Saturday, June 27, 2015

Saturday News

Contents of This Week Saturday News June 27th / 2015
Solitude is a state of seclusion or isolation, i.e., lack of contact with people. It may stem from bad relationships, loss of loved ones, deliberate choice, infectious disease, mental disorders, neurological disorders or circumstances of employment or situation (see castaway). Short-term solitude is often valued as a time when one may work, think or rest without being disturbed. It may be desired for the sake of privacy. A distinction has been made between solitude and loneliness. In this sense, these two words refer, respectively, to the joy and the pain of being alone. A longer definition comes from Wikipedia.
                   -- Transforming Solitude: Trevor Weltman at TEDxUofM
                   -- Two Solitudes Meet - Swimmers (With English Subtitles)
                   -- 7k Early Morning Jog in Sveitsi Forest
                   -- Fall Canoeing in Algonquin: Boot Lake
                   -- Whitewater Canoeing - Petawawa River, Algonquin Park
                   -- Kayak Solitude
                   -- Pogo 6.50 (21’) "Solitude"
                   -- Catrike 700. The Fastest Production Recumbent Trike in the World.
                   -- Snowshoes And Solitude (2014) - (Documentary)
    Saturday News | Future Topic
    Jul-Aug/2015  | Summer Break 2015 (articles ordered by date)

    Definition: Solitude

    Solitude From Wikipedia, the free encyclopedia

    Solitude by Frederic Leig
          a) This summer holidays, July thru August, I will take a little bit of relax and reduced published every week Stroke Survivors Tattler.  See Laid-Back Admin: Reduced Summer Holidays for details. This article, Definition/Video Solitude, is mostly for me but useful for, at least some people, that is Stroke Survivors.
          b) For me it is long distance exercise e.g. swimming laps -- your mind is in a different space, like solitude, and you can concentrate for think about anything, very important to the trivial. Meanwhile, your physical body is on automatic - kick, stroke, breath, flip turn, ..., again,... BTW after my “stroke”, my stroke/kick/... is just a lot slower but good exercise anyway and my thoughts go from ridiculous to sublime.

    Solitude is a state of seclusion or isolation, i.e., lack of contact with people. It may stem from bad relationships, loss of loved ones, deliberate choice, infectious disease, mental disorders, neurological disorders or circumstances of employment or situation (see castaway).

    Short-term solitude is often valued as a time when one may work, think or rest without being disturbed. It may be desired for the sake of privacy.

    A distinction has been made between solitude and loneliness. In this sense, these two words refer, respectively, to the joy and the pain of being alone.

    Health Effects

    Symptoms from complete isolation, called sensory deprivation, often include anxiety, sensory illusions, or even distortions of time and perception. However, this is the case when there is no stimulation of the sensory systems at all, and not only lack of contact with people. Thus, by having other things to keep one's mind busy, this is avoided.

    Still, long-term solitude is often seen as undesirable, causing loneliness or reclusion resulting from inability to establish relationships. Furthermore, it might even lead to clinical depression. However, for some people, solitude is not depressing. Still others (e.g. monks) regard long-term solitude as a means of spiritual enlightenment. Indeed, marooned people have been left in solitude for years without any report of psychological symptoms afterwards.

    Enforced loneliness (solitary confinement) has been a punishment method throughout history. It is often considered a form of torture. In contrast, some psychological conditions (such as schizophrenia and schizoid personality disorder) are strongly linked to a tendency to seek solitude. In animal experiments, solitude has been shown to cause psychosis.

    Video: Solitude

    SSTattler: I used as a adult for exercise & enjoyment and after my stroke, I can do it, but just slower and usually with absolutely Solitude!

    Transforming Solitude: Trevor Weltman at TEDxUofM

    Published on May 1, 2012

    Trevor Weltman is an undergraduate in Asian Studies. A fluent speaker of Mandarin and a student of Hindi, he has traveled and lived extensively in China and India. Most importantly, Trevor is a certified meditation instructor who—in line with his teacher's belief that spirituality be made available to all those who seek it regardless of class, caste, color, or creed—teaches meditation for free.

