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dgmoore

New to forum - coping with symptoms

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I had a brainstem embolism in 1995. My chance of survival was said to be about 5%, but miraculously I beat the odds. I have all my faculties, but am afflicted with left hemisensory syndrome (altered response to pain, heat and cold on left side), a form of vertigo (some imbalance and clumsiness, and a strong feeling of disorientation and disconnection from the environment) plus constant tinnitus and occasional bouts of nausea/queasiness. I have had the best of medical care all along (apart from failure of the first doctor I saw immediately after the stroke, who missed the diagnosis and caused me to be too late for successful intervention).

 

Although I get through the days, and was able to complete my career and retire successfully, there has been, and is, no joy in my life. I never feel very well, and although I am not depressed (I had a period of severe depression when younger, and what I have now is nothing like that) I don't get much enjoyment from anything. My wife, bless her heart, has stayed with me even though I'm no fun to be with, so at least I have that to be thankful for. And, despite this gloom and doom, I have not lost my sense of humor.

 

My experience has been a walk in the park compared to what others here have suffered, for which I'm grateful. But I wonder if my symptoms sound familiar to anyone here, and if anybody has been able to achieve any kind of improvement.

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3 hours ago, dgmoore said:

 My chance of survival was said to be about 5%, but miraculously I beat the odds. I have all my faculties, but am afflicted with left hemisensory syndrome (altered response to pain, heat and cold on left side), a form of vertigo (some imbalance and clumsiness, and a strong feeling of disorientation and disconnection from the environment) plus constant tinnitus and occasional bouts of nausea/queasiness. 

Holy cow. I've said this before but this time I am never more serious when I say I AM COMPLETELY READING MYSELF. The thing that got me is disconnection to the environment . TOTALLY UNDERSTAND.. mine is more intense for I feel that way with members of my family for I feel like I'm more a guest. 

 

Enough about me.. 

 

I'm so happy you were able to continue with your employment.    

laugh.png

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One good simile I read somewhere is "...it is like seeing the world through somebody else's eyes." I don't think there's a pill for that.

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3 hours ago, dgmoore said:

"...it is like seeing the world through somebody else's eyes."

I just screamed. DUDE

 

 I would tell my now ex-husband I felt like I'm filling in someone else's shoes when in fact it was my married life ( 9 years to the date) I didn't feel like I belonged

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Sounds like we both had the same synapses zapped! It's good to connect with someone who knows what I'm talking about - if you haven't experienced it you have no idea how unpleasant it can be. I'm still looking for the magic pill, but after all these years I'm starting to think there isn't one.

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Whilst not matching the first paragraph of your correspondence, I can certainly relate to the rest of it. In a few minutes whilst asleep I was robbed of all the skills I had worked all my life for. It has taken almost three years but I am putting back together as much of it as I can to be able to play guitar and keyboards and get to produce good music again. My fishing has gone for ever and my social skills of dancing and even talking have become seriously diminished. Fortunately my periods of depression are extremely shortlived.

I've been married 57 years and this has survived the stroke, except that I am now the back-up driver and have difficulty finding the energy to meet my obligations houseworkwise. 

I am getting a lot of pleasure being able to do house repairs adaptions and modifications to fit my new role in life.

Deigh

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11 hours ago, Deigh said:

... play guitar and keyboards and get to produce good music again...

I have played guitar, mostly classical, for over 50 years. My stroke affected my ability to play, but over a few years I mostly recovered that. One thing I can't do any more is memorize new music. I can play stuff from memory that I learned 50 years ago, but I can't learn anything new - I'm a good sightreader and thus read almost everything I play now. If you take the sheet away I'm completely lost.

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Now, here is a difference between us.....Like you I am a good reader with a bad memory, I have about ten arrangements I can play from memory and anything else has to be read. But initially about six months after my stroke when I started to play again the dots didn't mean anything at all, I knew they represented notes but which ones and of what value I had no idea. This took about six months to overcome along with the problem of not being able to remember where I was on the sheet music.

I have a repertoire of favourite jazz tunes on my computer using 'Encore'. When I started playing them again my reading was too slow so I ended up playing from memory, this was a good move and now I can boast to just using the program to play the chords and I improvise the melody, but can read when memory fails me.

My biggest problem was (and is) holding the plectrum and controlling which strings I hit. I designed a gadget to assist keeping the pick between my fingers and still use it all the time.

 

post-19426-0-77415700-1486452437_thumb.png

Regards

Deigh

 

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Cool - after my stroke I was having problems with my left hand: I couldn't tell without looking which string I was on. Very frustrating, but eventually I overcame that.

