National Stroke Association - A Resource

The National Stroke Association is a US-based organization who's "mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke."

This is a fancy way of saying "we help stroke survivors, and help minimize the chances that you'll have one".
I am a stroke survivor, and although I live in Canada, the infrastructure offered by such associations is appreciated - it is a fountain of knowledge. When I had my stroke, I knew nothing about stroke, and didn't know anyone close (in family, friendship, or proximity) that had suffered one. So I kind of had to go it alone.

Fortunately for me, after a couple of weeks in the Neurology ward of our major-trauma hospital, I was transferred to the rehab wing of a much smaller, closer hospital - handier to home and easier for family and friends to visit.
There are, I think, two really important therapies in getting better (different, but better) after a stroke:

1. Family and friends that come to visit. You're going to be in rehab for weeks or months (for me, it was 93 days total - I'd say about 70 of those in rehab), and the more visitors you have, the better. It caused some minor embarrassment to me as I had a visitor(s) every single day of my stay. Some were not so lucky ... there was a young man on my ward who had one visitor during the 70 days I was there. Can you say "depression"?
2. Knowledge is king. Knowing what's happening to you, what has happened to you, and what will likely happen in the future are powerful things. It gives you a sense of control when you most need it. Websites like the National Stroke Association are really helpful in helping you gain that knowledge. When the neurologist comes to your bedside and you have intelligent questions to ask - they engage, and I found they would spend the extra time with you. A smart, engaged patient gets the attention of good doctors and nurses.

Of course there's the standard rehab thing - learning how to walk, to speak, to think, to write all over again. But these two struck me as understated but really empowering.

TIA's or mini strokes

Mini strokes or  little strokes are what people are referring to when they have a Transient Ischemic Attack, or TIA. It's when a person has stroke-like symptoms lasting up to two hours.

TIA's can be quite varied, but normally present themselves in one of these ways:

• Muscle weakness, normally on one side of the body - like your arm, your leg, or your face.
• Tingling or numbness on one side of your body.
• Difficulty swallowing.
• Difficulty reading or writing.
• Trouble with speech - either speaking yourself, or understanding what someone else is saying.
• Mood changes, personality changes.
• Problems with your vision - could be double vision or partial or full loss of sight.
• Sudden loss of memory or confusion.
• Experiencing a change in sensation - pain, temperature, hearing, pressure, etc.
• An abnormal change in your alertness - all the way to being asleep or unconscious - or the inability to maintain focus.
• Vertigo or dizziness.
• Clumsiness, uncoordinated - hard to walk. Balance and coordination issues.
• Can't recognize external stimulus - your senses aren't working right.Control of body functions - bladder and bowels.

I had a TIA during a hike up a mountain after we had reached the top and were resting. I experienced what I can only call "rubberyness" on my right side, and some coordination issues - it required abnormal focus to get down the mountain. Just like they said - the symptoms lasted for an hour or two, and then I was fine. I didn't know anything about TIA's at the time, and so I ignored the whole event.

The next day, on the phone to one of my work colleagues, I found that my handwriting was like chicken-scratch, that I made dozens of errors in my typing (of which I am normally fast and accurate) and there was a slight slurring of my voice. I went to my doctor and he got me into a stroke clinic right away. I was evaluated, and it was determined that my TIA must have been a very minor stroke. All the symptoms were gone in a few days, and everything returned to normal. Fifteen months later I had a much more major stroke that affected things in a much more serious and long-term way.

There's not much you can do about a TIA except get yourself to a doctor or emergency room. They can evaluate you, and try to make sure that your TIA doesn't turn into a full blown stroke (for me, they tried everything they could think of - I have no risk factors - but it happened anyways)...

Stroke symptoms for men

Heart disease (heart attack) symptoms for men are very different than for women - men tend to report different "sensations" than women, although the underlying issue is exactly the same.