    Standard YouTube License @ TED

    Headline Blog: Solitude

    Definition: Blog (noun). Add new material to or regularly update to a blog. (Origin 1990s: blog shortening of weblog)


    Pamela Hsieh
    Rehab Revolution
    27 April 2010

    I've been thinking about what makes me such a strange case in what we'll call the history of stroke rehab. I don't presume to claim to be superspecial, because that's arrogant and would probably step on the feet of those who've been on this boat and prevailed much more impressively than I have. But anyway, whenever I step foot back into a medical setting for people like me, say, back at my old rehab facilities or hospitals, I always feel strangely detached.

    It's a detachment probably spurred by the number of years that have passed since my injury. While I'll never forget having lived this, the freshness of the memory of being in the hospital and being completely dependent on medical staff and my friends and family fades a little every day. So if anyone following this blog ever feels that I don't address that initial stage after injury enough so, I deeply apologize. This is for anyone who needs to overcome a tremendous life setback, no matter at what point, but the greatest improvements always come the quickest -- shortly after onset. And that's when the blow hits you hardest, when your heart is heaviest. It's the most obvious time to feel the pain of such a sudden change, and I would like to be sensitive to that. The rehab journey often is a very solitary one, but it's more widespread than people like to think. Think of it like a clear night sky -- the stars are separate but numerous, each with its unique ability to shine.

    Home Alone: Solitude Might be Dangerous
             for Stroke Patients

    Jeff Porter
    Stroke of Faith
    Thursday, January 29, 2015

    I can see lots of reasons that it might be true that, as one study finds, male stroke victims are at a greater risk of premature death when living alone:
    ▶ Excess mortality was found among 36 percent of the patients living alone, as opposed to 17 percent of those with partners who died within 12 years after a stroke. The gap was also heavier among men at 44 percent to 14 percent. 
    ▶ "Among the conceivable causes are that people who live alone lead less healthy lives, are less prone to take their medication and tend to wait longer before going to the emergency room," Dr. Redfors said, in a news release. "For the healthy controls, excess mortality was also greater among men, particularly those living alone."
    Now, does that mean single men need to find someone now? I'm not sure about that. But it would make sense to designate someone to act on your behalf if needed, in addition to the cautions the news release cites.

    See the original article:


    Steven H. Cornelius
    Music and Stroke
    Posted on May 27, 2012

    During my week at Mass General and the following three at Spaulding Rehabilitation Hospital I had many visitors. I enjoyed my friends’ company and looked forward to their visits, but had trouble understanding why they came.

    I was content with solitude, even told Sharan not to come every day.

    She and my friends were wiser than I. Only recently have I begun to understand how their compassion healed.

    They reeled me in and brought me back from the abyss.

    See the original article:

    Eclectic Stuff

    Definition: Eclectic(noun) a person who derives ideas, style, or taste from a broad and diverse range of sources


    Amy Shissler
    My Cerebellar Stroke Recovery
    April 15, 2015

    I was blown away by this article and wanted to share.  (Credit to Barb, I read this because you liked it on Facebook)

    The norm sure as hell ain’t always better, or even good. At all.

    See: Why the World Needs The Mentally Different.

    See the original article:

    Exercise as a Treatment Following Stroke

    Bill Yates
    Brain Posts
    Posted 20th February 2014

    Exercise appears to be therapeutic in treatment of a variety of medical conditions.

    However, the relative magnitude of the effect of exercise is less well documented.

    Comparing the magnitude of the therapeutic effect of exercise with that of common drug interventions can be quite informative.

    Such comparisons provide insight into the relative value of exercise and the role of exercise in comprehensive treatment planning.

    Huseyin Naci and John Ioannidis recently published a study of the comparative effectiveness of exercise in the British Medical Journal.