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On 11/13/2017 at 1:18 AM, dgmoore said:

am afflicted with left hemisensory syndrome (altered response to pain, heat and cold on left side), a form of vertigo (some imbalance and clumsiness, and a strong feeling of disorientation and disconnection from the environment) plus constant tinnitus and occasional bouts of nausea/queasiness.

Your description of your problems sounds very like that described by Clark Elliot in "The Ghost in my Brain".  It may be worth investigating the treatment he used.

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On 11/12/2017 at 9:18 AM, dgmoore said:

I had a brainstem embolism in 1995. My chance of survival was said to be about 5%, but miraculously I beat the odds. I have all my faculties, but am afflicted with left hemisensory syndrome (altered response to pain, heat and cold on left side), a form of vertigo (some imbalance and clumsiness, and a strong feeling of disorientation and disconnection from the environment) plus constant tinnitus and occasional bouts of nausea/queasiness. I have had the best of medical care all along (apart from failure of the first doctor I saw immediately after the stroke, who missed the diagnosis and caused me to be too late for successful intervention).

 

Although I get through the days, and was able to complete my career and retire successfully, there has been, and is, no joy in my life. I never feel very well, and although I am not depressed (I had a period of severe depression when younger, and what I have now is nothing like that) I don't get much enjoyment from anything. My wife, bless her heart, has stayed with me even though I'm no fun to be with, so at least I have that to be thankful for. And, despite this gloom and doom, I have not lost my sense of humor.

 

My experience has been a walk in the park compared to what others here have suffered, for which I'm grateful. But I wonder if my symptoms sound familiar to anyone here, and if anybody has been able to achieve any kind of improvement.

 

Yes, they most certainly do! Aside from the hemisensory syndrome on my LT, I have motor deficits on the RT.  Everything you included is part of my daily life too.

 

Good for you going back to work!  I had to medically retire in 1996; I couldn't drive anymore, vision and some cognition problems kept me home.

 

I think improvement is very subjective. Having had the stroke, added to the aging process, (And the fun that brings to the body!) have certainly been factors in my recovery.  (There are days when I'm doing well if I can make it to the couch!:rolleyes:)

 

There are all sorts of cognitive improvement sites on the internet; I'm rather fond of Luminosity.com, but that's me.

 

Welcome to the site!  (Keep that sense of humor!) 

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13 hours ago, heathber said:

Your description of your problems sounds very like that described by Clark Elliot in "The Ghost in my Brain".  It may be worth investigating the treatment he used.

Thanks for the tip. I checked and found that I had purchased this book on my Kindle some time ago, but never read it. I've begun now, and the author describes symptoms that are a bit like mine, but FAR more severe. I'll press on and see where it goes.

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David, It rather looks as though your problem is with your left hand and mine is with the right! Initially I had great difficulty even tuning the guitar because the electronic tuner required one string to be plucked and I couldn't guarantee that I could hit the correct string or even confine it to just one! I am well past that stage of recovery now but still occasionally the plectrum will hit the wrong string! My biggest difficulties now are speed and trying to play octaves using the plectrum and my index fingernail simultaneously. I used to be quite good at it but am slow at recovering that speed and dexterity.

Another major problem is my short attention span. 50 years ago I would play all evening in a band and then come home and get the guitar out to perfect something I'd heard that evening! Nowadays, if I havn't beaten it in five minutes I give up.

These are all standard problems with recovery, I am very pleased that most of them I can beat given time.

I couldn't sing before so the stroke has not taken away a career as a crooner!

Deigh

 

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On ‎11‎/‎12‎/‎2017 at 7:28 PM, dgmoore said:

Sounds like we both had the same synapses zapped! It's good to connect with someone who knows what I'm talking about - if you haven't experienced it you have no idea how unpleasant it can be. I'm still looking for the magic pill, but after all these years I'm starting to think there isn't one.

this is what I tell people all the time. There is another gentleman on here that also understands. It is trippy and very confusing. I've lost my connections for 34 years before stroke. I can talk about things ,some things, but its like I'm telling you third person so no personal connection to it.

 My parents are like good friends and I have to remind myself they have known me. My twin sister talks about out past and I can't remember stuff. I've looked at pictures and I can name most people and maybe where but not when or why. I don't remember being pregnant with my boys ( 14 & 23) so out of sight out of mind. If I go somewhere, I have no recall of that morning or travel, I was always where I am, u know.. 

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18 hours ago, Deigh said:

 

Another major problem is my short attention span.

that's why I tell people YouTube videos are my extent of focus lol

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