Although most strokes are basically the same thing as a heart attack - only in your head instead of in your heart, the stroke symptoms for men and the stroke symptoms for women are the same. If you experience any one of these symptoms, don't delay. Go to the hospital by ambulance right away - time equals brain cells. The sooner you get some aggressive stroke treatment (TPA, the "clot busting drug" comes to mind), the better the chances you have of limiting the damage a stroke can do. And boy, can it ever do damage.

I've had both open heart surgery (double bypass), but fortunately it happened before I had a heart attack - and I've had a relatively minor stroke. Let me tell you that the heart surgery was a cake-walk compared to the stroke. 93 days in a hospital, re-learning how to walk and to talk, and still unable to do some things I used to - like run and swim. And my stroke was minor according to the NIH Stroke Scale.

So on to the symptoms. I like to remember the FAST method of recognizing a stroke:

F stands for face. Try to smile in a mirror. If one side of your face doesn't respond, or droops, you may be having a stroke. Call 911.

A stands for arms. Stretch both arms out before you, palms up. If one arm falls or drifts down, or cannot get up in the first place, you may be having a stroke. Call 911.

S stands for speech. Speak to someone if you can. If your words are slurred, in the wrong order, make no sense, or you can't speak at all, you may be having a stroke. Call 911.

T stands for time. Time is brain cells. If any of the FAS symptoms appear, don't question yourself (this is also typical - pretending nothing is wrong), call 911 and get an ambulance right away!

NIH Stroke Scale - "scoring a stroke"

When I entered the Emergency Room after suffering a stroke, and having partial paralysis and some slurred speech, I wondered why they kept asking me such obscure questions. There seemed to be no particular rhyme or reason to their questioning, and it took until now, some two years later, to understand just what they were doing.

They were following the National Institutes of Health (NIH) Stroke Scoring methodology. This is often called the NIH Stroke Scale, and it is a scale from 1 to 30 on how severe your stroke is at the time it is evaluated.
A score of 25 or more means that your stroke is considered "severe", and a score of less than 4 is considered minor in comparison.

The major things they look for in this evaluation are:

• Level of consciousness . Scored from 0 (keenly alert) to 3 (unresponsive physically and mentally).
• Asking what month it is and what age you are. Score a 0 if you answer both correctly, and 1 each for a wrong answer to either question.
• Open and close your eyes, and clench with your non-affected hand. Again, 0 if you do both, 1 each if you cannot do either.
• Test your gaze with your eyes. The doctors will have a score of 0 if everything is normal, and 1 or 2 depending on what they find.
• There are a couple of other visual tests they run, also scoring from 0 (normal) to 2.
• They will measure facial paralysis (scale 0 to 2).
• On a scale of 0 (normal) to 4, they will measure both your arm and leg movement/paralysis.
• They will measure ataxia or your ability to coordinate movement - by touching your finger to your nose and to an outstretched point (like the doctor's finger) - maybe do the same with your leg as well. Measure 0 to 2.
• The doctors will test your sensory perception - applying a small prick to your affected limbs. Measure 0 to 2.
• They will run a couple of tests on your speech. Is it slurred - how severe? Are you comprehensible and do you comprehend?  The first is measured 0-2, the second 0-3.
• Finally, they will evaluate how attentive you are. Do you suffer from neglect to your surroundings? Are you "out of it"? Score 0-2 again.

So this is how they evaluated me - I have no idea what my score was, but by my reckoning, it must have been somewhere around 10 - considered mild by these standards. As luck would have it, I suffered another (or perhaps a continuation) stroke a couple of weeks later, when my speech was affected - so I could probably add another 4 or 5 to the score.

Are cancer drugs more important than cardiovascular drugs?

A stroke is basically a heart attack in your head. They are the same thing, affecting different parts of your body. Because of this similarity, I thought that this recent study was interesting...

