A leave of absence
I realize that I never posted anything after my last announcement of a break, but I just want everyone to know that I’m not dead (and neither is Mike), but to not expect any posts around here anytime in the near future.
Mike isn’t in therapy anymore. His last session was just before Christmas, and with him home 24/7 over the last few weeks I’m feeling completely burned out. Every time I sit down to write something it just turns into an angsty sob-fest, which isn’t what I want for this blog, so I’ve opted not to post anything at all.
I’ll be back eventually. Until then, thank you for all of the support and love, hope you all are doing well and enjoyed your holiday break (if you got one).
Hugs,
Kelsae
Unplugged
Two things:
1. Today is World Stroke Day. If you don’t know what I’m talking about, go here. If you do… well, happy World Stroke Day, I guess.
2. I plan on spending this week (mostly) unplugged from the internet, starting right after I post this. Mike’s one year stroke anniversary is on Friday and I’ve been feeling really anxious about it, so I’m cutting myself some slack and I don’t plan on being super productive – including blogging.
I’mma go pound some ibuprofen and try to kill my stress headache now. See you kids next Monday.
For Better or Worse on Stroke and Aphasia
I saw the following For Better or Worse comics posted on one of the Facebook aphasia groups that I belong to, and I thought I’d share them here. Lynn, the artist behind FBoW, wrote these comics after a member of her family had a stroke. They’re incredibly true-to-life. Honestly, these mirror almost exactly experiences that Mike and I have had, except we’re decades younger than the couple in the comic.
I’m posting the dialogue below each comic for those of you who use text to speech software.
Bus Driver: Sit down, Jim, and we’ll get under way. Your chariot awaits!
Jim: Yes.
Bus Driver: I’ll just get you locked in and we’ll be all set to go.
Jim: Go!
Iris: Listen! He said go!!
Iris: Jim, you haven’t said that word before! Not in its proper context! You’re beginning to connect the right words to the right meanings! Isn’t that exciting?!!
Jim: Boxcar!!!
Therapist: We’re ready to do your physio, Jim! Around to the left! You know the way!
Jim: Yes.
Therapist: Lots of tension in your legs. Let’s see if we can limber them up a bit.
Therapist: Now, can you use the technique we’ve been practicing. That’s right. Roll to a sitting position and… get out of bed.
Jim: MMHH
Jim, thinking: I once ran for miles, carrying a rifle and a gunny sack on my back!
Jim, thinking: This is harder.
Therapist: I’m going to check your balance. Don’t let me push you over, ok?
Jim: No, no.
Therapist: Good work. Are you ready to walk?
Jim: Yes?
Therapist: Yes, with a cane. You can do it!
Therapist: Keep your right foot on the right side of the line. Don’t cross over. We’re getting there! … One step at a time.
Iris, thinking: That’s what I keep telling myself. Jim’s getting better … One step at a time.
Jim: B…Bucket…Yes?
Therapist: I know. You did a great job today, Jim! We’ll see you next week, OK?
Therapist: And, keep up the exercises I gave you to do at home.
Jim: Yes?
Therapist: Yes. Every day.
Iris: Thanks, Judith. He really enjoys his physio days.
Therapist: We have our own little family of friends in here, don’t we!
Iris: We sure do!
Iris, thinking: Thank God for family and friends!
Iris: Your speech pathologist is coming at 3. Maybe You should rest awhile.
Jim, thinking: I don’t want to rest.
Iris: You don’t want to rest? Would you like to look at the paper and have some tea?
Jim: Yes.
Iris: Your feet are so cold! I’ll get your slippers and some warmer socks.
Iris: You’re not reading the paper. Do’nt you want to know what’s going on in the world?
Jim, thinking: You ARE my world.
Iris, thinking: Now that someone’s with Jim… I might be able to go out for a while.
Iris, thinking: I could visit a friend, or walk to the corner store… or sit in the park and watch the people go by.
Therapist: Iris, we’re fine on our own here. Why don’t you go and get a little fresh air!
Iris: Thanks, Christine. I think I will!
Iris, thinking: There’s nothing like a coffee break when you’re working 24-7!
Therapist: We’re going to try the word “I” again, Jim. The sound is in “hide” and “wide.” Watch my mouth: “eye.”
Jim: AAEEEHHH.
Therapist: Try it again. Let’s use the picture cards. The one on your right had a smile on it. Use the smile as you say “eye.”
Jim: AHHH…EEEH
Therapist: Good. You have the “EE” sound. Watch my mouth again… “Eye”…”Eye.”
Jim: EEEEH.
Therapist: “Eye”…”Eye”…”Eye”…Are you looking at me?
Jim: Yes.
Jim, thinking: I’m looking you in the “eyes.”
Therapist: Your’e doing the “EEE” sound very well, Jim. Let’s put an “M” in front of it, and we’ll have the word “Me.”
Therapist: Try MEEE.
