I'm having one of "those days" because I wish there was something to do about my stroke.
Right now, I'd have an operation on my brain if there could be some improvement in my speech, my arm, my leg, any one of the above. Maybe some neurosurgeon could close the hole in my brain with stitches. But I take the blood thinner called Coumadin, and there's the likelihood of complications like significant bleeding into my brain, especially with stitches. Alas, I have a hole in my head. Please. No LOLs.
In reality, no doctor in his right mind would want to try "it," i.e. close the hole in my brain caused by dead brain cells that couldn't regenerate. Cells in the brain just don't do that once they die. The bleeding causes them to die and I had a hemorrhagic stroke when the clot caused my blood vessel to burst. My stroke anniversary just passed. I had a stroke in April 2009 and I'm tired from it. On the surface, I'm generally pleasing and happy. Below the surface, not so much. Still. Even now.
I'm angry though it never shows, at least to the general public. The bitter side says, "Why me?" The euphoric side says, "Why me?" also. Weren't you listening? I already told you. I'm having one of those days where floods of memories come back to me even though I attempt to shun them.
A memory of my mother appears right before my eyes. She had a stroke, too, but there were signs years before. Everyone--my mother, her family, her friends--ignored them. She fell every so often when she would become anxious over one thing or another. She probably had a transient ischemic attack (TIA) which is like a mini stroke, producing like symptoms of a stroke: weaknesses on one side of the body, blurry vision, trouble talking. About 1 in 3 people who have a TIA ultimately have a stroke. Then she had the big one, a name that should be only reserved for California earthquakes. But that is what a stroke amounts to--an earthquake in your brain. I feel happier now, for the moment, that I just invented a new phrase for strokes. But then again, happier is relative.
I fell every so often, too, walking along the corridor or on the street. But I'm not a complainer; neither was my mother. So we didn't do anything about our falling. I attributed my mother's falling to anxiety; I attributed mine to clumsiness. My mother instilled a fear of doctors in me that was so strong, I screamed when the doctor would touch me in appropriate places so we didn't take any action on our falling. Or maybe it was the shoes. My mother had enormous bunions. So do I. But I believe the falling was a precursor of the stroke that damaged our lives forever. My mother was in her eighties, but I was 61, the new 41.
That's enough for memories. I don't want to spend any more time on them. I can't; I shouldn't. I'll am in the present now. I looked, examined, and researched many ideas--stem cell therapy to make me, even more, mostly whole once again (all the doctors that I researched were fraudulently going after people's money), the Walkaide and the Bioness to enable people walk more efficiently (I wasn't a candidate because of my hyper-extended knee), slings that reduce subluxation in my shoulder (I got one from my "friend" on Facebook, but after three months, I didn't improve any further). I just got the name of a doc who does Hyperbaric Oxygen Therapy. I'll try that next.
The definition of crazy is when you do the same thing over and over, expecting different results. Maybe I'm crazy. Or maybe I'm hopeful. I'm always searching, and I always reach dead ends. But I still try to find magic in the medical community. Perhaps I'll blow a hole in that definition of "crazy" yet.
The weather is heating up, and summer is about 30 days away. But all the seasons are alike for me, and just the temperatures are different. The days are consumed by the stroke, searching to find the silver bullet that will make it all, or most of it, or part of it, go away. I'll take any improvment. My friend calls me Pollyanna, a character in a 1913 novel that turned into a popular term for someone with an optimistic outlook. I say, "How can I NOT be." Hope and wishes are both traits of Pollyanna.
Today, I'm going to do research on Amazon for pomegranate and chocolate. That's to take my mind off of the stroke, but only momentarily. I am obsessed with the stroke and who it's going to hit next. "On average, one American dies from stroke every 4 minutes," said by the Centers for Disease Control, (CDC), is a fact. How can I not be obsessed, I scream silently to myself.
The Tales of a Stroke Patient
I was well and then I wasn't. In one second, my life changed forever. I type with only one, functional hand because one of my hands is paralyzed. I am a stroke survivor, attempting to re-gain my dignity, self-esteem, and empowerment that I once had before. I'll take you on the expedition, but be prepared for a bumpy ride. Contact info: Joyce Hoffman / hcwriter@gmail.com
About Me
- Joyce Hoffman
- I was employed at Cozen O'Connor, an international law firm. I worked at the largest office in Philadelphia when I had my stroke on April 8, 2009, in the middle of the night. It took me a year to realize I could never go back there. It also took that long to realize I was disabled. I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative.
May 18, 2013
Apr 29, 2013
An Interlude in Promotion, aka It's What I Do Best
at
11:39 PM
Let's see. What should I promote now? Hmmm. I've got an idea--my book, of course.
Kindle (Amazon) version at http://www.amazon.com/The-Tales-Stroke-Patient-ebook/dp/B009J9QC64/ref=sr_1_2?ie=UTF8&qid=1349018197&sr=8-2&keywords=the+tales+of+a+stroke+Patient
“The
Tales of a Stroke Patient” is making light out of darkness….
Strokes,
also called cerebrovascular accidents (CVA's), happen to around 15 million people
annually around the world. I am one of the lucky ones because I am a stroke
survivor.
Stroke holds no discrimination. It happens to babies, young people, old folks. Thus, it could happen to you.
I’ve
written a tell-all book called “The Tales of a Stroke Patient,” about the questionable
care I received in the rehabilitation hospital and the nursing home, and the
way I was stripped of my dignity, self esteem, and empowerment.
But
I’m back now, somewhat recovered, to tell you the real story and to spread
stroke awareness around the globe.
So what are you waiting for?
You
can buy the paperback and e-book versions online at http://bookstore.xlibris.com/Products/SKU-0115053049/The-Tales-of-a-Stroke-Patient.aspx
or
Kindle (Amazon) version at http://www.amazon.com/The-Tales-Stroke-Patient-ebook/dp/B009J9QC64/ref=sr_1_2?ie=UTF8&qid=1349018197&sr=8-2&keywords=the+tales+of+a+stroke+Patient
Apr 15, 2013
Hey! Can Fast Foods in Abundance Really Cause a Stroke? No Kidding!
at
11:40 AM
Here's news from across the pond. For all my foreign readers, "across the pond" is a standing idiom, or expression, between the United States and Great Britain. We laugh harder because we won the American Revolutionary War lasting from 1775 to 1783. For Britain, that's a touchy subject--still. But back to the news.