For years and years, cancer drug development lagged behind drugs for cardiovascular diseases. When you look at the number of new drugs under development, though, cancer drugs are now outweighing heart disease drugs by a ratio of 700:147 (new cancer drugs in the pipeline versus new heart disease drugs).

Over the past, new heart drugs were introduced at a rate of 52:11 over cancer drugs (in the 1980's) and in the 1990's it changed to 74:38. Year to date, the ratio for cardiovascular to cancer has reversed to 3:13.

The driving force behind this change is, of course, money. There is more money in cancer drugs mostly because they tend to be very specialized, versus very general in the cardiovascular arena. But this is what I found most interesting: The rate of "successful development of new cancer drugs outweigh cardiovascular drugs is 7% versus 3%". This puzzled me, but in this Tuft's University Study they explained that the bar for acceptability in cancer drugs (meaning unwanted side-effects) was much higher. We are willing to accept far greater risk in cancer drugs than we are with heart drugs. Even the FDA is in on the act, and they approve these drugs accordingly.

Counter-intuitively, the success rate for development of cancer drugs is much lower than heart drugs (1.3-1.8% for cancer versus 4.9% for heart) but, because these drugs tend to target a smaller, more specific audience, they can garner higher prices and less (if any) competition. So the drug manufacturers and researchers have switched gears to go where the money is (even though heart disease affects more people, there is much more competition with treatment, and consequently lower prices).

I don't know what this holds out for the long term - we are still a ways off from declaring "victory" over heart disease and stroke. But I guess they've held the limelight long enough.

Stroke risks for women...

It's often been thought that stroke symptoms for women (which are in-fact the symptoms for cardiovascular disease in general)  were different from those in men. It's now thought that they aren't - it's just that they are "interpretted" differently.

Heart disease and stroke are basically the same problem, but affecting different areas of the body - the exact same mechanism is at work. Heart disease affects the heart, while stroke affects the brain.

So if you take care to live a heart-healthy life, you cover off the risk of stroke as well (that's why it's normally referred to as "heart disease and stroke"). The signs of a stroke happening are the same regardless of gender - and the best way to determine if you're having one is the FAST Method.
When it comes to heart disease in general, though, there are several gender-specific things you need to understand. In general, they are:

• The role of estrogen:  The hormone estrogen tends to protect women from heart disease until they reach menopause - around 50 years old. Things that effect estrogen levels, though, can change things up.
• Birth Control Pills, especially if you smoke, can cause high blood pressure and blood clots in a small group of women - over age 35 seems to be a magic number for these populations.
• Pregnancy. Conditions around pregnancy can increase certain heart disease risks - pre-eclampsia, gestattional diabetes, and stroke ue to some underlying problem associated with child-birth.
• Menopause. Menopause ends the "protection" that women normally enjoy free from heart disease. This has to do with changing estrogen levels, and he subsequent changes in cholesterol levels, triglycerides, blood pressure, and body fat.

The things that you can control to limit heart disease and stroke risk are the same for men and women - smoking, high blood pressure, high cholesterol, physically inactive, and obesity.

The things you can't control are gender, age, family history and your ethnicity.

So the bottom line advice - do what you can contol. Don't worry about the rest. If you look after heart health, you're looking after stroke risk too.

Do drug companies make our decisions for us?

