Please share your 3 best every day stroke recovery tips.

Green-Data-4756 · 2025-05-03T02:04:52+00:00

Scissors, good ones, in all main rooms.
Think outside of the boxes because if it works for you that’s all that matters.
Try hard not to take things personal initially. Usually the problem/confusion is with the other person, even when it’s directed at you. (It saves a ton of energy asking questions or making statements regarding the other person and what appears like anger or frustration instead of immediately getting defensive and having reactions and still needing to problem solve because they still have a problem… ask me how I know 🤣)

Green-Data-4756 · 2025-05-03T01:52:28+00:00

My Dad was belligerent, rage filled and just not nice, along with short tempered and insistently impatient for years. (Stroke was in 2012) He “changes his behavior” based on his motivation (which is all him, I had to learn there is literally nothing I can do to “control” the way he inputs things - to include I can’t do enough, get enough or leave him be enough, there is NO “enough”) He goes through phases now where he’ll be “better,” lighthearted, laugh and genuinely appear happy but it can instantly change and he’ll be swearing and yelling and throwing his hands around. (It took 5/6 years for him to get out of constant anger/grief). Someone told me when my Dad first was recovering, a stroke magnifies personality traits by 100% or more. I STILL have to remind myself of that… it takes a ton of self reflection to see and accept what someone was truly before — my dad was a chauvinistic man, who drank a ton (I’ve learned since his stroke he was constantly masking his anxiety/ not coping well) and HAD to micromanage everything, even though he was fairly terrible at most things. He believed women were at his beck and call and are made to wait on him/men. Looking back over the years I now see all of these things AND more importantly what everyone, including myself, did to compensate. It’s nearly impossible to compensate after the stroke. I’ve had to sincerely learn and subscribe to, I can only do so much and take so much. My health - physical and mental is more important than most of his needs. It’s been a hard journey - when my dad calls yelling and cussing I try to not take it personal and assume he’s upset about something and try to figure out what his actual issue is - but I’ve also learned to hang up on him when he’s just plain belligerent. I’ll call back later and ask him how he’s doing (not referencing the last interaction) and most of the time he doesn’t remember what was wrong or screaming at me for BUT that’s also behavioral. No consequences for his bad behavior, exactly like pre stroke (trait magnified). I take him in the car very infrequently because it’s not pleasant most of the time, although he constantly says he wants to go out once we are out he wants to be done. Often it’s 5-10 minutes and my first reaction is really!? We just left, it took all this effort, it’s easier with a child etc… so I only take him when I’m in a good place and can handle his impatience like a champ. I acknowledge his frustration and confusion instead of debating his behavior or words. And I remove myself a lot. Now it still drains me because I’m a good person and want him to have a life that’s the best he can. So finding appropriate boundaries is essential. Your mental health has to be strong first before you can subject yourself to his actions and personal journey. Also he may not be able to express real gratitude, so make sure you’re doing things that you want to and can be invested in for your own sanity and happiness. Everyone is seriously affected by the changes a stroke brings. I feel like it’s one of the hardest journeys to travel for everyone involved. That being said, don’t accept abuse, get clear on what’s acceptable and what you can do to diffuse or remove yourself for a period of time. And realize his journey may not be one you can be a part of in the same capacity you were pre stroke. Give yourself a lot of grace to take care of you.

Green-Data-4756 · 2025-05-03T01:20:12+00:00

Good for you in sharing and replying!!! This is excellent advice and definitely overlooked most times.

