I love this and hope it’s successful. Please donate to this.
I am very confident in my lack of confidence that there will ever be any kind of cure for stroke. If it ever happens, I’ll be long, long dead. So, our options are to figure out this new incredibly messed up life for ourselves because the people who are supposed to help us the most, don’t. That’s been my experience and the experience of many, many others who have commented on this blog.
So please donate to this project and read her story. “Maggie (33) has it all: brains, beauty, an education, a fiancé, and plans for a family.” We can all say something similar, no?
Watch this trailer (it’s different from the teaser that was on my last post.) Watching this trailer will make you cry, like a lot, because if you’ve had a stroke you will know exactly how hopeless and broken and devastated and scared and angry and (insert emotion) that she feels. You’ll be able to empathize with Maggie. I know I can. The part of the video with her in a wheelchair kicking a stupid ball to her physical therapist was – I’ve been there.
So, watch, read her story, and donate to this please.
This blog of mine has over 450 followers and I really hope that someone who reads this has or knows someone who has decision-making powers at a restaurant/café/coffee shop, what have you. This whole push for straws to be used less at restaurants is great. It’s great. I’m all for the environment and reducing my carbon footprint. My husband would tell you otherwise but I really am. I love this planet. I’m just not a big fan of living on it.
Back to the topic – straws. Not having straws available to your customers is discrimination against disabled people. There was a time in my life not so long ago that I could not drink a beverage without a straw and a tight lid due to the severe tremor which occurs mostly in my dominant hand, but small tremors also happen at times when using my non-dominant hand. There are people living in this world who CANNOT drink independently without using a straw. If you are an establishment that chooses to stop handing out straws with drinks unless asked for, good for you. If you don’t have straws available to your customers if asked for, THAT’S DISCRIMINATION.
A new coffee shop I recently found which I love has a sign that says #nostraws or something. They’ll be receiving a letter from me.
I finally feel, after 7+ years, that I speak normally again. Well, not normally but pretty normal. Many, many people have told me since about 2 or 3 years out that I sound absolutely fine, my voice is fine. Well, telling me that and my believing it and feeling that way are very, very different things.
I still get caught up on words, thoughts, etc. I still mess up all the time when I’m trying to explain something. I can explain anything to you in writing, I can write masterpieces, but don’t ask me to explain or articulate something to you vocally. Up until recently, I felt so incredibly uncomfortable in a group of people mainly because of my voice and my inability to participate fully in a group conversation. I had to be one-on-one with people. I still MUCH prefer that but I feel ok about conversations in groups now – as long as they’re not too long. I’m able to project my voice and make sarcastic comments again, I have timing again. For a long time this was not the case because I spoke so so slowly that I would ruin a conversation if I tried to interject something. I felt like people just pitied me because I sounded so awful.
For the first few years, speaking was physically taxing for me. I remember talking to someone whose husband had a stroke and she was having such trouble with the notion of simply talking being fatiguing. Think of it this way – I’ve talked a lot about gait/walking on this blog because that’s my thing. I know how to strengthen certain muscles used in walking and I’m able to figure out which muscles need to be strengthened.
The same goes for your voice. Speaking is controlled by muscles just like walking is and all of those muscles that control speech need to be built back up just like the muscles used for walking. @Tina C. – it’s physically taxing for your husband to speak right now, it’s fatiguing for him, it gets better. I have said through all of this that the speech issues were the most devastating part of the stroke. Not being able to say what you want to say when you want to say it is pure hell. Having to depend on other people to simply speak for you, order for you in a restaurant – stuff like that, is pure hell.
I wasn’t afflicted with expressive aphasia (the inability to speak). It sounded horrible but I was able to go to a therapist and talk about stuff and cry. Someone with expressive aphasia would not be able to do that and my heart goes out to you if that describes your situation.
Took a few years, but he gets it now.
This is my husband’s contribution of part of the article that I recently wrote for Healthline.com.
Someone drew us as cartoons and I love it.
This question is asking about ascending and descending stairs.
Sometimes, looking at the search terms that were used of how people ended up on my blog is a great way to give me an idea for a new post. This exact wording was put into Google(or maybe a lesser-known search engine)….”why do you go up with the good and down with the bad?” Somehow my blog came up in the results, my site was clicked on and the rest is history.