A couple of days ago, I commented on some research that found statin use in young stroke victims reduced their chances of having a second stroke. With support of several doctors, Zocor (the trade name of a brand of simvistatin, which was one of the most used statins in the study), jumped on the research and is now promoting the idea that statins (specifically, Zocor) should be made available (and, so I can assume) actively marketed to younger people as a prophylactic to prevent stroke and improve their cardiovascular health.
I'm of two minds with this one. In the first place, they (the researchers) have "proven" that statin use in younger populations tend to reduce the risk of asecond stroke. Note the term second stroke - so a bit of an assumption that this should hold true for first strokes - although this should be a natural, and logical, assumption.
In the second place, they chose to ignore the very real, and documented, side effects from Zocor (any statin has these similar side effects). They can include intercerebral hemorrhage, myopathy and rhabdomyolysis (which can lead to kidney failure - there are several outstanding lawsuits with Zocor).
In our zeal to eliminate as many stroke risk factors as possible, in combination with the corporate zeal to find any way to increase the bottom line, I'm wondering if we are jumping at conclusions that aren't supported by facts, and that may cloud the actual risk/benefit of our decisions. I also question the medical profession's ability to make this decision for us - I think it's been usurped by the pharmaceutical industry - training about this stuff, or perhaps the interpretation of research is done more by pharmaceutical reps than by doctors. We've allowed them to become the prime source of education for our doctors - that's like making Ford our prime source of information about cars.

TPA and Exercise

No, these two aren't really related, but today I read about two different studies that had two different outcomes - one I was surprised with, the other was always obvious to me.

First, the TPA study. Here in Canada, I assume, when you're admitted into the Emergency Room having just suffered a stroke, the administration of TPA (tissue-type plasminogen activator) or the "clot buster" drug was pretty much automatic. Turns out, in this US-based study anyways, that's not true. Researchers did a survey of Neurology Residents - those that had completed their training in 2010, and those that had finished in 2000. Here are the results of this survey:

• 2010 - 94% comfortable administering TPA independently
• 2000 - 73% comfortable administering TPA independently
• 2010 - 95% personally administered TPA
• 2000 - 80% personally administered TPA

Although current (US) practice guidelines recommend the administration of TPA for ischemic stroke, fewer than 1 in 10 actually get the treatment! I was shocked when I read that. It seems that experience performing the TPA therapy was directly related to how comfortable you were doing it. The more you do it, the easier it is for you. Some more interesting data on the administering of the drug:

• 78% of Neurologists who had administered TPA without supervision were comfortable administering it for new patients
• 52% of Neurologists who had only administered TPA under supervision were comfortable using it with new patients.

So the bottom line for me - if ever caught in the USA with another stroke - seek out the freshest intern you can find, and whether he's comfortable with it or not - ask to get the TPA.

Next, the exercise thing. Over the years, all of us have been told that leading a sedentary lifestyle comes with a higher risk of coronary heart disease (CHD). Well, now researchers have quantified this .. they've taken the US guidelines for physical activity and measured them for CHD risk.

If you moderately exercise (brisk walk) 150 minutes a week - 22 minutes a day - you reduce your chances of having a CHD event by 14%.

If you moderately exercise 300  minutes a week - 45 minutes a day - you reduce your chances of having a CHD event by 20%.

So - the biggest bang for your buck is simply getting off the couch for a few minutes a day and doing something physical. You get even more return if you do more physical. This isn't strenuous exercise at all - just walking.

A pretty impressive feat!

For any ordinary person this would be a "once-in-a-lifetime" or maybe an "are-you-kidding-I-could-never-do-that" event. The fact that the man doing it has survived four strokes makes it that much more impressive.

In order to raise awareness for symptoms of stroke, Mycle Brandy has  walked across America - last year. Now he's walking from San Diego to Seattle as part of his "Get Off the Couch" campaign to raise awareness for the US National Stroke Association and the OC Stroke Association. In his travels, he also talks to stroke patients and encourages them while they recover - he's a wonderful example of what your life could be post-stroke.

Brandy is now 60 years old, and suffered his first stroke in 1988 - when there effectively wasn't a program available for stroke survivors (most of the developments in stroke therapy have happened in the last handful of years). He crushed his foot in a construction accident in July of 1988, and he was put in a walking cast and returned to work the next day. He noticed some ringing in his ears when he returned to work, and after another check with an ear doctor was given antibiotics for the tinnitus. The drugs didn't solve the problem, and after a few more days - when things had gotten even worse - he saw another doctor. The new doctor gave him different antibiotics and ordered a MRI. Brandy postponed the MRI, but finally gave in and had one.