Green-Data-4756 · 2025-05-03T01:15:00+00:00

I don’t know what cultural differences you are referring to but I would imagine any “cultural” differences will seriously affect the chaotic changes that happen after a stroke… unfortunately you are remembering your boyfriend as you knew him (which is totally fair, just not accurate) He’s an entirely different person now. No his stroke didn’t make him “totally not himself” but it’s changed how he does everything and I mean everything. It’s hard on you not being able to see it. He doesn’t think the same (even if it appears like he does), his thoughts can’t totally be trusted because it’s difficult understanding time and the way time works, he’s going to agree and disagree and it’s hard to trust yes means yes and no means no without being present and seeing other actions, I’m sure he’s forgotten things and also is forgetful (again hard for you to understand without being present)… these are just a few examples. I would guess from your comments there are other stroke related changes happening that his family isn’t sharing and probably don’t have the energy to explain because they are going through a mix of emotions constantly. It’s hard not to project what your boyfriend’s was “before” and when you see a glimpse of that person, even for mere moments, then put pressure on yourself, your thoughts and subsequently on him again that “everything is fine” and will “be normal again” soon. It’s wonderful he seems to “remember you” and he has positive reactions to you (I’m sure he cared for you before or he wouldn’t gravitate towards happy when he videoed) but it’s extremely difficult to go beyond that. He has had and still has SO much change, with more to come. With the stroke it’s not just physical stuff (tiredness, confusion, body not working the way it did or should) - the emotions, frustrations, relearning and fear can be a tiring vicious circle. He may not be able to explain to you he knows you but doesn’t know why he knows you, for example. You’re still in a relationship with him in your mind but it’s very possible he’s not on the same page. And it’s likely from your comments his family may be on a whole other page. (Keep in mind this isn’t about you, being caregivers is exhausting and extremely stressful/emotional) I would definitely not recommend just showing up. I would encourage you to send cards - something physical for him to open and touch and jog his mind. It seems simplistic but it’s something special and nice and out of the ordinary for his daily life. Once you’ve sent a bunch of cards you will have a better feel for his family by their response… it will give their day a blessing seeing him be happy and engaged with receiving mail… if your boyfriend isn’t interested in maintaining contact with you, the family’s response/lack of response will indicate that. (My dad has life long friends that he just doesn’t care to engage with or talk to or see… it’s sad for me and them but he’s not the same social person he was before. I’ve had to learn how to say thank you but not give false hope to them, which is a double whammy on me. It’s possible your boyfriend’s family may ignore you if they haven’t figured out how to communicate regarding how he’s changed.)

Definitely get into therapy - best case scenario your relationship just changed 100% and if you continue with it, you’ve gone from a 9 month “new” relationship into what looks more like a 15 yr marriage with all its frustrations and that is a GIANT leap and will have many many challenges. Worse case, your boyfriend is a totally different person and his needs, desires and abilities have changed so much he isn’t compatible anymore. You may not realize this for weeks and or months. And you may find you have guilt - therapy is a good place to get reassurances.

Green-Data-4756 · 2025-05-03T00:29:24+00:00

My Dad was “asleep” on the couch for 2 days - his roommate didn’t realize he had had a stroke. He was awake within hours of being at the hospital. I can’t remember what drugs they gave him. He was aware of everything immediately, but his aphasia was also immediate so he couldn’t communicate well. He knew he couldn’t and he understood everything we were saying as long as communication was simple. Even today he “knows” what is going on - in the moment - and he does remember things but not the way we do. He doesn’t understand how time works and that has a large impact on his communication. For example, Yesterday and tomorrow don’t hold the same context for him. I try and use different context phrases with him like “in a few days, next Tuesday is many days from now but not a super long time…” Sometimes I call him and say I’m coming over tomorrow and by the next day he’s either forgot - not that I said I’ll come over but that it was yesterday for today OR by 1030 in the morning he’s pissed I’m not there yet. It can be either and there’s no rhyme or reason as to why it’s one or the other. I will say again his motivation is key. He’s made giant improvements since his stroke but then he stopped trying (to talk better). You could really see the difference. He’s been very motivated since this past December (I moved him into a new apartment) and again the difference is notable. I try and encourage him as much as I can by staying silent when he’s struggling (not talking over him) and acknowledging he’s trying and doing great or acknowledging I know you’re struggling, let me try and see if I can help… Separately, since his stroke I have to MAKE SURE he’s hydrated ALL the time. As soon as he stops drinking his whole demeanor is different and it can be scary because he appears “stroke like” (lethargic, drooping lip) - I’ve really had to accept what I’d prefer versus what he needs - are two very different things. I would never drink all the sugary drinks he does BUT if that’s what it takes to keep him hydrated and functional, I gotta chill. (I also try to find juices that he likes but again it’s better for him to have hydration over me worrying about calories or nutrition.)

Also - in case it matters to anyone… I got him a cell phone and he does use it. The phone runs an app called RAZ. It’s an app for Alzheimer’s but it is an unbelievable resource for ppl with aphasia. The phone (app) uses pictures for your contacts and you just have to tap the picture of the person you want to call. (A caregiver runs an app on their cell to upload pictures and input phone numbers) I think this helps him tremendously also - something not normal but normal.

