Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Sunday, July 31, 2011

Unraveling?

Starting to wonder when it's safe to stop this whole routine of exercises without reversing? I have experienced great success in rehab and working my "at home" program. I was very enthusiastic doing everything a zillion times or more...I got better and then I thought I could stop. WRONG!! In the past few weeks I have noticed changes in my vision and returning spasticity(tight/sore muscles only on my left side). It's so frustrating because I thought I was done with all of this; I guess not yet. :( I just don't know when it's safe to go about my regular life. At least this time around, I know what to do because now there are no therapists to get me back on track. I started the nauseating eye exercises again, and am as disgusted as ever. I am most concerned about a possible unraveling of my cognitive function. That was the hardest to regain and I wouldn't even know where to start fixing that animal. So the big question is how long does all this go on for? Please tell me it's not forever!! 

4 comments:

  1. I'm still doing home exercises seven years after my stroke. However I have thrown a lot of home exercises in the waste basket because they are not anchored to something I want. See my post called Home Programs Are Like Dieting. For example, it doesn't do me any good to be independent in driving if I can't zip my winter coat so I am highly motivated to do a daily exercise to maintain the strength of my tip pinch. I prefer to spread my exercises out throughout the day. My life is too buzy for me to set aside a whole hour for home exercises. I can tolerate exercises if I break them up into 5 to 10 minute segments. Give yourself permission to get creative.

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  2. Thank you for sharing. I think I'm just ready to be done with this whole tramatic experience and its kinda hard to be done with something that is never really done. These exercises are a constant reminder that I'm not right, fixed, or done and I want all of those things. So be it, another beautiful day to relish, to exercise. Thank God!

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  3. Hang in there, things will keep getting better. It just takes a longer time than one would believe possible. My physiotherapist said that I needed to realize that I had worked hard to make such good progress but that it would be necessary to keep working hard to maintain them. No Choice.

    I don't really think you loose the cognitive skills once you get them back, but it is shocking how often I come up with new weird little "glitches" that still need work. Keep working on learning and having an active mind just in case.. but how can you do any different with a little powerhouse like Jack to keep up with?

    Actually Elizabeth, I am still really working consistently at my physio exercises but I am trying really hard to diversify with "active living" so that exercise is part of the family fun, and also fun with friends.

    For example I went geo-caching (hiking at a provincial park looking for clues with a GPS unit) with my 26 year old daughter on Saturday.. I am remarkable sore today.. but I definitely got a workout and had family fun at the same time. Friday I am going to an adapted Tai ji class with a girl friend. Next weekend my husband and I are going swimming and walking on a local beach.

    Do you have a good solid stroller for Jack that you can kind of lean on while you go on adventures? My grand-kids double stroller is like a walker with attitude!

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  4. Thanks Linda. Seems like you are very busy and having lots of fun along the way. :) I too am very active, with Jack it is a requirement. Physically, I think I do enough to maintain the gains I've made. My vision is deteriorating quickly though despite constant "functional use". So it seems these exersises may be a part of my existence. Cognitively, I'm not sure that I am able to "practice" as many high level executive functions as I was doing in speech therapy, so I sure hope it's not something that could disappear too. I was cautiously optomistic that just living my life would be enough to maintain...doesn't quite seem that way...so the training goes on. Best wishes.

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