It’s 8 Years Since My Stroke - What Have I Learnt?
2024 ж. 13 Мам.
10 841 Рет қаралды
Since my stroke just over 8 years ago I’ve learnt a few things that may be useful for you to know and may help you in your recovery. If you want to know what they are, please take a look at my latest video.
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Twitter: @brainattackmuse
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#stroke #braininjury #survivor #anxiety #fatigue #denial #recovery #neuroplasticity #brainfog #plateaus #selfidentity #sensoryoverload #stress
Totally correct. I had this " discussion " with my doctor this morning. Good guy but he said that him breaking his knee was an equivalent to my stroke. You have to go through it to understand what having a stroke is , and I do not wish that upon anyone.
Totally agree. It is so good to link in with others who understand!
Absolutely spot on in my current situation well said , its nice to know your not alone
Thank you, Courtney. That's why I do these videos, so we can have some sense of community. Look after yourself
Hello my beloved brother had a stroke on Feb 13, 2024 and still in the hospital right now, Mar 19, 2024. Hopefully, he will be able to come out better. It is indeed a life changing not only for my brother but for all of us. Thanks so much for sharing your experience, it helps me a lot being the one in Canada where my brother can turn to in terms of support (financial and emotional). May God bless us all!
Thanks for commenting and I'm sorry to hear about your brother. One of the reasons for doing my videos was to help both stroke survivors and their families and friends because it affects them as well, in a way of course, but the impact is huge. It's very hard for the family to understand what the stroke survivor has/is going through. There's the physical effects but the emotional and psychological effects are often neglected but are equally massive. The key thing to remember is that it's a brain injury and there will be brain damage. It's also a long, slow road so patience and determination is key. Please check out my other videos as they may help. All the best to you all in Canada. Regards, Andy
@@BrainAttackMusic thanks Andy! I will check on those videos and I am your new subscriber here. God bless! Keep going!
Thanks again Andy you are a great human being doing a good job helping others. World would be a better place with more people like you in it ❤
@@jangriffin-fi1yx I'm blushing 😀 Thank you, Jan
My Son had 4 strokes in Nov 2024, had to brain surgeries, paralysis on the left, his Fiancee has cancer that has metastasized, they are both in late 40s, they also have a 9 year old Daughter ,I'm the caretaker for both of them , he has been home four days, he is strong and determined, he will not let me do anything but pass his medicine, it is so hard not to just pick him up or put on his clothes, it's very hard seeing him in that state and watching her struggle herself, with all the terrible things the cancer is doing,sorry so long in comments but struggling mentally
My husband had a stroke on October 23rd. It's been 5 months and we have therapy now 3 times a week. He is better, but he has a long way to go. He has Aphasia and is unable to walk. What I noticed is people seem to disappear when one is sick. We get out as much as possible to have fun
I'm sorry to hear that about your husband. Making improvements after stroke takes a long time and involves a lot of hard work! And, yes, 'friends' disappearing is quite common, unfortunately. Sad but true. There might be other videos of mine that may be useful to you both. Please have a browse through my channel. All the best, Andy
You are together & that is wonderful. After my Husband had acute strokes we found the same, but so fortunate to have such a very loving supportive family, so blessed. Everytime we had appts we made the most of it by getting a coffee out & lunch. It was like date outings & brought great happiness to us both. Keep enjoying your outings together that is all that matters. Wishing you all the best & hope your Husband's health picks up in leaps & bounds he is lucky to have you ❤
@@jangriffin-fi1yx What a lovely post to read ❤
Thank you for such kind words. Wishing you life's best ❤
Thank you very much. I had my stroke 3 months ago. I made rapid progress in the beginning, surpassing my care team's expectations. But I keep coming up against things that surprise me, deficits it took me a while to notice. I am beginning to appreciate that I will still be recovering for a long while to come, definitely years. But it's an adventure comprised of many small victories that coalesce to form large victories, but only after a lot of work, as you say.
Yes, I totally understand what you're saying and that's quite common and bodes well for the future. It's easy to get a bit complacent and assume that progress is linear. It isn't!! However, if we keep working at it, more progress can come. It may be small, it may be slow, but it can happen. Additionally, it takes time to adjust and come to terms with, mentally and emotionally. Keep at it and all the best to you. Some of my other videos may prove useful as well. Regards, Andy.