Late last year, the American Academy of Neurology published a study about an increasing number of younger people having strokes. I don't want you to get all nuts, my dear reader. But while the stroke rate has declined among all age groups, the average age of stroke survivors--and non-survivors--is also diminishing. And do you know what that means? The elderly aren't the only ones who could have strokes.
The researchers, Dr. Brett Kissela from the University of Cincinnati and his collaborators, conducted a study of a sample population that examined the number of new stroke cases at three intervals: only 12.9 percent of all new cases of stroke in 1993 were found to be in people under 55, in 1999, using the same under-55 criteria, this percentage elevated to 13.3 percent, and 2005, 18.6 percent of all new stroke cases were found in the under-55 crowd, representing about a 50 percent increase over the first figure.
A spokesman for the Stroke Association, Dr. Clare Walton, said, "With the number of younger people having strokes increasing, greater strain will be placed on health services to support them with their recovery." She went on to say that stroke risk could be reduced by healthy lifestyle changes.
According to the National Health Service in Great Britain, this rise in strokes among younger people is partially due to "poor diet and excessive junk food consumption." Dr. Kissella remarked that risk factors such as obesity (calories) leading to high cholesterol (fat), high blood pressure (salt), and/or diabetes (sugar) are also factors.
Thus, enter the fast food. Let's take a look at the list presented by a men's online health magazine.
McDonald’s Big Breakfast with Large Biscuit, Hotcakes, Margarine, and Syrup :
1,370 calories, 64.5 g fat (21.5 g saturated), 2,335 mg sodium, 49 g sugar
Wow! Two-thirds the calories you should eat in a day.
KFC Half Spicy Crispy Chicken Meal with Macaroni and Cheese, Potato Wedges, and Biscuit:
1,610 calories, 98 g fat (25.5 g saturated), 4,340 mg sodium
This meal has close to 85 percent of your day’s calories and more sodium and fat than you should eat in a day's worth.
Burger King Large Triple Whopper with Cheese Value Meal with Fries and Coke:
2,110 calories, 104 g fat (35.5 g saturated, 2 g trans), 2,270 mg sodium
Eat one a week for a year and you’ll be toting on more than 30 pounds.
Quiznos Tuna Melt (Large) with Cheetos:
1,620 calories, 111 g fat (25 g saturated, 1.5 g trans), 2,070 mg sodium
A mountain of mayonnaise doesn't help.
Wendy's Dave's Hot 'n Juicy 3/4 lb. Triple with Bacon with Small Fries and Small Coke :
1,540 calories, 83 g fat (33 g saturated, 4 g trans), 2,370 mg sodium
See the problem yet?
And this from the ever-popular Subway where you can lose weight, according to Subway's health-conscious spokesman, Jared:
The 6" Double Meatball Marinara with Cheese sandwich is a fat-laden choice better-known for its healthy choices and its weight-conscious spokesperson, Jared.
860 calories, 42 g fat, (18 g saturated fat), 2,480 mg sodium.
And the occasionally advertised foot long? Multiply all the numbers by 2. Yikes!
I had most of those items before the stroke, but only, at most, once a year. Now, since my stroke, I wouldn't eat them because, by my observation, a heavy person with a stroke tends to sit around more than a thin person with a stroke. Repeat: that's only my perspective. There must be someone out there who's heavy and gets around. Anyone? Anyone? That is to say, I don't know anyone who's, um, more than pleasantly plump (that's PC, right?) who goes to the gym or takes a walk often and had a stroke.
So what do you do for meals if you had a stroke and want to avoid the fast food? The antioxidants found in many fruits, vegetables, and "superfoods;" like blueberries, quinoa, and red pepper, the omega-3 fatty acids found in fish, and the nutrients found in walnuts, almonds, and various other nuts, are all great options for keeping you as healthy as possible.
But if clotting is in your genes, as it was in mine, there's nothing much you can do to prevent it. The stroke just may happen sooner to a junk food addict. Or the stroke wouldn't happen at all if you're lucky. With low cholesterol, low blood pressure, and no diabetes, I shouldn't have been prone to a stroke. But like I said, it was already fated.
This post is dedicated to my old buddy because his mother had a stroke. He didn't even want a copy of my new book, "The Tales of a Stroke Patient." Strokes suck, he said. He loved his mother and, with no quality of life left in her, the family literally pulled the plug. And that should be, my dear friend, your impetus to eating healthier foods. Capish? (Of course, you capish).
Late last year, the American Academy of Neurology published a study about an increasing number of younger people having strokes. I don't want you to get all nuts, my dear reader. But while the stroke rate has declined among all age groups, the average age of stroke survivors--and non-survivors--is also diminishing. And do you know what that means? The elderly aren't the only ones who could have strokes.
The researchers, Dr. Brett Kissela from the University of Cincinnati and his collaborators, conducted a study of a sample population that examined the number of new stroke cases at three intervals: only 12.9 percent of all new cases of stroke in 1993 were found to be in people under 55, in 1999, using the same under-55 criteria, this percentage elevated to 13.3 percent, and 2005, 18.6 percent of all new stroke cases were found in the under-55 crowd, representing about a 50 percent increase over the first figure.
A spokesman for the Stroke Association, Dr. Clare Walton, said, "With the number of younger people having strokes increasing, greater strain will be placed on health services to support them with their recovery." She went on to say that stroke risk could be reduced by healthy lifestyle changes.
According to the National Health Service in Great Britain, this rise in strokes among younger people is partially due to "poor diet and excessive junk food consumption." Dr. Kissella remarked that risk factors such as obesity (calories) leading to high cholesterol (fat), high blood pressure (salt), and/or diabetes (sugar) are also factors.
Thus, enter the fast food. Let's take a look at the list presented by a men's online health magazine.
