effects so far, and if he has had any, he hasn’t mentioned them to me.
Posted in MS related
Tags: 4-Aminopyridine, Acorda Therapeutics, Ampyra, Author, Biogen Idec, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
Ampyra the first week
Posted by doggonedmysteries
After two days, DH said he had a side effect, his nose was itchy. He said if that was all he got he could live with it. By day three, he seemed to walk more than he has of late. He’s spent more time outside with the dogs too. This is encouraging.
I just hope he doesn’t push himself too hard before he used to moving about more. We had a new futon mattress arrive this morning and he managed to get it upstairs and get the old one down before I woke. I’m not certain if it had anything to do with the Ampyra or merely his stubbornness in not asking for help.
Watching him walk around I see that he seems a bit steadier on his feet and doesn’t toddle about as slow as before. Again, I’m not certain if it’s the drug helping or not. I’ll withhold my judgment for a while.
Posted in MS related, My blog, Writer, Writing
Tags: Ampyra, Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, New MS drug Ampyra, Novel writing, Writer, Writing
The Ampyra arrived and so it begins…
Posted by doggonedmysteries
After a complete cluster f***—it seems that the right hand had no idea what the left hand was doing. Gazillion phone calls from DH to the insurance company, the drug company, the doctors’ offices, and back again to straighten things out, we got a phone call saying the drug was on its way. Then another one saying it wasn’t. More phone calls and finally the Ampyra was on its way (again) this time it arrived.
Ampyra day one: DH’s Ampyra arrived at nine in the morning Thursday morning. He took his first dose soon afterwards. He’s supposed to take two a day twelve hours apart. I’m not sure how long or how many doses it’ll take before he notices a difference, if there is a difference. We’re hoping for some changes. It’d be nice if his walking improved.
We’ll give it a few days to a week to see if there is any change. I’ll let you all know if there is. Keep your fingers and toes crossed. It would mean a lot to him if his walking improves.
Posted in My blog
Tags: Ampyra, Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, New MS drug Ampyra, Novel writing, Writer, Writing
DH is getting the Ampyra!
Posted by doggonedmysteries
At least three letters, the neurologist’s intervention, and dozens of phone calls and faxes later, DH will get his Ampyra. What a total cluster f*** that was. Now, if it works, and he walks better he will be over the moon.
However, they only approved his meds for six months. I’m betting we’ll have to go through the whole dance routine again when that rolls around. Oh, what fun that will be…NOT! I can’t understand the whole process. They make you jump through enough hoops to qualify as a circus act and then they have the nerve to tell you yeah, you can have it, but only for six months.
Why? His condition isn’t going to change except maybe for the better and yet you want to toss him in the trash in six months? This sort of thing sucks.
From the looks of it, even if there are sweeping changes in our health care system, there will always be someone denied the proper care or medications.
Posted in MS related, My blog
Tags: Ampyra, Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, drug plans red tape, Family, Fiction, Healthcare, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
It’s a racket I tell ya.
Posted by doggonedmysteries
Their stock is up. Their profits are way up. They are making money hand over fist. I can tell you the why of it too. They now cover fewer drugs, they routinely deny drugs to patients, and they raised the co-pay at least 15%. Can’t help but make a profit when you gouge more and spend less.
The Chairman and CEO, age 55, makes a whopping $1,300,000 yearly salary. I’m betting that if he needs a drug for some illness, he doesn’t have to worry about how to pay for it. The President and COO, Age 56, makes a tidy $810,872 a year. He doesn’t worry either. The SVP Finance and CFO, Age 52, makes $548,560 a year, another one who has no worries about where he’d find the money to pay for a prescription.
Yowza, if we had that sort of money coming in each year we wouldn’t worry either. Ampyra is a new drug. It is a costly drug. Why would they want to nick their profit margin a bit? They live well. They have no worries. Why bother helping out the little guy?
DH’s neurologists want him on Ampyra. It’s a quality of life thing. DH struggles to walk every day. Some days he walks better than other days. However, now it is summer and the heat (especially the record-breaking heat we’re having) makes him worse. Guaranteed, if Mr. Chairman and CEO with the $1,300,000 yearly salary had the same problem, he’d get Ampyra tomorrow.
Posted in MS related, Writer, Writing
Tags: Ampyra, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, Medical insurance lies, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, prescription programs, Profit margins, Writer, Writing
Ampyra approved then taken away
Posted by doggonedmysteries
Well this sucks big time. We were told by a certain health plan that DH was approved for Ampyra and today we got a letter from the same people telling us that he is not approved. You know what, I hate making phone calls. In spite of this, someone has some ‘splaining to do.
Phones are going to be ringing and when I’m finished, I’m betting a few ears will be too. Angry doesn’t describe how I feel right now. I won’t tolerate this sort of treatment. I will fight tooth and nail for DH. No one EVER pulls the rug out from under my loved ones like that. I don’t care whom it is I have to run to ground I will get results.
DH has always said, “Don’t get the Irish Indian mad she will go on the warpath.”
I am past mad and well down the road to infuriated. If I have to go all the way to the top of the company, I will do that. I can make waves, big ones. I am a writer.
Posted in MS related, Writer, Writing
Tags: Ampyra, Author, Beads, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, Medical insurance lies, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing


