Botox for Spasticity Didn't Work? Try Dysport If You Like

This article caught my eye: Ibsen Pharmaceuticals developed a drug for spasticity--Dysport. Huh! I thought the only drug in the world to stop spasticity was BOTOX. (Maybe all caps the way BOTOX is often written swayed my opinion).

Anyway, the US Food and Drug Administration (FDA) recently approved the use of Dysport for the treatment of upper and lower limb spasticity to reduce the spasms in adult patients and only lower limb spasticity in children under 18. (Physical and occupational therapists call it tone, but everybody has tone. What therapists are really saying is abnormal tone, resulting in spasms or spasticity).

Clinical improvement with Dysport can happen after a week, with duration in improvement as long as 20 weeks before another injection is needed. Dysport can be used for spasticity in stroke patients and well as other traumatic brain injuries.

Cynthia Schwalm, Chief Executive Officer, Ipsen Biopharmaceuticals, Inc. says, “Spasticity can have a profound impact on adult patients and their abilities to perform the most basic daily tasks. Ipsen is committed to providing these patients, their caregivers and physicians with a comprehensive support offering including Dysport."

The FDA approval was based in part on clinical trials conducted in over 600 patients. The medicine was first registered in the United Kingdom in 1990 for other uses and is licensed in more than 80 countries in eight different indications, with over 1,300 peer-reviewed publications.

Known as the Phase III pivotal study, 238 adult patients with required upper limb spasticity participated in the study for up to one year. The Phase III data showed that those treated with Dysport demonstrated statistically significant improvement in muscle tone measured by the Modified Ashworth Scale (MAS), the scale originally used to test multiple sclerosis patients. 

"At Week 4," the report says, "both doses of Dysport  (500 units and 1000 units) significantly reduced muscle tone as measured by MAS in all primary target muscle groups,,,with approximately 3 out of 4 patients responding to Dysport. The most frequently reported adverse reactions (≥2%) are urinary tract infection, nasopharyngitis, muscular weakness, musculoskeletal pain, dizziness, fall and depression." (No comparison with Botox was accomplished drug-to-drug in any of the studies, but Botox has mostly the same adverse side effects).

Spasms for me go on for as much as two hours in a row, every 18 seconds, even now, 8 years after my stroke. When I had Botox injected in my leg 2 years after the stroke, I felt little relief, and that relief was short-lived. I was injected twice by the same doctor. When time 3 occurred, I couldn't get an appointment and had to see another doctor in the same facility. I always had the same questions, but when I asked the new doctor if Botox was dangerous, he said, "You could die." I jumped off the table, headed for the door, and left, but he was right.

"Dysport and all botulinum toxin products," the report goes on to say, "have a 'Boxed Warning' which states that the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening." (Gulp!)

If you do try Dysport, report any negative side effects of the drug or, for that matter, any prescription drugs to the FDA. (Doctors get free pills or injections from the drug companies known as samples, so you can't depend on the docs to report side effects. The docs are "wined and dined" by the drug companies to get the docs to prescribe their product. The drug companies and the docs have a co-dependency and you are a virtual guinea pig. So you have to be your own advocate). Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

First Impressions of Portland, Oregon, aka Welcome to Whackyville

I am in Portland, OR, now, which is a new beginning for me (at close to the big 70) because I have always lived and worked in or near Philadelphia, PA, which is 3000 miles from where I am now. But here I am, close to one of my sons in Whackyville. C'mon. Don't take offense, Portland residents. I like it here. Besides, Whackyville is good for the economy. Some examples are in order.

I just missed the 11th annual World Naked Bike Ride last month with almost 10,000 participants where cyclists gathered in a park an hour before the ride, shedding garments. There are 75 cities around the globe participating in 20 countries, but Portland has the most participants. Someone interviewed in the crowd said the naked people were protesting oil dependency. Thus, bikes are big here. Real big.

And then there's the pot. Cannabis is legal to buy here. I saw 3 pot stores on my way from the airport to my son's house. 

These are the rules: 

• Gifting of recreational marijuana to adults 21 and older is allowed, so long as the amount gifted falls within the personal possession limits and no financial consideration with the transfer. 
• Driving under the influence of intoxicants (DUII) refers to operating a motor vehicle while intoxicated or drugged, including impairment from the use of marijuana. 
• Adults 21 and older can use recreational marijuana at home or on private property. You can’t use recreational marijuana in public places. Public places are places to which the general public has access. This includes, but is not limited to: common areas in apartments and hotels; highways and streets; schools; parks and playgrounds; premises used for public passenger transportation (such as bus stops); and amusement parks.    
• You can’t buy marijuana in another state and bring it into Oregon, nor can you take it from Oregon across state lines. That includes to and from Washington and California where recreational marijuana is also legal. Taking marijuana across state lines is a federal offense.

Old Dirty Bastard

Ever hear of Voodoo Doughnuts? They have their own website--voodoodoughnut.com. One person told me that on the weekends, a lengthy line exists around the block in downtown Portland for anybody wanting a Voodoo Doughnut. The only other place they're sold is Denver (where recreational pot is allowed, too. Just sayin'. Munchies, anyone? Anyone?) They have the regular kinds like glazed and powdered, and then the other kinds, like Old Dirty Bastard, Grape Ape, Gay Bar, Tex-Ass, Cock-N-Balls, Memphis Mafia. Hey. Don't even try to guess. Go to the site!

