“You’ve got to get up every morning with a smile on your face.”  Carole King from Beautiful

August 15, 2014 will mark 9 years since I had the AVM/stroke.  While I don’t celebrate this day, I do acknowledge it as life-changing (and I drink champagne).  Every year for the August post, I update people on where I am and the major events of the year.  Some time ago we had several people over and somebody asked if we could choose any profession now, what would it be.  Mine was to be a professional baseball player.  Not just because I love baseball, but I see it as something where people contribute based on their skills and also they are part of a team.  I like that a lot.  I would say that’s been a big part of the year, how everything we do and are is a part of something.

We got a different car.  I share this because it’s an important part of the journey.  We had a Mercedes and I loved it.  We got it before I had the stroke and it was more my car.  Since I had the stroke, Matt has been doing all the driving.  We had lots of miles on the car and it was time to get a different car.  Matt got an Acura and he loves it!  The biggest difference for me is this — the Mercedes had passenger controls and the Acura does not.  Now when someone else is in the passenger side and makes changes, I have to make my own adjustments when I get in.  Isn’t that like life?  I had one of the first Acuras, so I have great memories.  I am also aware of how much things have changed.  Isn’t that like life also?

A lot of people want to know what is the status of my sense of taste.  For the most part, I taste everything.  I did not have one of those ah-ah moments where I could suddenly taste everything.   It has been gradual.  The sense of taste I have is not as strong as it was before the stroke.  I also think it’s more memory than anything else.  I can taste things I see.  (Spices that I can’t see, I don’t taste.)  I’ve said that I drink jasmine tea and I can smell the jasmine more than taste it.  It invokes the sense of smell along with the taste.  If I can’t see it or taste it, maybe I can smell it.  That smell becomes a bonus!  That’s an example of things I try to do these days.  Matt has been getting me fresh flowers every week (and sometimes I smell them).  What a treat to see them every day!
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Matt and I had our 20th wedding anniversary.  We went away for a few days.  I have one of those traditional walkers which folds up compactly, so I can take it when we travel.  I had a great birthday party with a magician in November.  (As Matt says my life is kind of magical!)   We had a food truck to provide meals for guests.  What a great idea to minimize what we do.  It’s a great idea for food for anyone with any kind of restriction.  (Actually it’s a great idea generally!)  We continue to be active at the Magic Theatre in San Francisco.  I did a post on imagination.  A lot of activities are around this idea of imagination.  It’s why I like all kinds of art, theatre and reading.  It’s a great opportunity to use my mind and imagine what things are like.  These things are also important to me as the concept of communicating in various ways is an important part of any process.  This is an important part of the journey.  It has us look at things in a whole new light.  I think we value speech as the most important part of communication, but other things play an important part in all this.  We have seen a few Shakespeare plays which have been performed in a bar.  I see many people I know and I get to see a play performed.  It’s a great experience and one of those things where I can enjoy multiple things at once.  They are also heaps of fun and I think having fun is an important part of the whole process.   Yes, it’s a lot of work, might as well have fun!  I remember when I first had the stroke somebody said to me “you’ll just find new ways to do things.”  So I have and included ways to have fun doing so.   I have an issue with stamina so we got me a wheelchair so I can keep going.  I use it occasionally but it’s a very different perspective seeing things from a wheelchair!  We went to a TED conference this year.  I thought it was a great experience to hear so many speakers who were concise and poignant.
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As Carole King says “You’re gonna find, yes you will, that you’re beautiful as you feel!”

Sometime ago I did a post on memory, this time I want to focus on memories or things as they were. The Facebook application has a concept called throw back. It’s mostly used for pictures taken a while ago. At first I dismissed that whole idea but now I see the value of it. It’s not denial or wishful thinking, I see it as acknowledgment. I think it’s important to remember things (good and bad) as they were. That’s acknowledgement. But realistically it’s mostly good things we remember. Did you ever listen to the lyrics from the theme song that was used by Barbra Streisand in the movie The Way We Were? One of the lines is “memories may be beautiful and yet what’s too painful to remember, we simply to choose to forget.” I would put that in the category of priceless. I’ve said before that there are no pictures of me when I first had the stroke or was at the hospital. (That’s a memory that I don’t need to keep!)

