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Even though I had my stroke in Jan of 09, I count my recovery from March of 09. The two months I spent in ICU and the hospital were not recovering, per se, it was survival.

In the 39 months I've been doing rehab, I've seen progress, but it's very hard to self-motivate. I am my own worst enemy as far as patting myself on the back for seeing small gains. I was wondering how you guys motivate yourselves and keep a positive attitude. I have come tot the conclusion that Drs and therapists are mostly nay-sayers and don't really help patients see that they CAN make progress. The very worst thing they can say is "this is as good as its going to get". How can a person feel optimistic hearing that?

How do you motivate yourselves to do those repetitions, get on that bicycle, that treadmill, hoist those weights, use that Theraband? I can't stand the exercises.......they're no fun, they're boring as heck, they numb the mind. I have to force myself, but if I don't do them, I feel guilty, and feel like I'm holding my recovery back.

Any help out there? Thanks

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Hi Numnah,

 

It is true a lot of health care professionals are nay sayers, but from the beginning I realized how ignorant they were. I am almost 4 years post stroke and I STILL see gains. The last couple weeks, my foot/leg don't kick out as much, my steps are much more flat. I started typing with 2 hands in some cases this year. Last year I regained writing and running to an extent, that was over 2 years post stroke. My 1st year I regained riding a bicycle and motorcycle. A lot of hard work, but well woth it in the end.

 

The best thing you can do for yourself is make smat choices. Do what needs doing to improve your quality of life.

 

--

Gavin

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While we're at it, does anyone have any advice on how to motivate your spouse? Turns out I'm not all that good at it. And I'm not sure how much it should be up to me anyway. I'm somewhere between a nag and letting it go completely. Wish he was a little more motivated, but it's such a long uphill haul. I see the big picture, but it's a little harder for him.

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So funny to sign on and read this post. I was about to blog about the same thing Numnah had to say. I just got back from a neuro appt with my mom and I am so ticked off. What is wrong with doctors today? Are they so afraid of saying something they could possibly be sued for?!!! My mom is 6 months post stroke and if the doc said to her one more time, "Unfortunately, there is nothing we can do for you", I was going to jump out of my seat and sock her! How about encouraging your patient and supporting her! I want to walk into a doctor's office and this is what I want to hear. Sorry to hear about your stroke. I can't tell you how much function you will get back as every person is different. What I can tell you is that the brain is amazing and we are learning new things about it everyday that we never believed possible. We now believe in neuroplasticity-the brain can rewire! You need to work really hard at therapy so you can get back as much as possible. Maybe it will only be 10% more but maybe it could be 40, 50 or 60% more. My goal is to help you regain as much function as I can. Good luck at therapy. I will see you back in a month and look forward to seeing how much progress you have made! I am being unrealistic?

Numnah, you have to keep trying. Maybe you could make a chart for yourself and check off the exercises as you complete them. What about a special reward for yourself at the end of the week when you see how well you have done-maybe take out food on Friday or something you really like. You know, when I was at my mom's the other morning she had the tv on in the background and one of those morning exercise shows was on where they do the exercises and count the repetitions out with you. I thought, Wouldn't it be awesome if someone made an exercise stroke DVD so that stroke patients could exercise along with the tape. It is always more motivating when you feel like someone is sweating with you!!!!Stay positive Numnah and keep pushing yourself!!

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Goodmorning! When I had my bleed & stroke like 14 years ago I was not suppose to survive so

I did everything possible to increase my strength. Was a slow process retrainng to walk, talk, swallow

ect. yet w/out my therapists & faith I would not have regained all that I have. Even at that it's been a

struggle to keep my focus positive, a daily reminder I am alive to watch my kids grow up. I have a

wonderful husband. I know it must be frustrating for him to have patience w/ me yet we go through

the rough spots & get up and walk forward. Still do my stretches daily before I put on my brace,

walk w/ cane & can drive w/ left foot gas pedal which I am thankful to do. A big difference from

being paralized on entire right side so I am thankful for in-pataient & out-patient rehab I had first

few years after bleed & major stroke. You can make progress exercising, streching & keeping focus

positive. This site has wonderful friends who understand what your goinng through~so hang in there

and take one day at a time & as Jerrolyn said keep pushing yourself! Do you have a pool nearby?

