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Ariel

90 day recovery window - myth?

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Somebody told my partner that whatever isn't recovered in 90 days is not likely to ever be recovered. She had her stroke at the end of August, almost 5 months ago. She received in-patient therapy for 2 months, and in-house therapy for 2 months. She is now scheduled to go to out-patient therapy. There is still a lot that she has not recovered, and I'm wondering

if it will ever come back, or if we need to adjust to things the way they are. I have noticed some regression since in-home therapy stopped. Even though I encourage her to do her strengthening exercises and suggest ways to keep her mind active, she resists me. Can anyone refute or verify the 90 day window, and does anyone have any suggestions for motivating her to work on therapy on her own?

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Each stroke is different with different recovery profiles. But I think you will find that 3 month limit is nonsense. I a little over 3 years and still progressing, it isn't easy but I'm still moving forward. A doctor once made a simple statement which over time I have found to be mostly true. " if it can be fired, it can be wired", the technical term is neuroplasticity and it is how our brains attempt to rewire after injury. Time is often a friend for people who have had strokes.

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Strokes are not the same in everyone and everyone is not the same, you never stop learning but don't stop trying either and never give up

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Ariel, that 90 day thing is based on the old brain science which didn't recognise neuroplasticity was a thing.  Generally the first 90 days your brain is healing the physical injury so you have inflammation that can put pressure on the neurons and make it harder for them to fire so that 90 days is generally when you get the easy gains, and the things that are going to come back without hard work. After that though they now know that the brain can and will rewire around damage so long as you keep asking it to learn. So the slowing down of recovery pace after 90 days is real but it's certainly not the best you'll ever get.

 

I'm, now over 7 years post stroke and I know that I'll probably never get back to what I had pre stroke as I'm now dealing with massive muscle wasting as well as lost neural connections. However in the last 12 months I've made some impressive gains in my walking and I'm working on learning to run again.

 

Motivation comes from within. She will need to find her own reasons for continuing to work on her recovery. and it does get discouraging when it takes so long to see results.  However the "Use it or lose it" rule applies.  The science now shows us that visualising the action can be just as effective as doing the action to trigger neuroplasticity.  But it takes many many repetitions either way.  The best advice I can offer is make it fun. Doing the things you like to do is much easier than doing the things you have to do.

 

I hope that helps.

Heather

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On ‎1‎/‎20‎/‎2018 at 11:04 PM, heathber said:

Ariel, that 90 day thing is based on the old brain science which didn't recognise neuroplasticity was a thing.  Generally the first 90 days your brain is healing the physical injury so you have inflammation that can put pressure on the neurons and make it harder for them to fire so that 90 days is generally when you get the easy gains, and the things that are going to come back without hard work. After that though they now know that the brain can and will rewire around damage so long as you keep asking it to learn. So the slowing down of recovery pace after 90 days is real but it's certainly not the best you'll ever get.

 

I'm, now over 7 years post stroke and I know that I'll probably never get back to what I had pre stroke as I'm now dealing with massive muscle wasting as well as lost neural connections. However in the last 12 months I've made some impressive gains in my walking and I'm working on learning to run again.

 

Motivation comes from within. She will need to find her own reasons for continuing to work on her recovery. and it does get discouraging when it takes so long to see results.  However the "Use it or lose it" rule applies.  The science now shows us that visualising the action can be just as effective as doing the action to trigger neuroplasticity.  But it takes many many repetitions either way.  The best advice I can offer is make it fun. Doing the things you like to do is much easier than doing the things you have to do.

 

I hope that helps.

Heather

This is very important and true !!!!!

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If I look back to my first 90 days then the progress I made then was staggering but I was starting from scratch. Now after three years I am still making progress but not at the same rate. Every now and then I meet someone who hasn't spoken to me for some time and they do comment on how my speech has improved. I am unaware of any progress but take their word for it.

My fingers are still improving with my guitar playing. Any musician will be aware of how much work has to be done just to make small gains. This truth is also known by athletes.

