Stroke Survivors and their Families
Tue, Apr. 30th, 2013, 03:40 pm
janetj92: Hi all!
Hi, my name is Janet! I'm 20 years old and going to college, majoring in Nursing. I had a stroke when I was 18. I'm looking for people who understand my challenges in life with having the stroke. I'm welcoming all kinds of people, though. I will try to talk about my day and other things besides my 'stroke challenges'.
You can add me and I will add you as well! :)
My name is Kelsey, I am now 18- I just found out about live journal, I wish I had known of it sooner.
When I was 14 years old I suffered a major right sided stroke and I struggle with many day to day things.
I am extremely fatigued, I have left sided weakness, and suffer from depression and suffer from extreme dystonia.
I understand my case is very rare, because I am still so young, and it happened to me even younger, but I'm wondering
if there is anybody out there who shares my problems and struggles everyday as well.
It doesn't matter your age, I'd just like some support.
I don't want to sound like I am complaining either, I am not.
I am a stroke survivor, and I am proud of it.
There wasn't a community geared toward being supportive of those affected by frontal or temporal lobe brain injury, so I recently created one.
Here is a synopsis of the community:WHO
is this community for? People affected by frontal or temporal lobe traumatic brain injury (tbi) in one or more of the following ways: has a frontal or temporal tbi, interact with someone who has that, relevant medical professionals, students, and those simply interested in making a positive difference in the lives of those affected by that. WHAT
are this community's goals? Bringing individuals together to communicate with each other, discuss relevant topics, and share resources, support, and inspiration.
The community is located at http://community.livejournal.com/front_tmprl_tbi
. I look forward to seeing you there. If you have any questions, please feel free to drop me a note.
Sat, Sep. 12th, 2009, 06:21 pm
It has been 2 years since my stroke, it happened without any warning, when i was 22 and i still have my moments of sadness. The stroke affected all the right side of my body, i even lost the sight on the right eye.
I still do physical therapy, but the most challenging aspect is the hand, i lost every function of it, i can't hold things between my fingers, only with the whole hand.
Do you know any exercises to improve this? i try to grab small objects as a therapy but it is been so slow!! Also, i lost the sensibility, do you know of anything to recover it?
This is probably confusing and otherwise incoherent but what the hell!
On the one year anniversary of my first stroke.
After a several month period of basic denial followed by couple of more months of emotional denial (actually accepting things, rather than intellectual understanding them), I got several months of depression. At about the start of the year the depression eased up and I starts some moving a head. Being basically trapped in my house is not a good morale builder, especially when pretty much nobody comes by to see you (Jehovah Witness stopped by more then anyone else).
It is very important, I think, that there is plenty of friends and family support following a stroke. It really does help even if it isn't exactly what you think you want. The need for socialization and interaction with people is important to the recovery process. The brain is a tricky little system. It is very capable of doing some amazing things to convince you of things.
Though my physical limitation or challenges as they may more properly be called are not to bad compared to many who have had strokes. They are nonetheless challenges. During my denial periods, apparently I did every thing possible to make my are and leg work normal. This took a great strain on me. After about three or four hours I would literally crash, I would need a half to an hours nap before I could do anything. Curiously, when I would wake up I would have a whole different set of issues. Since then, I have accepted that there are problems and I did not escape as lightly as I would have liked to believe (or wanted to believe). Now, while I still make myself seem normal (as much as I can), I find the allowing the leg to drag a bit at times doesn't leave me exhausted. Walking still tires me out quickly, whereas riding my bicycle doesn't. I guess this has to do with what exactly is damaged.
I also have lost a lot of manual dexterity skills, I decided to replace the rocker panels on my jeep for example, while I remember welding, I remember rules of welding, my hand does not know how to weld. I was worse than the first time I welded and still have not achieved anything better than crappy welding. Thee are a number of such lost skills but as I find them I try to work on them.