Thank you for this! I had a right cerebellar stroke in November. I can relate to everything you said in this video. I play and teach the piano, that’s one of my passions and I hope to be back to playing and teaching again. I can play now slowly but it makes me feel sick. I’m in the go go go, crash and burn cycle. That is a huge adjustment to make. I’m used to handling a lot everyday and now I can’t. It’s confusing that I’m not the person I have always been. I need to get familiar with the post injury me.
I also had a right cerebellar stroke of November six so I’m like six weeks into this thing at frankly doing pretty well. I am fairly mobile I play guitar and I’m doing that well I’m back to work a little bit. You know I could do that remotely but I’ve got lingering balance issues but I also have double vision for which I wear a prism but I definitely have focused issues. And nystagmus issues Are you experiencing anything else similar type of issue? I would love to have a dialogue with you.
@@rcranky64 Good to hear from you, I’m glad your recovery is going well so far. I’m also doing pretty well! I don’t have effects to my vision. I get motion sickness very easily now though which I’m not sure why on that. My most outwardly obvious effects are with my speech (sounds strange and does not flow in a good rhythm) and my walking is a bit whacky if I’m trying to walk fast. Inside I get a lot of headaches and nausea, especially if I’m concentrating, off and on every day and I’m really tired. I do get a bit off balance too. Such a bizarre thing to experience!
@@fuzzybug29 so crazy right? My chief complaints or my really one chief complaint is my vision because I’m seeing double I have a prism that corrects that, but everything just seems harder to deal with just in general. It’s a very spacey feeling other than that I feel guilty complaining because there’s people a lot worse off …..unlike you my speech is fine my cognition my cognition is fine all that stuff is perfectly intact. It sounds like you almost had the opposite where your speech is affected but your eyes are OK… You’ll get your speech back have no fear and your balance will come back to. I worry about that my vision will never get corrected. I wear a prism in my glasses, but you can’t see which basically eliminates the double vision at the same time however, everything just still seems a little off with my vision just in general, and sometimes I have nystagmus, which is a beating of the eye, but that tends to get better as the day goes on. I wish you nothing but continued success, and I hope your recovery is speedy.
Be patient with yourself. One big contrast with a brain injury and a physical injury that I experienced was that after my stroke, it was tiring to form cogent streams of thought. After long conversations, I needed a nap to rest from the effort. Please be patient with yourself.
@@oaor2303 Such a nice reminder. Thank you! I have continued recovering and it’s going better and better. I do need to be patient and give myself grace.
Almost 12 years for me. I can relate to your comments. First your journey is your journey alone!! I remember thinking once I get home in my own house I'll be fine!!! So not the case. Relearning everything. Mentally was exhausted. It took over a year to get out of brain fog. Than I goot more of my current situation. Started searching Google for stroke therapy suggestions and read alot of testimony from stroke survivors. That was my beginning of understanding what I was really in for. Trying to get a great out patient therapy place was a challenge. Because finding for Nero therapy is different than hip replacing. Never had to think about that before
Great observations and comments. I'm sure others will benefit from your experiences. Thanks for watching 😀
This is my 7th going on 8th year. I wished I had found this video earlier (e.g. 2 years ago). You have described everything "I went through." And as I listended on I wondered to myself "how on earth does this guy know." I wished more neurologists and psychologists would have watched this video. Otherwise, it is almost impossible to decribe to the care givers. One example is when the nurse asked, "how did you fall? I said, "I didnt! The house turned!!!" She thought I was being sarcastic. The other thing you said was about 'crashing and burning.' I wanted to get back on the saddle from day 1. Yup, I crashed and burned. I had to 'sleep it off' for 3-7 days to recover.
Many thanks for commenting. I think the "lived experience' is crucial for stroke consultants to understand. Please check out my video titled "What happens when a stroke consultant has a stroke". My stroke consultant had a stroke about 3 or 4 years after me. He's written a book about it. Having been a neuro consultant for 30 years he realized he only understood stroke when he had one!!
Having a stroke is definitally a life changer. I used to ride a motercycle, and now I ride a tricycle. It's been almost 3 years. Certain things are difficult to almost impossable. It's good to find videos like this.
Thanks for commenting. I try to make informative content so I'm pleased you found it useful. Keep plugging away to try to make improvements. I was a bit 'lost' after 3 years so I know what you're saying. All the best, Andy
Hello my beloved brother had a stroke on Feb 13, 2024 and still in the hospital right now, Mar 19, 2024. Hopefully, he will be able to come out better. It is indeed a life changing not only for my brother but for all of us. Thanks so much for sharing your experience, it helps me a lot being the one in Canada where my brother can turn to in terms of support (financial and emotional). May God bless us all!