What was revealed was that he had a full blown, major stroke. Had he known the signs earlier, a diagnosis could have come much quicker. That's what his agenda is now - teaching people what the symptoms of a stroke are. There is a quick, easy way to recognize most strokes - and that is what Brandy is teaching. If you are not familiar with FAST, get with the program!!

Statins lower stroke in young people

Researchers at the Helsinki University Central Hospital ran an interesting experiment, and the results were published yesterday in Neurology. Their study applies directly to me!

They researched 215 young patients -  from 15 to 49, average age 39 years - that had a history of stroke with no identifiable cause (that's me). A relatively large percentage of strokes in young people are indeterminate in origin - some 20-30%. Anyways, they took these stroke survivors and examined their history of statin use post-stroke.

The most commonly prescribed statin was simvistatin, but it appeared as though all statins worked about the same. One third of the patients received a statin sometime after their stroke.

The result they were looking for were follow on strokes, MI's, arterial occlusions, and the like (including death). The outcome of the research was eye-opening:

• 29 people (20%) that didn't use a statin post-stroke suffered one of these outcomes.
• 4 people (11%) had an event after discontinuation of a statin.
• 0 people on continuous statin use had an event.

The people that were on a statin generally had some condition (non stroke related) that had them on it in the first place. They tended to have higher baseline LDL's (133mg/dl) than people that were never on a statin to manage LDL (101mg/dl). So the thinking is that people could benefit from a statin regardless of their initial LDL levels - these drugs do more than just lower LDL. They also do things like change inflammation response, stabilize plaques, among other effects.

Since the experiment was the only one to ever look at this particular population, and only this population, it's undetermined whether young people that have identifiable stroke causation would benefit from statin therapy.
For me, though, it seems quite apparent that the current regimen that I'm on is probably the right one for now .. eliminate whatever stroke risk factors you can and keep your lipid profile as good as possible.

It seems that we know more and more every day about this topic, and things will probably change, but for now I'm comfortable with what I'm doing...

Niacin study

I read a study this morning that is a bit concerning. It's from the US National Heart, Lung, and Blood Institute (NHLBI) and it explained that it was stopping their AIM-HIGH trial of extended release niacin (Niaspan) because the results so far were futile.

One of the causes of a stroke is a clot in the arteries of the brain. One of the potential outcomes of this study was to determine just what effect niacin had on the actual outcomes (stroke and heart attack) on their patients. The study determined after a short while that the outcomes were insignificant and not very different from a placebo.

There were a couple of issues with this study that are significant, though. First, LDL levels in the patients included were already well managed - in the range of 40-80 mg/dl, but they suffered from low HDL and high triglyceride levels. They were using various statins to maintain the low LDL level, so the niacin was introduced to primarily combat the HDL/triglyceride issues. So some of the thinking is that, once your LDL levels have been brought down to low levels, the HDL/triglyceride levels don't matter. This is something I'd like to talk to my cardiologist about.

The second, more important issue for me was the revelation that in their follow-up period after the study was cancelled (32 months), there were 28 strokes (1.6%) in the niacin group vs 12 strokes (0.7%) in the control group - statistically double the number (note that 9 of the niacin group strokes happened after niacin was discontinued). So my worry is that there may be a link between niacin and stroke (or even the discontinuation of niacin and stroke)!

I've been on a regimen of 2000mg/day of niacin (the regular, full-flush version) since 2006, the reason being to try and raise my HDL levels - which it does quite nicely. Levels before niacin were 31mg/dl, and now they are at 50mg/dl. LDL is controlled by a very small dose of Crestor (5mg/day) and remain about 50mg/dl as well.

There are some long term benefits (5-10 years) of niacin therapy, so I'm in it for the long-haul and won't change anything yet. I will keep on top of this, though, and see where this study (or lack thereof) leads...