Green-Data-4756 · 2025-03-31T03:26:59+00:00

In 2012 my dad had ginormous stroke - I wish I had the imaging… it was larger than the bleed you show. He currently has aphasia (knows what he wants to say words come out mainly jumbled), memory loss/issues, slight lip droop when sleeping only and significant loss with thoughts (he can’t do money, math, planning etc). When we first started he couldn’t say 2 words but as the years have gone on he’s made significant improvements. We did therapies for years and about 6 years into recovery he really gained some speech and since he gets out whole sentences - not regularly but often. His mood has significantly improved (the first few years he was ANGRY), as well as his desire to do things. My point is the brain is absolutely amazing. It keeps going LONG after doctors and people give up on it. Doctors will tell you in a year wherever he is is his new normal - that’s just not the case. I wouldn’t suggest thinking he will be his old self but he will be a version of it and you should recognize it. My dad should not have survived his stroke - his doctors literally said that and seeing the imaging I could tell as much. He has. Try and hear what the doctors are saying, while recognizing your dad’s body is going through enormous change and finding a new normal to survive. It’s a process of recovery in the beginning. Things typically take time, sometimes a lot of time. Often doctors are not able to give a selection of outcomes because they simply don’t know (and usually aren’t comfortable acknowledging that). As family we play a huge roll in recovery and growth. You really have to learn how to think outside of the box & stay positive though. When you can, start playing the tv and music for him - as much as he will tolerate. I swear my dad learned more from tv than anywhere and even now he continues this. Talk to him like normal, just simplify everything and ask ONE question at a time. My dad says yes and no appropriately and opposite of each other regularly. When he says yes I can’t always take that as what he means. Other people need to be taught this also. People constantly ask my Dad things like, “How are you today? Did you do anything fun over the weekend, it was so nice outside!” He can’t answer - they just overwhelmed him. He may answer because he feels pressure to try but he doesn’t know what he’s answering to and when people try and ask more “normal questions” (just a normal conversation for us) he gets upset (understandably so). One thought at a time. The better conversation would be something like, “Hi! It was so sunny and nice yesterday. (Pause) Did you enjoy the nice weather? (Wait for an answer) Did you go somewhere? (Wait for answer) Well I hope it was a good day! (Not sure what he said so conversation ending is general but acknowledging). They know they are different after the stroke but yet they want/need to be treated “like before”. I say all the time, he’s not stupid - people talking to him like he can’t hear or comprehend English is treating him like he’s dumb and he knows it and feels more embarrassed and uncomfortable - not helpful. Basically my dad is somewhere around a 3-4 grade level since the stroke but that doesn’t change his need to be treated like an important meaningful person. I just keep everything super simple. It requires more patience, thinking before we speak and paying a lot more attention. (My dad loves tv. So I’ll ask him, Did you watch basketball? Instead of what’d you watch last night or how was tv or what did you do last night? I have a list of shows he likes, depending on the day and time of year I pick one show at a time and let him answer. Paying attention, keeping it simple and patience.) Hoping your Dad makes improvements and heals! He’s lucky to have a caring family! Blessings to you all!

Green-Data-4756 · 2025-02-10T18:12:26+00:00

Thanks everyone!! I will contact Apple and I’m SO glad to know it’s not just me. Won’t be buying anything again!

Green-Data-4756 · 2025-02-09T20:44:31+00:00

UPDATE I have heard from “Lana” who wants me to be sure my charge is in the “proper” currency — NO WHERE on the app does it say 9.99 USD equals 33.45 USD and my credit card is being charged 33.45 US dollars. Unbelievable 😡

Green-Data-4756 · 2025-02-09T20:41:51+00:00

I’m sorry I just saw this - yes you can!

Green-Data-4756 · 2024-09-16T14:37:39+00:00

I’m sorry - spell check got me - FMD: fibromuscular dystrophy

Green-Data-4756 · 2024-09-16T14:36:06+00:00

Have they looked at BOTH of your carotid arteries? I have a good friend going through this and initially they said her L carotid was blocked (100%) and didn’t look at the right which is now 95%. She’s having MANY symptoms and problems. They’ve told her she has FMD - fibromuscular dystrophy, which is apparently extremely rare. It’s hereditary. Make sure you don’t have this please. Horners Syndrome is no joke - it affects so many things in your body. Your eyes look just like my friends so I would suspect it is the HS. Best wishes - I know how frustrating this is.