I am so sorry you have suffered strokes or that your loved ones have. They just don't affect the person who has had the stroke they ricochet & affect the whole family. I know how devastating & cruel they can be, take away so much. My Dad had small ongoing strokes, my Husband had an acute stroke then a bigger bleed 9 days later. Both were strong & fought the good fight, blessed to have had them for as long as we did ❤ Wishing all speedy recoveries & happier days ahead.
Hi Sir, l had stroke on August 2021, l am getting better but have some walking problems and balancing. I am doing everything to make myself better. Thank you Sir.
@@vijayakumari3126 Sorry to hear about your situation. It is still early days for you so please keep trying to make improvements. This is a very, very long process and it is easy to just give up. Please keep being positive as best you can. Regards, Andy
I’m 55 years old and year ago I was watching a movie in the wee hours and sons mom came from bed and we started talking and I couldn’t really think straight I had what they call word salad my ex and my son couldn’t understand and were looking at me like I was an alien. I went to the ER And they said I had a mini stroke within 24 hours I was 100% back to normal. I’m have anxiety about it and trouble staying asleep maybe it’s fear of not being so lucky next time
I think it's natural to have those fears and concerns following any health scare. It takes time to process what's happened and come to terms with the situation. The passage of time helps, though. All the best to you. Regards, Andy.
I had hemorrhagic stroke in 2013 when I was 53. Now I am 63
How are you doing? I’ve had a few mini strokes myself
How old are u havinga stroke?
I was 53
How many days you took for recovery? God bless
Just had an Ischemic stroke before Christmas great to see such an informative video for us sufferers. Gives us hope 😊
Thanks for commenting, Ash. There are plenty more videos on my channel which I hope will help you and others, too. I wish you well in your post stroke life
Thank you,its so hard to find sensible advice and understanding, i had a stroke 18 mths ago,no hand use still, can walk a little with a stick, need wheelchair for going out. My pain is increasing, my anger and sadness is increasing. Im a naturally very positive person, but am struggling with the loss of everything I loved best. Nobody warned us I could have seizures, so when I had one 7 mths after my stroke my poor husband was devastated. A doctor at the hospital told me people in my condition should have a non-resus order in place,just when i thought I was getting better!You are quite right about lack of understanding from others, I shall go watch your other videos.Thank you again.
Hi Dianne. Thanks for your comments. I totally understand. To be honest, very few stroke doctors see any stroke survivor after about 2 years so they have NO IDEA what can happen. I will be 11 years in May and am still making improvements. OK, they are small, but they are still improvements! Please check out this other video of mine as I'm sure it will be useful for you kzhead.info/sun/o76yf9uLjGKui3k/bejne.html The book is called 'Surviving Stroke' and is written by my stroke consultant (Prof. Udo Kischka) and his wife. After 30 years of treating stroke patients he had one himself and realised he got so much wrong in his professional career as he didn't understand stroke until he had one!! You can get it on Amazon and maybe you recommend it to your doctors? All the best to you. Keep fighting and stay positive! Regards, Andy.
To Dianne, i am so sorry you are going through all this. I felt all that you are feeling when i first had my stroke (2 years ago). And still have my moments of anger and frustration. I think i have come to a point of acceptance which is not like fate. I believe God never makes mistakes and He has allowed this and now looks to me to look for the positives in my life. Allow yourself time to heal emotionally as well as physically. Everyone hones in on the physical improvement and does not give us time to work on the emotional. I have had lots of help with the former, but they dropped the ball with the latter! My most embarrassing thing is my ability to talk! So I have found some helpful videos on u tube. They cover many aspects of stroke recovery but again i have not found any on the emotional so keep looking. Try and stay positive and do find someone you can link in with when you are facing those down days. We cant do this on our own! Even family dont really understand. Lesley Richards
@@lesleyrichards1088 Thanks for commenting, Lesley. You are right about the emotional side. I have other videos here about that side of things - working with a psychologist, the fear of dying, people who say 'you look good', etc. Please have a look when you feel able. All the best to you. Regards, Andy
I'm n the same boat
For someone who has had a major stroke, what an excellent commentary on what it's like. It helps to relate to understand what happened and what a stroke is really like. They're so hard to describe. I don't recommend it! For someone who is working very hard to overcome this in terms of years, it's very accurate. You have put into words some very good advice and wisdom
Many thanks for commenting on my video. I totally appreciate what you're saying. All the best to you. Keep working at it!
Spot on
thankyou for these words. Im coming up to 4 years since my "brain attack" the first morning after I woke up I was visited by a "consultant" (i use the term loosely) "Dont worry. you're young.. You'll be back up and running around in 4 - 5 weeks".... (I am not making this up !!!) I totally agree.. once the NHS physios go your recovery is 100% up to you. Never over exert yourself, but experiment with what works and what doesn't
I see what you mean by 'consultant'!! I know they're trying to be positive but, for heaven's sake, I wish they would be realistic. That's much more in the patient's interest! Anyway, rant over, all the very best to you and please keep plugging away. Thanks for commenting. Regards, Andy
thank you for the video
Thanks Andy
I think you are all fantastic take my hat off to you all for having the insight to reaching out for info. finding someone as wonderful caring as Andy here who offers helpful advice as knows first hand how cruel strokes can be "indescribable" comes to my mind no one truly understands till it happens to them or their loved ones. It is not an easy journey but have witnessed been involved & happy to be able to say with time anything is possible ❤ there's a life after strokes. Can recover live many years functioning well with effort & never giving up attitude. Personally haven't had strokes but saw loved one's Dad & Husband. Full time carer many years for my Husband who had catastrophic strokes no chance of recovery. ❤ & strong will being a fighter to live 💯 pays off. Strokes debilitating impact physically mentally exhausting, but patience eating dehydrating adequate rest all meds/appts rehab etc being surrounded when can by loved ones good recovery possible. Keep doing best pace yourself commend yourself for fighting on be kind to self. I am so proud of you all. Know you're thought of & that you are in many people's 🙏 Where there is life there is hope reaching out pays off ❤ Wishing good health & better days ahead 🌞
Thanks for this wonderfully encouraging and supportive post. It will mean so much to all of us on here. All the very best to you and thanks again. Regards, Andy
@@BrainAttackMusic Thank you Andy you made my day ⚘️ can see you have a beautiful heart & brain. I have always admired people who not only help themselves to improve their quality of life, especially after facing scary health strokes of any degree then selflessly simultaneously pay it forward to help others to alliviate their fears give hope improve quality of precious life 💜
I enjoyed your you tube! So encouraging! Keep up what ever you’re doing to make you so strong. I have pulmonary fibrosis. There is no cure. People who are well just don’t understand when you’re tired or can’t breathe sometimes.
Thank you, Joann. I know someone with PF so I understand a bit about it. With any serious health issue, people generally don't understand unless they have the same issue and it's the same for our medical professionals too!! Thanks for commenting and keep fighting ❤
I am a stroke survivor almost 3 years since I had through and I am still hoping with the loss of my job the last of my mobility ECT 😢😢 I am only 36 and I have strokes when I was 33
3 years is quite early days and you're young, so please keep trying to make improvements. What you put in is what you get out 😊
Praying for you. I know how emasculating and frustrating it is
Thanks
Been dealing with brainstem stroke(s) for 7 or 8 years. Its tough stuff to deal with. In one hand im lucky to have some mobility on my laft side but on the other not bad enough off to get any help. Its hard for people to understand what a struggle it is. But God understands and i have faith he can heal me
Brain stem strokes are nasty as (I'm sure you know) the brain stem controls the automnic nervous system. It's a small but vital part of the brain. I sympathise with your circumstances. It must be really tough. All the very best to you. Regards, Andy
Thankyou so much xx
And thank you for watching 😀 Regards, Andy
Fantastic video. Thanks.
Thanks for commenting. I'm delighted you got something out of the video. It makes it all worthwhile for me. All the best, Andy.
Almost 2 years hemoratic stroke. Just looking for guidance
check out the "recovery after stroke" podcast I am 14months out.
Yep, I was on Bill's podcast a while ago. Here's the link kzhead.info/sun/gN2Oe9aurZGCYI0/bejne.html He's a great bloke!
An increase faith in the Lord has help me get over anxiety and depression big time. Don't ever give up! And always bump up energy when your down. Don't the laziness get down. Always on the move. By the way, I had a stoke 4/3/2024. May the Lord give you strength for your recovery and life's obstacles.