    A Stroke Turned Me into a Lizard

    Rebecca Dutton
    Home After a Stroke
    June 16, 2015

    I used to be a warm-blooded mammal who could regulate her body temperature - sweating when hot and generating body heat when cold.  A stroke turned me into a cold-blooded lizard whose body temperature is controlled by my environment.  There are many centers that control body temperature so I will never know what is out of whack (e.g. the hypothalamus in the brain that monitors body temperature, epinephrine excreted by the adrenal gland that increases body heat, etc.).

    In late May and early June temperatures fluctuated between 40 degrees (F) at night to 80 degrees during the day.  This is not normal spring weather for New Jersey.  If I forgot to switch from air conditioning (AC) to heat at bed time I would wake up shivering.  I was covered by an extra blanket, but the cold air around my head was enough to lower my body temperature.  When I got up to turn on the heat, my house was 62 degrees.  My Scottish ancestors lived 700 miles from the Artic Circle so I used to have a body that was genetically engineered for cold weather.  When it got to 80 degrees my body overreacted on the hemiplegic (paralyzed) side.  Sweat started pouring from my temple on the hemiplegic side of my face, but not on the sound side.  I wiped off the sweat repeatedly so people would not see sweat streaming down my face.  My hemiplegic foot became red and hot.  It was scary to know my body could not cope with these drastic 24 hour fluctuations.

    Bottom Line: Poor temperature control is like fatigue - an invisible deficit I have to manage.

    See the original article:

    The Relationship Between Surgical Procedures
             and Blood Clots

    Joyce Hoffman
    The Tales of a Stroke Patient
    Jun 21, 2015

    Wake-up time. If you're going to have surgery in the near or distant future, please read this post. As common, a little history first.

    Blood clot
    Blood clots are a solemn reminder of just how fragile the human body is. Blood clots usually appear in your legs and are called deep vein thrombosis (DVT), the most common type of blood clot after surgery. They typically remain in the legs, but can break free and begin to move through the blood stream, like to the lungs or brain, known as an embolism. I had two blood clot experiences as a stroke survivor, and with both, the hospital kept me for a week each time. You might think that doctors and nurses are obsessed by blood clots, but this event is serious business. And the obsession is valid.

    Blood clots can lead to a stroke, another name for an embolism that travels to the brain. Strokes can result in long-term disabilities including slurred speech, an inability to speak, one-sided weakness, and facial drooping, for example.

    Pulmonary embolism
    A pulmonary embolism means one clot landed up in your lungs, causing possible pain and severe shortness of breath, resulting in death for 30%.

    Clots are often associated with surgery. The reason is, the person is lying still during the procedure and potentially for many hours post-surgery. (Blood clots, as mentioned in my blog, can also form when an person is motionless for long periods of time, such as during airplane ride a long car trip.

    Making Sense of Things

    Sas Freeman
    June 21, 2015

    5o shades
    Firstly I would love to say a huge thank you to all my lovely Twitter friends, for their kind thoughts and messages whilst I’ve been in hospital, I really appreciate them. I’ve missed you all. I’m home now, as Nick mentioned, but due to much switching of medications, I’d be fibbing if I said I was feeling a lot better. Sometimes I think I do, then I try and stand in one position and I still experience the same bad symptoms as before. That said we are getting there. I’ve had a clever device fitted which tells my cardiologist, what the heart is doing when I experience these episodes. My meds have increased by 12 extra tablets a day so now it is such a huge quantity four times a day, remembering those with stroke brain is a task in itself  back to notes everywhere and as they keep changing you can imagine the muddle we get into, you have to laugh!

    Returning to the heading, should I be asking instead ‘ can anyone make sense of these recurring setbacks?’ Pre stroke day’s I used to be one of those people always on the go, juggling several things at once and never tiring always fitting in something else.

    Interview with Dr. Garnet Cummings
             on 630 Ched Edmonton

    Ramon Florendo
    Life After a Stroke
    Published on Jun 2, 2015

    Dr. Garnet Cummings interviewed by Bruce Bowie of 630 Ched about Brain Injury and the upcoming Brain injury Awareness Kick Off Breakfast.

