Thanks Cap. I have heard that anywhere from 50-60% die where they fall. Then there is, as we all know, the consequences of surgery. While it's nice to make it, I guess I'm still working on the character.
G.
Greg,
It is good that you have a support system. My family is gone except for my 86 year old father who is extremely caring. I was the one who was the publisher before my AVM bleed. I was also an avid runner. Now i’m in a wheelchair without a job, money or friends. It hurts, it stinks but we have to deal with it because no one else will.
Linda
yes theres things u can do. im not sure what handicap u would have from your AVM, but theres options. ie, in the UK, i went back to college - due to y disability, i did not have to pay much. When i did my first HNC, the university paid me a brand new PC, plus a recording device suring lectures. There was no way i could be able to do work and college at the same time, but at least they gave me help. I dont know if the USA offers for similar things, but well worth it.
You have many years yet - 15 years or so before you retire? And theres akways plenty of mature students in the UK college/uni.
Contact your local University and see what they can do.
Hi Greg,
It sounds like you have put some thought in finding a different line of work that interests you. I've also thought about changing careers, but I also worry about my age and if the expense of an education would pay off.
Soemthing I have enjoyed doing in the past was working at air shows. They are fun events to work at, and that type of expereince could give you contacts and experience that could help you transition into another career.
Best wishes,
Debbie
Hi Deb,
I agree with you but our age is what it is. It's an obstacle, no doubt about it. I have found that when transitioning to a new career, being in my 40's doesn't help.
I find I am either under-qualified because I haven't worked in a phone center for the last so-many years, or I'm over-qualified because I've been a captain for so many years. I'm always 43.
As for more education, that's all I feel I can get, now. At least, mentally, I'm still put together. So a new degree. But in what. Health-care of some flavor? Occupational safety? I have a safety background, just not what employers are looking for. Health-care is a growing industry. Either way, now practical experience so another degree is all I'll really have.
Try not to worry about your age, there's nothing to be done. Go for more education, have you thought about an on-line degree? That is how I expect to continue my education.
Be well.
Greg
Hi Linda,
My thinking is and I'm sure you know this, as support systems go, there are better but here we are.
G.
Scream,and kick all you need to do. It is the best therapy. I have CCM , I am 65 yrs old, husband, father, grandfather. Loved to surf the ocean was were I found my spirit. My line of work was managing a circuit board shop building the bigger and better technology for all to enjoy. 2003 changed came in the door. Our daughter has CCM, our Son has CCM and my brother has CCM and my mother before she past had CCM (cerebral cavernous malformation) they are genetic and mutiples in our brain and brain stems. My daughter has had brain surgery and I have too and my mother had surgery in the 50's before they even knew what this really was. When the puzzle came together for our family in 2003 alot of F bombs flew out of my mouth. Felt cheated, felt alone, couldn't find anyone or physician who knew what this really was about. Then I found this site, physician, treatment and some peace to move forward..We have all felt your pain and sorrow and lost. Some more then other's as you can see in the 'In Memory of" section. I leave you with this. Get the best physician, educate and know this disease for what it is and not. Don't let life live you Live Life every moment of every day and surround yourself with love , laughter, joy. Remember the ways will overwhelm you sometimes and we are here.
Greg/Deb, yes its a worry, everyone would be nervous starting a new career. But what else other alternative do you have? So its worth having a go. You have nothing to lose at least by contacting your local uni, or your job centre advice. Like i said, when i started college again, i tried to do general IT - but i couldnt get into the programming side of it. But by hook or by crook, i managed to get something i really liked.
And yeah, an on-line degree could be great for you Greg. Who knows? Maybe there could be something you really enjoy, theres plenty more stuff out there.
Just for the time being, you could do some volunteer work. Ok you dont get paid for it, but it can be rewarding doing some volunteer work, it really can. Helping others, going outside, meeting a few people you wouldnt normally do, can be very satisfying.