The place where I really have more issue is on the cognitive side and those are slow to recover. I have concentration issue, short term memory problems, long term memory holes, and several different language related issues, though I tend to speak well enough, it is the writing that I have problems. MS word really does stink for trying to figure out words you are trying to type, Google is much better at it. It is rather annoying knowing a word but not being able to type or say it. But once I find it I haven't noticed the need to good look for it again the next time I need it, that is good. I keep at the work of recovering or relearning as the actual case maybe my ability to write coherently, something as a dyslexic I struggle for year to achieve.
A side note on the dyslexia and denial, early after the stroke I noticed that there were problems with my writing, some of which are similar to the dyslexia. My masterful brain decide that it was just that the stoke (TIA is what I considered it then) may have just kicked off the dyslexia again. This wasn't the case the problems cover far more ground, but interesting how you can convince yourself of things.
The vertigo that was afflicting me and preventing me from driving, is mostly gone finally. I used a technique that help me (your mileage may vary) that is actually for people with inner ear drum problems. It is a desensitization training basically. Cawthorne-Cooksey exercises (modified 1995) might be worth looking at if you have a vertigo problem (may not help either). So in March I got to start driving again, curiously again, the day my Doctor gave me the Ok to drive, he also told me he was leaving the country to spend more time with his wife's family. He hasn't left yet, but I thought it was funny. But now I need a new doctor, they are so hard to break in.
Coming into this month I hit a major depressional slide that lasted about two week, with lingering effect. There was some external stress that probably played a part, but I thing this month just have very negative factors (like two strokes). I do expect to probably have at least a few more occasion of depression, better to be prepared.
Happy Holiday, Merry Christmas, or what every works best for you!!!!
And BIG thanks to everyone here, sometimes it is very difficult to get family and friends to understand what is going on with you. Thanks for time, the understanding and the input through out the year 'and to all a good night'
National Hug Your Caregiver Day Initiative
Caregivers are the backbone that supports our society. They come in many shapes, sizes, and focus in many different areas. Everybody knows caregivers. They can be parents, spouses, family, friends, healthcare providers, massage therapists, chiropractors, nanny's, babysitters, pet sitters, or anybody else who has taken care of another living being.
Caregivers are also some of the most ignored and taken for granted people in our society. These people dedicate part of their lives, if not their whole lives, to caring for others. And yet, they are often touch deprived and feel under/un-appreciated.
Started in 2008, the National Hug Your Caregiver Day Initiative is trying to raise awareness about caregiver appreciation. We are helping people learn to show their appreciation for the caregivers in their lives.
Join our yahoo group at: http://groups.yahoo.com/group/hug_your_caregiver_day/
Use this blog
to share your stories about caregiving, or to share your stories about a caregiver who is special to you.
The website is being created and will be going live by January 2009.
"Smile! You're getting hugged!"
my names Renee, I'm 19 and live in Ontario Canada. I haven't had a stroke, but, my Mom has had two in just under a year. Her first on October 19,2007, and her second three weeks ago today, October 9,2008. She's currently still in the hospital. She was just recovering nicely from her first stroke.
She was unable to speak, however, her talking has gotten a LITTLE bit better. She can say one or two words here && there, though, she doesn't do it often because it takes a lot out of her. She can't swallow either. She's on a gastric feeding tube. She WAS on an NG tube, but she didn't like that, so they put in the gastric one, it's currently infected, and oozing, but it's getting better - so right now, they're not using it, they're just trying to make it better so it isn't infected.
So they're feeding her through a needle in her veins in her arm.
I guess there's no real point to this, I just wanted to post & say Hi.
Happy birthday to me. This being the six month anniversary of the second of my strokes, the one that almost did me in.
I Have not come as far as I would like, and I am much further back then when I started.
Meaning that, I didn't really accept many things that effected me in the early months of recovery.
The lower level of impact of the physical side of things probably help me avoid the issues, cognitively I am still a mess, even though to the amazement of many.
So Hello World, and Bite Me I am still here.
And Five reason to look forward to the day:
1) I have books to read
2) I have things to relearn and holes in my memory to fill
3) I am alive and the means hope
4) I have writing projects to make headway on
5) The marked hour will pass and I will still be standing.
Stoke number one six month anniversary, T minus eleven days and counting for number two.