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STROKE: I Want to Scare You Into Knowledge

I want to scare you out of your wits. I want to shake you and make you sit up and listen.

Because I don’t what happened in my family to happen to you. One uncle was blinded by stroke. Another died.  I was luckier: I survived my stroke, but not intact.

May is Stroke Awareness Month, my twelfth since stroke blindsided me in January 2002.

One of the real tragedies of stroke is that we don’t fear it enough.

I was talking with a fellow stroke survivor yesterday. She can no longer travel. I can no longer do math more complicated than a fifth grader might try. Strokes are like tornadoes, we decided, dropping in from nowhere, tearing lives apart in very different ways.

Or maybe strokes are like serial killers.

Watch this ad from the National Stroke Association in Australia. It’s graphic. It’s frankly rather gross. I want to you see it.  Then I want you to click below to learn what you need to know about stroke.

Learning the Facts about Stroke Can Save Your Life

 

Do You Know The Five Warning Signs of Stroke?

 

Do You Know the Special Stroke Symptoms Typical to Women?

 

What Should You Do If You Think Someone May Be Having a Stroke? (Hint: Act FAST!)

 

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FDA OKs Kcentra: New Drug to Quickly Stop Acute Coumadin Bleeds

For those of us who take the blood thinner warfarin (brand name Coumadin) or similar drugs to prevent prevent clots, one of the scariest of life’s scenarios is an accident or fall. It’s especially scary for patients like me who, because of an acute tendency to clot, must keep their blood extra thin to prevent stroke or heart attack.

In the twelve years I’ve been taking warfarin, I’ve had many bleeding incidents, three of them serious.  One,  which my doctor feared was approaching the dire “compartment syndrome,” kept me in bed for five weeks.

Now, there’s a new weapon in our battle to keep healthy.

Yesterday,  the U.S. Food and Drug Administration  approved Kcentra (Prothrombin Complex Concentrate, Human) for the “urgent reversal” of vitamin K antagonists like warfarin  in adults with “acute major bleeding.” Plasma is the only other product approved for this use in the United States, the agency said.

Like plasma, Kcentra is used in conjunction with vitamin K to reverse the anticoagulation effect and stop bleeding. The advantage of the new drug is that, unlike plasma, Kcentra does not require blood group typing or thawing, so it can be administered more quickly than frozen plasma. In addition, Kcentra is administered in a significantly lower volume than plasma at recommended doses. This will benefit patients who may not tolerate the volume of plasma required to reverse the anti-coagulation.

So, for someone with a life-threatening bleed, Kcentra may offer a advantage. I’ll be anxious to talk to my doctor to hear his thoughts.

The down side of Kcentra is the possibility of blood clots,  even when used properly.  That’s a special concern of mine, since the disease that caused my stroke—Antiphosoholipid Syndrome (APS)—is especially prone to clotting under traumatic conditions. Sudden reversal of anti-coagulation could put me at very high risk of another stroke. So my personal strategy, worked out with my doctor,  won’t change: watch my blood thinning like a hawk; get my INR (a measure of blood thinning) tested frequently; try to avoid falls or accidents; and in case of  bleeding that’s not life-threatening, reduce or stop the warfarin (in close consultation with my doctor) and let my INR  drift down gradually.

But for those of us taking Coumadin, life-threatening bleeding is a real possibility. So even though I’ll try hard never to need it, I’m glad for the treatment alternative Kcentra presents.

You can read more about Kcentra here.

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Ten Tech Tips To Save Time

As  stroke survivor with impaired dexterity in my hand, typing on the computer is one of my greatest frustrations. Emails and web posts are measured in hours, not minutes. So I’m always looking for ways to save time.

I think of myself as decently tech-savy, but I learned several new time-saving tricks today from New York Times tech columnist David Pogue.  He’s featured in the TED “talk of the week” with the presentation, “10 Top Time-Saving Tech Tips.”  Wow, that’s a tongue-twister that, with my  lisp, I can’t quite master. But I love his ten tips.

My favorite: When navigating the web, hit the space bar to scroll down a page. Hit “shift-space” to scroll back up. How could I not know that?

The video is only six minutes long, and well worth a look.  10 Tech Tips to Save Time

 

 

 

 

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Ring in the holidays at the Left Coast Writers Book Party December 10

What better place than a bookstore to start your holiday shopping?

If you’re in San Francisco, join us tomorrow night (Monday, Dec. 10) at 6 pm at the Left Coast Writers Book Party at the Book Passage store at the Ferry Building.

There’ll be books, readings, and lots of holiday cheer.

I’ll read a story that shows what can happen when you stray far from home outside your comfort zone. Other readers include Kate Crawford, Unity Barry,  and Maureen Dixon.

