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As a stroke recovery educator, and counselor who experienced difficult issues with self image following my strokes and who knows how important it is to not just focus on rehabilitation of pur deficits; but to also make use of those skills and abilities we do have to do what we can do, I am always looking for opportunities where I and/or other stroke survivors can use our stroke experience to make a positive contribution.

 I have recently been in contact with someone from Imperative Care (makers of clot removal catheters) who is doing research to develop a STROKE DETECTOR/ALERT SYSTEM. Mike Strasser is interested in connecting with ischemic stroke survivors to learn about their stroke experience. Mike is located in the Bay Area, and would like to connect with you in-person, or talk with you over the phone about your experience to better equip him to develop this new innovative device. Please let him know if you are interested in contributing to the development of this new innovative device. If you are willing to help contact Mike at: mstrasser@imperativecare.com 

After learning through the American Stroke Association’s Support network of Mike’s wish for some assistance, I sent him a brief email with my phone number indicating my willingness to speak with him via telephone. Mike replied asking about a possible day and time for him to phone. In about a 10 minute phone call I told Mike about the circumstances of my strokes and answered a couple of questions about my thoughts on what he is developing.

 

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How exciting-being able to stop a stroke before it happens! Sorry, I can't help though- mine was hemorrhagic.  Becky

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the ER    I went to after my first tia stroke, should have given me TPA to prevent a subsequent event.Instead they waited until I had a second and worse stroke.     This one could have been prevented.

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I had lacunar ischemic

In pons

In tiny blood vessels I have read are teeny weeny.

 

The ER did not give me TPA. I begged for it. Pleeeeded. They said it can cause a bleed or death. So much for the FAST hype. I was there in the 4 hr window too. 

My symptoms were confusing.was it really a stroke. Basically they watched. I was taken to the closest hospital not the best. I changed and made sure I live by the best.

 

Oh that hospital was the stroke trauma center. They denied me in house rehab.

I went out patient.

 

I had been a candystriper in that rehab....way back in the day...my daughter also.

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Thanks for the info.  I have sent my details to Mike; I had an ischemic stroke three years and a few days ago.  Initially diagnosed as a migraine, only taken really seriously a few days later when the rest of the clots impacted my brain.  

 

Fortunately my wife was late leaving for work (I was shovelling the driveway so that she could get out when it hit), so she was able to call 911 and get an ambulance.  Without that, who knows how long I could have been lying in the snow ...

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☹️ PaulNash I am sorry to hear  about  your recent stroke. I hope things are going well. You have a guardian angel, including your wife, thank goodness you  weren't there alone in the snow! Let us know how you are doing.

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Hi Tracy

 

Thanks.  Three years feels like a log time, but I guess many of the people in this group have been dealing with this for far longer.   Things are better that I could have hoped for -- my memory is a disaster, but physically I'm in reasonable shape *.

 

 I have a decent short-term memory, like 30 seconds, but after that almost nothing makes it into longer-term memory).  I'm getting better at writing things down, and asking people to email stuff to me, but a lot of stuff gets lost and keeping up with a conversation is pretty much impossible.

 

I can still work, but anything complex (I'm an IT geek) ends up taking a lot longer than it did before, because I lose the thread of what I am doing, what I have done, what the end goal is.  And the more complex stuff that I used to do is totally impossible.  Apart from memory, I get really tired quite fast as soon as I have to think a lot about what I am doing.

 

I have a quadrantanopia, but can compensate well enough to keep my driver's license, although I have to be retested annually.

 

* I'm a runner, and never understood how much cognitive energy goes into running.  I always thought that it was my leg muscles doing all the work.  I used to run ultra-marathons (longest was 89 miles).  I can still run, but after about 13 miles I can't see straight any more.  My limit now is more like 5 miles.  I feel ashamed to be upset about this, given the number of us in wheelchairs, or walking with sticks, but for me it is a major loss, on a par with the memory issues and the impact on work.

 

The biggest issue of all is social, which warrants a separate post, looking for advice and strategies.  I'll do that now ...

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Although not with the severity of  handicaps you are having to handle, I have similar problems with short term memory and having got to a serious stage of guitar capability where I could drop in and play alongside anyone whether they played Dance band, Country, Pop or Jazz. Now I am struggling to just make a decent sound. Like you I have to remind myself that there are many other survivors who cannot even get out of wheelchair. 

This does not really make me feel any better but it does put things into perspective.