So, back to the question. Why indeed? Hey I know why!!!! Here’s why……(in case the first time around your question was not answered)…..
I’ll explain this using the example of a sprained ankle, think of an orthopedic injury that requires you to put less weight through one foot when walking or it will hurt like a m-f’er. When it comes to the weird gait patterns after a stroke, sometimes honestly this won’t apply. It did not apply to me for the first couple of years after my stroke. It didn’t work for me. Because of the tremor and ataxia in my right leg, I had to do the opposite of this gait pattern for quite some time when negotiating stairs. Going down with the bad didn’t work for me because my “bad” leg had a mind of its own for a while and I had zero control over it. I wasn’t able to direct it and tell it where to go.
Ok, back to the question. Pretend your right ankle is messed up. So the right leg is the “bad” leg. When going up stairs, the entire weight of whole body must be lifted up to the next stair. You wouldn’t want to put all that weight through your messed up ankle. So, when you go up stairs, you “lead” with your left leg, using that leg to do all of the work lifting your body, and bring your right leg up to same step to meet it. That way, when climbing a step, all the weight being lifted is on the “good” leg, you wouldn’t want all that weight put on your messed up ankle.
Going down a flight of stairs is the exact opposite. Again, you don’t want all that weight on your “bad” leg, so you would put your “bad” leg down onto the next, lower step first, which will transfer all the body weight to the left “good” leg and it can then do the job of lowering your body down without using your right leg at all.
Try it, go down a step, put your right leg first on the step below, you should feel your left side tense up a little as it prepares to perform the act of lowering the body to the next step down.
Aside from fatigue, which is a whole other dimension of disability and always deserves its own post when talked about – it is never to be combined with the hundreds of other things that I deal with. Anyway, BESIDES fatigue, as far as functioning in daily life, bouts of brain fog and migraines are the things that hold me back the most in those areas 7 years later. I’m not even talking about participating in life – writing, hanging out in groups, taking a walking tour – all of which I cannot do. No, these things sometimes take away my ability to simply FUNCTION certain days.
The brain fog stills gets me sometimes. There are still days that I just know as soon as I wake up that the day ahead will be a lost cause. Forget about getting any work done or thinking much at all. It doesn’t happen a lot anymore, and it usually won’t last the ENTIRE day. It’s one more thing that no one else would understand unless you’ve experienced it.
The migraines. They’re just so bad. Years ago, I gave up dairy for a while and it did help with the migraines, but it only lasted about a month or 2 because I wanted to order a pizza. A few months ago, I had back to back – within weeks of each other – 2 of the absolute worst migraines that I’ve had in about 5 years. 3-days in duration, nausea, vomiting, and a pain so intense it makes you want to cut your head off. I remember once when my husband was at work and I was at home, I got a migraine and texted him “you might wanna stop at Target on your way home and pick me up a new head, I’m done with this one.”
So, I’m trying dairy-free again. It helps. But I have a headache right now and I’m disappointed. Perhaps I’m just having a Herxheimer reaction as all the dairy leaves my system.
Years ago, I wrote a post about post-stroke fatigue, I’ve written about this subject quite a lot….Anyway, I remember Dean leaving this comment on some post, “7 years later and fatigue is still a bitch.” Well, now I’m at that point. I’m 7 years post and I’m going to say the exact same thing. Seven years later and fatigue is still a bitch. Dean, how is your fatigue now?
This is terrible, quite frankly. And just like everything else having to do with a stroke, unless you’ve experienced it, you can’t possibly begin to understand this. When I was 1, 2, or 3 years out, people around me were WAY more sensitive about it. When you look bad and sound even worse people tend to be a lot more sensitive about things. Everyone around me seemed to be a lot more understanding about the fact that I need to sleep A LOT and that an evening out or any social encounter whatsoever causes me to need recovery time usually for the entire next day or two. This was pretty much already the case because of my introverted personality, add stroke recovery to that….
Now, things are very different. Now 7 years later, I look great, sound great, I look like absolutely nothing is wrong with me and have appeared that way to other people for quite a long time, so other people are much less understanding and sensitive about this issue, and every other issue that I deal with every day of my life.