McDonald’s Big Breakfast with Large Biscuit, Hotcakes, Margarine, and Syrup :
1,370 calories, 64.5 g fat (21.5 g saturated), 2,335 mg sodium, 49 g sugar
Wow! Two-thirds the calories you should eat in a day.
KFC Half Spicy Crispy Chicken Meal with Macaroni and Cheese, Potato Wedges, and Biscuit:
1,610 calories, 98 g fat (25.5 g saturated), 4,340 mg sodium
This meal has close to 85 percent of your day’s calories and more sodium and fat than you should eat in a day's worth.
Burger King Large Triple Whopper with Cheese Value Meal with Fries and Coke:
2,110 calories, 104 g fat (35.5 g saturated, 2 g trans), 2,270 mg sodium
Eat one a week for a year and you’ll be toting on more than 30 pounds.
Quiznos Tuna Melt (Large) with Cheetos:
1,620 calories, 111 g fat (25 g saturated, 1.5 g trans), 2,070 mg sodium
A mountain of mayonnaise doesn't help.
Wendy's Dave's Hot 'n Juicy 3/4 lb. Triple with Bacon with Small Fries and Small Coke :
1,540 calories, 83 g fat (33 g saturated, 4 g trans), 2,370 mg sodium
See the problem yet?
And this from the ever-popular Subway where you can lose weight, according to Subway's health-conscious spokesman, Jared:
The 6" Double Meatball Marinara with Cheese sandwich is a fat-laden choice better-known for its healthy choices and its weight-conscious spokesperson, Jared.
860 calories, 42 g fat, (18 g saturated fat), 2,480 mg sodium.
And the occasionally advertised foot long? Multiply all the numbers by 2. Yikes!
I had most of those items before the stroke, but only, at most, once a year. Now, since my stroke, I wouldn't eat them because, by my observation, a heavy person with a stroke tends to sit around more than a thin person with a stroke. Repeat: that's only my perspective. There must be someone out there who's heavy and gets around. Anyone? Anyone? That is to say, I don't know anyone who's, um, more than pleasantly plump (that's PC, right?) who goes to the gym or takes a walk often and had a stroke.
So what do you do for meals if you had a stroke and want to avoid the fast food? The antioxidants found in many fruits, vegetables, and "superfoods;" like blueberries, quinoa, and red pepper, the omega-3 fatty acids found in fish, and the nutrients found in walnuts, almonds, and various other nuts, are all great options for keeping you as healthy as possible.
But if clotting is in your genes, as it was in mine, there's nothing much you can do to prevent it. The stroke just may happen sooner to a junk food addict. Or the stroke wouldn't happen at all if you're lucky. With low cholesterol, low blood pressure, and no diabetes, I shouldn't have been prone to a stroke. But like I said, it was already fated.
This post is dedicated to my old buddy because his mother had a stroke. He didn't even want a copy of my new book, "The Tales of a Stroke Patient." Strokes suck, he said. He loved his mother and, with no quality of life left in her, the family literally pulled the plug. And that should be, my dear friend, your impetus to eating healthier foods. Capish? (Of course, you capish).
Apr 6, 2013
Up Close and Personal, aka Babies and Strokes, Part 2
at
5:28 PM
I didn't plan to write what came into my lap. Then I had to tell the story.
The
subjects in this post are two same-sex individuals who wanted a baby. I’ll name
them Paula and Melissa to protect their identity. The baby’s name, protecting
her identity, too, is Ali. The birth mother? I’ll call Sue. They weren’t from
Illinois, and I’ll use it to further protect their future. The hospital also
wasn’t in Baltimore. But make no mistake about this story. It’s about an infant
who had a stroke. The post “Babies and Strokes,” published December 9, 2012, inspired
them to write me an email.
Paula
and Melissa had talked about kids for a long time, but in the past 7 years, they
never really did anything about it. Then at the end of January, 2012, they
received a phone call from Paula’s cousin saying he had a baby for her. He went
on and told them about a coworker who had a pregnant sister. The sister already
had a 3-year-old who she was barely maintaining. So the baby was up for
grabs. They Paula and Melissa called the birth mother and the story panned out.
The child was up for adoption. Sue was relieved, but even more so, Paula and
Melissa were thrilled.
They spoke on the phone at first, and Sue told them all about herself—a tumultuous relationship
with her family and ex-boyfriend, using cocaine the previous summer, drinking
excessively, having sex with loads of men. She also told Paula and Melissa that
she drank a “handle” a day and used cocaine through the first trimester. Once
she found out she was pregnant, she stopped drinking and drug use. She was 6 months pregnant and she had no prenatal care. But they couldn’t completely
trust a drug addict. Would you?
An attorney advised them
to abandon the adoption, given Sue’s background, but it was too late in their
opinion. They made a commitment to each other, and to Sue. They drove to
Baltimore Presidents’ Day weekend from Illinois and spent a weekend with Sue
and her 3-year-old who was smart, and Sue admitted to using drugs during
that pregnancy as well.
So during that
weekend, they bought Sue some prenatal vitamins, clothes and shoes (she only had
flip flops and it was February). It seemed Sue didn’t have the best upbringing,
from Sue’s point of view, and she was starting to turn her life around.
They returned to Illinois,
had a baby shower (it turns out a girl was to be born), and painted the
nursery. Paula continued to talk with Sue every day, gleaning everything
about her and how she was feeling, her family, her daughter, and the men who might
be the biological father. Paula and Melissa got very familiar with Sue as did
she with them. At times, Paula got nervous about the harm that was caused
by drinking and drug use in the first trimester, but Sue always made her feel
better by saying she used drugs only a few times. And Paula didn’t do research
either because she figured what’s done has been done. Paula and Melissa wanted
the baby that badly.
Sue had already gone
to the doctor several times and their baby was right on track for a May 1, 2012,
due date. On March 29, Paula spoke with Sue several times, and Sue told her she
was feeling very physically uncomfortable. The fourth time Paula spoke to
her that night, she heard Sue say crudely, “Holy shit. There is blood and all
kinds of shit coming out of me.”
Paula advised her to
call her doctor immediately or call the ambulance. Instead, Sue called her
mother, and then her friend, then Paula again to say she was going to the
hospital. Paula called Melissa and told her they needed to get to Baltimore ASAP.