Hope to see you there.

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Can Statins Help Treatment of Antiphospholipid Syndrome?

New research suggests that statins, traditionally used for cholesterol lowering, could be used in the management of patients with antiphospholipid syndrome (APS), a blood clotting disorder that causes miscarriages, deep vein thromboses, and strokes.

The new research shows that the statin fluvastatin could reduce the inflammatory proteins that are elevated in patients with APS.

The research, by a joint team from the Special Surgery in New York City and the University of Texas Medical Branch, Galveston, Texas, was presented November 12, 2012, at the American College of Rheumatology/Association of Rheumatology Health Professionals  meeting in Washington, D.C.

Read more about the research here: http://bit.ly/UbJ03c

The anti-malarial drug Plaquenil has been used for years in treatment of APS. It helps to reduce the antibodies that are the primary cause of APS patients’ tendency to produce blot clots when they shouldn’t. I’ve been taking Plaquenil for antiphospholipid syndrome for ten years.  After my stroke, my doctor hoped it would help lower my antibodies, but estimated it would take several years. She was right. After about four years, the antibodies started to fall. Not long after that, I noticed I was feeling better, with fewer flares and low-energy days.

It will be interesting to see how well statins work and what the advantages might be.

Do you have any experience with statins?

 

 

 

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New Video Explains Antiphospholipid Syndrome

Anisur Rahman

Professor Anisur Rahman of University College, London, discusses the latest thinking on Antiphospholipid Syndrome, its causes and treatments in a 35-minute lecture delivered October 10, 2012, at the Royal Society of Medicine. The easy-to-understand video presentation, with slides, is available here.  (http://bit.ly/VORFdC)

It’s a great resources to help educate physicians, patients, and their families.
Antiphospholipid Syndrome or APS (sometimes called Hughes Syndrome) is an autoimmune disease that causes blood clots, miscarriages, and strokes. APS is the most common cause of acquired thrombophilia (the tendency to produce blood clots when one shouldn’t  because of a genetic or immune system abnormality).
As Professor Rahman explains, APS is the cause of thirty percent of strokes in people under 50. I was one of those.

If you or anyone you know is affected by APS, this is a great learning tool.

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Stroke: Know the Warning Signs Unique to Women

I never thought much about my brain until it went haywire on me.

I’d ignored a few months of irksome forgetfulness–just approaching menopause, I thought; nothing serious. And, with perfect blood pressure, low cholesterol, regular exercise, and a healthy weight, I had no idea I could be at risk for stroke.

I was home alone the morning my stroke hit. The only symptom I noticed at first was a “floppy doll” hand.

“Strange, I thought,” my hand fell asleep in the shower.”

Of course, hands don’t really fall asleep in the shower—a symptom that my thinking was confused.  Other than being unable to control my hand, I felt fine, except for a strange out-of-body sensation, almost like I was a hovering witness looking down on myself. There was this nagging thought that I should call for help, but I felt almost guilty at the thought of rousting someone to come over. After all, I wasn’t in any pain.

Gradually it dawned on me that I couldn’t remember where to find my husband, couldn’t think of a single friend’s name, didn’t know how to work the computer, and finally—when I decided to call emergency, anyway—I couldn’t remember the number­: 911.

I did think to dial “O.” It was only when the operator answered and I tried to speak that I realized: the “words” coming from my mouth were just gibberish. The operator had to trace the call to send an ambulance.

When the paramedic told me I was having a stroke, I didn’t believe him. Of course I’m not having a stroke, I wanted to tell him. Strokes are for the elderly, for smokers, for overweight couch potatoes.  I’m forty-eight years old, fit and perfectly healthy. Perfectly healthy people don’t just wake up feeling fine and then–out of the blue–have strokes.”

But sometimes they do. I did.

Save a brain, of even a life. Make sure you and your loved ones know the most common warning signs for stroke:

  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

 

Stroke symptoms may be different in women.  Symptoms typical in women also include:

  • SUDDEN face and limb pain
  • SUDDEN hiccups
  • SUDDEN nausea
  • SUDDEN general weakness
  • SUDDEN chest pain
  • SUDDEN shortness of breath
  • SUDDEN palpitations

A stroke is an acute medical emergency. Know the warning signs —then Call 9-1-1

Has anyone in your experienced stroke? What were the symptoms?

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Packing for Paris, Part 2: Electronic “Gear”

Packing for Paris is not just clothes. What about all the electronic “gear” we’ll need for a working trip?

Packing is always hard for me. With memory loss and attention deficit from my stroke, it sometimes feels as though I’m running around the house for days trying to determine what I’ll need. Making lists helps.

