Have I plateaued?


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Hi everyone I am in need of some answers, it has been 7 months since my stroke, I still have numbness on my left side and continue to walk with a limp, I am not in thearpy at this time so I have no way of knowing if I've improved, I still can't type or use my left hand, will improvement still continue or have I reached my plateau?

Thank you.

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Rosena: We do not use the word "Plateau" here. That is an insurance term designed to allow them to stop paying for our recovery.

 

Stroke recovery as you know is a many layered process. So many things are affected: muscles, cognition, personality, function. And where one of these may progress slower than another, depending on where the brain damage was, there is never an "end." With the vastness of the brain and the lack of knowledge as to what it is capable, never let anyone convince you this is as far as you are going.

 

But it is a daunting task. I think many of us here would love to say, OK we're done and get off the treadmill, but as you read through the blogs and posts, you will discover that years into recovery progress is made.

 

Personally, I think as reconnections are made in the brain and the brain recognizes that adjustment has to be made, that is where we all notice subtle but true improvement. It is almost like the brain says to itself, OK so I took care of that leg-foot issue, lets see if I can do something with the speech. And since no one truly knows, you just go with it.

 

Hard, tedious work, to be sure. But you just keep plugging away. It does finally happen that there are more positive days than back-sliding ones and that is when you regroup, prioritize your recovery and push forward.

 

The leg/foot will come back quickest. If you have to adjust your routine to work them harder, lessen the limp-get better balance, you do it. Because those muscles respond the quickest. Work the arm/hand every single day, knowing that will take more time. I am not quite sure how much you can do independently, but also work on the total body - lots of stretching, walking, swimming - to work the whole body. And right now a program at your local Y or gym with a pool, even if you only swim, is an excellent choice.

 

The one thing I can tell you, after 4 years post with my Bruce, is that the work is never done. Hope this helps, Debbie

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I know it seems like it has been FOREVER already (time passes at the most slow crawl that first year), but you really are pretty early in the game. I had therapists convincing me that I had already seen the vast extent of my recovery by 6 months when I couldn't even walk at all yet, but as Ethyl said, that is an insurance-invented myth. I am still making gain and have been walking (with a cane) for several months now.

 

Don't give up. The gains are slow and often less precivible that at other times (I might say these are mini or temporary plataues), but I have talked to stroke survivors who are still making overall gains more than 10 years out. I had lunch today that I had no idea had stroked in 2000 and she shows NO lingering effects today. I absolutely would have NEVER guessed she had ever stroked other than she could exactly describe what I am going through today at levels no one else possibly could unless they had been there themselves! I don't know that I will ever acheive that level of recovery (maybe? maybe not?) but I'm for sure not giving up on making strides in that direction even if therapists think I'm well past my "window" to get better!!!

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I was Kicked out of PT and OT because I had "Plateaued" I refuse to believe that this as good as it gets! Since getting released from ooutpatient rehab, I've been using the local college's OT clinic and, I have more control over my arm than I've had since my strok. I can straighted my arm now! So, it CAN get better!

 

Never Surrender!

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Let me see if I can add to the answers others have already given you. You know after your first visit the therapy clinic can get you in for another session then when your insurance won't pay for any more sessions the clinic will say you are great and don't need any more sessions. The truth is you can improve and continue to improve until you are walking without a cane, bending and getting on your knees and back up without a problem. If you can't do that you still got a ways to go. Your affected side will continue to be numb it's paralyzed and disconnected from the brain that controls that side of your body.

 

In my mind it takes longer than 7 months to start feeling like you have made some progress towards recovery and it keeps on getting better with TIME, lots of time even before you can return to work like you were before the stroke. I worked for three years on my scooter at Wal-Mart as a greeter but I never could have done all that walking, moving around at that stage of my recovery otherwise.

 

By the way, I think we will always have numbness even with taking our meds for pains, at least that has been my experiences for 9 years.

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Rosena, I know how badly you want some answers, and how miserable it feels not having any. The truth is that there is no Stroke Recvery 101. So, no one can give you a timetable that tells you WHEN you will see improvement. All we can say is that we know that improvement occurs even AFTER that "magic window" closes, because we have seen it in ourselves or others. I think that what it all comes down to this: We have to BELIEVE that we will get better , and work towards that end, or plateau will become all too real. Just my :2cents: worth. Becky

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Hi Rosena,

 

Whether you specifically have plateaued, none of us can answer. An unpopular fact is that we all plateau. Thankfully "Plateau" needn't mean what we tell ourselves it means.