Deigh

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I've had a similar experience.  Stroke three years ago, massive improvement in the first three months (mostly at Sy John's Rehab, learning to walk and balance again).  I'm still seeing improvements, sometimes things go backwards and then forwards, but over time there has been a net gain.  Sometimes I only realize a while later that things are a whole lot better than they were in some aspect.  And sometimes I realize that the improvement is just an improved work-around (for example, setting and checking reminders on my phone is getting more automatic).

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Hi, I realize you asked this question about a month ago, but it probably doesn't hurt to hear it again:  I had my stroke over two years ago, and I'm still improving.  It's not as fast as the first few months, but it's definitely still happening.  It's always exciting when I do something and think, "Oh, I couldn't do that before!" or when I think back to where I was six months or a year ago and realize how far I've come.  And I've had stints in there when I just got tired of always working so hard and so I didn't really do any exercises or make much effort to try and improve, but then I'd get remotivated and start working again, and progress still happened.  In one way, it's the same as it was before the stroke:  If I decide to do the work, I'll see the progress.  And, I have to agree with what someone else up above said:  Make it fun and part of your everyday life, that's the easiest way to keep working on it.  A lot of what I want to improve IS part of everyday life, so just practicing what I want to do can help make it better.  Or sometimes it's an unexpected discovery, like when I went to the bowling alley with my family.  I can't begin to bowl (though I love doing it), but I can lean against a pool table and shoot pool with my nephew!  I'm terrible at pool because I have no idea what I'm doing, but I'm having a great time playing with my nephew :-)  while I work on balance, stamina, bending and straightening, controlled arm movements, walking around the table, looking up instead of at my feet, etc.  Doesn't even feel like work!

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On 1/20/2018 at 9:33 PM, scottm said:

Each stroke is different with different recovery profiles. But I think you will find that 3 month limit is nonsense. I a little over 3 years and still progressing, it isn't easy but I'm still moving forward. A doctor once made a simple statement which over time I have found to be mostly true. " if it can be fired, it can be wired", the technical term is neuroplasticity and it is how our brains attempt to rewire after injury. Time is often a friend for people who have had strokes.

 

  I'll have 22 years of post-stroke recovery next Wednesday, and what scottm wrote has been my reality.

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my stroke doctor says 6 months is the limit of recovery, but my OT says nonsense she has seen recovery after years in some patients, as I approach 6 months out I like what she says more and more

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thank you everyone who has responded. Right now, it feels like we are going backwards a little.

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Ariel

My family Dr says 2 years.

My nuero Dr says it never ends.

My PT says never stop trying to get better.

My body says if you push me that hard you will pay for it tomorrow and maybe the day after that.

Don't worry what anyone says.... we are all different, do your best and listen to your body, never give up.

Good luck

Ed

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I'm at 838 days post stroke.  Not that I am counting, :sad:, 2 yrs, 4 months or so.  And I am still improving.  Slower today than at day 90 but still improving.  Keep track of some of your milestones so you can look back and see them.  If you don't you forget you made progress. 

 

A year ago I needed the riding shopping carts in stores.  Now the smaller ones I can use a regular shopping cart and make it. The year before I didn't go shopping.  The larger stores still need the riding cart.  But this limitation in time shall fall too.

 

For those worried about me counting days.  No worries.  I just used Excel and enter my stroke date, today date and the formula to count days.  I am not really tracking that close.  This was for fun.

Have a great day!

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Yes the beginning was horrific but wonderful and I recall a whole year of being on another planet in an alternate universe. Yes I was sent home to fend....so I got into a big teaching medical hospital group and with a neurologist and primary care doctor that talked services therapies and interventions so no more strokes. Not just home waiting for the other shoe to drop. This gave me control to go to therapy and work.

 

Time. wait. work. But the brain does what it does in time. The brain does what it does and only the brain knows why. why does it do for one and not the other.  so things I thought I was stuck with suddenly I noticed hey look better.then it relapses. was I tired. hungry. Is it the meds complicating things. Two steps up two steps back. Just keep moving. There is no cure. only perseverance.