Occasionally I remember my dreams. Recently I had a dream where I did not like the ending. The ending was not negative (actually it was a happy ending) but not realistic like those flying car dreams. I used my memory to change the outcome. It was about shoes and you know I love shoes! I just wanted it to end differently.

As a stroke survivor, I totally get that I will not be the same as I was before the stroke. I think it’s important to acknowledge things. Osiris says “You’re not the same individual you were a year ago, a month ago, or a week ago. You are always growing. Experiences don’t stop. That’s life.” I know the whole thing for me is a fine line about living in the past but I think it’s important to recognize the things that have occurred and have shaped me. I think it’s a great thing to have memories of the past. My heart goes out to people with Alzheimer’s or dementia and what they remember. I value the memories I have. It helps to acknowledge things and people.

I had my stroke when I was 49. I think that’s young to have a stroke. The source of my stroke was an AVM, mine was congenital. I had it at birth. When I think about it having an AVM (before it burst) for 49 years, I think that’s amazing! That’s one of the the main reasons I try to remember and acknowledge things from the past. The past becomes an important part of the future. What if it isn’t a good memory? I have a friend who says “forget the memory but remember the lesson”. Matt had saved the cards that I received when I had the stroke and gave them to my mother who made me a scrap book. I keep that book and just re-looked at it all. How fabulous to know that we are loved so much. That is a great memory!

In the TV show ‘Rizzoli and Isles’ there was a perfect example recently. Last year one of the characters (Lee Thompson Young who played Barry Frost) died in real life. They had filmed the whole season so they did a funeral and a tribute on the second episode of this season (Season 5).  Angie Harmon who plays his partner on the show (Jane Rizzoli) did the eulogy at his funeral. She said “death may have taken Barry, but it can’t take our memories of him, those wonderful and perfect and beautiful memories. Those, thank God, are ours to keep.”

As the song says “memories, light the corners of my mind”

I’m sure many people have said “in the power of your imagination …” I once did a group with a woman in San Francisco and this was one of her phrases. Now that I am a stroke survivor, it means so much more. Merriam-Webster dictionary has three definitions of imagination

  • the ability to imagine things that are not real: the ability to form a picture in your mind of something that you have not seen or experienced
  • the ability to think of new things
  • something that only exists or happens in your mind

This is a big deal to me now as I use my imagination. The late John F. Kennedy stated that he was paraphrasing George Bernard Shaw when he delivered the line from the Serpent in Shaw’s play Back To Methuselah. “You see things; and you say, ‘Why?’ But I dream things that never were; and I say, ‘Why not?’”. We went to a reading of a new play for the Magic Theater. The actors sat around a table and read their parts. I thought it was a great experience. Since there was no scenery, we had to concentrate on the words and use our imagination about the setting. How fabulous is that? It’s a big reason why I like to read (and figured a way to read after the stroke)! I can imagine what the characters look like and create a setting. We went to a talk at Stanford recently and one of the speakers (Steve Palumbi) said “you don’t really care about the plot until you care about the characters”.

One of the things I really like about imagination is the concept that if we don’t see the benefits of what we imagined, we can always have or create a new imagination. There is a television version of the Roger and Hammerstein’s musical Cinderella and they have a song called “In my own little corner”. The words that are relevant here are “in my own little corner, in my own little chair, I can be whatever I want to be.” Twenty-five years ago when we moved into this house, I was concerned because the house was close to a freeway. I had never lived close to a freeway. I had lived in a house across the street from the ocean and I loved hearing the waves. That was a great memory for me. So I imagined the freeway sounds to be the constant hum of the ocean. The sounds of the freeway while I am in the house have never bothered me. Recently we had a few warm nights and we slept with the windows open and I could hear the freeway …. or was it the ocean?

Here’s another way imagination has been an important part of the stroke journey. I’ve mentioned before that with the stroke I lost my sense of smell and taste. It is slowly coming back (but not as strong as it was before). Over the past few years a woman has done some cooking for us among other things. She is a fabulous cook. She is aware of my past. Her presentation of food is amazing. I can see things, so she makes things look great on the plate to compensate for the lack of taste. I can imagine what things taste like. There is a picture going around about coloring that says “she couldn’t keep her colors inside the lines so, she drew new lines.” I would guess most people get the concept of drawing new lines (regardless of our current situation).