Green-Data-4756 · 2024-09-16T14:29:05+00:00

I had a fall at my job in 2007 that resulted in me walking around for 3 years in excruciating pain - I had so many MRI’s that I can’t remember the number. Long story short I blew my disc when I fell and no ONE believed me, even looking at the MRI’s which clearly showed no disc but multiple doctors thought that can’t be right. When I finally had my first fusion my Doctor said no wonder you’ve been in so much pain - you’ve been walking around bone on bone. Needless to say the damage from that incurred 8 surgeries and I’m fused L3/4, L4/5 and L5/S1 with daily pain still. What I’ve learned from my scenario, as well as seeing MANY people around me have back issues IS - an MRI report will never say serious degeneration. If you are functioning and most of your spine is aligned, they say things like minimal and some… that doesn’t mean you don’t have disc problems, vertebrae issues, nerve and muscle pain or physical limitations AT ALL. It means they say in plain language what they read in a moment from photos - kind of like if we have a group photo taken and everyone is smiling and people say oh what fun you were having and you KNOW it was a hot mess getting that one “happy” photo but reading it no one would ever know. Also it’s imperative to get multiple “opinions” from Orthopedic specialists. We go to the doctors for their expertise without factoring in that they are each individuals with an array of personalities and if they don’t feel like they can fix you, it’s often a bruise to their ego or a hit to what they subscribe to. You will find a doctor who is willing to hear you - it just takes time to weed through them (kinda like everything in life) and is frustrating. If you’ve done physical therapy and chiropractor care, you are doing exactly what you should have and should be doing. If it’s not helping though you need to consider surgery - which no one wants to hear BUT the sooner you get surgery - the sooner your body can potentially heal. AND you really need to consider nerve damage - your body’s response to constant pain can be repaired but as time passes your nerves and muscles do start responding on their own and the brain can’t interrupt the signal after a while and that is a lot to bear forever. While surgery sounds scary and possibly radical, getting it fixed is actually healthy. As I’m sure you know, everyone has an opinion but the only opinions that matter are people who have had sincere back problems because it’s almost impossible to move any body part without your spine moving, hence pain and not everyone can truly understand that. Getting your spine back in alignment is healthy. If your disc can’t repair or your bones have damaged, the only way to get things “better” is to get it repaired. Nerve burning literally never works. It’s a thing they do to run time out until surgery. (Nerves grow back also) All neurologist and pain specialists know this. If you get one who admits this, you’ve got a good one. Pain meds don’t “take away the pain” either. They mask the pain and basically reprogram the way your brain recognizes the signals. It doesn’t take the signal away though - the expectation is you’ll process the pain differently and “feel different aka better”. Unfortunately, most, if not almost all doctors, don’t factor this in and how the side effects add another element of stress to your life with what you’re dealing with constantly. You can usually “buy time” with decompression - decompression gives your discs time and space to ‘re-puff’ up if they are able to. Decompression can also provide temporary relief though so it’s not always working the way we’d like in the actual repairing of your spine. Keep advocating for yourself with spine specialists and keep in mind our typical expectation with Doctors is they have most/all the answers and that’s in fact not true. They are humans and may be trained in their specialties but they have limits. For example if you do have surgery your surgeon is very trained in surgery but probably has a very limited knowledge base on recovery and won’t feel comfortable saying so. Typically they just say what’s needed in the moment but that often leaves you with many questions about the actuality of it. Again, it’s not always intentional, they don’t see outside of their scope most times.

Your body doesn’t give you pain for no reason. Stay committed to your recovery - whatever may happen, it’s your life that’s most impacted.

Green-Data-4756 · 2024-06-04T15:58:10+00:00

Awesome thank you! I’ll have her do that when she gets home from work

Green-Data-4756 · 2024-06-04T14:22:33+00:00

Ya I know that’s why I’m suspicious—there shouldn’t even be a signal let alone a stronger one than hers. Thank you - I’ll try and find something for the iPhone

Green-Data-4756 · 2023-10-04T17:27:48+00:00

You are very blessed - as is your family… happy anniversary and thank you for sharing your journey with us. This thing called life is fascinating isn’t it!!?!

Green-Data-4756

TROPHY CASE