The fifth phone call Paula received was from Sue, telling Paula she was at the
hospital and they were admitting her. The sixth was from Sue’s friend
telling Paula that Sue lost a lot of blood and had a placental abruption, and that
she has to have an emergency C-section.
Paula’s first thought
was of her soon-to-be daughter. Twenty-eight minutes flew by and then she heard
the news. The baby was born at 10:49 pm. Sue was fine and so was the baby, but
Paula wasn’t convinced. Tears poured down Paula’s face as she packed a bag. She
knew this was a premature birth due to a placental abruption, and the little
research she did said that this was a possibility when cocaine was used during
the first trimester. Paula and Melissa were on their way to Baltimore.
Once they got to the
hospital, they ran in as fast as they could to the maternity ward, only to hear
Sue was sleeping and the nurse said they could not see the baby without her. Paula
and Melissa told the staff they were the adoptive moms and asked if they could
get any information. They were told to wait in the waiting room. Paula’s stepmom
who was in Atlantic City immediately came to Baltimore to give Paula and
Melissa support.
The hours passed so
slowly, like an eternity, and they still could not see their baby. They used
the time to their advantage and drove around securing lawyers and getting
paperwork so they could get information about their daughter. Paula and
Melissa returned to the hospital, only to have the staff reject the paperwork. Sue
was up by this time and finally, 20 hours after coming into this world, they met
their daughter.
Their hearts raced as
they—Sue, Paula, and Melissa—all walked into the NICU. Ali was in an
incubator wearing nothing but a hat and diaper and she had tubes and wires
coming out of her because she was a preemie. Her arm had been bandaged. The
nurse refused to tell them anything more because of the HIPPA laws. They pleaded
with the nurse and explained that they were her moms, but all the nurse would
tell them is that they needed to provide different paperwork.
Ali was a beautiful baby. She weighed 5 pounds 8 ounces and was 19
inches long with a full head of black hair. Paula and Melissa were allowed a 10-minute visit, but because of Ali’s condition, they were not allowed to
touch her. They left the NICU and took Sue back to her room. We found out from
Sue’s friend that Ali wasn’t on a bottle, she couldn’t maintain her body
temperature, and she had some breathing issues.
Paula and Melissa
wanted more answers. They asked if this was a result of the drugs that had been
taken early in the pregnancy. The staff didn’t know. Finally, they were able to
hold her for the first time 2 days after she was born. She was so little and
sweet. Once again, the tears poured down their faces as they kissed her cheeks.
She seemed so fragile. They had no idea the fight this infant had just gone
through and the odds she had overcome just to meet them, her two moms.
Over the next few
days, they would go to the hospital multiple times and hold their baby. They were only allowed to have her out of the
incubator for 20 to 30 minutes at a time.
One of the nurses
actually called Paula and Melissa on her own time and said, “This call is
completely off the record, but I feel so bad for you girls. I want to answer
any questions you may have about your daughter. I can’t say anything about Sue
but can answer any questions you have about Ali.”
The first question
they asked was, “Is she in any pain?” and then they asked, “What in the hell
happened?”
She explained that Sue
had a placental abruption, which they knew from Sue’s friend. She wouldn’t say
what caused it. Then she told them that she lost a lot of blood and that Ali
was deprived of oxygen briefly and almost didn’t make it. She explained
that she was underweight and that they did not bottle feed her at first because
of the early drug use. Her stomach might not be properly formed, so it is a
safety precaution that they do with all premature babies. She said Ali couldn’t
maintain her own body temperature, but hopefully, she would grow out of it. She
said that she passed all of her screenings and Ali looked good and she was definitely
a fighter. They were so thankful for this angel nurse. They could finally
breathe a little easier knowing that their daughter, for the most part, seemed
healthy. They had hope that she would be just fine. And Sue was released from
the hospital.
They finally had all
of their paperwork in place, and the nurses were able to speak with them freely
about Ali’s condition. Her breathing was still sporadic and she was eating
every couple of hours. Paula and Melissa told the nurses that they knew of the
drug use during the first trimester and they were shocked. The nurses were told
that Paula and Melissa knew nothing about it, so it was confusion all around.
They visited the NICU
many times a day. There were 8 babies in there and all of them had exposure to
drugs in utero. They felt confident that their little infant girl would be just
fine. By day 12, Ali was out of the incubator, maintaining her own body
temperature, breathing regularly, and
ready to be released. They still had one more hurdle: Sue had not signed all of
the papers so they could start the process to get Ali out of Maryland and home
to Illinois. They couldn’t find Sue anywhere. Her friend said that she
was drunk—again, but even though they felt sorry for Sue, they had to focus all
their attention on their daughter.
After Sue was
located, they were finally able to convince her to cooperate. She showed up at
the hospital, high on 5 Vicoden and probably still drunk. She signed the papers
and the hospital released Ali, Paula, and Melissa, but not before the last test.
They did notice a small cyst on her brain. The doctor said it was nothing to
worry about and to “just get a follow-up ultrasound in 6 months or so.”
They finally got Ali
home to their friends and family, and her nursery awaited her. Paula and
Melissa took her to her regular checkups and she had a clean bill of health. At
5 months, they remembered they needed to
get that cyst looked at. The results came back and they were advised there
was a small change in the matter in her brain and that it would be best to get
a MRI, but still nothing to worry about. Their pediatrician assured them
that Ali was developing just fine and that it was just a safety
precaution.
On November 17, 2012,
they had the MRI and on November 23, they had an appointment with the
neurologist.
She entered the room
and said, “So no matter what I tell you today, Ali is your daughter and you
will always love her no matter what information I give you.”
She handed them a
picture of the MRI and said, “Your daughter has had a stroke, probably in utero
or shortly after birth.” Their collective chests tightened up. They
asked the doctor how this was possible; she was a 6-month-old baby. Babies
don’t have strokes. Old people have strokes and, on rare occasion, very unlucky
younger adults. Babies and strokes don’t go together, they thought.
The neurologist
examined Ali and said she had a significant stroke but yet hardly any symptoms.
