Very interesting post Lee. That serves our (completely non-official) theory that the best consultation about strokes comes from a group of survivors who are interested in sharing information, rather than one particular doctors experience with what stroke survivors have been telling him/her.
What is most common between us is our differences in recovery. Each of us gets their own bag of tricks to overcome. While each of our bags are different in content, they are all made out to the same fabric. They are all familiar to each of us.
Nancy, I have heard you ask when the good comes out of this, and I really want to answer that question for you. I would say it is when you realize that you have re learned... done the impossible from where you are right now. Arm wrestling with that arm that is not able to serve you today. So, pick a few things you really want back and get them back. Check your list every three months for signs of change. I like the three month plan for progress. I still have realizations about new things I have learned, I wish I would have written them down as I realized them, that would have given my confidence a boost, seeing a list of little accomplishments. That is how things have come to me, in very little pieces, which is why I encourage folks to keep their eyes on the tiny things they love. Things do not usually change in huge amounts, rather tiny little changes that are worth seeing unfold.
I am sorry I do not have the typical strength, I have become very anemic with my recent relapse. I have gone from sleeping 8 and waking for 16, to sleeping 16 hours a night. It is quite shocking to me. My writing time has suffered. It is so nice to get one good post off. Blessings to you Nancy
Something I forgot to mention is that it seems like most of the major milestones are reached pretty early on, which may contribute to others remarking the overall speed of your recovery. But, alas, it's not fast. It's only that big changes are very apparent. In fact, progress is glacial. But it continues (well past the initial 2 years).
What I always try to do is focus on one thing to accomplish. Once that's finally done, move on to the next thing. That approach may not work for you, but it does for me. Whatever seems to work for you, do it.
I can still see progress after 8 years, I am expecting it to continue throughout my lifetime. I still have a lot of things to do! I still cannot cook without great confusion, almost panicky and exhausted by the time I am done...but I am working on that. I still feel uncomfortable driving by myself, actually getting lost in my own neighborhood twice yesterday. But, I take it all in stride, and laugh at myself all the time, another thing that takes time to develop.
I clearly remember one day when I realized that I could not think, I would have a thought, that would disappear and I could not get it back. I couldn't remember anything long enough to make a sentence. I remember thinking I would never be able to draw or paint or write again, for sure! I could not keep an idea together. When I did begin to try, what I saw was foreign to me- not my art, not my writing.
The only help I can offer is to use your watch, and set a time limit. For me, it was about 20 minutes. When the time was up, I was finished, no matter what was left on the plate. Now, my wife thinks I am too thin, but that's a totally unrelated issue. It has more to do with my teen-aged daughter being on a diet - so everyone here is also. Maybe, I'll just have to be more of a pig . My sense of fullness finally returned in year 7, I think.
I love and have greatly missed our little place in the country. So a couple of weeks ago we went for an overnight to see how it worked.Now we are going for the Easter weekend.Yippppeee. It will be quite a while before I can stay on my own...but it will happen eventually.
Today I paased my field of vision testing and perceptual testing with flying colours at OT. i will happily accept small goals as long as progress continues to move forward towards my bigger ones (and it is).
Yesterday I felt like Dorothy in the wizard of oz but without the red slippers to tap together to go "home. interesting comparison.
Blessings and goals to all,
Nancy
Last edited by ennbee; 04-18-2011 at 12:25 PM.
The following user gives a hug of support to ennbee: Positive Cynic (04-18-2011)
My stroke - hemhorrhagic, cerebellar - was March of '03. It's weird, I can drive just fine, but have trouble writing. It's legible, but painfully slow. If someone asks me to sign my name, it's almost like I'm writing a book. Mortgages? Forget about it. Cooking, for me, is OK. Peeling apples is a challenge! I used to cook all the time. Now, I like eating! I still cook a bit though.
Lee
The Following User Says Thank You to lmorgan79 For This Useful Post: Positive Cynic (04-18-2011)
Hi Nancy,
Great to see you again. I am glad you are getting out, though I totally understand how hard it is. The red slippers is a great we to think how you feel. There is real nothing better than home. I could not go out of the house for a long time and when I did I felt afraid. I don't know why. I just didn't want to leave the house. Well it has gotten better after awhile, but I still don't like to leave the house.
My wife's mom and dad just retired last year and we always went to see them every July 4th. Well, the first year after my stroke, they just build a new home that was lovely and had a 50 anniversary reunite. I could not go. I love her parents like my own, but I said I can't go. I need to be home. I could not be home for 10 days and all of the people that were going to be there everyday. I used to be so social, but I knew that it would be too hard for me. So that was the first time Anita (my wife) went to see her parent's without me. I felt so guilty, but I knew I could not do it. Especailly being with alot of people for a long time bother me. It is like too much to handle. Our brains get on over-load and you just want quiet.