This has been a great tool for me to make headway w/ my hanging limbs & increase strentgh.

Take care my friend!

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Numnah,

 

Like you, I hate the monotony and boredom of repetitious exercise routines but I really do understand the need for exercise. Though I'm determined I know for a certainty there is no way I would use a treadmill or exercise bike regularly so I bought a three wheel bike. I live in a pretty town and I take walks, ride my bike, and take my camera along and take pictures of the area. You can incorporate exercise into daily activities to make it easier. If you're standing at the kitchen counter do a few leg lifts while you wait.

 

I live near a cafe/pub and all the staff enjoy when I come in, and it does me good to be near positive people so I take my walk--about a quarter of a mile--and treat myself at the cafe. Sometimes dinner or lunch and sometimes just a coffee.

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Thank you all for your input. Gavin, I have a motorcycle also. While I am riding my horse again, I still can't work the throttle on my bike. How did you get that back in the first year?

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So funny to sign on and read this post. I was about to blog about the same thing Numnah had to say. I just got back from a neuro appt with my mom and I am so ticked off. What is wrong with doctors today? Are they so afraid of saying something they could possibly be sued for?!!! My mom is 6 months post stroke and if the doc said to her one more time, "Unfortunately, there is nothing we can do for you", I was going to jump out of my seat and sock her! How about encouraging your patient and supporting her! I want to walk into a doctor's office and this is what I want to hear. Sorry to hear about your stroke. I can't tell you how much function you will get back as every person is different. What I can tell you is that the brain is amazing and we are learning new things about it everyday that we never believed possible. We now believe in neuroplasticity-the brain can rewire! You need to work really hard at therapy so you can get back as much as possible. Maybe it will only be 10% more but maybe it could be 40, 50 or 60% more. My goal is to help you regain as much function as I can. Good luck at therapy. I will see you back in a month and look forward to seeing how much progress you have made! I am being unrealistic?

 

 

Jerrolyn,

 

I think at some point we have all felt the same way and eventually come to the reluctant conclusion that, yes, it's unrealistic. Doctors are driven by what they can prove and right now they have anecdotes and claims but nothing they proved. We think of doctors as healers and they are but each has their own specialty...neurologists, cardiologists, and even general practitioner don't often deal in the inspirational. You would be better off finding a friendly face at Starbucks if encouragement and inspiration is what you need.

 

I think all of us had to come to the place when the doctors said "it's as good as it gets" that we just stopped listening and muttered, "bet me!"

Don't ever let someone else's pessimism dampen your optimism.

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I was reading your post, thinking I had nothing to offer, because I feel the same. So, I read thru all of the posts, 'til the very end...Let's see if I got this right; you're 3 yrs. post, can ride a horse, and almost ride your motorcycle, and you're 69. My question is: What are you doing? Becky

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Becky~. I'm not exactly sure what you mean by "what are YOU doing"? Do you mean I'm doing ok? Do you mean I should be doing something better? Do you mean I should be grateful? Yes I am grateful to still be alive, but I'm trying to get back all those things that gave me pleasure~ bike riding, drawing, sculpting, horseback riding, archery, etc. those are the things that made our life fun, and that's what I'm working toward. But then, I'm a kvetcher from the word go.

Thanks to all for their input.

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What I meant was I think you're doing great! For instance, pre-stroke, I had a few horses. To me, they were just pets. But, I was around riders,and even rode some. I wasn't real proficient, but rode enough to know that it could be pretty physically demanding. So, what I was asking (and apparently asked badly) was what are you doing physically to have come so far in such a short period of time? Please, I meant no offense. It was a poor, incomplete choice of wording on my part. I'm sorry.

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Numnah: I read through everything, because like Sting, as a caregiver, I just need some guidance as to where to go from here with Bruce. Any insight into the stroke-affect mind is enlightening.

 

I have tried a whole lot of things, nothing grabs him. Couple of months back I thought maybe it was that he depended on me too much to plan and orchestrate, so we went into a "you have to do one thing for your recovery, yourself, every day". If he needed help, all he had to do was ask. But he had to initiate. Well that ended up with all day in front of the TV. So we are back to Debbie initiating.