Paula and Melissa said she had severe drooling. At times, saliva just poured
out of her mouth. They went through 8 to 10 bibs a day. Also, there was severe
choking, multiple times a day, that kept Ali sleeping in their room for
the first 9 months of her life. Both of these symptoms were initially misdiagnosed
as acid reflux.
The neurologist went
on to say that another symptom was the fact that she had trouble controlling
her body temperature at birth. She also pointed out that at times, Ali had
a crooked smile and her cheek slightly drooped. They stared at their daughter
and they couldn’t see it. She also pointed out that Ali favored her left hand.
Paula said that was nothing. She was a lefty, too. The neurologist
disagreed. She said Ali was using her left hand because of the stroke. The
reality began to take hold.
She passed them to
another neurologist who she described as one of the best in the country. Fortunately, he was at Children’s Hospital
nearby. She referred them to a county program so they could get help before Ali
fell behind and her symptoms became more noticeable.
She also told them
that Ali was at a higher risk for seizures and that they needed to pay close
attention to her if she starts to stare, looking like she was in a trance. They
were to call an ambulance immediately, at least for the first seizure. Paula
and Melissa wondered if they missed noticing a seizure. They were distraught.
On January 22, 2013, they
met their new neurologist. He told them that they were fortunate because Ali’s
MRI did not match the data that was before him. He said maybe by the age of
7 or so, if she hasn’t had any seizures, she could show normal development.
He said that sometimes, cognitive impairments wouldn’t show up until the age of 6.
Paula asked this
doctor, even though it was partially answered, if Ali would grow up “normal.” He told them that all babies are different and
all strokes are different. Babies have plasticity that adults don’t have so she
may be able, optimistically speaking, to make her weak side strong, and she may
be able to bypass the dead area of her brain by rerouting some of the learning.
Ali was assigned to a
physical therapist who said she tested at a 10-month-old level. She was
crawling when they were told she wouldn’t. Next came the speech therapist
who told them Ali tested at a 6-month-old level. Her speech and understanding
of speech were delayed. The occupational therapist who tested her said she had fine
motor skills that verified Ali was right on track. They saw a hematologist
who said all of the blood work came back normal.
In an email to me,
Paula said, “We are going to register her for school on her first birthday so
she can start in the fall. She will have one teacher, a teacher’s aide, and
about 7 other kids in her class. We will have home therapists which come to
the house regularly to help teach us various exercises and things to improve
her speech, drooling, limb control, and anything else we need help with.
“We feel like for
everything new we learn, there are a hundred things that we don’t know. We
don’t know what the future holds for us--seizures, no seizures, full recovery,
or partial. We do know that her biological mother was right when she said she
was supposed to have this baby but not keep her. And no matter where Ali’s
journey takes us, Melissa and I are better people because of her.”
Sue’s behavior was
foolish and reckless—the drugs, the alcohol, the sex—just for moments of
selfish indulgements. And Ali? Now, there’s the big question mark. I don’t know
about how Ali would do physically or otherwise. Neither does anyone else.
But I’ll tell you one
thing: Paula and Melissa are intent on doing the best for Ali. Paula’s
stepmother, who is my friend, told me so.
Mar 24, 2013
Stem Cells, Embryonic and Otherwise: The Big Maybe Not
at
12:40 PM
I'm
not taking sides. I'm just reporting the facts.
Right about at the midway point last year (that's 2012, if you just got up from a deep sleep), five English stroke patients were given, in what has been termed a revolutionary new approach, millions of embryonic stem cells in a clinical trial from a 12-week-old aborted fetus. They injected the stem cells into their brains and waited 18 months, after which the stroke survivors saw some improvement in their mobility and speech.
But the researchers, considering the small number of survivors being tested and the lack of a control group for the placebo, expressed some concern that people shouldn't get overly excited about the results.
Dubbed "master cells," the stem cells are regenerative, and that means they have the ability to keep producing--more, and more again.
Michael Hunt, CEO of ReNeuron, the company that supplied the stem cells, said, "The goal is to help patients to live more independently and cut health and social care costs," which makes so much sense to me. (Uh, I think I just chose a side).
On the other side of the fence are the religious crowd who thinks that injecting stem cells from aborted fetuses is just plain wrong. One woman, Philippa Taylor, of the Christian Medical Fellowship, said, "For many, it will be ethically troubling that this treatment involves injecting several million cells from an aborted fetus."
But if the mother decides to abort the fetus, it might as well help a load of somebodies than just wait for trash day to come and haul the fetus away. What are they going to do with the fetus anyway? Use it for compost? (Oh, boy, have I gone too far?)
But the controversy continues: practical vs religious.
So, I wondered, can I achieve the same thing as the five British men? I googled (recently becoming a verb) "stroke stem cell," and variations of that search, and soon I came upon Stem Cell of America (why is stem cell singular?) which purported to have all the answers on stem cell therapy.
The
following is an excerpt from their website:
Does the Stem Cell treatment have any age requirements?
No,
Stem Cell Of America accepts patients of all ages.
Am I eligible for Stem Cell treatment?
There
are many factors in determining whether a patient is a candidate for Fetal Stem
Cell treatment. We test for 14 different criteria, including viral, bacterial,
and fungal infections, as well as viability. Moreover, we use PCR DNA testing,
which is far more sophisticated and expensive than the screening tests
routinely used in the United States for other Stem Cell treatments.
How quickly will I see results after the Stem Cell treatment?
Every
person is of course different. Each of our body’s healing mechanisms work at a
unique pace as they are influenced by many factors. Commonly, significant
positive changes are seen between three to six months post treatment. At times,
these changes can occur in as little as weeks or even days after receiving
treatment.
How many Stem Cell treatments will I need?
After
the first treatment, the Fetal Stem Cells will continue to proliferate and
repair. Some patients choose to receive treatment more than one time to
expedite the healing process. The decision is yours. If you decide to repeat
the treatment, usually a waiting period of 6 months is recommended.
How do the Fetal Stem Cells actually work to bring about healing?