 

There are basic truths about the human body that can't be changed and one is that the body will naturally plateau with any attempt at change. Weight loss, muscle building, cognitive building, but that isn't final and can be "jump started" again. We are frightened by the word and become discouraged and give up which becomes our self fulfilling prophecy.

 

There are several plateaus that I noticed in my recovery. They may be different for others. The first came after the six month mark when the swelling of the brain resolved. I continued stretcthing and daily activities but took a break from strenuous PT Therapies for a while as directed by my PT. When I started again I improved rapidly again.

 

Naturally the body responds to the increased training but in time those changes are seen by the body as it's "new normal" too and stops reacting so quickly, and if we take a break, doing only maintenance for a while and then start again the body starts building and accepting changes again. So we really never stop improving if we don't get discouraged and give up.

 

Another thing to consider is that insurance and doctors, though it feels that way, aren't closing the door forever. Many of us have had PT discontinued only to have it recommended and restarted later. For Now doesn't mean forever.

 

Even now, two years later, and after three strokes, MS, lupus and heart disease I'm stronger than I was six months after stroke and I have hit several plateaus. It isn't a matter of attitude or optimism but a matter of being human.

 

It is so easy after stroke to become afraid of any changes or fear what we don't understand. For me what keeps me from giving up is to disempower my fears by understanding them.

 

Recovery doesn't end but it does slow down to a crawl sometimes. Hang in there. More is coming

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Hi Rosena. I'm 18 months post, and here is the way I see recovery. If you think of a graph, with time in years on the X, or horizontal axis, and recovery of physical and congnitive abilities on the Y, or vertical axis, you'll get a curving line that goes almost straight up the first six months then levels off, then gets almost horizontal as time goes on. But the thing is, the line never gets truly horizontal; that is, recovery never really stops, it just slows down. But the way I look at it, the next ten years will pass whether or not I exercise and try to get better. But if I do try, I will be a bit better at the end of that time than if I didn't. No scientific basis to any of this, just my opinion.

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  • 3 weeks later...

Plain and simple answer - No you have not.

 

I recovered my ability to write and run after 3 years post stroke. You need to sincerely believe you will get better and give the effort 200%.

 

I always set my goals to the seemingly un-obtainable - it has served me well.

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Rosena - there's a great book, My Stroke of Insight, by Jill Bolte Taylor. She had a massive bleed stroke. Her recovery took eight years. Son't ever let them tell you it's as good as it gets. Only YOU get to decide that. :thumbsu:

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  • 2 months later...

Hi, first time poster. It's been a little over 2years since my stroke left me with left side weakness. I'm able to walk with afo only. I still don't have any real use of my left arm and hand. I found you can get insurance to pay for more therapy if you report your aches and pains to your doctor. For example, shoulder pain caused by the weight of a hanging arm, hip pain caused by swinging the affected leg around because of foot drop, and back pain caused by poor body mechanics. I've been approved for 18 additional pt sessions and 14 ot sessions since I complained of these pains to my doctor.

Having gone without any therapy for over a year, I have noticed great gains by going back to therapy. They taught me new stretches and exercises and corrected my walking motion and the way I move my arm. My walking has improved drastically and although I haven't regained any functional use of my arm and hand, my range of motion and strength has improved. Also, the pain has gone away.

My biggest frustration besides recovery,is going back to work. I have been trying to return for over a year. I have a lawyer representing me with my eeoc complaint.(failure to provide reasonable accommodations).my only income comes from unemployment insurance. Social security disability rejected my claim because they said I am too young and too educated. Because of this, I should be able to find suitable work. On one hand, my employer says I'm not able to work. On the other hand, social security says I should be able to.

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HarvmanO,

 

I noticed this is your very first post so a big welcome to you but when you find time introduce yourself as newbie so others can welcome you to the site. Glad to have you join here.

 

A lawyer to help you in filing the claim with social security will probably be needed too if they denied or rejected your first claim with them. It's a big hassle but you are entitled to get the funds in your condition.

