I am back at work full time for almost a year. I do try to cook my old recipes and I have to look at the recipes each time..but at least they come out pretty good. I love to garden but it takes me longer to get it done. I also play gamesforthebrain.com which is free to help my memory issues. I also volunteer once a month at a no kill cat shelter called nine lives foundation. I love to read both non fiction and fiction. I am taking some free courses online from https://www.coursera.org/
They have all kinds of classes and they are all free.
I used to knit and crotchet but I need my shoulders rt cuffs operated on. I do want to learn piano so I am saving up to buy one. I would be interested in a book club. Thanks everyone for sharing what they do its great to see what we can do!
I like to make cards out of old family photos. I am going to start PT again next week to hopefully help my balance issues and my left leg weakness from my stroke 2 years ago.
Angela
That way, you have very patient models, right? Love the photos!
Angela, what kind of work do you do? I just have no idea how I can be useful to anyone, I get so confused, I'm slow and uncoordinated, and get headaches and shake when I get tired. I feel totally at sea. I want to be able to work again, just to get out of the house and not feel so...I guess useless.
I started doing a radio show from my home. With the technology today it can be done. And it gives me a real purpose sharing with folks every day.
I paint :)
(in watercolours)
Hello Cara
I work for a mutual fund company and support and develop trading systems for trading as a product/project person. It partly a relationship manager type role where I talk the tech talk to the people who program and then talk the trading talk that the Portfolio Managers. Problem solving is key. I love all the people I work with except my boss who is a complete jerk and never even called me when I was out and did not want to process my disability even when I was in coma!
Luckily my friends at work went over his head. I am still not a fan of him but I basically ignore him and have a lawyer on retainer just in case he tries to move me out of my job. I know he thought I would quit but there is no way cause one this economy is terrible and I have worked for the company since I was 23 and worked my tail off to get where I am in the company.
I had a stroke prior to my fistula and I was pretty messed up and was out on medical leave. My stroke neuro doctor did not expect me to recover from the stroke for three years and that was before the fistula. The doctors found the fistula about seven months after the stroke and had surgery about ten months after the stroke. I was back to work part time in 14 months after my stroke. The doctors were amazed. I think for me it was good to take my mind off the pain by working. It also provide a strict schedule for sleeping & eating. I went back to work full time in 18 months. Now I was 43 when the stroke happened about 2 years ago which was in my favor to have it young. I am super lucky that I dont have perm brain damage and that my husband quit his job in another state to take care of me. He did everything organic and everything was home made. I also feel like coconut water helped and still does help my brain when I am feeling foggy etc.
Cara you might want to try volunteering once a week for a hour and see how you do. Build up your tolerance up and your confidence. I love animals so I volunteer at a no kill cat shelter. I do think that getting out of the house and having a commitment very week does take your mind off the pain.
When I was recovering I would make myself get out the house every day even if I just walked to the end of the block or to the mail box!
Make sure you listen to your body
Angela
I like to work on in my garden.
Hi Ben! I believe you have to do what's in your heart. I took 6 years of classical and opera voice lessons many years ago, but was always too shy to sing in public. After my brain surgery for the AVM bleed, I decided life is too short to be shy, and music helped me get better. So my husband convinced me to try karaoke. I would never have done it before, but I'm really loving it. Now he has all the music and equipment and we run a local karaoke show. My short term memory stinks, too - but with karaoke, the words are right there. I think it's helped my memory, my confidence and it's been fun. I started singing with a keyboard player who heard me at karaoke, and at one "gig", a scout from America's Got Talent asked for a CD, and now wants a video. Who knows!?! I'm 52 and disabled, but I'm not giving up on my dreams!
Good for you husband! :)
Wow!... Opera?.... I'm familiar with the control an opera singer must have of their larynx and their breathing. Not to mention how they must project their voice. My hat is off to you. Good for you for not giving up on your dream (smiles).
I know a woman who always wanted to visit Ireland. She's 82 years old, and she''s going next week with a family member for a vacation. It goes to show us....There is no time or age limit when we want to pursue something.
Ben
Hello, as most everyone who survives this AVM ordeal, I have some good days and some very bad days. You can really never plan too far ahead for what you are going to do 3 days from now. It is quite frustrating but God has helped me cope. I was in the middle of my nursing education training when I was diagnosed with an AVM in right cerebellum, the fix to my malformation became evident to me that it was going to be ongoing and very complicated. I managed to complete nursing training, I now have an associates degree in nursing with a minor in psychology. However, the AVM goes thru my brainstem and remains even after numerous surgeries and Gammaknife treatments. I have many moderate physical and mental disabilities that prevent me from working, especially as a nurse. On the brighter side of all this, I have always enjoyed crafting and I use many different mediums; fabric-sewing and quiltmaking; painting-airbrushing, oils, acrylics, and watercolors: jewelry making: polymer clay and glass beadmaking; leatherworks; etc. I have realized working with these materials on different projects is very thereaupeutic for me; helps with the motor skills and psychologically aids me to improve concentration, thought process, and even helps me to forget about the pain (somewhat). Don't misunderstand, the problems don't go away but they at least become less extreme and when I am finished with a project I feel as though I have accomplished something; that I am not just a burden to everyone and taking up space. Now on really bad days I don't do as much, but I hope for the good days to come.