Fetal
Stem Cells are the cellular building blocks of the 220 cell types within the
body. The Fetal Stem Cells used by Stem Cell Of America remain in an
undifferentiated state and therefore are capable of becoming any tissue, organ
or cell type within the body.
Fetal Stem Cells also release Cytokines. Cytokines are cell-derived, hormone-like polypeptides that regulate cellular replication, differentiation, and activation. Cytokines can bring normal cells and tissues to a higher level of function, allowing the body’s own healing mechanisms to partner with the transplanted Fetal Stem Cells for repair and new growth.
What diseases and conditions is the Stem Cell treatment available for?
A
partial list of disease and conditions that Stem Cell of America has successfully
treated includes:
Alzheimer's
Arthritis
Autism
Brain Damage
Cancer
Cerebral Palsy
Diabetes
Epilepsy
Heart Disease
Lung Disease
Lupus
Multiple Sclerosis
Muscular Dystrophy
Parkinson's
Spinal Cord Injury
Stroke
and others
Stroke! It was on the list. So I called the number listed on the website. An amiable person spoke to me about all the positive things that could come about if I got this stem cell therapy from Stem Cell of America, repeating much of the same wording that was on the website.
I was waiting for the ball to drop, and it dropped twice about thirty seconds later, going something like this:
"The cost is $25,000 and the therapy is done in Mexico."
The cost was one thing, but Mexico? Tiajuana, no less, the hotspot for all things bad. But I was getting ahead of myself.
"Let me think about it," I said, and I went directly to my computer to learn more.
First, I emailed the EuroStemCell organization because that's where the idea originated--in Europe. I received this reply (and the parentheses are my comments):
Dear Joyce,
Thank you for your email to EuroStemCell, I’m sorry to hear of your stroke.
EuroStemCell
is not directly involved in research, treatments or clinical trials. We
are an online grouping of people who work in stem cell research (didn't they
say they were not involved in research?), and have set up the website to
provide more information about stem cell research in Europe.
Have you seen our information on 'What diseases and conditions can be treated with stem cells?' You can read it here: http://www.eurostemcell.org/faq/what-diseases-and-conditions-can-be-treated-stem-cells. (The list was somewhat the same as Stem Cell of America). It gives a good overview of what stem cell treatments are currently proven and available.
Stem cell therapies are generally at an early stage of research and development. More work is needed before safe and effective treatments can be made available for a condition such as stroke. You can read more about current research on this condition here:
Our FAQ information for patients about stem cell research and Stroke: http://www.eurostemcell.org/faq/what-stroke-and-can-stem-cells-help
The Stroke Association provides specialist support and information for patients (including on current stroke research): http://www.stroke.org.uk/
Unfortunately we are not able to offer advice on specific treatments or clinics. (There it was!) We recommend that if you are concerned about your condition, you discuss this with your doctor (who guesstimates anyway) and perhaps contact the Stroke Association (who guesstimates, too).
I have also attached a patient handbook on stem cell therapies produced by the International Society for Stem Cell Research. It contains information and advice to help you assess the reliability of any treatment offers you may receive. (They were all pricey).
More information for patients and other language versions of the handbook are available at http://www.closerlookatstemcells.org.
I am
sorry not to be of more immediate help, but I hope this information is of some
use. (It wasn't).
Best wishes,
"Mary"
I continued to research and found this article:
LAS VEGAS -- Dr. Ralph Conti and Alfred Sapse were found guilty on all counts in federal court Wednesday of defrauding patients out of more than $1 million in promising bogus experimental stem cell treatments.
They faced charges for an alleged scheme to defraud people with incurable diseases with a so-called miracle stem cell cure that involved injections of placentas.
Sapse, 86, recruited Conti, 51, a pediatrician, for the scheme. The problem entails his adult patients who prosecutors say were given intoxicating promises. The pledges included cures for multiple sclerosis, cerebral palsy and claims the handicapped could walk again. Instead, prosecutors say Conti delivered infected injections and unproven science.
Conti and Sapse were accused of defrauding patients out of upwards of $1 million with a medical practice that injected people with stem cells from placentas. They faced 24 felony charges for the financial part of the fraud.
Prosecutors say the money paid by the incurable patients went to Sapse's personal accounts and to pay for gambling.
He hired Conti to do the injections on adults. Prosecutors say he did no follow-up with patients, tracked no data and flatly told one patient the so-called treatment wouldn't even work. He also allegedly injected cells he knew had been infected.
This whole treatment could have been stopped five years ago. The I-Team found the U.S. Department of Health and Human Services, the Food and Drug Administration and the Nevada Board of Medical Examiners tried to shut Conti down.
Instead, the board only gave him a public reprimand and a $7,000 fine for not responding to questions.
Conti
and Sapse were each convicted of conspiracy to commit mail fraud and wire
fraud. Conti was convicted of two counts each of mail fraud and wire fraud.
Sapse was convicted of seven counts of mail fraud and 11 counts of wire fraud. They face up to five years in prison on the conspiracy count and up to 20 years on each fraud count. They also face fines up to $250,000 for each count and must forfeit money and property up to $913,748.
Their sentencing is scheduled for Feb. 27.
Then I found this:
Las Vegas, NV (KTNV) -- A local pediatrician convicted of fraud has died.
The Clark County Coroner said Dr. Ralph Conti of Henderson passed away Sunday, but the exact cause of his death is under investigation.
Conti was convicted of mail fraud, wire fraud and conspiracy charges connected to a million-dollar stem cell scheme.
\
He was awaiting sentencing on that conviction.
He was awaiting sentencing on that conviction.
And more.
The following is a script of "Stem Cell Fraud" which aired on Jan. 8, 2012, and was rebroadcast on Aug. 26, 2012. Scott Pelley is the correspondent.
(CBS News) There's no greater desperation than to be told that you, or your child, has a disease for which there is no hope. Many people with incurable illness look forward to the promise of stem cells. Stem cells have the potential to turn into any kind of cell and, in theory, they could repair damaged cells, though, scientists tell us that we are years away from realizing that dream.
There is no stem cell miracle today, so con men have moved in to offer the hope that science cannot. Just look online and you will find hundreds of credible looking websites offering stem cell cures in overseas clinics.