 

I went through the same thing but decided to take regular social security for age and they still stuck the knife in me by taking 13% because I wasn't 65 and 8 months. So for a few months they took 13% of what I should have been drawing. By the time I got a lawyer it was way too late for him to do me any good.

 

When your current employer says that you are not able to work they are ready to let you go in your condition knowing it will be a long time recovering from any stroke. After a while your insurance will run out and you got no income coming in. Social security will tell you anything to keep from paying you. There are plenty post in that Forum talking about this subject if you care to look through them.

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Harvman: cognitive recovery can take longer than physical. If the muscles are "talking" to the brain, re-routing is possible. Yes, it takes time for those areas in the brain to accept the new chores and then take them on full time. But for some reason, cognitive is more difficult.

 

Bruce does his physical stuff because it is easy. Routine is always the same, never varies. 20 reps and then on to the next. No thinking. Yes, it hurts, but it is physical pain. Rest, shower maybe a tylenol. In the stroke recovery world that is easy.

 

Cognitive, not so much. Because you must think. You must pick up the magazine, read the article, remember the article, be quizzed on the article and then remember that you did the article. Way too many steps, but it must be done. My issue, personally, TV channel surfing. Put the remote down, do not pick it up for 10 minutes. Commercials are Bruce's issue. He uses that time to channel surf, goes into "la-la" land. So our new exercises during his down times when I am prepping dinner, laundry - whatever; put it down and you can not touch it for 10 minutes. I can't tell you how difficult this is for him. Point being the cognitive improvement is so much more difficult.

 

One positive I will add. As much as going back to work for Bruce was frustrating - could not work as fast, became confused. His boss reported his work was perfect. But in Bruce's mind it was just too hard.- too slow, not productive, tiring. It was the best six months for cognitive recovery to date. Bruce chose not to return. But to this day, I know I should have insisted. Bruce would never be paid certainly, but his boss is also a close friend, interaction with his fellow co-workers, using the computer.

 

Hang in there. Work every day at cognitive recovery. Slow to come, yes; but so worth it. Debbie

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Hi Rosena, I am 29 years post. At 20 years post, I started getting more PT and I was able to discard my AFO. Take it from me, recovery never ends as long as we work at it. Sometimes we think nothing is happening in our recovery and sometimes by switching to a new exercise we can see progress. To really see the recovery we have made we have to compare today to the day after the stroke not the day before the stroke. All the best to you and please dont give up or you will never know...

 

mc

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Hi Rosena,

No, you haven't plateaued. None of us have.

Recovery may occur more slowly after the first few years, but it NEVER stops.

Our brains are just too amazing in their accommodation abilities (neuroplasticity).

 

I am almost 5 years post stroke.

I might never be exactly the same as I was pre-stroke, but I continue to improve; it's just not at the same rate as I did during those early years.

 

Please read my improvement story in the STROKE SURVIVOR SUPPORT forum.

It's called "Still recovering after all this time," or something like that.

 

Try to hang in there. I found the first 2 years to be the hardest, emotionally.

You are still getting used to a new and different "you," and may I say, grieving for the loss of the "old" you.

 

Take good care,

Rosemary

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  • 5 months later...

rosena- I had the same question and everyone on here are a great support with their feedback. I'm almost 7 mo post stroke so in the same boat as you. my therapy has ended but im still trucking of course the holidays slow me down on workouts but just like everyone else making a resolution I'll start back up. I personally have improvement everyday. speech is my biggest now but its getting there just keep positive and pray. my next goal is to run around playing with my grandsons this summer. so hang in there.

 

2 brainstem strokes june 2013

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Rosena,

 

I apologize for taking so long to respond back. At that time you said you were 7 months. That is still early on in recovery. It usually takes anywhere, not guaranteed, a year to get your brain back on track. Not going to therapy anymore is not a pass saying you can't continue to do therapy like things at home. Everyday we improve but it may not be visible. Granted we want to see that big change but it does take a lot of re wiring in your brain first before you may see big improvements. Don't get upset now. I'm 5 years and I still have days that I feel I've gone down hill. Show stroke who's boss and look up things you can do that don't cost anything and you can do at home. Youtube helped me out.

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