3 years post and finding it quite hard

Hi,

I’m beginning to struggle with my post symptoms. I’ve been pretty upbeat till now. I’m still not walking independently, my balance is still poor, my vision is impaired to name a few. I know we are all unique in symptoms though I’m finding I’m extremely unique as I have never found anyone similar to myself. I don’t believe it’s not going to improve more as I feel it will. I go back three years and I couldn’t stand, fast forward to present day and I can rome around familiar settings. The damaged area of the brain is still juddering around. It controls my movements, it’s very disheartening. I just want my life back where I can come and go. I can adapt to majority of the symptoms, though my walking and my brain judder I really want to correct. I know there no get better pill, oh how I wish there was. It’s the time is a healer situation. I’m concerned that I’m going to lose a fair few years repairing from this. Any advice much appreciated. Jo

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Jo,

I can’t tell you anything useful, I don’t think. I am here wishing you on, like crazy. I don’t think you’re alone. I know @Teiry has been fighting to regain good movement and I know @Charles3 was very disabled. These are the only guys I can think of for the moment, and I know I’ve mentioned Teiry before.

The one thing I can hang my hat on slightly was the film of Richard Gray, who I’ve probably mentioned before, “My Amazing Brain” and in that I’m sure Richard spent four years to get back to a decent level of capability. So don’t give up yet. It’s as hard as hard gets, I’m sure, but the only way to get better is to keep trying.

Three years isn’t “early” in your recovery but it isn’t the end.

Sending you my very best wishes, as always,

Richard

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CHARLES 3 HERE to give you update. Of course this is his partner as he still can’t type and his speech not clear enough for phone to type his message. As I type you this, Charles is in the other room exercising on the mattress on the floor. He exercising 3 to 4 hours everyday. I also have a great therapist who sees him making big improvements who comes to our home. Charles legs and arms are very strong. His brain still having difficulty sending signals to them, but it is coming back. This past July was his 4 year post.
Right now he is able to roll around, sit up in bed and on the side of bed alone. He also is able to get up on all fours, sit on his legs and raise himself up on his knees all by himself. His goal is still to walk on his knees. This way if he falls or tires out like he does he can go back on all fours and then lay on his stomach without help. He is progressing and the shaking is slowing him down but improving. I also was teaching him how to crawl before therapy without success but it did prepare him for practicing getting up on his knees and standing. He is very patient and this therapist is excited at what he sees. Not sure what other people are going thru but this getting on his knees also is to help with balance and if he shakes he stops, takes deep breathes and when the shaking stops he continues doing what he started. This is the first step to walk again. He can stand holding on to kitchen sink. Last week Charles answered a phone call alone and the person on the other end was able to understand him… That was big deal. Now to teach him to dial 911. Im sure he will be able to do it so the times I have to leave him alone, if he needs help he will be able to get some. He is eating grapes, apples plums by himself. I also bought this thing that are small little round magnetic balls that he can work with so he is able to pick those up and that will help him eat by himself alone. He can’t lose them because of them being magnetic I try to get new things for him to do to keep it interesting. One thing I noticed and this therapist is the only one who agrees with me, if your trying to do something and you can’t do it or you reached what you think is your limit, try doing it a different way. It will work and you will pass by your limits. Sorry this was so long. I havent had much time to stay in touch with you guys but I have been reading you messages. Feel free to write to me anytime. I will do my best to help anyone who reaches out. Besides taking care of Charles. I am the manager of a 32 unit cond for 55 and up. The residents have been keeping me busy with things they can’t do. I usually bring Charles along so he can practice his speech. He finally has an elect wheelchair that he struggles with but does get around with it. Hey I had him waxing the bottom of my car. It didn’t matter if his hands shook as it worked great to remove wax and made him feel great he helped me wax the car that takes him to his appointments.
Saved my back ha ha. Stay safe and don’t give up. Change it around.

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Dan,

Thanks for that update. It’s fantastic to hear from you and I love the positivity that I hear in your words! So, so different from when you were struggling to get the state help that you needed. I’m also loving your creativity to help Charles to improve. Well done!

I know Charles has got much bigger limitations than you, Jo, but I hope it helps to hear from someone also fighting to recover post stroke.

Dan,

Key question… how is Charles feeling about his recovery: is he fighting it with the same positivity that I’m reading into your words or does he get down about how he is? I can understand both possibilities.

Love all,

Richard

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Cornishwaves!
I remember you! I think you were one of the first people I interacted with here! :smiling_face_with_three_hearts:
I survived a ruptured cerebellar AVM 27 years ago. I am so sorry that you are still struggling with significant issues. My recovery was no ‘piece of cake’ either. I dealt with years of depression. I couldn’t believe that no matter how hard I tried, I couldn’t get my old life back… especially since I ‘looked’ normal to others. My life had changed 180 degrees. I could take care of my everyday needs, but everything else was altered. It took a very long time to work through all that. I had to realize that my brain had its own schedule for recovery. Over LOTS of time, I learned to recognize improvements. I sought out new means of occupying my time, many of which I never would have discovered had I not had a stroke. These things have enriched my life and made it much easier to cope with the losses and what could have been.
Blessings to you along your journey.

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Thank you for taking the time to acknowledge my post. As you can see from my replies, there’s not many who have experienced anything of similar nature to myself. I feel this is why I’m struggling with any of it now. It’s ongoing and I really believed I would be that bit further forward than I actually am… Thank you Jo

Hey Jo,
Unfortunately there’s many of us who thought like you “…I really believed I would be that bit further forward than I actually am…” and coming to grips with that reality was a nasty little trip. I didn’t want to be ‘here’ I wanted to be way further ahead. I pushed myself to get further but as much as I pushed my body pushed back.

Eventually I had to learn to accept it all and to a point I have. I still have days when I push it too far and I know I’m going to pay for over doing it, but I believe I now have a better idea of those limits and the signs that I’m reaching those limits before I become overwhelmingly symptomatic. Part of the problem I have is that my limits vary, so what’s OK today maybe too much tomorrow. I never really can tell. That’s why for me reading the precursor signs is important.

Cornishwaves, I can assure you finding someone in exactly the same position as ourselves is near on impossible. Some may have similar experiences but differing outcomes. I’ve lost count of the number of people who have said “Ohh I know someone who has that…” only to find no comparison. Location and size are only 2 of the variables and everyone of us has to take our own journey. An example of this is within my own family. 3 of us have required neurosurgeries and yet none of us had the same result. One passed away due to a serious neurological condition, one has a permanent brain injury and the other suffers with daily chronic pain. We’ve all had similar experiences, but none of us have had the same outcome.

Merl from the Modsupport Team

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Well you guys certainly got my attention LOL!! I apologize. Work has kept me pretty busy that I just saw this. I do have my moments especially recently where just like you I do want a take me back to normal pill. Just yesterday I was trying to do PT at home and I could not kneel down just because my left knee would not listen to my brain’s command and let’s just say that discouraged me ALOT when I’m normally all upbeat and positive about recovery but yesterday was definitely not the case. I was crying for hours and afterwards my poor right knee hurt for compensating even though I didn’t really kneel down. You got all of us although like you mentioned we are not all 100% alike but what we can tell you is that we lost something and we wish to regain it EVEN IF it’s just independence or normality just anything and at some point having each other has pushed us forward so it’s part of the journey and welcome aboard!! :slight_smile: I don’t know why that sounded not as nice as I wanted it to

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@Cornishwaves you got this!! I promise you this:)

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Hey Modsupport I spent the whole summer pushing my body too far and now I’m burnt/stressed out do you have any suggestions on how I can find peace with my situation?

Peace? No, this is something I’m still trying to find. I had a large amount of blame due to how my scenario all turned out. There were many signs and opportunities over the years for a diagnosis that were missed and I’ve lost count of how many times my mind has taken me to the ‘What if’s’. What if the signs had been investigated properly? what if a diagnosis had been made sooner? What if I’d made more noise about it all. And those ‘What if’s’ can go on and on and… So ‘Peace’?, nope, sorry. Just a level of frustration for me.

