For those who have been recovering for a while, I am aware it is a new normal since I am already basically living it. I have botox coming up on the 11th and I know I have alot of pt and ot left. I’m already walking with the Nordic poles/ loft strand crutch. What I wanted to know (and I understand it’s different for everyone) around when do you start doing some of the things you used to do? Now I’m not asking to drive, I just want to garden again or cook a basic meal in the slow cooker like before. Even walk the super market without scaring anyone (out of fear I still carry my wheelchair just incase but Im starting to rely less on it because I want to keep moving forward) I want to get down from the car to go pick up my son from daycare that sort of things. I’m not begging to run a marathon just normalish things. So? Any insight? I am 2 months short of being 1 year free of my avm after embolization and craniotomy.
Teiry, I can’t answer your question. I can certainly tell you that I admire your focus and drive to keep moving forward. Our circumstances are different for sure. I had a bleed out of “left field”, no warning, no indication and my life change, quickly. Two years ago I had a 10 year old son and 12 year old daughter. We do have something in common, and that is the desire and drive to get better, it is slow. I’ve become a big believer in forward is forward. The frustration is the speed but we have to strive to head in the right direction. Keep doing everything to head in the right direction, and give your son a big hug! Take Care, John.
Thank you John, you’re right forward is forward
This topic made me think of the Weight Watcher’s basic view of weight loss: “Any week you don’t gain weight should still be considered a loss.”
Basically, as long as you’re not back sliding, you’re ahead of the game!
You do have a point t’s just one of those days /:
It’s good to have the determination or drive to get better and do things, though.
I’m sure there are difficult times when progress is slow or nil or you regress a bit but stay positive, aim for improvement and that’s how you’ll get better.
Agree. Have to stay forward focused. As I recall from early on, my PT Stephanie and I were cutting up while she was walking me to the back gym and she said Mike, “You want the whole Enchilada and I’m helping you get shreds of lettuce, but we’ll get there.” It’s still slow, but I’m still moving forward. Never quit
This one clicks with me. I’m 3 & 1/2 years out. For me, somewhere around 2 & 1/2 years I had acclimated. As in I stopped trying to get back to my old life and started living my new one. Once I was able to accept this as a baseline, I was able to concentrate on enriching it with things that I could do. I feel it is more rewarding to discover new passions and the trial and error that goes along with it. For example, I don’t play video games anymore. I spent a lot of time trying to get that hobby back only to be constantly frustrated that it never was as pleasing as it used to be. Kayaking has become a new pastime. ADA gets a free pass to parks and sitting down mitigates my balance issues. I’m not very good and I tire quickly but I have nothing to compare it to. It’s a new hobby that suits the new me. I travel a lot more. Plane tickets are cheaper in the middle of the week and I have more free time.
Two other things. Half my face is paralyzed and I’m the cashier at the grocery store. I’m the guy you show your ID to at the self check out. People aren’t scared. Once they understand what happened, they relate to that it could’ve happened to them. And you become a much better parent once you realize that all your kids really want is your time. And now you have more to give them. Some of my best quality time is working with my three doing little chores around the house. They loved learning how to make ice cream.
Tierry , (and JD),
Hi. I, too, had two children, 10 and 13, when my stroke happened. After my craniotomy (June 2016), I thought I was done with it. I had survived, right side was functioning again, and it was going to be all uphill from there. Silly me …
But, after the past two years, I have discovered my new normal: that each day I am breathing, just like I did before. And each day, I experience another unexpected deficit, or stumbling block, or something that was not working well yesterday but today is just fine. In other words, it took me time to realize that my New Normal is prolonged recovery (for now), hopefully today better than yesterday. But, I am still here, still living, still enjoying my two boys (more so when the older is not all teenage angst-y), and many of my prior pleasures. And, I never run out of things to “work towards”.
Next month I will go in for my 2nd annual follow-up with the neurosurgical team, and have an MRI this time (CT Scan last year). I am noticing things that cause me concerns, so I will raise them with the Doctors.
Last thought, I am Canadian. Proudly so, and this Sunday is Canada Day, a national holiday where we all celebrate diversity and inclusion. And Universal Medical Care!