 

What really helps. Is a partner who supports persevere with love loyalty and sees value growth in the relationship with a person. a person with a brain illnessinjury.that comes with baggage. sometimes carry that load upstairs. sometimes it rolls itself down hill. And a survivor resillient enough to continue to love and be loved nevertheless whatever growth trajectory the future holds

 

It takes a team effort. doctors therapists other supports at home. even housekeeping cooking driving picking up meds scheduling appointments can overwhelm the brain that just had an assault. for me just seeing became an overwhelming event for me. I continue to battle double vision but repitition is what the brain needs to change but how many how long.

 

so yes it is a marathon not a jog around the block. never loose hope. but yes. accept real. for now until further notice.

but help is out there. fight for it . never alone

 

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Two steps forward, one step back...

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I believe god has a season fir my recovery and He will set the time, so relax and keep working. My workouts at the gym get better and stronger.

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I agree with everything said. I have found it very common for big strides in recovery the 1st 3 months, still pretty good strides 3-6 months, and it is noticeably slower at one year. I agree that journaling (only a short paragraph or even a list) over time will remind you of your progress. We really do forget lol. I do believe that improvement does not have to stop. You just have to be stubborn, believe in time and work hard! Sometimes you won't even notice improvement but if you start keeping a journal you can look back and you'll say "oh yeah, I couldn't do that back then but I can now". 🙂 Best of wishes.

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On 1/22/2018 at 4:19 PM, Deigh said:

If I look back to my first 90 days then the progress I made then was staggering but I was starting from scratch. Now after three years I am still making progress but not at the same rate. Every now and then I meet someone who hasn't spoken to me for some time and they do comment on how my speech has improved. I am unaware of any progress but take their word for it.

My fingers are still improving with my guitar playing. Any musician will be aware of how much work has to be done just to make small gains. This truth is also known by athletes.

Deigh

good to hear that as I still have zero guitar skill.     my arm is still stiff and no wrist or finger action other than I can make a fist, but not open it.

My wife is very encouraging and wont let me sell any of my 8 guitars, or the amps.Which is smart, you never know,,,when this might happen for me.

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I still have zero guitar skill too.  Of course I started with zero guitar skill.

 

stroke recover is now 3 yrs for me last week.  Yesterday I drove for the first time.  Light traffic so good time to try.  I still have a weak leg and don't know how long I could drive before my leg gives out, but it was immense amount of freedom to see that I could drive into town and do something.  My wife was with me to make sure I didn't have issues.  Another gain!  Only 6 miles, but Yea!

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Alan, Very envious of your guitar collection. I have no room in my den for more than a keyboard which has to double up as a computer desk, and one guitar, my treasured and well worn Ibanez GB20. Amplifiers are down to two lightweight portable units, The weight of previous ones meant that they were impossible to carry. My keyboard weighs only 7kilo and this I can handle.

Not playing out at all yet but looking forward to the day when it happens.

Deigh

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Alan and Deigh

I'm buying my kids full size guitars for Christmas. 

They've had 3/4 from when they started playing. 

My kids have grown, unfortunately the guitars didn't!

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Excellent, I'm pleased that they are still playing. I'm re-learning! I've forgotten a lot of stuff and my fingers are unbelievably clumsy but on rare occasions I get a satisfactory result from my efforts and that makes it worth while.
Deigh

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Deigh I’m trying to play my flute sheet music on the piano, as my left hand is good. I’m really struggling to remember the notes.  I think I need those stickers on the keys.

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1 hour ago, GreenQueen said:

 I’m trying to play my flute sheet music on the piano, as my left hand is good. I’m really struggling to remember the notes.  I think I need those stickers on the keys.

Maybe it would be easier to play your piano music on your flute. 😶

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I understand how hard it must be loving something and not being able to enjoy it like you once did 

I for one cant drive my race car or do the work on it as i'm out of breath 10-15 mins and that goes for driving my motor home to the track and setting up camp. I can walk, talk and do most everything but being dizzy all the time makes it unsafe to my competitors or myself, I don't find the same enjoyment in watching so i'm relegated to stay away, it saddens me to watch and then the emotional part kicks in.

I know I should be happy i'm still alive but this is not life, its merrily existence one day at a time.

Strokes do more than take away hobbies.........they take away entire lives.

Ed 

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