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30
Nov

24 years

I’m reading a book thing right now that will be considered a continuing education course when I’m finished with it and take the online test.  Here’s a line from the book…………….  Am I allowed to put lines from the book on my blog?  Oh well I don’t really care.  Here’s the line……………….  “All those involved in this controversy agree that there is not only a need for a more scientific foundation of therapeutic intervention but also for better documentation of the benefits of stroke rehabilitation (Mauritz 1990).”

Please take note of the date there.  1990.  It is now 20 almost 14.  In 24 f’ing years there hasn’t been these improvements made in stroke rehab?  Reading this is raising my blood pressure.  I might have to stop, high blood pressure is the cause of strokes in humans.  That’s what some lady told me a month ago when I was walking my dog.

By the way, the word ‘repetition’ wasn’t mentioned until page 23.  I just thought that was interesting.  I’m too damn critical.

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29
Nov

Mammogram

I got a mammogram this morning. My mom had breast cancer when she was 32 so my gynecologists all make me go get mammograms. The lady giving me my mammogram said “I’m impressed that you’re starting to get these early like you should since you have a family history.” I said to the lady “I’m quite used to doing things that usually only people a few years older than me get to do.” She had no idea what that meant.

28
Nov

Misinformation

There is a CRAPLOAD of misinformation out there. It’s kind of astounding. If you have a brain injury, you better figure out for YOURSELF the correct information and not blindly listen to everything your doctors tell you. This is all stuff that I’ve heard from doctors or from other stroke survivors and it is just plain wrong information. First, it does not matter if your stroke was ischemic(caused by a blood clot) or hemorrhagic(bleed in the brain). What matters is how severe the stroke was, where it was, and the size of the infarct. A hell of a lot more brain matter can be killed from an ischemic stroke than a hemorrhagic stroke. And vice versa. Second, it does not matter if the stroke was in the cerebrum or cerebellum. All strokes are capable of causing severe disability for years and years. Third, the fatigue caused by a lot of strokes can last for years and years and maybe for the rest of your life. I was told by a neurologist, a year and a half after a debilitating, disabling stroke, that my fatigue was the result of being depressed. Oh really Doc? Fourth, I was also told at a year and a half out of my stroke that my recovery was over and I need to deal with the mental effects now. I cannot WAIT until that MD sees me again. Fifth, I was told by my neurosurgeon that the PFO in my heart caused my stroke. Then my cardiologist told me it had nothing to do with it. I’m still debating this one. The first speech therapist that treated me – don’t get me started. When it comes to a brain injury, there is A LOT of wrong information being given out. The truth is the medical community does not know how to deal with these patients. The fact that I lay in a hospital bed for 30 hours before being diagnosed speaks for itself. Barb, I’m pretty sure I used ‘lay’ wrong. I’ve never figured out when to use lay or laid or lain or lie or lied.

27
Nov

Function

Happy busiest going out night of the year everyone!  I hope later tonight you’re going out and partying it up just like me!!!!!!!!!!!!!

I’ve come to HATE the word ‘function.’  I started to read the manual of the continuing education course I ordered about stroke recovery and this is the very first line of the book……..”Optimal functional recovery is the ultimate aim of neurorehabilitation after acute brain lesion.”

😦  Except for my writing, I am WAY beyond optimally functional in every aspect.  Am I even close to satisfied with where my recovery is at?  HELL NO!!!!!!!!!!!!!!!!!!!!!!!!

If you read this and you work for a company that makes continuing education courses for physical therapists, please hire me to write a course about stroke recovery, please.

wrong

26
Nov

Headaches

A search term today was “are headaches bad after a stroke?”  Are headaches ever good?  I had a hell of a battle with headaches after my stroke.  They were unlike anything that I’ve ever experienced in my life.  They would last for several days and make me throw up.  But I lucked out and won no other physical pain from the stroke other than the headaches.  I’ve had migraines all of my life and the pain is BAD.  The pain is so bad I used to think “something must be wrong up there.”  Ummmmmm.  Although my stroke was caused by a blood clot that formed somewhere else in the body – no one knows where.  So maybe nothing was wrong “up there.”  Maybe something was, no one f’ing knows.  Anyway, these terrible headaches that I got after the stroke never amounted to more than – just a migraine.  I was terrified after the stroke and everyone around me was terrified so I went to the ER a lot.  I had LOTS of CT scans to make sure these headaches weren’t anything more serious – like another stroke.  They never were.  What has helped my headaches the most is drinking Kangen water and eliminating dairy.  (Research on Kangen water here)  This is my experience.  If you’re getting a lot of headaches – have your head checked out.  There might be something wrong up there.