Thank you everyone for your responses ️ I think it’s not a matter of acceptance and more of I’m stubborn and keep pushing to strive for more like there has to be a better outcome or new research etc~ which I know it’s not entirely a bad thing and it’s probably going to be this way for a while but soon I hope to be comfortable in my own skin even if I keep striving for more but just be ok with I have accomplished so far rather than craving more constantly
So I understand. Yes keep pushing forward. But, sometimes you just want an answer. It’s been 1 year and 3 months since my craniotomy. Forget normal who came up with that word any way. I’ve been cooking the whole time. It took about 3 months to settle with the fact that this is me. The old me no longer exists. With that said I started getting as much adaptive equipment as I could. One handed can opener, cutting board, etc. I put my wheelchair at the end of the kitchen until I nolonger needed it. I have 6 more hours of driver training. Once I felt comfortable enough to go out on my own. Woo. Look out world sky is the limit. Unless a plane goes there. Lol. Moral of the story you can do what you put your mind to. Remember there’s an adaptation for that. Forget what people think. My fiance says they only stare because your an inspiration to them. They’re saying how does she do it. I could never be as strong as her. So when people stare, I smile a little bigger with my crooked smile. Your life is changed forever. You’ll never be who you were. Embrace the Suck.
Thank you ️ ️ Oh! I didn’t know about the cutting board! I’m a cooking aficionado and feel so sad I haven’t been in the kitchen as much ️ My fiancé had to learn to cook and loves it now lol
My fiance refuses to learn. But I had trouble with most things roun. The cutting board has two prongs to hold things in place. then a raised corner to keep things from from sliding off. I also have a one handed can opener, one handed jar opener. I also have tongs that are spatulas to help with turning food. Also, ask your OT let him or her know you have a passion for cooking and he or she should have a catalog of this stuff. You can get them to order it and maybe it’ll be covered by insurance otherwise it’s on Amazon. I am not giving up on movement in my hand but in the meantime time no longer stands still for me. Love you to life. I have faith in you. Oh read “Stir.” It’s an awesome short book about a stroke survivor that loves to cook. She’ll inspire you and the book has some good recipes.
Your fiance can help you cook. Something ya’ll can do together that’s free. Date night with cooking and a bottle of red wine. No prying eyes. It’ll help with sleep too.
Ohh I know what that’s like. I’m a bit stubborn too (My wife would take the word ‘Bit’ out of that statement), and I too hated that word ‘acceptance’ for along time. I considered that word as defeat and my stubbornness fought against acceptance like a devil. But eventually I had to move on, things are not the same and I know they probably never will be, I do not believe that striving for more is a bad thing but I also know I must listen to my body and not push past my own limits.
Teiry, in my humble opinion, you are heading in the right direction and to be honest that is about as much as we can ever hope for. Sure, I’m travelling at nothing like the rate at which I once was BUT I no longer feel as if I’m going backwards. This has only taken time. It has been 5yrs since my last neurosurgery and I know I do still push those limits, but I do so in knowing if I push too hard my body will (and does) push back reminding me when enough is enough. I may not be able to do as before but I can adapt things to meet the needs I require.
Tchankin is 100% correct in that there are many aids available to assist. I formally worked with people with disabilities, teaching independent living skills. In basic terms teaching everything that most people take for granted ie cooking, cleaning, household management etc and have needed to access such tools for my clients. My wife cooks and being a lazy male myself, I wouldn’t want to intrude lol (well, that’s my excuse), but there certainly are aids available. A local hospital here has retired tradesmen who volunteer altering and adapting utensils and appliances to meet individual patient needs. There maybe such services available in your area and again your OT should know of such services.
Merl from the Moderator Support Team.
Honestly I feel like you gave me a portion of my life back! Thank you! ️ I will ask my ot for sure! If not amazon! I’m already addicted to it anyways the mail carries think I have a shopping addiction lol!!!
Thank you so much! I definitely will bring it up to my ot I think she’s just waiting to see how botox works on my arm and hand because she’s not giving up on it, not that I am but all my therapists know I am 20 steps ahead of them and do it my way anyways
at 2.5 years I started to accept this was about as good as I will get and slowly started to accept this was the new me.
I will never quit trying to improve but at that point I decided to make the most out of the hand I was dealt.
Prayers to you, Teiry! Do your best to alway be aware of all the large AND small POSITIVES that happen to you now, as well in your whole future!