 

I was advised by many that initiating recovery was something Stroke took away. So I had to work on the "rewiring" like everything else. Bruce is great with routine, so I am incorporating some new things into his routine. This may work for you. You are much higher functioning than Bruce, but as he slowly reconnects to life around him, those things he used to love - being outside, nature, his flower boxes, I find him much more agreeable.

 

I will tell you that it was the rote, rote, rote that got you this far and you know that. I also know how tedious and boring it is. And disheartening at times. But you are certainly helping all of us caregivers here getting some inside knowledge and for that I thank you. If you know you are doing others such a service, you will be more apt to come, post and let us know what is working for you. Again, thank you, Debbie, caregiver to Bruce, stroke March 2009

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I simply did not realize that I had anything to offer others. I have been so wrapped up in me, me, me and feeling sorry for myself that I did not think I could possibly help anyone. Becky, believe me, I took no offense at anything you said.....except to add that I have a difficult time reading your script on your posts. It looks lovely, but my eyes aren't as good as before. Debbie, I guess that Bruce needs your help in motivating and planning. As you said, he does much better with a structure. Because I think of this whole "thing" as a really bad movie that I'm in and I can't really leave until the end, and I don't really know how it comes out, so I have to do my best to make it come out the way I want it to. Or, I think it's like a prison sentence, where you don't really have a release date, and that makes it doubly hard to stay focused and motivated.

I have read several post-stroke motivational books, and, basically, for me, they offer nothing to help me say, "Oh, yeah! That's what was missing!". I think we are all just trying to find our way here, to get our lives back, and be the best we can be. The one thing that seems to be a recurring mantra here is, Never give up, don't believe everything the Doctors say, and believe that you WILL improve. I am grateful for any and all feedback here. Communication is very important.

Thank you all again for listening to me babble on.

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Thank you all for your input. Gavin, I have a motorcycle also. While I am riding my horse again, I still can't work the throttle on my bike. How did you get that back in the first year?

 

Honest answer, I kept trying and turned most everything I did/d a rehabilition game (Something I still do every day). Holding my coffee every day, is a therapy game I play every morning. I see how far I can get or how slow I have to walk before the rigidness on my right side causes me to spill it some. Today I made it to the ping pong room, but I cheated, I sipped it so it wouldn't be as full as I walked. ;P Another game I play is forcing my steps to be completely flat footed and fluid like my left side, without my hand and arm getting rigid, that's a tough one. I do a bunch of mental relaxation as I walk trying to relax my hand and arm, damn hard to do, haven't mastered it in almost 4 years of trying, but I still try it every day.

 

I also can't even beging to count how mant times I kicked the bike just trying to swing my leg over it, before I was finally able to manage it. I started with a bicycle, that was quite the adventure. Just mock release the throttle and mock roll on with anything you hold. Brush, toothbrush, empty cup, anything. Practice extending your fingers, I found stretching like you just woke up helps extend my fingers. Use your imagination and find what works for you. Working the break and throttle is a touch one. Sit on the bike, grasp the throttle and try to use the middle, ring finger to pull in the brake. That's what I did, its still the toughest challenge. Glad there is a rear break, even if its just 20% the stopping power. ;P I am on an 04 Ducati 998, Harley's seemed easier when I started.

 

--

Gavin

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Numnah,

 

Welcome aboard, hope you enjoy the survivors here because we are all in the same boat trying to recover some of what we lost! Probably not all but some will come back with therapies! We just have to remember the brain was attacked, cells died immediately, others died as time went by, but we are still alive which is what counts the most in my mind! You are blessed to still have your license for motorcycle cause when I went to renew my drivers license they took the M off and said when my arm and my walking is better I can always take the motorcycle road test again to get it back on my license!

 

I don't have the cycle anymore but I would love to have a three wheeler modified with a steering wheel, brake and gas pedal! One guy got one that is truly decked out and has a big motor in it, air horn and all kinds of lights including a drop top in case of rain! If I ever get my back pay for PTSD I can get one! Having one fully set up can cost a pretty penny here in central Texas!