Jim: MMBUHHH.
Therapist: Again. Watch my mouth… “MEEEE.”
Jim: MMM MMM UHHEEEE.
Therapist. Again. “MEE.”
Jim: EEEEEEEHHHHH
Therapist: With the “M” sound: “MEE.”
Jim: MMM UUH HEEAAA.
Therapist: Almost! Again: MEEEE.
Jim: MMMBBU HAAAAAA.
Jim: AAAA AUGH!
Therapist: Let’s save “ME” for a while, OK?
Jim, thinking: Let’s save BOTH of us!!!
Therapist: Ok, comprehension exercises! Are you up for it? Good. Are you a woman?
Jim: No.
Therapist: Are you a man?
Jim: Yes.
Therapist: If you are a man, raise your right hand.
Therapist: If your name is Jim, raise your left hand. f you are sitting down, raise your right hand.
Therapist: You can put your hand down now, Jim… You can put your hand down!
Therapist: Oh.
Jim: (Pictures a restroom symbol in his mind)
Therapist: IRIS?!!!
Iris: Well, I’m glad I came back from my walk when I did!
Therapist: Me too!
Iris: Jim needs some help when he’s in the washroom, and he isn’t comfortable going with anyone besides myself or the nurses.
Iris: Don’t be in a rush to go, Christine. You can stay for a while.
Therapist: It’s OK, Iris. We’ve done all his speech therapy for today.
Iris, thinking: But…I need someone to talk to!
Iris: I put instant mashed potato into the soup, dear. Is it easier to eat now?
Jim: Boxcar. Nothing broken. Torquing nuts.
Iris: Is it good? Would you like a napkin? Did you have a nice day today?
Jim: Standard shift. Standard shift.
Iris: Jim, the questions I’m asking all have a “yes” or “no” answer. You can say yes and you can say no!!! Did you have a nice day today?
Jim: (mentally swearing)
Iris, reading silently: If your loved one responds with meaningless or unkind words, do not take it personally. This is all part of living with aphasia.
Iris, thinking: *sniff* What a strange condition this is… At least it comes with a manual.
Iris, thinking: When he’s sleeping, he just looks like my Jim. As if he’d never had a stroke at all.
Iris, thinking: I wonder if he can speak normally in his dreams. I wonder if he can run and walk again and do all the things he used to do.
Iris: I wonder how much he knows, how much he remembers and understands. It’s so hard to tell when he can’t communicate properly.
Iris: Jim… I hope you know… That I love you.
Jim, dreaming: And lady… I am CRAZY about you!!
Blog Feature: Redoable
Redoable is a survivor blog, written by Lafcadio De La Foret, a novelist, photographer, and former teacher of journalism and public relations. Lafcadio hails from the UK, doesn’t like milk in his tea, and writes about his experiences as a stroke survivor, focusing mostly on his aphasia.
His posts are both enjoyable and informative, especially his early entries recollecting his stay in the hospital. I recommend going through the archives of his blog, starting with the oldest posts and ending with present day. Not every stroke survivor remembers or can express their initial reactions to post-stroke life (aphasia obviously complicates this), so Lafcadio’s early entries are actually quite valuable to other survivors, caregivers, and the medical profession in general.
I suspect that if more direct-care workers (doctors, nurses, therapists, etc.) read survivor blogs, the quality of care for stroke and aphasiac patients would improve a great deal.
Some must-reads:
A new morning – without words
Breaking free – heading home
The secret to a speech therapy comeback from a stroke? Getting your brain to talk
Welcome to the city of stroke-ville – where more times are bad than good
Every Thursday we will be featuring blogs written by caregivers and/or stroke survivors. You can find more of them on our resources page. If we’ve missed any (and I know we have), send us an email at strokexyz (at) gmail (dot) com or via our contact form and let us know! We’ll add it to the list!
Walking in Physical Therapy
Mike has been improving his walking skills with physical therapy since day one. When he first woke from the coma, he wasn’t able to sit or even hold up his own head without assistance. After about a month of hospitalization, he could walk using a hemi-walker and hands-on support from a physical therapist (or two).
Fast forward to nine months after his release from the hospital, and Mike can now walk around the house with a single-point cane (no more arm crutch!). If he continues to progress at this rate, the PT hopes to get Mike walking around the house without any assistance whatsoever. And despite my reluctance to be too optimistic, I think the physical therapist might be right.
Check out the following video, comparing Mike’s walking abilities from last December (2011) to last week (October, 2012). (No volume necessary, it’s just background noise.)
(If you’re viewing this in a reader or the embed isn’t working, click here to watch on YouTube.)
Website Feature: National Institute of Neurological Disorders and Stroke
National Institute of Neurological Disorders and Stroke
The National Institute of Neurological Disorders and Stroke (NINDS) is a good site for obtaining basic information on anything related to stroke and brain trauma. They offer summary pages on many neurological disorders, organized A-Z, which provide general information detailing the cause, treatment, prognosis, and research of each topic.