Two years ago we began investigating stem cell charlatans. We worked with patients suffering from incurable diseases, and we discovered con men, posing as doctors, conducting dangerous medical experiments.
Our report started a federal investigation and since that story, we have been digging into the rapidly growing trade in fake stem cell cures. As we reported last January, we've found something even more alarming: illegal stem cell transplants that are dangerous and delivered to your doorstep. They are scams that often bilk the desperate out of their last dollar of savings and their last ounce of hope.
Adam and Brandon Susser are 11-year-old twins. Adam has cerebral palsy, his brain was damaged by a lack of oxygen before he and his brother were born.
Gary Susser: He's confined to a wheelchair. He needs assistance with all his daily living activities from cleanliness to feeding, to clothing.
Gary and Judy Susser have searched for anything that might improve on the judgment handed down by Adam's doctors.
Gary Susser: The sentence of being a quadriplegic, the sentence of being totally blind, the pronouncement by physicians that we should put him away.
Scott Pelley: Those were the things that his regular doctors were telling you?
Gary Susser: Correct. We were being advised literally, "Put him away. He's gonna destroy your life."
So back in 2003, the Sussers took a chance on the theory of stem cells. Adam was three. They brought him to a doctor in Mexico who injected stem cells with no idea whether they would work.
Judy Susser: We both decided that in the severity of his condition that we'd have to try it.
Apparently, there was no harm and no miracle.
Gary Susser: The progress that he made after that was minimal at best and therefore we didn't see any good coming out of it.
Today, people like the Sussers can find hundreds of sophisticated websites offering stem cell treatments for every hopeless disease.
To help us learn the truth about the illicit stem cell industry, the Sussers agreed to work with us in an investigation of one stem cell laboratory. We focused on Stem Tech Labs of Ecuador because it offers cures for cerebral palsy and a long list of 70 incurable diseases.
The website claims a "modern day medical miracle" and says "we are FDA registered," apparent approval from the Food and Drug Administration.
The founder and director of Stem Tech Labs is an Alabama doctor named Dan Ecklund. We've been tracking Dr. Ecklund for months.
[Gary Susser: Hello, is Dan Ecklund there please?]
In October, we asked the Sussers to contact Dr. Ecklund. Ecklund sent them a letter which offered the blind and paralyzed Adam the possibility of an improved level of consciousness, improved ability to see, to speak, to stand and walk. What can stem cells really do today? We asked a scientist who's doing some of the world's most advanced studies in stem cells, Dr. Joanne Kurtzberg.
Dr. Joanne Kurtzberg: I believe stem cells have a lot of promise. But we are way at the infancy. Because real stem cells are very difficult to control as therapy. I personally think we're 10 years away from seeing real cell therapies that are working and are safe, but I do believe it will come.
Dr. Kurtzberg is a physician and the chief scientific officer of a stem cell research program at Duke University. She advises the federal government and she's co-director of this multimillion dollar laboratory which works with stem cells harvested from umbilical cord blood. Dr. Kurtzberg told us there's no evidence yet that stem cells can treat cerebral palsy.
Pelley: Some of the diseases that we see stem cell cures offered for on the Internet include multiple sclerosis.
Kurtzberg: There are no stem cell cures yet for multiple sclerosis.
Pelley: Lou Gehrig's disease?
Kurtzberg: I wish there were, but there are not.
But there's a lot that can be done for Adam Susser, according to Dr. Ecklund who spoke to the Sussers from his lab in Ecuador. Dr. Ecklund's only examination of Adam came by teleconference. Ecklund didn't know we were watching.
Ecklund proposed four treatments costing a total of $20,000. The Sussers asked Ecklund to treat Adam near their Florida home.
Pelley had the cells sent by the highest medical standard. Duke University suggested we use something called a dry shipper, cooled with liquid nitrogen. We sent the dry shipper to Stem Tech. Stem Tech sent the frozen cells to us, and we forwarded them to Joanne Kurtzberg. A computer chip inside our package, verified the cells were properly frozen all the way.
Dr. Kurtzberg analyzed the cells. For comparison, look under the microscope, healthy umbilical cord stem cells look like this. The cells we got from Stem Tech had disintegrated.
Pelley: This could actually do harm?
Kurtzberg: Yes. This could do a great deal of harm.
Remember, the Sussers asked Dr. Ecklund to treat Adam in the U.S. and last winter, he got out of a van to meet Gary Susser at a Florida hotel where Ecklund planned to do the transplant.
We dug into Dr. Ecklund's background and we found things he hadn't told the Sussers. This is the document in which the state of Alabama revoked his medical license in 2005. The State Medical Commission said Dr. Ecklund admitted that he:
-
Prescribed controlled substances to a patient with whom he was having sex
-
Prescribed controlled substances to a patient who he knew was a drug addict
-
And had sexual experiences with young female children
We also tracked down his laboratory in Ecuador, not exactly the state of the art facility claimed in his website.
The hotel room Gary Susser and Dan Ecklund headed for was set up with a number of cameras that were tucked out of sight. Susser excused himself.
Instead, enter Pelley: Dr. Ecklund, I'm Scott Pelley, with "60 Minutes."
Ecklund: Oh, great.
Pelley: We've been working with the Sussers on a story, and I want you to know that we're being recorded. And I wanted to ask you about the treatment that you propose for Adam. What would that be?
Ecklund: The treatment that he asked about was for stem cells. Human stem cells.
Pelley: And you think they're applicable for cerebral palsy?
Ecklund: Yes. I have seen them be effective in cases of cerebral palsy.
Peley: How does that work, exactly?
Ecklund: Well, stem cells contain-- excuse me, here. No one knows exactly. Okay? But stem-- stem cells do contain and give off chemicals which cause other cells to repair themselves.
Pelley: In the letter that you sent the Sussers, you described possible effects for Adam. Which could include improved ability to see, improved ability to speak, improved ability to move arms and legs. You believe those things are possible?
Ecklund: I do.
Pelley: What is your training in stem cells?
Ecklund: My training in stem cells was I studied for about six years going over the literature. And then I started producing stem-- stem cells, in my lab.