    Standard YouTube License @ Brain Care

    See the original article:

    Dummy! Or, Stupid is as Stupid Does

    Tim Seefeldt
    Brain Food Cafe for the Mind
    Posted June 23, 2015

    Brain buzz or no brain buzz, I can be a first class fool. And, sadly, I can’t blame it on sizzling my melon when I stroked out.

    Last week I was cut off while driving.

    “Idiot!” I shouted to myself in the car as I hammered on the horn. “Where do these people learn to drive?”

    A day or two later, I cut somebody off. I figured it out when their horn sounded an attack. They went with a long first trumpet then followed with a series of short bursts. It sounded to me like; “Idiot! Where did you learn to drive?”

    “Jerk,” I thought. “He must have been speeding. Where’d she come from, anyway? I bet they changed lanes. Where do these people learn to drive?”

    It was only later that I pondered my reactions. What did I mean when I thought “these people?” I didn’t see the driver in either case. Man, woman, young, old, race, I had no clue. Did I have an unfortunate stereotype of what a bad driver looks like? My pondering made me uncomfortable, so I shelved it.

    Weekly Columnists

    Definition: Columnist |ˈkäləmnist| (noun). A blogger or a journalist contributing regularly to a blog or newspaper

    Musing: The 18 Habits of Highly Creative People

    Dean Reinke
    Deans’ Stroke Musing
    Wednesday, January 28, 2015

    If we are going to solve the stroke medical problem WE are going to have to be incredibly creative. Does your doctor fall into these categories at all? Is your doctor a visionary or a caretaker? See the link The 18 Habits of Highly Creative People.

    While there’s no “typical” creative type, there are some tell-tale characteristics and behaviors of highly creative people. Here are 18 things they do differently.

    1.    They daydream.
    2.    They observe everything.
    3.    They work the hours that work for them.
    4.    They take time for solitude.
    5.    They turn life’s obstacles around.
    6.    They seek out new experiences.
    7.    They “fail up.”
    8.    They ask the big questions.
    9.    They people-watch.
    10.  They take risks.
    11.  They view all of life as an opportunity for self-expression.
    12.  They follow their true passions.
    13.  They get out of their own heads.
    14.  They lose track of the time.
    15.  They surround themselves with beauty.
    16.  They connect the dots.
    17.  They constantly shake things up.
    18.  They make time for mindfulness.

    Fully fleshed out at the link.

    See the original article:

    Sunday Stroke Survival: Courage? Retrospect!?

    Jo Murphey
    The Murphey Saga
    Wednesday, June 24, 2015

    I was told I was very courageous a couple of days ago. My first thought was me! Courageous?? Funny, I don't think or feel that way. I'm down right miserable and terrified at times. I'm more like the Cowardly Lion from the Wizard of Oz.

    I'm just getting by hopping troubles like a frog hops from water lily to water lily to keep from getting all wet. I actually had to stop and think what was I doing that could be considered courageous.

    In the past few years I've had quite a few life altering events. My father's rapid onset dementia...what could be more challenging or heart breaking for a child? Granted I'm no little child on the outside, but deep inside, I still am. My stroke taking away half my body and my voice. Relearning how to do everything again or adapting ways to do 88% of what I used to do. My husband who was told by many doctors over the past thirteen years, "Any time now" finally reached the point of truly any time now. How I am still his caregiver.

    Any one of these things could rock anybody's life off the tracks, but all at one time span of a year is insane. But yet I do realize that it can and does. And, it's happening to more than just me. I mean really, if I was the only one singled out to face all of this in the whole world... but statistically that would be like one person hitting the mega billion dollar just doesn't happen. So somewhere out there is a family who is suffering the same life altering events or worse.