Anyway I hope you have fun. Just know if you don't feel your ownself and feel weird, I would say that that is normal from having a stroke.
HI Lee,
I just wanted to say that I have read all of you new posts (I think ) And I am glad to read your input. I learn something new every day about stroke survivors.
I didn't know that you are a guitar player? So am I and wrote music and had a studio. I wonder if we should start a "musicians stroke" thread. Because my loss of my music probably killed me more that anything. It is coming back though and everything is good. but I bet there are a lot of musicians that had a stroke and to loss that love is really hard too.
Just I thought. If you think it is good let me know and I will start it, or if you start it then I will know it was a really good idea.
but have trouble writing. It's legible, but painfully slow.
I know what you mean! Those fine motor skills take a long time and much practice to recover. My writing is a mess..illegible scrawl, crossed out words etc. Thank goodness we can do nearly everything online these days! If I had to fill out long forms by hand it wouldn't be pretty. If I have to send a birthday card, it's a major project for me and I feel like I'm in second grade again, having to concentrate so hard on just forming each letter.
All I wanted to be able to do was drive again. The feeling of getting behind the wheel for the first time alone after the stroke had me as excited as when I first got my license so many years ago.
Well said. We did try to talk with her about it...nothing changed. Same old same old. It was an emotional relief to finish and "graduate" (haha). Graduate meant something different to me.
I have a question, and a comment for you. After my stroke, I couldn't tap my foot in time with music to save my life. Luckily, that skill returned. It returned spontaneously. One day I couldn't do it at all. The next day, I could do it. I played saxophone (alto and baritone) from the 2nd grade, through high school. Thatinstrument I was good at. The guitar, not so much. I play just for personal entertainment, or to disturb my daughters. If I really want to make them mad, I'll sing too. I figured I'd learn mandolin,too, because it is so small, and I need help with small motor coordination. It only has 4 strings, so it has entirely different chords than a guitar.
Music is a great therapy tool (device?) because it forces you to keep the tempo, or fall behind. It doesn't wait for anyone. Anyway, I'm all for getting a stroke survivors music group going. I never seem to be able to tell where I'll learn something from.
Another hobby of mine is stereo, and vinyl records. I bought my big-rig stereo before I got married (I'd never be able to afford it these days). I also have about 10,000 LP's too. Those get spun on a regular basis. So, I am both a hardware, and software guy. Of all the LPs I own, I have every genre, rock, jazz, blues, country, classical, swing, but no rap.
My other avocation is semi-work related. I spent 20+ years in the telecom industry (I installed the phone systems for Northwestern University, Northwestern Memorial Hospital, and others too). We phone guys used to laugh at the haphazardness of data guys. We were always so persnickety about things. Everything had to be just so. Data guys never were like that. I wondered what would happen if I were to cross-pollinate those skills. As of this writing, I can make a PC jump through a hoop. I can also design web pages, having taught myself HTML, and CSS. I don't do it often enough to be really good at it though. At least I'm trying to keep busy. Ah, well... Dinner's on. More later.
Lee
The Following User Says Thank You to lmorgan79 For This Useful Post: Positive Cynic (04-18-2011)
For me, driving has definitely given me a sense of freedom. Nothing did it like getting on the highway for the first time. I did wonder, though, how many people worse off than i were on the road too. I also thought I'd leave a path of dead, and maimed humans in my wake. It never happened. I'll probably jinx myself, but I haven't even been in one accident.
Quote:
Originally Posted by ennbee
Mine is having trouble in the opposite direction. Nothing interests me and 3 bites and I am full.
I am not sure what would make the most sense for you. Maybe try to eat something that you used love, like Oreos, for example. I'd try eating a little more each time, to stretch out the stomach. I spent a few months eating liquid crapola out of a tube, so real food was ingested greedily, even if I didn't have the capacity. My yawning pre-chewed food all over must have been a real treat! Now, my appetite is second to none. My ability to eat is unsurpassed. If it's not moving, I'll eat it.
lol goood post. I have tried old favs and new. I will just keep on trying lol. Andrew despairs as dinner approaches. He has a great appetite for anything.Just the sound/look/smell can put me off. I remember well having "thickened food in hospital made with their best leftover wallpaper paste. Then it was A.B.C Diet (already been chewed). haha
my best to everyone today
With every good wish,
Nancy
Thickened food sucks like new Hoover. I had problems swallowing, so a thickening agent was added. I have no idea what it was (camel snot?), but it made swallowing the actual food more disgusting. I think I'd rather have a coughing fit. Besides, half the food it was added to was thick already.
. My sense of fullness finally returned in year 7, I think.
) And I am glad to read your input. I learn something new every day about stroke survivors.
I am happy to laugh. that is so funny. I'm glad we have some jokers out here 