Greg,
Nobody is “good” at it. It’s ok to rant here (as everyone has said). It’s frustrating to say the least going from a pre-AVM life to well like others said. It just sucks. I was very active pre-AVM, scuba diving (Cozumel was awesome), soccer, weight-training, racquetball, mountain biking, motorcycles, etc. to being told because the AVM was in my cerebellum my center of balance was effected and my balance sucks. Guess what tied all those activities together?
Bottom line though, my AVM journey started in October of 2006 and since then I’ve been able to do a lot of things. Prisms helped (and still do) my double vision, I received an MBA online in 2010 and working on another Master’s right now. You can do this. The best advice (and there a lot of wonderful people on this site that have said this as well) is to be as positive as possible as much as possible. When you just can’t and feel down, rant, cry, scream or do whatever you have to do to feel better. While all these journeys are different, we’ve all been there. You can do this. :J
Hi Greg,
Sorry I didn't get back sooner. I hav limited access to a computer, and I was sick yesterday.
I'm significantly older than you (54) :D I have tried going back to school twice in the past few years. I first went to get a minor in martkeing several years ago. While I did very well in my classes, I felt a lot of resentment from the other students, and I know that a lot of people in the marketing/PR field have lost their jobs recently. My ex-husband lost a job he held for many years. Fortunately, he found another one, but he had to lie about his previous income and took a pay cut to get another one. But now he's making more than he did at his last job.
A year and a half ago, I took a short-term course in EKG interpretation. I did well and started a nursing program. At the time, I suffered from tremors. I was in a chemistry class, and I couldn't hold test tubes without my hand shaking. For the sake of myself and everyone else, I withdrew for health reasons.
I plan to take a vacation shortly and will make time to get in contact with someone at a local community college to see if there is a program where I use my ability to read EKGs.
Forgot to mention last time that safety management is a field that hires a lot of people. I presently work at a university, and students seem to get jobs quickly upon graduation.
For me, it's not crucial that I get another job since I hae one already. But the AVM expereince has made me feel like I need to do something else with my life.
All the best,
Debbie
Hi,
Sounds like you're doing what you can. You mentioned, at the end of your reply, that you feel like you need to do something with your life. Perhaps volunteering?
Good luck and be well.
Thanks for your reply.
I have done some volunteer work, and it does help. Most recently I have been buying school supplies for social service agencies. That's something I've engaged in for years, and it makes me feel better each year I do so.
My dissatisfaction with my position goes deeper than that. It's something that I'm not comfortable explaining in a public forum.
Again, I appreciate that you hae taken the time to answer my responses.
Take care,
Debbie
Hi Rich,
Thaks for responding to my comment. I saw where you had decided on graphic arts as a new career because of aphasia issues. I had difficulties with that for awhile, and that was one of the reasons I didn't pursue marketing or nursing any further. The aphasia has abated somewhat, but when I'm tired, it's difficult to speak.
I don't have the talent for graphic arts, but I appreciate those who do. I've acquired some graphic arts skills recently throgh my participation on a website where graphics are highly encouraged to accompany written responses. I've used Paint in Microsoft Office and some online tools to make collages and edit pictures.
Glad you found a career path that suits you.
Take care,
Debbie
Hi debbie, Im not sure about "I don't have the talent for graphic arts" - theres always a way, using the magic of computers! Odd really - when i did my GCSE for art, it was my worst subject lol The best program for graphic design is r. You can make some very nice art.
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Rich,
Those were really beautiful designs you shared. I've learned that one can do a lot with all of the graphic design programs out there. I've sort of glad that ai have been pushed with the online group I'm in to expand my computer graphics skills.
Take care,
Debbie
Rant away. Thats why were all here. We all got a pretty crappy deal.
Hi Greg-I was actually looking for a thread originated by Rich regarding jobs or working with a visual or non-visual disability-something like that, but I didn’t find it…so you’re the lucky recipient 
As life moves along, and we might want to board that train as we once were able to (this is just figurative-yet literal for me, too); however, nothing is quite how it was before. In the meantime of adjusting, for those able to work at a “corporate” job, here’s a link that I came across: