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Hi,

I had an internal capsule stroke in June that affected my left side. I couldn't move my arm or leg, talk right, or swallow at first. Talking and swallowing are pretty good now. I can walk without my cane, though I still have coordination and balance issues. I have to wear a knee cage to keep my left knee from hyper extending. My arm and hand are extremely weak, although I can move them now. My recovery was moving along really well, but now seems to have come to a standstill. I'm trying to stay positive and not succeeding with that lately. The mental and emotional aspects of the stroke are just now starting to hit me. I have had a lot more fatigue the past few weeks and I've just been *beep* off in general. I do have a doctor's appointment next week to discuss these issues, but any advice from the true stroke experts would be welcome. I'm grateful that I found this site. It really helps to be able to communicate with people who really understand. 

Nicole

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Hi, Nicole! WELCOME!

 

This is a great site to visit for friendship, information, venting, etc. Lots of people here who understand!

 

:smile:

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Hi Nicole! I believe you will find it very helpful to connect with other survivors here. This site has certainly helped me. Wishing you well, Happy Thanksgiving! Michelle

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3 hours ago, NikalPikal said:

My recovery was moving along really well, but now seems to have come to a standstill.

Recovery never ever completely stops.  However, every stroke survivor recovers the most in the first 6 months.  After about 6 months it can become sometimes painfully slow.  It is perfectly normal to feel like progress has come to a standstill.  Don't measure your progress in days but rather months and years.  Recovery is different for everyone so don't lose hope.  The more you put into it the more you will get out of it.  It helps to set one goal at a time, example: strengthening weak hand.  Then, do exercises to make that hand stronger.  I can guarantee that you will be able to look back in several years and notice an improvement.  Good luck!  :happy:

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Hi Nicole. I hope you find yourself very welcome here and I agree with you it's a group of stroke experts. Having a stroke is a life-changing event. It also has far reaching effects. I'm happy to here you have had some positive recovery. We are all very familiar with this wall you are finding yourself at. Steve is a super stroke expert. 😁 From my own experience and learning about other's experiences first hand...I can tell you that the majority of us if not all did experience our biggest improvement the first 6 months and 6-12 months it slows quite a bit. We then all ask and feel the same or similar..."Did my progress stop? I'm working hard but not seeing the magnitude of result. Can I improve from this point? or Am I at my best and there will be no more improvement?". I've been there and everyone I know whose had a stroke has. The good news is that we as survivors "stroke experts" know that the 6 month or 1 year best is a myth. Progress, however, does slow down both in amount of and amount of time to see improvement. The key is never give up, never stop working to improve, never take on the thought "I can't..." or "I will never be able to...". Start keeping a journal not only for all your personal experiences but also to notate each and everything you notice that"get's better". No matter how small. During this time you may experience moments of 2 steps forward 1 step back or similar. Notate each one. Recognize where you know your body/mind isn't where you want it. What needs more improvement? Do I know what therapy or exercise I can do to spark those connections? Talk to your Dr. Contact or see your therapist (insurances will go as far as they are contracted and then you be proactive at home). Learn what you need to do if you already do not know...then work, repeat, repeat, repeat. That repetition is to wake up the nerve path, help the brain to learn and neuro plasticity. I know so many survivors can see and notate improvement. It may take longer and may be less visible. If you kept your journal, now is the time that you include those little things. Every once in a while sit down and read your own journal and you will see and know your improvement that may not have been so noticeable at the time. It is inspirational. The other thing you speak of, acceptance. Not to accept that you can not improve something but to accept you today each day. It is a process. We all have or still are there with you. It is a grieving process of your before stroke self and it is different for each person. Some people move along the process with themselves. Others seek therapy like talk therapy, cognitive therapy...basically a psychologist (BTW always keep your Dr. aware of any depression symptoms

...many stroke survivors need help with this. I myself see my Psychiatrist every other month.). Whatever is best for you is BEST. We are also great listeners here...ones who understand when it seems no one does. Please share, ask questions, vent, visit on the site. Enjoy reading and get active in the forums...you are welcome there. 🙂 Someone usually knows information they can share, have personal experience, or can help you find answers or help. Be kind to yourself. Don't be so hard on yourself when you feel discouraged. Learn to recognize even your smallest accomplishments

...they are milestones. Know you are not alone we are here and send you cheer, hope, and encouragement. Sorry so long...I'm glad you said hi. I'm Tracy, BTW, my bilateral cerebellar stroke was July 5, 2015. Welcome!

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Hi Nicole, yes what everyone else said. But also, make your goals as concrete and specific as possible.  Just strengthening my hand is too general. Make it opening the jam jar at breakfast or whatever suits your life. Brains tend to rewire better when the activity has a purpose.  Once you know what you want to achieve work out the process, strength and movements required to do it, see what you can do that's similar so you can work up to the real goal.  Also think about the complex movement pattern required to do the task. a lot of  things have to happen in the correct sequence, you not only have to turn muscles on with the correct amount of force you have to turn others off at the same time. This is where a PT or OT can be a real help. Once you have a better understanding of exactly what you need to do you'll be amazed at what you used to do without thinking, and less surprised at how long stroke functional recovery takes.  And when it comes to arm rehab "Gravity SUCKS".
 