    Caregiver: Then Bob Falls Under The Porch

    The Pink House On The Corner
    Thursday, June 18, 2015

    The other night, I was talking on the phone with Bob's uncle and I was sitting on the back porch/wheelchair ramp. We were talking about the fiasco that Bob's "Celebration of Life" became after one of Bob's relatives acted out in a completely childish manner. I won't go into details, except to say that there has been a lot of strife in that family for many years and I would have hoped that, on this solemn occasion, certain people would have kept their mouths shut and paid a bit of respect to Bob's memory and the people he loved. Unfortunately, that did not happen.

    Anyway, I was talking on the phone with Bob's uncle, when I happened to glance down and notice that the little white bronze heart that contains some of Bob's ashes and that I now wear around my neck was gone!  So, I'm freaking out, checking the folds of Bob's t-shirt (which I am wearing) looking for the bronze heart and Chris (who had shown up while I was on the phone and sat down next to me) is looking at me curiously and I hold the empty chain up that is still around my neck and her mouth drops open and she whispers "Check your bra!"

    So I'm reaching down to check my bra when I see, out of the corner of my eye, a little whitish thing roll onto the porch deck and plop right through the space between the floor boards and fall under the porch.

    But I'm thinking that that's not the little bronze heart because whatever that was, was too small. And, to my relief, I find the little heart nestled inside my bra but to my horror the plug at the hole on the top of heart is missing and the thing is empty.

    Now I'm really freaking out because Bob is gone. He fell right out. And the thing I saw roll on the porch deck must've been him, the tiny container that contained his ashes.

    Tadpole Update: Reported to June 26th

    John C. Anderson
    Stroke Survivors Tattler
    Rails to Trails Tour (aka RTT)
    Albuquerque, New Mexico
    Decpina, North Carolina
    and back
    (June 1st to September 29th)

    Date           | Start           ✔︎ = DONE
    3) June 11-17  | Denver, CO
                   | CHATFIELD STATE PARK -- June 11-14            
                   | CHERRY CREEK STATE PARK -- June 14-18         
                   | ✔︎ The Clear Creek Trail - 20 miles
                   | ✔︎ The Platte River Trail - 28 miles
                   | ✔︎ The Little Dry Creek Trail - 10 miles
                   | ✔︎ The Cherry Creek Trail - 40 miles
                   | ✔︎ The High Line Canal Trail - 71 miles
                   | ✔︎ The C-470 East Trail - 15.7 miles
                   | ✔︎ Ralston Creek Trail - 13.7 miles
    4) June 18  | Ft. Kearny, NE                                
                   | ✔︎ The Cottonmill to Fort Kearny Trail - 17 miles
    5) June 19-27  | Ashland, NE                                   
                   | ✔︎ The Homestead Trail - 40 miles
                   | ✔︎ Omaha's Big Papio Trail - 10 miles
                   | ✔︎ The Keystone Trail - 15 miles
                   | ✔︎ The MoPac Trail - 21.7 miles
                   | ✔︎ Nebraska's Oak Creek Trail - 13 miles

    Jun 22, 2015 - "Rails to Trails Tour"

    We drive to Ashland NE where my bother Gene Z has Lake Cabin. Beautiful here sitting by lake! Today is RV cleaning inside, wash the truck, restock supplies. Tomorrow we ride The MoPac Trail!

    Attitude is 90% of life, think positive! "Fins Up"

    -- Dan Zimmerman

    Jester: Mental Fitness Evaluation

    Jackie Poff
    Stroke Survivors Tattler
    This test is to ascertain your mental state now. If you get one right you are doing ok, if you get none right you better go for counseling. (I'll meet you there.)

    There are 4 test questions. Don’t miss one.

    1. Giraffe Test - How do you put a giraffe into a refrigerator? Stop and think about it and decide on your answer before you scroll down.

    The correct answer: Open the refrigerator, put in the giraffe, and close the door. This question tests whether you tend to do simple things in an overly complicated way.

    2. Elephant Test - How do you put an elephant into a refrigerator?

    Did you say, Open the refrigerator, put in the elephant, and close the refrigerator? WrongAnswer.

    Correct Answer: Open the refrigerator, take out the giraffe, put in the elephant and close the door. This tests your ability to think through the repercussions of your previous actions.