25
Nov

Monday

Shoulda posted this this morning but oh well…..

monday

21
Nov

Checkout

The first year, maybe 2 years after an injury like this you’re going to seriously contemplate checking out of this world.  I did.  I contemplated that a lot, probably everyday.  Don’t.  Those first couple of years, just stay alive.  The hell stops.  When I got sick, I didn’t read anything like this that told me that my life was actually going to improve a lot and the nightmare would end.  And I read everything.  So, if you’re a relatively new stroke survivor, know this – it gets better.  That first year Oh.My.God.  I so badly wished that the stroke killed me.  Now I don’t wish that.  The reason I didn’t off myself is – well I’m not 100% sure why.

19
Nov

Joke

This is a joke.  Seriously.  I don’t know if you can reblog something from Blogspot to WordPress so I just copied and pasted.

The original links are here and here.

Kaiser Permanente Receives Honor for Outstanding Heart Attack, Stroke Care

The Right Care initiative in California needs to revamp its definition of what is considered good stroke care. If you want to prevent disability from stroke you need to stop the neuronal cascade of death. Does no one have 2 brain cells to rub together? http://news.gnom.es/pr/kaiser-permanente-receives-honor-for-outstanding-heart-attack-stroke-care Launched in 2008, the Right Care Initiative is a public-private collaborative effort focused on preventing premature disability and death from heart attacks, strokes and diabetic complications.
CONTACT
Mark Camps
510-529-1854

SOURCE Kaiser Permanente
http://www.kaiserpermanente.org

 

 
AND…………………………………..

 

 
Feeling grateful for you today – Jim Baranski, National Stroke Association

His email today and my response.
Dear Dean,
Stroke Help Line logo
StrokeSmart magazines
As we begin to look back at 2013, I am proud of what National Stroke Association has accomplished this year—our growing programs that support the stroke community, the launch of the Stroke Help Line and the expansion of StrokeSmart® through http://www.strokesmart.org. It is because of the increasing partnership of the stroke community that we are able to continue to our work.
And I am so grateful for your support.
I am giving thanks this year to you. When you became a part of National Stroke Association’s community, you showed me that our presence is valuable. When you attended a program, read our materials or signed up for StrokeSmart® magazine, I felt that our work was paying off. When you answered surveys to help us serve you better, I was ready to make changes to meet your needs. And when you asked what you could do to help us do more, I knew we had a real community.
Thank you.
You drive National Stroke Association to continue to find new and innovative ways to support the stroke community. Thank you so much for standing with us over our 29-year history. We’ve been able to start new projects and raise stroke awareness in more compelling ways. For example, our Support Group and Community Outreach programming has distributed over 400 Programs-in-a-box to supports groups across the country. We know this program is an opportunity to make a significant impact and meet a real need to stroke survivors, caregivers and family members.
You have helped us reach out to even more people in exciting new ways that weren’t possible when our organization began almost three decades ago.
Thank you for standing with us over the years—you help make all of our work possible.
With thanks,
signed by Jim Baranski

Jim Baranski Chief Executive Officer

Dear Jim,
When I look over 2013 I see a vast untapped font of knowledge in stroke survivors that you are not contacting. The stroke bloggers out there, Amy, Barb, Dean,Dr. Ellen,Grace, Jo, Joyce, Rebecca, Scott, Nina, Linda, Marcelle, Kate, Jim, know what needs to be done and your organization is not addressing any of it. With 10% full recovery and only 12% efficacy of tPA there are major opportunities that need addressing. Do you want to be known as the organization that solved the stroke problem? Then convene us knowledgeable survivors with your best people to create  5, 10, 15 and 25 year strategic plans.
Stroke Tribe Dean
14
Nov

Another Gray Hair

I think my post about finding a gray hair kinda started the frenzy of people commenting on my blog whatever the hell they want to and I can’t tell you how much I LOVE it.  Well, I’m very sad to report that I found another gray hair this morning.  This is not good, not good at all.  😦