Here’s the “gear” list I’ve make for myself for a trip this Fall to Paris and other destinations in the Isle de France. I’ll be staying in an apartment in Paris and, outside Paris, in older hotels in small villages–places that often aren’t geared for the proliferation of electronics that seem so indispensable these days.

But first a word on voltage and plugs …

France operates on 220 Volts and 50Hz on AC, while the US operates on 120 Volts and 60Hz. Voltage used to be a bigger consideration than it is today. Now, most computers, cameras, cellphones and e-readers are dual voltage, so the only adjustment necessary is a plug adapter.

Many US heat-generating appliances–like hair dryers, curling irons, or electric rollers, are not. In years of travel, I’ve found voltage converters heavy to carry, difficult to use, and unreliable, especially in older buildings. Instead, I just make sure all my appliances are dual voltage. Dual voltage hairdryers, curling irons, rollers, travel irons, etc. are readily available at travel stores and travel catalogs like Magellan’s.  With so many electronics–and relatively few outlets in older hotels, I also now carry a compact dual voltage extension cord.

My Electronics Packing List for France

✔

 Item Don’t forget
Cell phone Charging cord
Camera
  • Battery charger
  • Extra battery
  • Memory cards
  • Instruction book
  • USB photo loader

 
Laptop computer
  • Charger
  • Extension cord
  • Mouse if needed
  • Extra batteries for mouse
  • I once carried a mouse pad;  now I just use a magazine
E-reader if you have one
  • Charger

 
Travel size dual voltage hair dryer
Dual voltage curling brush
Plug adapters, both grounded and Non-grounded
Dual voltage extension cord
Lightweight computer bag to carry all this stuff. I like the Keen Adele.

 Have I forgotten anything?

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Packing for Paris, Part 1–Clothes & Accessories

My French friend, Antoinette, has been advising me on what it takes to be stylish in Paris, where she and I will be traveling this fall with a group of friends.

Jungle Pants are out, out, out! As are waist packs, fanny packs, and­–mon Dieu!–tennis shoes.

Instead, we’re to put on bright lipstick, stash all our gear in an enormous black leather purse, and tread the cobble-stoned streets in stylish stiletto-heeled boots and a basic black wardrobe accented with colorful scarves and big jewelry.  I went for the bright lipstick and black bag.  The black wardrobe isn’t a problem. Alas, the stiletto-heeled boots (or heels of any kind) are out for me. I’m opting instead for my comfortable walking shoes and perhaps some low-heeled dress shoes that I’ll drop into that big black purse and slip on at appropriately stylish moments. Done!

Or not.

Here are a few other things I always have I my “kit bag.” They’ve helped me out of a jam more times than I can count:

 

✔

 Item
Rain jacket
Umbrella
Opera glasses – good for viewing stained glass windows as well as opera
Pocket magnifier (credit card size)
Pocket knife and small “leather lady” tool (in checked bag!). Great for wine & cheese picnics
Child-sized scissors
Small travel sewing kit
Glasses repair tool
Backup pair of prescription glasses
Notebook or journal
Extra pens and pencils
Quick dry travel washcloth
Small bar soap
A few travel packets of woolite
Small sandalwood fan
My favorite ginger tea
A few straws of sugar free electrolyte mix to “spike” my bottled water
A small currency conversion chart that I paste on the back of a business card

 When you travel what “special” items do you carry to make life easier?

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Getting ready for a trip? A few important health reminders before you go …

My office is awash in yellow stickies this week … Don’t forget! Underlinings, stars and exclamation points decorate every page.

It’s clear there’s more  to remember than my brain can handle. Here are just a few of the admonitions swirling in my damaged  brain … I must pause and pull this together into an at least semi-coherent list:

  • Check  meds carefully. Order refills in plenty of time. Then, count to be sure I have enough of everything to last at least five days longer than I plan to be away. The extra days are a contingency against transportation delays.
  • Always carry my meds with me – never in checked luggage.
  • In addition to my usual medications, pack extra vitamins and remedies for colds or upset stomach that might arise on the road.
  • As a stroke patient on blood thinner, I carry lots of band-aids as well as pressure tape and clotting agents like the Quick Clock sponge.
  • I always get my INR checked (which tells how how well the Coumadin is thinning my blood) a day or two before I leave – several days if I’ve had trouble keeping stable.
  • I try to arrange it so I don’t need another blood test before I return home.  But, I carry a prescription from my doctor for a blood test to measure my INR just in case. If sense things are “off,” I can have it tested on the road.
  • I have to prod myself to wear my medical ID bracelets.

I also remind myself to:

  • Charge cell phone, computer, camera and Kindle the night before I leave
  • Double-check itineraries and tickets
  • Arrange airport transportation
  • Get plenty of rest before I leave. HA!

 

Do any of you feel overwhelmed by all the details?