I remember a really arrogant neurologist prick telling me a year after my massive stroke(s) that the fatigue that I was experiencing was solely caused by my depression. And this guy was considered to be a worldwide “expert” on strokes. ANY brain injury is going to cause massive amounts of fatigue. Anger.starting…blood.beginning.to.boil……about.to.explode…..ok, enough, moving on.
HEY SPOUSES: if your wife or husband had a stroke and sleeps until noon, then goes to bed at 9 o’clock that night……don’t you dare make a comment about it.
A baseball player recently collapsed during a game and it was revealed the next day that it was due to a brain hemorrhage. My husband asked me what the difference is between a brain hemorrhage and a stroke. Well, a brain hemorrhage IS a stroke. It’s all semantics. I started this blog a few years before I met Pat. My muse for creating the blog was my own arrogance, thinking that I knew anything because of my medical knowledge. Since the year 2014, he has been my muse for most posts. Most ideas have come from a conversation that I had with him. He then apologized for asking that question, and asking me to explain something having to do with a stroke thinking that it might upset me. It’s cool, I like that I have a whole bunch of medical knowledge and I like being able to explain things like this, it’s the fact that this knowledge overlaps with my personal medical history that is the f’ed up part.
A hemorrhage means that a bunch of blood was found where it isn’t supposed to be. If it happens in the brain area, it’s a stroke. That’s going to kill some brain matter and that, my friend, is a stroke. So I explained it to him this way, “all brain hemorrhages are strokes, but not all strokes are brain hemorrhages.” My main stroke, for instance, was caused by a blood clot that decided to take a journey to my brain and get lodged in an artery up there. But, not to worry, I got to experience the other type of stroke about a week later when I was given too much heparin(blood thinner) which caused a brain hemorrhage. Thanks, docs. So, it’s the CAUSE that is the important thing to know. He then asked about a brain aneurysm. A brain aneurysm means that a weak blood vessel in the brain burst, causing a brain hemorrhage, which is a type of stroke.
He asked if this baseball player could have life-long consequences and disabilities like I do. The answer – oh yes, I’d be surprised if this man returns to professional baseball. He had a stroke. They are just calling it a ‘brain hemorrhage’ right now. The word ‘stroke’ scares the hell out of people. And rightly so. He said “ok, so it’s like saying that all squares are rectangles, but not all rectangles are squares.” Yep, just like that.
Climate change makes a hell of a difference. That is, moving to a warmer climate. For me, personally. I’ve lived in Florida for two months and I realized yesterday that I haven’t had a migraine since about the first week that I was here. I’ve had threats here and there and have had small headaches, but I haven’t had a full-blown 3-day attack replete with vomiting and being totally out of commission. This was a twice a month occurrence, at least, up north.
I’m gonna go bang on some wood for a while.
I’m walking better, my balance is better. I’m sure no one else notices this but I’m speaking better and more clearly. It’s not as much of a struggle to get certain words out. The power of susnshine is not to be underestimated. Vitamin D supplements don’t cut it, I tried. Fake light from light boxes doesn’t cut it, I tried. I tried everything. I moved down here mostly for the mental benefits because I could no longer live in the dreary, dark, cloudy, rainy hell that is PA. (I’m sorry if you live in and like Pennsylvania but I absolutely hate it). I didn’t expect an effect on some of my physical limitations this soon. I thought stuff would be helped eventually, but not this soon.
My husband is not thrilled about living in Florida. This place certainly has some crazies living here, but it’s been 2 months and I’m in a little bit of shock how good it’s been for me and my health. And we have yet to experience a winter here and the beautiful, gorgeous weather. I could do without all the mosquitoes, though.
Received this email yesterday, enjoy.
My name is ———– and I’m the Director of Communications at —— Hospital. I saw your post on life after a stroke. It’s great to see you’re already publishing content informing your readers about the importance of health and wellness, and I wanted to pass along some information that I think you will find useful.
I would be happy to send along a stroke resource guide we recently created called ———. As you know, it’s important the general public is informed about the signs of a stroke and how to act fast. I hope you find it to be valuable and will share it with your readers!
Please let me know if you have any questions and if you would like to see our ———– graphic.
Director of Communications
While I appreciate you reaching out, a much better way to teach the public about strokes instead of this generic information is to ask actual stroke survivors that have been through this hell for their advice.
I’m shocked that I’m a medical professional, have this awesome blog and have not once been e-mailed and asked for my perspective on things or advice. I’m just shocked. I’ve only been contacted by organizations wishing to advance their own agenda, as in your request. It’s not to help people. It’s to further your own agenda. “
I have written about this many times in the past, but I’ve been corresponding with someone over e-mail that said something to me that was upsetting. Here is the blurb from the e-mail that got to me…..
“Immediately after the stroke, I basically said to anyone exactly what I thought, I was far from polite. I would call that my Filter, it was my lack of holding back an inappropriate comment. I became more filtered as time went, sort of like how a child becomes more filtered with age, so I am fairly filtered right now with my comments. I am honest but not offensive. I explain this because many arguments are moments when it doesn’t do any good to be unfiltered. Honesty is one thing, but sometimes it is most productive in an argument to respond, or not respond, a certain way.”
This lack of filter is a neurological condition that everyone I’ve ever met with a brain injury has experienced. It’s called Pseudobulbar Affect. Look it up. When I was lying in a hospital bed 85% dead, I was told that I was being mean to some visitors. The months following my stroke when I was about 60% dead, I was frequently told that I was saying inappropriate things, and that I needed to change the way that I interact with people. A few years after the stroke when I had improved to about 45% deadness, some of the things that I said during that time were brought up to me as examples of how mean I was and why some people didn’t want to come see me. I was told these things by the people closest to me that were supposed to love and support me the most. I was told these things were a problem with ME and not a result of the absolutely horrible, devastating medical condition that had just taken over my entire life.
This meanness, this “lack of filter,” this honesty, this saying horrible, racist things like I did, this inappropriate laughing or crying is a neurological condition that CANNOT BE CONTROLLED. It’s the weirdest thing in the world and utterly impossible for someone who has never had a brain injury to understand. Just impossible. To try to explain to someone that you actually can’t control the words that come out of your mouth is completely incomprehensible to most people, I understand that. What I don’t understand is that no one in my life at the time took a few minutes to read a GD article or two in order to try to understand why I was acting like this. How selfish of me to think that at the absolute lowest, darkest, and most vulnerable point of my life that anyone around me would try to increase their knowledge and learn how to better deal with my behavior that I COULD NOT CONTROL.
If you’ve stumbled onto this blog, it’s probably because you yourself or someone you know and love had a stroke. Please read about PBA and – you won’t understand it, but you can educate yourself about it. The last two abstracts I have linked mentions that damage to the cerebellum in and of itself can cause de-regulation of emotions, so I have both issues, lucky me!!
One major thing I learned the first few years after my stroke is that depending on who you talk to, you’re going to get an incredibly different impression of life after stroke. There is a gigantic difference between talking to someone that’s years out and someone that this recently happened to, whose life is newly devastated. Giant difference.
I received an e-mail a few days ago and it made me remember how helpful this place could be. Talking to me, which I will be glad to do anytime, is going to be a lot different than talking to someone in the midst of all the hell. Not that I don’t remember the pure hell that was my existence for those first 2 years after the stroke, but I’ve worked INCREDIBLY hard, I’ve done A TON of research, I’ve not taken crap from some people and cut some people out of my life that were hindering my recovery and I have managed to get back to a quasi-normal life. I got married, just celebrated my 1st anniversary, got back to doing a job that I love, and am going to move to sunny Florida very soon. Things are good.
I’m way past those initial feelings of utter hopelessness. Those first couple of years post-stroke were absolutely horrible and often when I think about it I’m shocked that I voluntarily stayed in this world. But I did. The hell stops, life gets back to quasi-psuedo-normalness for most people.
I wanted to write this post for the person that e-mailed me and anyone else who is newer to the trauma. Connecting with others going through a similar thing helps a lot. For me, it was really helpful to talk to other younger people that this happened to, whose lives were turned upside down and inside out at a young age, I was 30 when it happened. It helped.
Here is the e-mail I received…..
Do you still use this blog? I wanted to contact you because my husband had a cerebellar stroke that affected both sides of his brain also. He has been in the hospital for 2.5 months already. He has a long road ahead of him. He’s 37 years old and we have a one year old and a three year old. This is so hard my world has been turned upside down.
I hope to hear from you.
I can give tons of advice, but it won’t be the same as talking to someone in a similar phase of “after-life.” Anyone out there think you’d like to connect with this e-mailer?