Remember the earlier quote? “in the power of your imagination”

May is Stroke Awareness Month and lately I have received quite a bit of information about women and strokes. Here’s some of the info I’ve received from the American Heart/American Stroke Association and from the National Stroke Association.

Each year, more women than men have strokes. Stroke kills twice as many women as breast cancer every year. However, women in a recent survey believed breast cancer is five times more prevalent than stroke and 40% of women said they were only somewhat or not at all concerned about experiencing a stroke in their life. Here’s some statistics from a recent survey.

  • In the United States approximately 55,000 more women than men have a stroke each year
  • Only 27% of women could name more than two of the primary stroke symptoms
  • Seven out of 10 women said they are not aware they are more likely than men to have a stroke, and were not at all or only somewhat knowledgeable about risk factors.
  • African-American women suffer a higher number of strokes than Caucasian women, yet African-American women were less likely to correctly identify what causes a stroke compared to Caucasian women.
  • Stroke is a leading cause of death for Hispanic women but Hispanic women were significantly less aware of stroke symptoms than Caucasian women.

The survey was commissioned by Healthy Women (the nation’s leading independent health information source for women) in partnership with the National Stroke Association and the American College of Emergency Physicians. Conducted by Harris Interactive in 2010, support for the survey was provided by Genentech Inc., a wholly-owned member of the Roche group.

For the first time in history Prevention Magazine and American Stroke Association have published stroke risk factors for women. There is a good reason why they are being singled out. More than half of the 795,000 strokes that happen in the United States annually occur in women. In addition, a recent study in the journal Neurology found that women’s quality of life post-stroke is worse than men’s. Our hormones as well as other gender-specific factors put a higher risk of this potentially fatal blockage in the brain. These are 6 stroke risk factors all women should know.

  • Preeclampsia. This condition is a significant risk factor during and after pregnancy. The guidelines recommend that women with chronic hypertension or take low-dose aspirin from the 12th week of gestation until delivery. If you consume less than 600 mg daily of calcium, you should consider taking calcium supplements. If you have high blood pressure during pregnancy, speak to your doctor about ways to control it. There are antihypertensive drugs that can be used safely during pregnancy, and there are also lifestyle changes that could help. If you do develop preeclampsia, you are at an increased risk of future hypertension and stroke. This makes it especially important to keep up with follow-up visits to your primary care physician.
  • Oral Contraception. Taking birth control pills puts a woman at risk for stroke. This is why the guidelines recommend having blood pressure monitored before starting to take birth control pills. And if you smoke, forget about it. “We know that even younger women who take birth control pills and smoke have a very elevated risk of both heart attack and stroke,” says a Prevention advisor who is chairman of the department of cardiovascular medicine at The Cleveland Clinic. He states that women who smoke are at an increased risk getting a prescription for birth control pills.
  • Hormone Replacement Therapy (HRT). Research shows that HRT has been linked to cardiovascular disease risk. The guidelines reiterate that these therapies should not be used to prevent stroke.
  • Migraine with Aura. Women are four times more likely to get migraines than men. Migraine with aura is defined as a typical migraine headache plus the presence of visual disturbance, unilateral tingling, or pins and needles sensation; or numbness, unilateral weakness, or speech difficulty that might precede the headache. Tell your doctor about your migraines if you haven’t already, since there is an association between higher migraine frequency and stroke risk. While evidence is lacking about whether decreasing migraine frequency could decrease stroke risk, it may not be a bad idea to treat them, the guidelines say.
  • Atrial Fibrillation (AF). This is the most common heart rhythm problem and a major modifiable risk factor for stroke. In fact, AF increases the risk of stroke 4- to 5-fold. As women get older, our risk for atrial fibrillation increases. See your doctor if you feel your heart racing, skipping beats, or doing anything out of the ordinary. Controlling AF can help lower your stroke risk.
  • High Blood Pressure. “The link between high blood pressure and stroke is one of the most profound in all of medicine,” say many doctors. If you lower your blood pressure, you lower your risk of stroke. And the best way to do that: “Live a healthy lifestyle that includes exercise and good nutrition,” says the author of the guidelines, which were published in the journal Stroke.

Women should be empowered to take charge of their health so they not only know how to reduce their risks, but so they can recognize the signs of a stroke (remember FAST). One way people can improve their odds with a stroke is to learn about the risks and how lifestyle changes and medicines can lower the stroke risk.

 

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