First off, I'll piggyback on your activities.
My ToDo list includes converting family VHS tapes to DVDs. I just got some equipment to try it. I want to create interesting slide shows of our photos (need software first). I use Pinterest for cooking ideas and teaching resources. (I hope to go back into the classroom.) So, for now, it is relearning how to cook and making all our meals which might take me most of the day. I tutor in a local school once a week. This is such a great way to spend time, by the way! If you have a particular skill, help a classroom with your ability. Read with a young child, shelve library books, read older students reports and essays giving feedback. Email an older student to encourage them through these years. I am so lucky because our community has transportation so I can go to schools. As the weather warms I look forward to going to a local coffee shop for coffee and looking at different walls! I go to a gym for exercise and often have to nap when I come back so that also fills the day. I "play" on Luminosity.com to recover skills and take advantage of my time by doing family research on Ancestry.com. The next step might be to join a knitting group or book club to work on multitasking and spontaneous conversation. Can't wait for others to respond!
Hey Laura,
I use "Memories on TV" program to make a slide show of pictures with/without music on DVD. It came with my "photo explosion" program.
Ben
I'm on the computer a lot! I like to play games. Games with friends are my favorite type. I still feel competitive.
Ok, I have to add to this. Great discussion Ben! Most of my time is on the computer (like many of you) because it facilitates so many things like shopping (free shipping is it), communication (email and chatting), reading (cyber texts… ok I had to throw school in there), pleasure reading (I have an audio CD of a book in my puters CD drive right now), keeping up with my daughter (or trying to without being a stalker), and of course going to and contributing to this wonderful site. In addition, I workout at Gold’s Gym doing free weights and the treadmill, record and watch some stuff that makes me laugh on TV, travel on occasion, and organize AVM get-togethers, take care of my geriatric furry (she’s about 17 and believes I am here for her). But what really takes up my time (but I’m not complaining) are my parents. Yes, I live with them (it’s called the Suzy plan) but without the AVM (and a few other things on my journey) I would never have been given this opportunity to see things from an adult perspective. Dad has Alzheimer’s and endured a winning bout with lung cancer and mom is a Master Gardener (you should see the backyard). But theirs is a very traditional relationship in that they adhere to traditional gender roles in which the wife is submissive (but mom would argue this), cooks a lot, takes care of her husband, and he…um…takes out the trash. He used to fix cars in my youth (learned a lot of Hungarian curse words that way), build stuff, and pretty much do anything that required physical labor, but not so much anymore and I’m sure it’s bugging him. The recent political debate about same-sex marriage and the financial necessity of dual-earner couples has thrown a serious wrench into the traditional gender role thing. Oh yeah, I’m gay too… another wrench. Almost forgot ;)
I go to a centre which is speciffically for people that have had a stroke or brain injury and are trying to get back in to work ive been going there for over 3years now since i was 18 and hopefully im going to start college in September xxx
Hi, Suzy, I was wondering how you happened to learn so much about patience and understanding. Thanks for sharing so honestly about your life. I for one welcome marriage equality.
Thank you for the kind words Dancermom (at least I took it that way). Patience and understanding? It's called anti-depressants...lol. Seriously, I believe very strongly that each and every one of of us (including those with and without AVMs) are on our own journey. Of course it's difficult and trying. But you have to keep on and learn and grow. That's the the human element. It all centers on how you choose to look at it. I choose this way :J
And as far as marriage equality goes, I want to see same-sex divorce as well. Wouldn't that be something?
That is so inspiring, Kat! Good for you!
Hallo Ben,
since I have my disability last october its very new situation for me. my love was running (cross country) and dog sport, and beeing in the nature with my fampily every minute. so its suddenly new, to be paralysed and cannot move. first I only looked TV, then reading books (game of thrones....) but want to play the piano again (like I did years ago) and painting. the only real "victim" is my dog, he cannot believe what changed :-) (working as programmer, so I dont like the PC after work....)
Regards!
Michael
I have a small timer that I start when I turn on the stove. I keep it in my pocket to remind me. I am religious about starting it and if it goes off, I immediately restart it, even if I intend to turn the stove off right then. I have it go until I turn the stove off! The forgetfulness is aggravating!