Deigh

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Paul I'm glad you wrote back because I now realize I completely looked over the words "three years and a few days ago" and just read "a few days ago". 😳 I'm at about 3 and two thirds past. I really hear what you are saying. That is a big loss to bear. The social issues I know I'll totally relate. I went from a happy social butterfly to a anti-social hermit lol. Yea but true. I'm not good around people. I screw up conversations. I stutter. I completely freeze sometimes. Sometimes I have a panic attack. It's easier in my room. Pretty sad but I'm ok with it.

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Hi Tracy

 

The social thing is a real pain.  I'm trying to find some counselling about improving social interactions because my wife gets really upset when she tries to hav a conversation and I just listen.  I'm trying to keep up my side, but half the time just can't think of what to say.  

 

It gets worse when she is upset, and I cannot think of how to calm her and make her feel better.  This is super upsetting for her, especially as I was the one person who could do that consistently before the stroke.  Now I just sit that and think "What do I do now?.  What should I say?  How can I respond".

 

I keep reminding myself that compared to some of us, I have it pretty good.

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Those moments where you can't get anything out are the worst. It leaves me with either a feeling of shame, sadness, guilt, frustration. I usually end up crying. Which helps nothing. During those times my brain literally does not work properly. Man I wish I could tell you what works for me. Have you guys joined a local stroke/caregiver group? That scenario is so hard on both spouses. I think it may have a little bit to do with acceptance too. It's something I think your spouse will have to reach too. In the meantime keep your chin up...you know we will give you as much support as we can.

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Hi Tracy

 

This group is my go-to place when I am want company.  Just reading the conversations is often enough to make me feel that I have a "home" where I am understood.  I really appreciate everyone's presence and support, and try to give some back when I feel that I have something to offer.  And when I feel down, visiting here generally improves my mood no end.

 

One of Linda's strengths is that she doesn't accept leaving things as they are;  she has pretty much revolutionized medical care at the local humane society (she's a veterinarian), and spent a lot of the last three years trying to find a cure, or better ways of rehabilitating me, and has been trying to work out the best ways for me to compensate.  She's coming from a place of wanting to help, and wanting to do whatever she can, but it can be frustrating for both of us.  I'm at a point of trying to accept my deficits, rather than fight them; which is a tough thing for her to understand (she sees this as more like "giving up").

 

I'm trying to find someone to give me lessons in how to support *her* when she's feeling down.  I used to be able to support and comfort her, now I tend to sit there speechless, trying to decide what to say or do.  

 

We'll work it out one way or another.  Big digression 🙂

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Regarding the start of this conversation, I have a phone call booked with Mike for tomorrow afternoon.  I'll take notes and report back (in case anyone is interested)

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I try to stay active, but realize my limitations. When my left leg has zero strength, I may opt to sleep in, sit outside, go out to lunch and not much more. Other days it's usable and I will go shop, hit the gym or try to walk in my neighborhood,I can be very frustrated at times for sure.

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On 2/17/2019 at 4:08 PM, PaulNash said:

Hi Tracy

 

Thanks.  Three years feels like a log time, but I guess many of the people in this group have been dealing with this for far longer.   Things are better that I could have hoped for -- my memory is a disaster, but physically I'm in reasonable shape *.

 

 I have a decent short-term memory, like 30 seconds, but after that almost nothing makes it into longer-term memory).  I'm getting better at writing things down, and asking people to email stuff to me, but a lot of stuff gets lost and keeping up with a conversation is pretty much impossible.

 

I can still work, but anything complex (I'm an IT geek) ends up taking a lot longer than it did before, because I lose the thread of what I am doing, what I have done, what the end goal is.  And the more complex stuff that I used to do is totally impossible.  Apart from memory, I get really tired quite fast as soon as I have to think a lot about what I am doing.

 

I have a quadrantanopia, but can compensate well enough to keep my driver's license, although I have to be retested annually.

 

* I'm a runner, and never understood how much cognitive energy goes into running.  I always thought that it was my leg muscles doing all the work.  I used to run ultra-marathons (longest was 89 miles).  I can still run, but after about 13 miles I can't see straight any more.  My limit now is more like 5 miles.  I feel ashamed to be upset about this, given the number of us in wheelchairs, or walking with sticks, but for me it is a major loss, on a par with the memory issues and the impact on work.

 

The biggest issue of all is social, which warrants a separate post, looking for advice and strategies.  I'll do that now ...

I wish I could run at all ,let alone miles. I used to trail run near my home but not its just a memory. I've kept my running shoes just in case.

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Alan running after a stroke is possible but you need special training and rehab for it. You need both strength and fast twitch muscle response which is something most stroke rehab ignores. I go to a "brain injury return to running" program at a local hospital.  It's taken a couple of years and some surgery (I had some leg muscle shortening that needed correcting) but I'm now starting to do fast feet down the corridor.  And as a bonus its been a real help with walking gait and speed.

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