Then there is the Summer Fair presented by the Oregon Cannabis Association (I should stop giggling and fit in like I'm from here), and the Mermaid Parade to celebrate water, and to quote the advertisement, "and the living culture of professional mermaid entertainers [mermaid entertainers--really?] now thriving in Oregon and throughout the Northwest who help to bring the magic and mythology of water myths to people everywhere," and 

the majority of natives don't use any umbrellas when it's pouring. If they don't have a hood, they just get wet. Really sopping wet. One Portlander said in Reddit, "The argument against umbrellas in Portland is that the heaviest rain here often comes in sideways with a lot of gusty wind. At those times an umbrella 1) won't offer very much protection 2) might get blown inside-out 3) could be a hazard to other pedestrians as it gets blown around." OK, then. Frizzies for me.

I'm going to get immersed in Portland culture, besides going to the naked thing next year, having some weed, and eating a Voodoo doughnut after munchies set in. I'm re-inventing myself. Peace out.

ALERT: Millennials Are Prime Candidates for Stroke, Too

Who's known as Generation Y or Echo Boomers, born between 1980-2000, totally immersed in a world of digital technology, the largest generation in western history since the1930s, were the number one reason why Barack Obama won the Democratic nomination during the primary season, focus on larger societal needs rather than individual ones, are mostly liberals, favor the legalization of weed and same-sex marriage, are non-religious, impatient, and adventurous?

Answer: Welcome to the world of Millennials. 

Oh. One more thing. More Millennials are having strokes. 

So if you're one of the millennials, put down your damn iPad or iPhone or whatever techie-toy you use and read this f***ing post. If you don't read it, and that goes for parents and relatives and friends of millennials, that's just pure stupidity.

An analysis of Millennial strokes in Scientific American, reported by Dina Fine Maron one month ago, finds this trend differs, depending on where one resides and depicted in the graph below. The South has most; the West has least. Big cities has most; rural areas has least. 

Yes, it's true. A growing body of research indicates strokes among U.S. millennials—ages 18 to 34—have climbed significantly in a little more than the last decade.

The investigation used data from the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ) and discovered the hospital stroke victims' discharge data increased from 2003 to 2012.

Furthermore, a study published earlier this year in JAMA Neurology concluded that there was a 32 percent uptick in women stroke survivors in the 18- to 34-year-old range and a 15 percent spike for men in the same range from 2003 to 2012. 

With Scientific American's analysis, they decided to research further to investigate whether the stroke trend differed by areas.

Ralph Sacco, president of the American Academy of Neurology, said, “There has been mounting evidence from different studies suggesting that even though the incidence and mortality of stroke is on the decline, the rates may not be dropping quite as much—and even [may be] increasing—among younger populations. The reasons for these trends are not entirely clear but there are concerns about obesity, diabetes and physical inactivity having a greater impact in younger stroke victims.” Drug use, he said, may be another factor.

MRA of a brain bleed

Moran reported earlier analysis from stroke expert Mary George and colleagues at the Center Disease Control and Prevention found stroke risk factors such as obesity, smoking and hypertension are escalating among younger adults. 

“I think this data is consistent with other data, and so whenever you have replication consistency across different data sets we begin to take it seriously,” Sacco adds. “I think the fact that we see this trend across all regions, and that we see the amount of relative increase for hospitalizations rising for stroke, is alarming.”

In 2012, Dr. Brett Kissela, professor and chair of the Department of Neurology and Rehabilitation Medicine at the University of Cincinnati, specializes in factors that influence stroke outcome, including diabetes and drug use among the younger adult population. The study was supported by the National Institutes of Health.

"The rising trend found in our study is of great concern for public health because strokes in younger people translate to greater lifetime disability," said Kissela. He added that "younger adults should see a doctor regularly to monitor their overall health and risk for stroke and heart disease.”

That said, if you know any millennials, share this post with them, providing an opportunity for them to stay healthy.  Stroke is a bitch. Take it from somebody who surely knows.

...And More: The Tales of a Stroke Patient Is Expanding

In a dialog between Rebecca (who overlooked her husband's birthday and who's pregnant with triplets, in the famed This Is Us, the second season coming in September on NBC) and a liquor store owner, Teddy:

Teddy:     Hi.

Rebecca: Hi. I need to make a fancy chocolate almond cake as fast as humanly possible.

Teddy:     Ok.

Rebecca:  So I'm going to need butter, sugar, flour, almonds, and semi-sweet chocolate.

Teddy:      M'am. This is a liquor store.

Rebecca:  I know. But the sign said Liquor and More. So where's the more?

Rebecca, on the advice of Teddy, buys a banana-nut muffin instead and Twinkies to squeeze out the insides. So the liquor store "and more" is exactly what this store is.

Babies and More, Mufflers and More, Signs and More. The "and More" is used like et cetera, but a small number of people (I'm being kind here) may not understand et cetera, coming from Latin which nobody speaks anymore except clerics but good for a higher score on the SATs, an expression that is used in English to mean "and other similar things."

But everybody understands "and More." So I'm changing the original title of my blog from "The Tales of a Stroke Patient" to read "The Tales of a Stroke Patient and More." Yes, I have opinions with most of my brain left. I started a second blog, "As Joyce Hoffman Sees It," and then realized later the "and More" tacked onto the original title would be just fine, allowing me to write about anything, like Donald, energy, Donald, abortion, Donald, refugees, Donald, taxes, Donald, marijuana, um, et cetera.

I'm delighted to inspire and educate folks with my posts about strokes, but I want more. And so do you. So every once in a while, I'll write something that has nothing to do with strokes. Where's the more? You may be looking at it soon.