    3. Lion King Test - The Lion King is hosting an Animal Conference. All the animals attend... except one. Which animal does not attend?

    Correct Answer: The Elephant. The elephant is in the refrigerator. You just put him in there. This tests your memory. Okay, even if you did not answer the first three questions correctly, you still have one more chance to show your true abilities.

    4. Crocodile Test - There is a river you must cross but it is used by crocodiles, and you do not have a boat. How do you manage it?

    TED Talks - David Epstein:
             Are Athletes Really Getting Faster, Better, Stronger?

    Published on Apr 29, 2014

    SSTattler: A bit wrinkles for stroke survivors statistic ... :-)

    When you look at sporting achievements over the last decades, it seems like humans have gotten faster, better and stronger in nearly every way. Yet as David Epstein points out in this delightfully counter-intuitive talk, we might want to lay off the self-congratulation. Many factors are at play in shattering athletic records, and the development of our natural talents is just one of them.

    Standard YouTube License @ TED

    Rick Mercer Report: Rick and Paralympic Sailing

    Published on Nov 20, 2013

    Rick goes to Halifax, NS to spend a day on the water with Paralympic champion Paul Tingley to learn the ins and outs of Paralympic sailing.

    Standard YouTube License @ Rick Mercer Report

    Laid-Back Admin: Reduced Summer Holidays

    John C. Anderson
    Stroke Survivors Tattler
    This is the fourth year of Summer Holidays (July - August) for Stroke Survivors Tattler - thanks specially for the readers - approx. 500 readers / week! See the graph Users.

    Both myself the Coder - John A., and CEO - Dr. Beagle C. will reduced the weekly articles and especially we will only for the summer drop:
    • Headline Saturday News and Wikipedia/Video
    • Headline Blog & Eclectic Stuff from Guest Bloggers, and,
    • Weekly Columists from Guest Bloggers/ TED/ RickM/ etc...,
    • Daily Comics.

    Dr. Beagle C. Cranium
    Stroke Survivors Tattler
    We will include the articles and update approximate every week+/-:
    • Important Articles from stroke / TBI (Traumatic Brain Injury) / ...,
    • Personal stuff  - sailing, bicycle, Higgs Boson, navel-gazing etc...,
    • Tadpole Update - from DanTrikeMan & CatGilbert, AZ to Cary, NC to Gilbert, AZ (round trip ending approx. Sept 29),
    • Laid-Back Admin - if necessary,
    • Sometimes we are late in the summer but we do things like: "metal-on-the-pedal" (tadpole), camping wherever,... but we will be back soon.
    Note: There is no “Saturday News”, no "Contents for This Week...” and just articles ordered by date during the summer.

    Thanks for the good fourth year SSTattler & cheers,
    John A. & Dr. Beagle C. 

    Daily Comics

    For Better and For Worse
    Lynn Johnston

    Canada Family Events
    Scott Adams

    Dilbert Office Events

    Edmonton Journal
    Malcolm Mayes
    Politics Views from Canada

    Garry Trudeau

    Politics Views from USA

    ** I tried to get low or free price at the people for the images for the cartoons. It was too high for Stroke Survivors Tattler i.e. we are not a regular newspaper and our budget is very, very low. Fortunately, you will have to do only 1-click more to see the cartoon image, it is legit and it is free using and


    Saturday, June 20, 2015

    Saturday News

    Contents of This Week Saturday News June 20th / 2015
          Cerebral Cavernous Malformation - Cavernous hemangioma, also called cavernous angioma, or cavernoma (often when referring to presence in the brain), is a type of blood vessel malformation or hemangioma, where a collection of dilated blood vessels form a tumor. Because of this malformation, blood flow through the cavities, or caverns, is slow. Additionally, the cells that form the vessels do not form the necessary junctions with surrounding cells and the structural support from the smooth muscle is hindered causing leakage into the surrounding tissue. It is the leakage of blood, known as a hemorrhage from these vessels that causes a variety of symptoms known to be associated with this disease. A longer definition comes from Wikipedia.
      Saturday News | Future Topic
      Jun/27/2015   | Solitude
      Jul-Aug/2015  | Summer Break 2015 (articles ordered by date)