Thank you so much for youwisedom I appreciate the kind words. The lord is good, spared my life and I am growing closer to him everyday.
He speaking facts
You would be a great voice actor
😀
Good work
Thank you. And thanks for watching. Regards, Andy
I couldn't agree with your first point more, although I must say my family and friends cocooned me from negativity. No one who hasn't experienced it could ever understand what it is like for your brain to so completely let you down. Contrasting it with other injuries and ailments is SO very correct. I went from a Type A professional to being bathed like an infant. It was mentally jarring to the extreme. Another challenge was being patient with myself.
Thanks for commenting and your observations will help others, which is the whole idea of my videos! I hope you're continuing to make improvements. Regards, Andy
Wow good to hear you story and resilience. I'm 2 years into my stroke. How are you doing now? Do you have strength on your affected leg now. God bless you 🙏🙏🙏
Hi and thanks for commenting. I didn't have an affected leg just my whole balance was 'out'. I'm now 10 years and 7 months on and still walk with a stick, short distances. It's a long road, there's no quick fix or magic bullet, and progress is slow but it is progress! All the best to you
@@BrainAttackMusic iI wish you substantial progress
You too 😃@@louismzobe3073
I am 2 years from my stroke and am now 81 years old. I have been doing physio weekly since but my main problem is aphasia. I find this very embarrassing and have difficulty taking part in conversation. I have other phyical problems as well. I definitely have neuro fatigue and that can inhibit going out. Can you give me a link to some group that might encourage me? There is no support where i live. I live in Australia by the way.
Hi there. I don't groups in Australia but there is an Aussie stroke survivor called Bill Gasiamis (I've appeared on his podcast). If you search for him on KZhead you will find his channel and email address. I'm sure he can help you. All the very best to you and thanks for reaching out
Thank you for your reply. I will follow up. Just want to say your iTubes have been most helpful and have been an encouragement. Lesley Richards
@@lesleyrichards1088 I'm delighted to hear that, Lesley. That's precisely why I do this. All the the best to you. Regards, Andy
About a month since my stroke.. it was a Tia One. Still blocked on my left side but getting better every day. I'm pretty resigned to NEVER being the same again. I now feel panic in public whereas i was vivacious and not bothered by situation. I also think that i have brain fog and get confused. Just hoping that this works out in time
The key thing to understand is that this is a long, slow process. Very long, very slow. We have a brain injury. It's not like getting over a broken leg! I am coming up for 11 years in May so I understand where you're at. Mentally, it's a huge amount to process and come to terms with. Try not to rush things. Learn to pace yourself (that alone took my several years!!). And don't be hard on yourself. Thanks for commenting. Please look at my other videos. There's one on brain fog and neuro fatigue. All the very best to you. Regards, Andy
❤ to anyone who has suffered any type of stroke I wish you all the very best & a long healthy life with much happiness. Strokes are the pits my Husband was my hero, I'll never forget him ever. He suffered immensely had survived catastrophic strokes was a miracle personified to have survived as most don't. I felt all his pain but we had such a powerful love for each other. I fully believe love conquers all & it kept him alive, plus fact he was so strong & had strong will to survive as long as he did & be together. Will never forget the ❤❤❤❤❤❤❤❤ of my life & thank him from the bottom of my heart for staying with me, fighting the good fight to see all our 4 kids marry & 7 beautiful Grandkids born 💞
@@jangriffin-fi1yx That's both heartwarming and heartbreaking to read. I think family can be a huge motivator for stroke survivors. It is for me. Post stroke, I've seen both my sons get married and I'm now a Grandad. I am so fortunate to have experienced all this. All my best to you. Regards, Andy
@@BrainAttackMusic Thank you 💖 that is wonderful to read what you have written, you are blessed & so is your family to have you with them as those are very precious memories & huge milestones we all dream about achieving. I agree "family is everything" Keep up the good work 🤗
I had a miner stork 4in one go for 7 years now I can walk àlitte but not as before still need some help
Thanks for watching and commenting. Keep working at it. I will be 11 years in May and still walk with a stick, short distances, but it could be much worse! All the best to you. Regards, Andy
I have
I’ve been 3 strokes
@@user-ez1dz3so6n That's tough. Really tough. You have my sympathy and respect in equal measure. All the best to you. Regards, Andy
What is ur stroke name sir
It was an ischaemic cerebellar stroke plus I had hydrocephalus and so needed cranial decompression (6 hours of brain surgery)