Acceptance? Sometimes, yes, sometimes, no. I have had to re-learn all of my limits. Tasks I used to be able to complete easily can at times overwhelm me. This can be very frustrating. If I can establish a reason why, like ‘I did too much yesterday’ and I’m paying for it today or ‘I haven’t eaten properly’ so I don’t have the energy or ‘Didn’t sleep well last night’ and I’m just exhausted etc I find I can justify it and this makes the acceptance a ‘little’ easier.
But when I can’t find an answer to ‘why?’ My annoyance with self can be HUGE. But I know and I have to accept it all, I have proven to myself that sure I can push my limits but there is always a consequence for doing so. In knowing this I have to weigh the + and - of doing it. Yes, I can push myself to complete a task, but the consequences of doing so is that I could be bedbound for 2 days in agony. So, I have to ask myself ‘Is it worth it?’ and ‘How else can I get it done?’

Something I have found is that by taking a task and breaking it down into steps. For example, I have a large yard. My task is to clean up and tidy the yard. I have a dog, he makes a fair mess. So I clean up his section of the yard, then reassess ‘Am I OK?’. Next step, clean up ready for mowing. Put garden hoses and tools away, then reassess again ‘Am I still OK?’, if the answers yes, then I’ll continue. But if the answers ‘No’, then I have to stop or there will be consequences. By breaking it down into steps I’m not looking at the whole task being completed in one go and I seem to be more at ease with myself in the steps I’d succeeded in completing, rather than looking at the whole task which I hadn’t finished. And I seem to be able to accept the small successes rather than the ‘whole’ as a failure.
I hope this makes some sense.

Merl from the Modsupport Team

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Your answer makes tons of sense! This journey has been so hard and I can definitely relate to the frustration!
Thank you!

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As difficult as this is for you and how different you may feel compared to others… remember you are you & that’s what makes you special! Never give up the fight you’ve come this far & it will all be worth it for the end result… stay positive & keep fighting, yes it’s not easy but it will make you stronger & is what will defines you… I have the utmost respect & admiration for you & your fight… God bless!

Hi Cornishwaves, It seems you’re pretty darn high-functioning to me if that’s any consolation.
Here’s your reality check: We are all “going to lose a fair few years repairing from”…something! Everyone, sick or well, spends a good chunk of life recovering from something.
I know you were referring to your physical process and I’m not being callous at all. Pain is hard. Helplessness can feel agonizing.
On a practical level whether it’s a cat, dog, emotionally injured person, or a sad child, take a few seconds and show or feel empathy. I’m sending you positive vibes. Greg

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Hey, I am new to this thread and only have two months after surgury under my belt:
If I had one advice for you (and implying that you don’t already know about it) than I would recommend you to do as much exercise as possible (without taking any risks of course) since exercise in many studies has shown to improve and increase neurogenesis and thus can accelerate recovery, regardless of the exercise that is made. I had a lot of strength exercise in Rehab and I am very certain that it helped me get to about 85% recovered in just 2 months. Of course it’s not a silver bullet, but I would assume that many with our type of issues can fall into a habit of resting and missing out on exercise. It also helps with moral and the mind.
Wish you best of luck!

Marcel

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Thank you Richard!! :slight_smile: still fighting ti regain what I’ve lost almost 4 years later lol!! I have said it before and I will say it again: hyperbaric therapy sessions are God send but costly and cbd :ok_hand:t3: They make a great amazing difference at least in my case. And well as for balance I have learned to trick my body by lifting my good arm to the hight of my spastic left bad arm and I can climb steps or walk perfectly and I rarely use my cane (my security blanket) I have graduated from it and can freely roam without it even at night without mydarn afo but definitely here to help if needed even if it’s to teach a trick or two lol!!
Oh!! And people… invest in the powerplate!! It’ll bump up your muscle exercises. They showed it to me in pt and I immediately bought myself one. Costly but so worth it!! Helps alot with muscle strength and relaxing your spasticity. (Still use cbd and baclofen AND botox…it’s no miracle cure but sure does amp it up to feel a bit more normal most of my week)

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Teiry,

It’s good to hear from you. It is @Cornishwaves who needs to have the encouragement to keep on fighting. However you two can push each other, lean on each other is what I want to try to curry.

Very best wishes both of you,

Richard

Hi Jo, I have just joined and came across this post - was just wondering how you are getting on? Ashleigh

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Thank you @Teiry for your reply