      Definition: Cavernous Hemangioma
               (aka Cavernous Angioma, or Cavernoma)

      Cavernous Hemangioma From Wikipedia,
            the free encyclopedia

      Cerebral Cavernous Malformation
      Cavernous hemangioma, also called cavernous angioma, or cavernoma (often when referring to presence in the brain), is a type of blood vessel malformation or hemangioma, where a collection of dilated blood vessels form a tumor. Because of this malformation, blood flow through the cavities, or caverns, is slow. Additionally, the cells that form the vessels do not form the necessary junctions with surrounding cells and the structural support from the smooth muscle is hindered causing leakage into the surrounding tissue. It is the leakage of blood, known as a hemorrhage from these vessels that causes a variety of symptoms known to be associated with this disease.


      Cavernous hemangiomas can arise nearly anywhere in the body where there are blood vessels and are considered to be benign neoplasms (noncancerous tumors). They are often described as raspberry like because of the bubble-like caverns. Unlike the capillary hemangiomas, they can be disfiguring and do not tend to regress. Most cases of cavernomas are considered congenital, that is present from birth; however, cavernous malformations can develop over the course of a lifetime. While there is no definitive cause, research shows that genetic mutations result in the onset of this malformation.


      Video: Cavernous Hemangioma
               (aka Cavernous Angioma, or Cavernoma)

      Angioma Alliance Founder: Connie Lee

      Published on Oct 22, 2012

      From the "Joy in Our Town" program interview with Tanya Street

      Courtesy of WTPC, Virginia Beach

      Standard YouTube License @ AngiomaAlliance

      Headline Blog: Cavernous Hemangioma
               (aka Cavernous Angioma, or Cavernoma)

      Definition: Blog (noun). Add new material to or regularly update to a blog. (Origin 1990s: blog shortening of weblog)

      The Problem With a Rare Disease Diagnosis

      Thankful for Every Day!
      Monday, May 18, 2015

      SSTattler: Re-published May 23/2015 The Problem With a Rare Disease Diagnosis in Stroke Survivors Tattler.

      Six months after the birth of my first child, I was diagnosed with a cavernous angioma. I never expected to have my life changed in so many ways. While cavernous angiomas are actually very common (one in every 500-600 people have them). They are still considered "rare" because most people that have them never know it as only about 30% of those with angiomas become symptomatic. Common onset symptoms can vary but often include:  seizures, stroke symptoms, hemorrhages, and headaches. Typically, a diagnosis only comes after an individual becomes symptomatic and has an MRI. The most common age for a diagnosis is in a person's 20-30's even though most people are born with their angiomas. Some people only have one (sporadic) or others have many/multiples (genetic).  By definition, cavernous angiomas, are abnormal clusters of blood vessels often resembling a raspberry configuration. The problem is that the lining of the blood vessels in cavernous angiomas are grossly dilated/defective, they have thin, weak walls that can leak or bleed easily. When these cavernous angiomas are in the brain and spinal cord and they bleed... They often become problematic.

      Well, that's exactly what happened to me. When mine starred to bleed after my first pregnancy, I became symptomatic (dizzy, spacey, feeling weird, eyes not working right, etc). At first, I thought it was due to sleep deprivation, hormones, and everything new moms go through. By 6 months postpartum, I went to the doctors. Of course, they were sure I had postpartum depression. I insisted otherwise. No, I was not depressed but something was wrong. Eventually, I got an MRI which showed a 2.2cm cavernous angioma in the insular cortex....incidental finding....ugh!