13
Nov

Mood Swings

After a brain injury, you’re gonna have VERY little control over your moods.  It’s indescribably better than it used to be but I still have problems with this.  Sometimes I’m a horrible bitch, sometimes I’m unbelievably mean.  But now I would like to think I’m rarely like this.  Maybe people still think of me as a bitch but I DON’T CARE!  Now I can change my mood within minutes with meditation.  The first year after my event this kind of thing was out of control.  I couldn’t help it, I had zero control over what I said or the way that I treated people.  I can’t keep apologizing for it, it is what it is.  It gets better.  There are very few people who I called a friend prior to the stroke that I still call a friend to this day.  Yesterday I was in an area of town that ex-friends of mine opened a store.  That’s what prompted this post, I consider LOTS of people to be ex-friends.  For everyone reading this that doesn’t have a brain injury – if you ever experience a brain injury, GOD FORBID, but if you ever do you better hope that your friends are willing to stand by you through all the mood swings.  The majority of people in my life were not.  When I got sick, there was an outpouring of support.  My hospital room was overflowing with cards and flowers.  Well, most of that support was fake and not genuine.  Now almost 3 years later I can count on one hand the number of people from my old life that are still in my life.  Those people are NEVER getting rid of me.  I would go to the ends of the earth for them.

Please go here for a better, affordable alternative to learning Transcendental Meditation.

12
Nov

Center of the Brain

Thanks for making me aware of this Dean.  Please go here and make a donation.  Their goal is exactly the kind of thing that I would like to be involved in.

“Center of the Brain” is STARTING in San Diego, though we intend to spread its services around the USA, and we foresee eventually offering, as soon as we are able, telemedical education, monitoring & consulting services globally. We have an extremely capable Board of Advisors. Moreover, all three members of the Board of Directors have survived serious brain injuries. I (President of the Board) myself had a massive hemorrhagic stroke almost 5 years ago. If you have no insurance, or you have run out of coverage, you are one of the people our upcoming 501(c)3 organization is designed to help. If you see that there is a tremendous need for medical help for serious brain injuries such as strokes and TBIs, and you can afford to make a donation of ANY size — even a dollar (seriously) — please do so. Getting many of initial donors — regardless how small the individual donations are — will be invaluable in connecting with large individual and institutional donors. Questions? Email me at billy.ethridge@gmail.com, Skype me at billy.ethridge, or phone me at 760-632-1820. Donations: http://www.gofundme.com/brain.

10
Nov

THERAPY

Rehabbing stroke survivors needs to change.  Not just stroke survivors, people with any kind of brain issue.  Something needs to change.  I don’t know what yet but something needs to change.  I’m not happy with some of the care that I received and every single person that is part of this online stroke tribe(credit for coining ‘online tribe’: Barb) that we have created is not happy with some aspect of the care that they received post-stroke.  This SHOULD NOT be the case.  That actually makes me kinda sick.  The time that I spent in the hospital I was incredibly vulnerable and miserable and not able to speak for myself and not comprehending everything properly and I wasn’t treated right.  And I wasn’t treated right in the absolutely critical 5 months following my month-long stay in the hospital.  That’s not ok.  I just realized the impact that I could possibly have on neurological therapy.  I’m a PT and I had a devastating, horrifying, life-altering, tsunami-like thing happen to my brain.  At the age of 30.  I write a very popular and influential blog.  I have a lot of friends who are extremely intelligent people who are dealing with this.  All of these things combined well………

One thing that I know needs to change dramatically is when patients with brain injuries are allowed to sleep.  A search term today was “is it good for a stroke patient to do a lot of sleeping?”  The answer :  YES!!!!!!!!!!!!!!!!!!!!!!

Right now inpatient therapists are on like a 7am to 5pm schedule and traumatically brain injured people are supposed to conform to this schedule.  Yeah no.  It doesn’t work.  People that have just been traumatized to the brain need to sleep A LOT and WHENEVER they want.  You want a better recovery for your patient?  Well do you?  Then let her sleep.  The brain heals when it sleeps.  Sleeping should be the #1 priority and therapy should happen when the PATIENT is awake and ready.  Sleep comes first, rehab second.  I remember when I was in the hospital(for a devastating brain injury) that an OT would come into my room every morning at 7am and wake me up saying “rise and shine!”  I never wanted to hurt someone so bad.  If I wasn’t nearly locked-in that OT might have been physically harmed.  The salaries that are given to therapists are kind of pathetic(at least in Pittsburgh) and it’s most definitely not enough for me to have, prior to this event, work late hours or overnight.  So one change that NEEDS to be made is higher salaries for therapists so that they’re willing to work crazy hours to conform to the PATIENT’S sleeping schedule.  These patients absolutely SHOULD NOT have to conform to the therapist schedule.  It should be the other way around.  People that have just had something like this happen CANNOT be expected to be on any kind of schedule.