They have pages on stroke, aphasia, apraxia, and lots more. (Check out the A-Z Index here.)
NINDS is also one of the groups behind the Know Stroke website, another good place for basic information about stroke, where you can find materials and information on preventing, identifying, and treating stroke.
From the NINDS home page you can also find clinical trial opportunities for patients of neurological disorders (like stroke and aphasia). Just scroll down to the bottom of the home page, and select a disorder from the drop-down menu in the Clinical Trials box. You may be able to participate in a research study!
Every Tuesday we will be featuring some helpful online resources for stroke survivors and caregivers. An updated list of these websites can be found on our resources page. If you have any resources you’d like to share, send us an email at strokexyz (at) gmail (dot) com or via our contact form and let us know so that we can add it to the list!
Wheelchair Geocaching
Mike and I used to go geocaching during the summer when we lived in Utah. We both love hiking and spending time outdoors, so it was a natural fit for us. Also, who doesn’t love the idea of a good old fashioned treasure hunt? Geocaching totally appeals to my inner-child.
We haven’t gone in a few years – between graduate school, pregnancy, and Mike’s stroke, we had a lot going on. Things have definitely calmed down in the last few months though, so when one of our neighbors invited us to go with her, Mike and I were way excited.
Sadly, our old geocaching days will probably never be re-lived. We used to pick caches hidden on hiking trails, parks – anywhere that wasn’t easily accessible. Mike and I both love a good challenge, especially if it meant getting dirty. But since Mike isn’t confident walking on anything that isn’t completely flat (he freezes on inclines or uneven surfaces, like gravel), we have to pick outdoor activities that are wheelchair friendly.
Fortunately, there are geocaches hidden everywhere – including urban (paved!) areas – so our new friend Julie picked a few spots right in our neighborhood, and we spent a good portion of Saturday morning digging through bushes and jaywalking all in the name of the treasure hunt.
Mike was in charge of the GPS and giving directions (which he did mostly through pointing) and the rest of us sorted through rocks, dirt, and poky foliage to find the hidden caches.
We had lots of fun and it felt good to get out of the house and do something that didn’t involve therapy or grocery shopping.
Don’t Forget About the Forums
Hi everyone!
It’s been a busy week and the website has sort of been my last priority. Sorry.
You may have noticed that the weekly website and weekly blog features were missing this week. I promise that they’ll be up next Tuesday and Thursday, and hopefully I can get a few scheduled in advance so that I don’t fall behind again. Remember, if you write or read a survivor or caregiver or stroke-anything blog, send me an email and I’ll add it to my list (strokexyz [at] gmail [dot] com).
On a happier note, I got TONS of filing accomplished this week! Sadly (ironically?) I still can’t find things when I need them, so I’m beginning to suspect that disorganization wasn’t the problem after all, and that I’m just scatterbrained. Can’t win ‘em all, I suppose.
Also, don’t forget to check out our forums and say hello! We’ve had a few people share their stories (thank you to those who have), but we could always use more. I haven’t been very active in the forums, but I promise to be more on-the-ball from now on.
I hope everyone is having a productive and stress-free (ish) week. Tomorrow is Friday, which means that we are just one day away from the weekend. We can do it!
Shots
Yesterday we took Toby to get his flu shot. It went as smoothly as could have been expected – the nurse who administered the shot was quick and Toby only cried for a few minutes. Mike was worried through the whole thing – he’s actually terrified of needles (kind of ironic for a paramedic, right?) and he felt bad for Toby.
We hung out in the waiting room afterward (you’re supposed to wait 15 minutes or so before leaving just in case the vaccine causes a reaction of some kind) and while I was wrangling Toby back into his pants, Mike leaned over to him and solemnly whispered, “I don’t like shots.”
I suspect Toby doesn’t either.
Drowning in Paperwork
Medical emergencies suck, not only because of the additional stress, potentially debilitating side effects, and hospital stays, but the paperwork. OH MY GOODNESS, THE PAPERWORK.
I’m in the process of re-organizing our file cabinet, because nothing is actually filed… When Mike had his stroke, I had about a million things to do, and organizing paperwork was the last thing on my mind. So, every scrap of paper that I’ve managed to collect over the last year has been piled together and stashed in various places around the house. On my more productive days, the smaller piles are shoved haphazardly into the bottom file drawer, but I haven’t done any real organizing in well over a year.
And that makes it really hard to find stuff.
So, I recommitted myself to get organized (CLEAN ALL THINGS! …Anyone?) and this is what my bedroom floor ended up looking like last night:
That’s less than a third of what I had to work with. And it’s all Mike’s stuff.
I have successfully organized and filed away almost everything (!) but I am totally burned out and can’t bring myself to finish the last few stacks. So, I’ll be shoving them back in the bottom drawer to be dealt with at a later date.
At least I got something done, right?