      The FAST Campaign Is Not Working

      Rebecca Dutton
      Home After a Stroke
      June 25, 2013

      The American Stroke Association (ASA) and the National Stroke Association (NSA) try to get people who are having a stroke to the emergency room quickly with their FAST campaign. FAST stands for face (sagging on one side), arm (weakness in one arm), speech (impaired), and time lost is brain lost. However, these are warning signs for strokes that affect the front of the brain. The ASA estimates that 25% of strokes cut off the blood supply to the back of the brain where vision, balance, and coordination are controlled. One type of a stroke that affects the back of the brain is a lacunar stroke. A lacunar stroke is caused by small blood vessels in the brainstem that get clogged by cholesterol. The brainstem includes the bridge to the cerebellum that controls balance and coordination. A second type of stroke that affects the back of the brain is a brainstem cavernous angioma. An angioma is a cluster of abnormally dilated blood vessels that begin to bleed. A third type of stroke that affects the back of the brain is stenosis of the vertebral artery. This artery runs up the inside of the neck vertebrae and provides blood for the brainstem. When stenosis narrows the vertebral artery people are more vulnerable to having a stroke when a chiropractor bends their neck. Think of a kink in a garden hose that stops the water from flowing.

      Spreading Awareness About Cavernous Angiomas

      Thankful for Every Day!
      Monday, January 16, 2012

      Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.

      GIANT Sigh of Relief!

      Thankful for Every Day!
      Sunday, March 27, 2011

      I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!

      Attitude is Everything!

      Thankful for Every Day!
      Sunday, September 1, 2013

      Well maybe not everything, but one should never discount the power of a positive attitude. I whole heartedly believe that a big part of my miraculous recovery is attributable to my relentless positive attitude and my intentional focus on all things that are positive. Some people, especially negative people, like to discount attitude as a contributing factor in any survivor's success or lack of such in their own recovery. It's probably because they don't want to admit that their "bad"/negative attitude is preventing and/or limiting their own recovery. In reality, they should be looking for ways to foster a more positive attitude that can only possibly aid in recovery. Attitude is something that you can control and change. With so many unknowns involved in brain injury and recovery, it seems crazy to deny the possibility that bringing your most positive thoughts and attitude could aid in your recovery. I've certainly never heard of anyone ever blaming a positive attitude for a failed or unsuccessful recovery. Some survivors also don't want to or are afraid of taking ownership of or responsibility for their recovery. I think that too is a mistake. Own it, drive it, force it, will it, demand it, make it happen. If what you are doing isn't working, change it, get new therapists, try new therapies, change your thoughts.Whatever you do, stay positive and think YOU CAN change it, unless you are happy and satisfied where you are at. Many doctors and therapists are pessimistic...there is NO room for that negativity in your recovery. When you give up, start buying into the restrictions and limitations negative people place on you, or stop trying with all your heart, it's OVER!! By no means am I saying, that ALL anyone needs is a good attitude and positive thinking to recover. There are many factors(age, area damaged both how much and what part/parts, what type of damage, inherent survivor personality, motivation, ability, prior physical condition, other medical issues, medications, on and on) involved aside from one's attitude. I'm basically saying that while some things are a given and not changeable like your age. Your attitude is one factor that you CAN control and it can help or hurt you.

      If you or anyone you know is struggling with a negative attitude especially while faced with a health crisis....look for help asap. There is tons of research on the benefits of positive thinking and an optimistic attitude. There are also tons of ways to change your thought patterns.

      Eclectic Stuff

      Definition: Eclectic(noun) a person who derives ideas, style, or taste from a broad and diverse range of sources

      Just to Let You All Know...     Last Blog by Nick

      Sas Freeman
      June 15, 2015

      Two Strokes Not Out
      Just to let you all know that Sas has been allowed home now, providing she rests and is with someone, me!! She is much better but still not feeling up to reading and is very sleepy.

      She is having to take many new and additional tablets, so hopefully once the body adjusts, she will begin to feel better.  Sas has to go back to the hospital though tomorrow for an unpleasant test so tomorrow won’t be a day of feeling well at all.

      She thanks everyone for their kind wishes and hopes to be back on twitter and blogging very soon.

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