There are some problems that a stroke survivor faces that some people (even doctors) do not seem to be able to grasp. I have been to physical therapists, neurologists, speech therapists and psychologists and none of them (at least on the surface of what they say) seem to really get the fact that there are real problems that we face on a daily basis (some days are worse than others) that are not physical. Some people reading my blog will understand exactly what I am saying: there is a "spacey" feeling that cannot really be quantified. That is, it is hard to put into words and almost impossible to describe but it is a real problem. Sometimes when I wake up I just have a "far away" feeling that cannot really be explained, but when that feeling is there it is hard to concentrate, it is hard to find the right words to communicate clearly and it is hard to get my thoughts together. Are there physical problems? Sometimes (when that "spacey" feeling is at its worst, my leg also seems weaker and I seem to struggle with my balance more). But, the problem is not always physical but it is just a feeling. If I sound as if I am griping, ok, I probably am; but, I just want to communicate to people that just because a stroke survivor looks great, there might be problems that no one else can see.
On December 8, 2008, my life changed forever. I had a double sided cerebellar stroke with 2 brain stem compressions. It was not until December 10, 40 hours after my stroke, that surgery was finally done to relieve the pressure. Dr. Piper, the neuro-surgeon from Iowa Methodist hospital in Des Moines, told my wife that surgery was nothing more than an attempt to save my life, but that it would not erase the deficiencies as a result of the stroke. Although she admits that she did not really understand what Dr. Piper had just said, my wife, Laura, agreed to the surgery and the care team performed a decrompessive craniotomy, to hopefully relieve the pressure and allow my brain to function somewhat normally. For those who have followed my blog for the last 14+ years, the surgery was successful, I returned to the church and I now live a relatively normal life, although I do have some pretty severe, though not always visible, defieciencies. I really thought that life could not get any worse th
Amen. Having bipolar II disorder and hypothyroidism, I understand all too well.
ReplyDeleteYes I know exactly what you are talking about. It is better for me now, but every once in a while it is not gone.
ReplyDeleteWhat was surprisingly helpful was that I got sent for mindful meditation by my Social Worker which was good is so many different ways much to my surprise. I then started doing Christian meditation too. I find them complimentary and not an either or thing.
The mindful meditation is a technique that helps with stress, pain management and focus and helps one to isolate concentration on particular tasks or bod parts. It helps with getting on with the task at hand even when feeling "spacey".
Linda
I had a brainstem stroke and know what you are talking about. These "spacy" days have become less frequent in the 7 years since my stroke. Hang in there.
ReplyDeleteLittle snippets like this are helpful to me because my husband had a stroke this year. He is still "there" mentally, but yet something is different, something that neither of us can quantify. I know he has moments or days like that, and it's helpful for me to understand him just a little bit more.
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