Letter to Legislators for World Stroke Day

Thursday, October 29th is World Stroke Day.  Below is the personalized portion of the letter I wrote to my legislators, asking them to recognize it on the floor.  Obviously, I edited Sis’ real name out for privacy reasons for this post, but I wanted to share.  There is still time to write to your legislators, asking them to recognize World Stroke Day…and if you don’t want to add a personal story, that’s ok!  You just fill out the electronic form with your name and address and you’re done!  Click here to send your letter!–ML

It is important to me because 16 months ago, my world was turned upside down by stroke.  My youngest sister, at the age of 28, nearly died from a massive stroke.  Miraculously, she is still with us, and because of amazing hard work and dedication from her, my mother (who has put her life on hold to move in with my sister as her caretaker), and her team of doctors and therapists, Sis continues to recover.

The stroke left Sis with paralysis on her right side, as well as aphasia, a language disorder that initially left her unable to speak at all.  After 16 months of intensive therapy, she can walk on her own, with only a slight hitch in her step.  She can also move her right shoulder, elbow, and arm fairly normally.  She is still working on her wrist and fingers, and while there is some movement, she still does not have the control or ease of movement that she once did.  She spends much of her day doing exercises that focus on the wrist and finger movements, but she still likely has months of work to do before those movements will begin to happen normally or on their own.

In regards to her speech, that has been the slowest and most frustrating part of Sis’ recovery.  After 16 months, she is able to speak in 3-5 word sentences on her own, although often haltingly.  She can speak in longer phrases if she repeats after someone.  When Sis struggles while speaking, it is very evident that she knows what she wants to say, but the words are just ever so slightly beyond her grasp.  As we’ve learned, having aphasia doesn’t mean that she has lost any intellect, just some of the pathways to get the words out.  It is heartbreaking to watch her struggle.

Looking back, I am ashamed to admit that I knew next to nothing about stroke or stroke recovery before nearly losing Sis.  I had little interaction with stroke survivors, and did not realize the full scope of it all.  I have learned that every single stroke is different, as well as every single person’s recovery.  I have learned that while those in the medical field know so much about the brain, there is still so much they do not know, so much they cannot predict.  Sis is case in point; her doctors and therapists cannot tell us how far she will come in her recovery, she has exceeded all expectations up to this point, so much so that there are no statistics her doctors can reference to even make an educated guess.

That is why World Stroke Day is so important. There is so much more research and education that needs to occur, with the health professionals as well as the common person.  Adjustments need made to health insurance in regards to physical therapy, occupational therapy, and speech therapy.  It is becoming more and more clear that extensive and intensive therapy is vital in the months following a stroke, and therapy coverage should be expanded for stroke patients. Stroke is one of the leading causes of disability in the world; just imagine the return if we focused more resources into stroke recovery, and got those stroke survivors the therapy they need!

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Message to an Old Friend

I recently heard that the father of a childhood friend had a stroke. I was immediately sympathetic, as I remember how horrified and helpless I felt those first few weeks. I reached out, if only to show her someone understood. I think my message sums it up well.

Dear M,
I am so sorry to hear about your Dad…I’m not sure exactly what is going on, but have read your updates, and am reminded of our time in the Neuro ICU with Sis15 months ago. It’s a scary, overwhelming place, and seeing the strongest person in your world looking so vulnerable, when there is nothing you can do to help them, is terrifying. I can only tell you to stay strong; for your Dad, and especially for your Mom and your brothers.Take care of yourself and them. You will need your strength for the days and weeks to come.

As I am sure you are learning, brain injury is a tricky thing, and it seems that as much as we know about the brain, there is still so much we don’t know. Not to mention, as I have been learning from our experience with Sis, every single case is different, and every single person’s recovery is different.I know how overwhelming that can be, as the Doc’s couldn’t seem to give us as much information as we would have liked in those first weeks in the Neuro ICU. It sounds like it will be a long road ahead for you guys, and I am sorry to hear that. I wouldn’t wish what we have been going through these last 15 months on ANYBODY.

Take care of yourself. Know that all of us are thinking of you and praying for your family during this time. If you need someone to talk to, just message or call me, any time. We’ll be rooting for you guys!

– ML

Wheel….Of….Fortune!!!

A simple text message, one that merely relayed that Sis had been able to solve a puzzle on Wheel of Fortune has me absolutely over the moon. Why, you ask? It’s just Wheel of Fortune, you say. But, Sis’s stroke left her with aphasia and apraxia, two speech and language disorders that, to be honest, I don’t totally understand. Basically, the words are in her brain, but the pathways are damaged that allow the words to get out. Initially, Sis was not able to speak at all; by the time she left the hospital for inpatient rehab, she was able only to say the word “No,” and every now and then she’d come up with one word that was somewhat automatic, like “Hi,” when coworkers visited. But these additional words were very few and far between.

