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Had my stroke on 12-7-18.  Found out (after loads of tests) that it was caused by Myxoma (a growth in my heart). So the culprit, instead of a blood clot, was a chunk of the myxoma.  So on 12-15-18 had open heart surgery to remove the growth.  That was successful but resulted in messing up the heart beat electronics, so 12-18-18 got a pacemaker.  Shortly thereafter a change of medicine caused Afib.  Now, everything but the stroke has been fairly well resolved.

As result of the stroke I now have problems with speech and swallowing.  My left arm is fully useable but is numb down to my wrist.  Left hand has full feeling.  So all in all I have been very fortunate.  Memory is still good but I am often emotional and frustrated.  Reading the other posts on this site has been really really helpful to me.  I'm 78 and happily married to my high school girlfriend.  She has been really great in helping me accept the "new normal".  I had therapy during February but that was aimed at getting the heart back in shape.  I have an appointment next week with a therapist to work on my speech and swallowing problems.

It is so great to find a place where others can understand my problems and I can find out how others got past what I am experiencing, 

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Good to meet you and welcome. I had swallowing problems initially but they got sorted, my worst problem now is speech. I work hard at it doing some loud reading daily. I'm not sure I am improving but my walking and hand/arm movement has got a lot smoother. The emotional and frustration effects are fairly common among victims but they do seem to have improved for me.

Deigh

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Deigh,

Glad to hear your swallowing problems have abated.  As far as the speech thing, I have been singing some and am relearning some speeches,  "Four score and 7 years ago".

Just mentioned to my wife that I had noticed that I wasn't sweating in the armpit of my bad arm.  Not nice to talk about but just another part of my "new normal".  Thanks for responding to my post.  Jwalt

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Hi Jwalt, good to meet you.  Keep working on the therapy and things should keep improving. Lack of armpit sweat sounds like a plus rather than a minus, but strokes do weird things sometimes.

All the best

-Heather

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Heather,

At the very least, I will save money on deodorant.  I am understanding more and more, the value of therapy.  But then, everything we do is really therapy.  When I walk, when I talk, when I swallow and when I type on this contraption.  Thanks for your kind response to my post.  Jwalt

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Hullo Jwalt.  I'm glad to meet you, sorry that it is under these circumstances.  Sound like you are a very lucky man, both before the stroke (married to your high-school sweetheart) and post-stroke (could have been a lot worse).  I hope that things keep improving, as these are early days.

 

We're here to listen to your successes, understand your pain and give you a shoulder to cry on.  I hope that we get more success that the other two :-).

 

Emotional volatility and frustration are par for the course, I'm afraid.  They get easer to deal with over time

 

As goes getting over problems, I'd say practice, practice, practice.  Don't push yourself too hard, watch out for fatigue.  Be kind to yourself.  Improvements may plateau, but then they start improving again; it goes on for years.

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Paul,

The advice you have given sounds like excellent help regardless of my condition.  Thanks so much for the thoughts.  Just knowing there are people out there who I can talk to, is a really big help.  I have read several of your posts including the one about grieving for the me that is gone.  Very very  meaningful to me.  Thanks for the response.  jwalt

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Thanks for the feedback.  It's far far easier to give advice than to actually use it, unfortunately.  The best that we can do is try.

 

I regularly beat myself up for stupid mistakes, but try to circle back later to forgive myself, see what went wrong and try to figure out a strategy to avoid the issue next time.  Which often creates new problems next time :-).  Self-forgiveness is important, but can be difficult.

 

I found that CBT helps.  I went on a course at the local major hospital, about half the people had stroke/concussion.  It mostly revolves around re-framing your self-image so as not to beat yourself up too much.  It's a learned skill, and takes ongoing mindfulness (to track what you are feeling and why) and practice (to re-shape the why and so change the feelings).  Does not always work, but helps a lot in real life.

 

One of the best things for me has been "spoon theory".  This is a bad description, you can find better ones if you search for them:

 

Basically it is energy management; you start the day with a certain number of spoons (6 or 10).  Each activity uses up a some spoons (in my case, going for a run uses 2 spoons, cooking a meal uses between 1 and 3 depending on the meal, grocery shopping uses 3, dinner with my in-laws uses 4).  When you have used up all your spoons, that's it for the day.  You can sometimes get more spoons by resting, but you have to budget spoons -- if we're having dinner with my sister-in-law's family, I won't do the grocery shopping that day.

 

I have learned more about managing my new life by browsing old topics on the forums than from all the medics/paramedics/OTs.  There is nothing quite like other peoples' lived experience.

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Paul,

Great advice.  The "spoon theory" has me thinking.  Now to figure out how many spoons per day and how many spoons my activities warrant.  "Reframing self image" - that one is going to get some attention today.  Thanks again for thoughtful advice.  jwalt

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Credit where credit is due.  Spoon theory is not mine, I learned about it on this very board.  Just passing the idea along.

 

There is far more detail and better explanations available from other sources; google "spoon theory" or search at the top of the page.

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I and others often reference how may spoons we have throughout the day 

 

(For those who don't know Spoon theory :

The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness.

 

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

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Paul and smith,

"Spoons" seems like an easy way to address a more complex situation.  I'm all for that.  Since I am still dealing with some heart problems,  I'll have to factor that into my "spoons".  Just caught myself staring at this screen for about five minutes without typing -- think I may be out of todays spoons.  Thanks to all!!

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oh yes when the spoons are used they are used. The trick is to save 1 last spoon for getting home and into bed. 

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A  new day and a new set of spoons,  I'm off and running (well walking fast) anyway.  Heather, - good idea about saving one spoon.

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i try to motivate myself daily to get out and do something. A walk in the neighborhood, a visit to the gym or to the chiropracter, and now I am doing a once a week hyperbaric therapy session.Its hard some days, but even just meeting a friend for lunch is a great experience to be enjoyed.I have read a ton, and on rainy days catch up on Netflix too.I hate that I never feel really good, just better some days than others,but never free from these constraints.

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elands,

Wow, you have just described how I feel often.  The hyperbaric sessions sound interesting.  Hope they help you.  I have read in your other posts the efforts you have made to be able to use your guitar.  I salute your effort and your attitude.  Hope I can do as well as things progress.  Thanks for the advice - i.e.: get out and do things!!! Jwalt

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Kelli, thanks for the spoons reference.  I think I got the whole spoon thing from you (it was in these forums); it has helped me enormously and is also an easy way to reming family and friends (and myself!) that I can only do so much.

 

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Hi James 

Not glad at all you stroked, please don't think that.

 

I am, however slightly jealo about not sweating in the pits!!

 

That would be one of my worst problems!!

 

I'm sure you north American lovelies have things like this, but I've discovered 'no pong' , a natural deodorant.  It's changed my life!

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GQ,

I'll check out "no pong" but until then I have a new tactic - - Don't do anything that makes me sweat!!!

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