Pelley: You're self-educated, self-taught?
Ecklund: Uh-huh (affirm).
Pelley: Have you published any research?
Ecklund: No.
Pelley: Frankly, Dr. Ecklund, you have nothing to base your results on. There's no clinical trial, there's no-- there's no blind study. There are no medical papers published. I would imagine it would make a big difference to the Sussers.
Ecklund: The studies have been done in other countries. These are not published in the United States, because they cannot be published in the United States.
Ecklund told us breakthroughs with stem cells aren't published in scientific journals because of a conspiracy of drug companies and governments that he had trouble defining. That's when we told him we bought cells from his lab.
Pelley: We purchased some stem cells from Stem Tech Labs six months, or so, ago. And had them delivered to Duke University, which did tests on the stem cells. And they determined that the stem cells were dead.
Ecklund: Well, they must not have handled them appropriately, then.
Pelley: You're thinking that you handled them appropriately, but the stem cell laboratories at Duke University did not?
Ecklund: That would be my assumption, yeah.
Pelley: Is this a con, Dr. Ecklund? Putting them in an 11-year-old boy is entirely a different matter. Without any medical studies that have been published in major journals, that have suggested that stem cells have any efficacy in cerebral palsy--
Ecklund: You keep going back to this point. That they're not published in major eth-- in major medical journals. I'm telling you--telling you that they are not going to be published in this country. Because when someone does try to do it, then they have "60 Minutes" come and visit them. And I think that's enough for me, thank you.
We don't know where Dan Ecklund went. (End of report).
I was starting to think that stem cell injections were a bad idea. I researched more, and I came upon this article:
Scottdale, AR--Stem Cells Fraud Scheme in U.S. Leads to Arrests
Four
people were recently indicted on federal charges in the United States for
selling unapproved stem cell treatments and other biological products to
seriously ill patients. The patients were falsely told that the treatments were
approved by the U.S. Food and Drug Administration, according to the indictment.
Francisco Morales, Larry Stowe, Jesus Alberto Ramon and Dr. Vincent Dammai are charged with collecting in excess of $1.5 million from people suffering from Lou Gehrig's disease, Parkinson's, muscular dystrophy and cancer over a period from 2007 to 2010.
Ramon, a licensed midwife and owner of the Maternity Care Clinic in Del Rio, Mexico, allegedly sold the umbilical cords of women giving birth at his clinic to Global Laboratories LLC, in Scottsdale, Ariz., which forwarded them to Dammai, an assistant professor at the University of South Carolina's medical school.
Dammai harvested the stem cells for Global using university facilities. He did this without FDA or university knowledge or approval, the indictment says.
It then alleges that Morales falsely represented to the public that he was a physician licensed to practice medicine in the United States and provided medical advice to individuals regarding the benefits of stem cell treatments. Morales also falsely represented that he operated a medical clinic in Brownsville, Texas, according to the indictment, to convince the public that he specialized in using stem cells to treat incurable diseases. He would then take patients across the border into Mexico to perform the stem cell procedures, the indictment says.
Stowe allegedly ran the companies that marketed and sold the stem cells and other biological products.
The four are facing 39 counts including conspiracy, mail fraud and illegally manufacturing, distributing and selling stem cells and related procedures. Dammai, who has worked at the University of South Carolina since 2001, has been placed on administrative leave pending resolution of the matter.
And more.
Los Angeles--Six residents of Los Angeles, California, are suing South Korean company RNL Bio and associates in a Californian court for alleged fraud. They claim the company convinced them to travel to clinics in South Korea, China or Mexico to donate fat tissue and have stem cells from it re-administered to cure diseases and even reverse ageing.
Stem cells hold great medical promise, but only one treatment is licensed in the US and that is for a rare blood disorder. Others are experimental and offering them commercially is in a legal grey area, subject to investigation, and possible shut-down, by US regulatory authorities. Some companies avoid this risk by touting stem-cell "cures" performed outside the US. RNL Bio calls its fat-tissue stem cells "safe technologies" for treating various disorders.
There have been protests against these treatments for years, but this is the first civil lawsuit for damages, says Paul Knoepfler of the University of California at Davis. It "serves notice to the purveyors of unproven stem-cell treatments" that they may face litigation if they market in the US, says Bernard Siegel of the Genetics Policy Institute, a stem-cell watchdog in Palm Beach, Florida.
And this:
San Diego--Cow stem cell fraudsters sent to jail for almost killing human patients: some patients still support them
Two women in San Diego County are heading to jail after being convicted and sentenced for fraud related to stem cell treatments.The women injected concoctions of bovine stem cells from Germany and DMSO into patients. You can read the details of the original arrest here on the FBI website. According to a Modesto Bee article, Kathleen Ann Helms (aka Catherine Bright-Helms) of Encinitas, CA will spend 18 months in jail and have 18 months of supervised release.
The article says:
City
News Service says a judge told 57-year-old Kathleen Ann Helms that she
endangered people’s lives and nearly killed two.
Helms pretended to be a doctor and treated patients as such. Helms’ nurse, Jacqueline Smith, who pleaded guilty to practicing medicine without a license, will spend a year in jail.
Helms directed the patient to go to a Tijuana hospital to have a peripherally inserted central line put into one of her arms so Helms could give treatments intravenously. The patient agreed to pay $300 for the insertion of the line and $30,000 for the treatment Helms recommended, according to the affidavit.
Another patient was misdiagnosed by Helms as having Lyme Disease when he really had prostate cancer, illustrating just reckless and dangers this situation was.
The criminal case began after patients complained to the California State Medical Board.
OK. Enough already. I had a bad taste in my mouth, metaphorically speaking.
And I'll present one more thing about stem cells, but it's not about humans. Rats injected with stem cells 30 minutes after a stroke had almost normal brain function restored within 2 weeks. The research team from Bolivia said the method has potential in human trials, but not yet. The team from La Paz University Hospital "extracted stem cells from fat and bone marrow, then injected them into the blood vessels of rats shortly after they had suffered an artificially-induced stroke."
Translated, that means stem cell therapies for humans are a long way off. It also means, I was born too soon.
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