In terms of the emotional adjustment it's very important to focus on what you CAN do. It's very easy to fall into the trap of what I can't do any more. remember, if you must think about things you miss it's "I can't do that YET" not "I'll never do that again".  Those things you miss doing are the things that become your goals.  And don't dismiss new ways of doing the things you used to do. You don't have to do things the same way you used to or the same way as everybody else.  There are lots of ways to adapt and tools available that help.

 

Also remember this is a journey that could easily take the rest of your life so make it enjoyable too.

All the best

-Heather

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It is very important right now that you remember NOT to compare your recovery to others. While we are more similar to each other than we

 are different, there are differences, and those differences are one reason that each stroke is different, even if the strokes appear to have been in the same part of the brain. Speaking of "part of the brain", where in your brain you had the stroke, and what part was damaged may be the most important factor to determine how the stroke will affect you. And now, the brain has an awesome task to do: It has to find a new pathway to the muscles that it needs to communicate with so that you can eat again (example). This process, called "neuroplasticity ", is new to the brain unless you've had a prior brain injury. And some new pathways are easier to complete than others. But, they all take a while to complete. So, when your progress seems to have stopped, it may be because the progress is occurring inside you where you can't see, as the brain continues to re-wire the connections between it and the areas that it lost communication with.

At about 6 mos. out, it's way too early for you to be wondering if you'll make more progress. More than likely, you will. It just takes a lot of time. We all complain about how slow recovery is. Just keep doing what you're doing, and get as much therapy as you can. Good luck on your journey, Becky

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Nicole, I can't add anything to the advice you have been given by the last letters but I can endorse them. I am in my fourth year of trying to recover some of the losses the stroke hit me with. It is easy to give up looking for progress and I frequently fall into this trap but fortunately the mood doesn't last long and I am soon back on the treadmill.

Deigh 

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On ‎11‎/‎21‎/‎2018 at 6:26 AM, NikalPikal said:

 My recovery was moving along really well, but now seems to have come to a standstill. I'm trying to stay positive and not succeeding with that lately. The mental and emotional aspects of the stroke are just now starting to hit me. I have had a lot more fatigue the past few weeks and I've just been *beep* off in general. I

 

Recovery can be a wild roller coaster.  The hardest part , for some, can be the tiny improvements we can't see . We , for as long as we can remember, have been able to do something and see a change in ourselves.  Our brain convinces us that we can do what we can't anymore but our body says NO because our nerve pathways are broken. Your brain is going to try to form new pathways so it's going to be working very hard and that is EXHAUSTING. So being fatigued is normal. I still get exhausted after a shower. I'm serious. I  normally have to lay down after. Every person is different. I'm almost 10 years post and a day doesn't pass that my stroke doesn't hit me an makes me feel like POOP. 

 

Everyday will easier for you. whether it is physically or mentally or both. 💗

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Hey Nicole

Looking forward to sharing your journey. 

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Thank you all for the welcome. It does make me feel better to hear that it's normal for recovery to slow down, but it never really stops. This seems like a great group of people and I think I will be spending quite a bit of time here.

Nicole

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Hi Nicole

 

I'm chiming in a bit late here;  yes it never stops.  For me, there are times when it feels as though everything is going backwards and getting worse, but that is usually when I am tired.  So my one piece of unsolicited advice is "watch your energy levels".  I know that I have a finite amount of energy, much smaller than pre-stroke.  Once I use it up, I am done -- I can't think straight, get depressed, make stupid mistakes.  So I try to monitor it, do important/difficult things early in the morning, take breaks.

 

With the recovery, every so often I catch myself remembering something and think "hey, a year ago that would have stuck for 5 seconds, now I can remember a whole day later".  Improvement slows but never stops, and sometimes seems to come in huge jumps.

 

My other piece of unsolicited advice is allow yourself to feel down from time to time.  This does suck, and in my case trying to be sunny and cheerful all the time just drains my batteries and makes things worse.  Every so often (might be days, might be minutes), I give myself space to find a quite corner and grieve. 

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Yes grieving is also "normal" and needs to happen. Just like if you lost a family member you acknowledge the loss and even wallow a bit now and then but then you pick up your bundle and keep going most of the time.  It may surprise you but post stroke life is often just as much fun as pre stroke life was.

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Welcome Nicole! You have come to the right place. Everyone here is so helpful and supportive. As a fellow “newbie” I know you have so many new normals. Everyone here has experiences that help us know we are not alone in this “adventure.” It took me exactly one year to find StrokeNet. I can tell you they have helped me so much! Just knowing that “stroke fatigue” is a thing. (It’s a thing)... helped me with my depression issues.  Hang in there...it does get better. My issues are very similar to yours...it’s been 18-months for me. Swallowing continues to be a problem, so I try very hard to not gobble up tasty bits of this or that, when I’m home alone. I try to slow down when I do..no more swallowing those chocolate chips and m&m’s mindlessly;-)) Weakness on my left side..all the advice they have given really helps. They also helped me to think of tasking with a purpose, opening the jar..(I use a big thick blue rubber band on most jars).. A little stronger now..always working on stuff..But that’s life..right? Welcome Nicole! 

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