In the past nine months, Sis has been working on broadening her vocabulary daily. She has progressed from only working on single words to now speaking in short, 3-4 word sentences. Because of some of her pre-stroke speech patterns, however, that is more of a struggle than it should be. Sis has never been the most vocal person in the world, and trying to force sentences where she would have answered with just one word pre-stroke, it’s like pulling teeth.  Despite months of working on speaking in sentences, half of the time when you ask her how she is, she answers simply “fine,” and must be reminded that she should be saying “I am fine.”

Very little of the speech capabilities that Sis now possesses have come without hours and hours of hard work and practice.  Sure, there have been a few words that have come on their own; “no,” “what,” and “geez!” being the three big ones for her. Yes, three; only three. They tell us that there are often words that come automatically, and often it’s those 4-letter words people come up with first. And, while Sis can speak some, she is incapable of starting a conversation, let alone keeping a conversation going.  And often, even communicating in the parameters that she is able to, she ends up grasping for words. She knows what she wants to say, it is evident, but it just will not come out.

So, Sis coming up with the answer to a Wheel of Fortune puzzle, completely out of the blue, is absolutely amazing! I don’t know how she did it. If you think about the speed of one of those puzzles, the fact that many letters are missing on a puzzle, not to mention the fact that Sis has seemed to have hit a bit of a plateau with her speech, it’s incredible to me!

Now, if anyone has any ideas to help us past this plateau on her speech, that would be much appreciated. We had been having her narrate her day as an easy way to get the words coming…and it worked! But now, it’s boring, and it seems to have reached the end of its usefulness anyway. We cannot come up with any new ideas to supplement her speech therapy.

Intro: Sister of a Stroke Survivor

Think about it, what do you really know about stroke and stroke recovery? If you had asked me 9 months to a year ago, you would have gotten a vague answer; I would have told you that it involves a clot in the brain. I would have mentioned the paralysis to one side of the body, and I certainly would have said something about the facial droop. In terms of recovery, I knew physical therapy is usually involved, and the gentlemen I work with that had suffered strokes were back on the job in 3-4 months, so I assumed that was the norm. Oh, what I thought I knew.

It will be 9 months on Tuesday since my sister suffered a massive stroke that left her with unable to speak and with virtually no movement on her right side. We nearly lost her.

Let me say, before this happened, I knew absolutely NOTHING about stroke and stroke recovery.  How could I? Before last summer, I knew exactly three people who had suffered strokes, none of which I was particularly close to. Those two gentlemen from work were back rather quickly, and the distant cousin, well, I didn’t know her well enough to actually see the drastic change in her personality that everyone talks about.  I will not claim to know everything, and I am certainly not scientifically minded enough to even totally understand everything, but I know a lot more now than I did 9 months ago.

Luckily, and not without constant dedication and work from both Sis and her caregiver (aka Mom), Sis is recovering faster and further than the doctors originally had thought she might. In fact, they are now hopeful for a full recovery, it will just take time. Age is very much on her side; she is not yet even thirty years old.  She is definitely the strongest person I know, as she battles this with more grace than I ever would, not to mention some of the other obstacles she has overcome in her short life.

As our family has traveled this journey alongside her, we too have had our strength tested. We’re surviving, although at times it feels as if we are barely grasping the ledge with our fingernails. It has been a long, hard, and emotional almost 9 months.  Since Sis is out of imminent danger and life has slowed down a tiny bit (I am still actively driving 4-5 hours each way about two weekends a month to visit and help out, so it’s still busy!) I began searching for some sort of online support groups for family of stroke survivors. I didn’t come up with much, especially for those who are not the primary caregivers. I joined one or two on the American Stroke Association website, http://supportnetwork.heart.org/home  but they just don’t seem to be as active as I would like.

Enter this idea, this project that is Sister of a Stroke Survivor. I admit, I don’t have any definite plans as to where this is going, how often I will post, or even what I will write about. I just want to reach out to folks who have gone through this, or are going through this for some sort of support. And, if I’m being honest, I have to say, I am terrified to do this, to actually put any of this last 9 months into words. I’ve not had the luxury of truly being able to emotionally process the events of the last nine months, so who knows what wounds I may open up. Moreover, the whole experience has been so surreal, that I fear I may not find words enough to adequately get my points and feelings across.  But, I need to try.

I think that is enough to get started. You may also contact me via the following means:

Twitter: @sisstrokesurviv4

Facebook:  https://www.facebook.com/sisofstrokesurvi4

Email: sisterofastrokesurvivor@gmail.com