Oh and all of this needs to happen.  Some of this has nothing to do with therapy/rehab but whatever.

8
Nov

Continuing Education

In order to keep my PT license active, I have to do 30 CEUs every 2 years.  CEU = continuing education unit.  It’s good that they make us continue to educate ourselves.  I got the credits for Peter’s course.  That was good for 6 credits.  I found a really good website that seems to have good courses that I can do all online.  So I can go to a Starbucks and get my CEUs.  I just ordered a course called…….

Stroke Rehabilitation: Guidelines for Exercise and Training to Optimize Motor Skill: Module 1

This will be interesting.

8
Nov

Strength Training

When I started writing this blog, I wrote with an I don’t give a crap attitude.  I didn’t worry about hurting feelings – my feelings have been hurt A LOT.  I didn’t worry about offending anyone – I have been offended A LOT.  I just didn’t care.  Now I care.  I think my I don’t care attitude is part of what made this blog so popular.  I don’t know, maybe that has nothing to do with it but whatever I did at the start of this blog I want to keep doing.  On my last post, someone commented about strength training and I agreed that it’s super good for you and then I said that I was being hypocritical because I rarely strength train.  For the first time since I started writing this blog I thought later, “well maybe I shouldn’t have said that.”  That’s not not caring!  I think lots of people out there look up to me and take what I say very seriously.  I know this for a fact.  So for that reason I want to explain that comment a little bit.  I don’t weight train.  I’m human.  A lot of humans don’t do what they should be doing.  But in terms of stroke recovery – loss of strength is not an issue for me and never really was.  Strength training is not vital to my recovery.  Not to say that it wouldn’t help, it sure would but I’m doing ok with just the occasional session of weight training.  My issues involve control and coordination, not strength.  My issues were never about strength from day 1.  That’s why I don’t do strength training.  Practicing writing – I do that a lot.  Practicing eating and drinking with my right hand – I do that a lot.  Practicing pressing buttons on the remote control with my right hand – I do that a lot.  I do what I need to do.  I don’t need to weight train.  If poor strength was an issue for me you better believe I’d get a Total gym and do it everyday.

6
Nov

ACL, PCL, MCL, LCL

This is really really orthopedic.  I heard on the radio this morning that Ryan Lochte tore his MCL.  If you don’t know who Ryan Lochte is email me about it because I’ll surely get sued for libel if I talk about him on a public blog.  Anyway, if you’re a football fan you’ve most certainly heard these terms.  Football players absolutely LOVE to tear these ligaments.  They love it.  Ligaments connect bone to bone.  ACL = anterior cruciate ligament, PCL = posterior cruciate ligament, MCL = medial collateral ligament, LCL = lateral collateral ligament.  Cruciate means that they cross.  The ACL and PCL cross each other and make an ‘X’ in the knee. Collateral just means that there are two of them and they’re parallel.  The ACL, the most popular ligament in the knee, maybe in the whole body, runs from the back of the femur(thigh bone) to the front of the tibia(shin bone).  Its job is to prevent hyperextension of the knee and stop the knee from twisting.  So when you straighten out the knee this ligament gets taught and prevents any further motion from happening.  It also gets taught when the foot is planted down and the rest of the body twists.  Sometimes, the foot is planted but the body keeps twisting and you hear an awful sound coming from the knee – that’s your ACL tearing.  The PCL does the opposite.  It runs from the front of the femur to the back of the tibia.  It gets hurt less often.  The collateral ligaments run down the sides of the knee connecting the bottom of the femur to the top of the tibia.  The MCL is on the inside of the knee and the LCL is on the outside of the knee.  There’s all kinds of ways to fix these – sometimes they use a tendon, sometimes a part of a cadaver.  Yes, a cadaver.  A dead body.  Sometimes, they use the ligament of a pig!  This is not a joke.  There is no way to know how well a recovery from one of these surgeries will be, just like recovering from a stroke!!