 

I keep motivated by being alive, I nearly died, in ICU 4 days and nights then 5 months in the hospital and rehab before coming home unable to walk or climb stairs but with more therapy I soon learned! Had to sleep in a hospital bed downstairs but my wife was there all the way with me! I keep positive by knowing I can drive go any place and I use a scooter and a cane to get where I want to go! I go fishing on the pier on my scooter on the military base here! When we drive to New Orleans (my wife's hometown) I go fishing there too, I go to casinos, parties and everywhere I want to go! I really don't feel I'm handicapped but my whole left side is gone! I make up by telling myself to look at what my brain can't see any more!

 

I work with the wounded warriors who lost arms, legs and hands now using prosthetic limbs and you would think they have all their parts! They say as long as I'm alive that's what counts! Many of them saw their fellow buddies get killed so they are proud to have fought for their country and made it back alive! I too made it back from Vietnam after being wounded and seeing my buddies killed! I think and feel that until you put life and living before your condition of being handicap you'll say "hey I can make it with what I got left!"

 

That's all I can think of right now hope it gives you a different prospective to think about! I don't use and drugs for depression and I don't get upset I accept the way I am as if I was born this way! Should I gain more use of my affected side OK, if not so be it!

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Great posts! I came over to forums while waiting for folks to get to the chat roomds, and I was pleasntly surprised to read these . I am fortunate to have great support from my family,who seem to understand the process better than I.Like, my son says, "Dad, you didn't get sick, and are getting better---It's like you got hit by a truck, and you were injured severely." Recovering from injury, not getting well after a sickness---that helps me keep it in perspective. There is no end to better.....

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Guest BarbV

Numnah,

Wow...did you or did you not start a post...I had to go back and reread your original once or twice to get back to my first response...amd that was to why all the repetive exercise to feel we are going nowhere...I've been told "as good as it gets" and can't do anything more" so many times also...I am 3 years out now and I can tell you that if I lay back on my exercises I actually bedin to dray up and get stiff on my effected side, I don't think I could survive in a chair/bed or couch...I don't believe in suicide; so guess I better keep pushing. My parents were rather controlling in nature and it was inbred in me that if I did not improve myself in some small way, each day...I would remain stagnant as mucky, old nasty water and never grow.

My stroke was in my cerebellum and have problems with balance, senses, some feeling and on and on and on, cognitive issue, constant head discomfort...can't judge distance well, respond slow...can't drive and you guys are riding horses and motorcycles....how in the world did you get there...bravo. I used to show Tenneessee Walking Horses prior life and think I would get back on a horse now, not going to happen. It has taken me 3 years to get the nerve to try and swim to finally get in the water last week and I could swim after a week of loosening up...and ifor those who have not tried water exercise...don't waste anymore time...you can jump around and do all the fun things you did in prior life in the water.

I have no recolection(?) of time...but I can barely remember how difficult all this has been, it's day by day for me...point is...a year and a half they told me I should not beat myself up and accept where I am, made me mad as the dickens...I refuse to lay back and exist.

I feel pushing on is the only way...I can't accept the alternative!

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Numnah,

Actually a few things keeps me positive. I always think about the shape I was in when the stroke happened and how far I’ve come. Then I read and listen to all the remarkable stories of other stroke survivors. And lastly, the few friends that have stuck around constantly remind me of how well I’m doing. So I try to keep these recurring thoughts in my mind all the time especially when I’m having a bummed out moment and that helps put me back on track.

 

And yes, if doctors can’t clinically measure something to prove its validity then they will discourage you and whatever it is you may want to try. But I have noticed that if I go in their office with a positive and upbeat attitude, prepared to ask a lot of intelligent questions, and provide them with examples then they will in return give me a better outlook on my condition, offer more suggestions, and take a more active role in helping me get better.

 

So hopefully, if you try some of these tips maybe they will work for you.

Pam

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numnah :

 

I have integrated my exercise in my daily routine, and now that it is part of my routine it has become habit for example I do all my treadmill,stationary bike & shoulder exercise on M,T Wednesday is break day so I catch up on my laundry & other household job, then thursday & friday & then break again on sat & sun. This worked for me cause my muscles used to get very tired after 2 days of exercise. once you have routine you look forward to it.

 

Asha

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Thanks to you all for posting and helping me out.

After 40+ months, I am finally riding on my own again. Not tacking up by myself, mind you, but going out and FINALLY feeling confident in my ability to control my horse and use my leg aids to prompt him. I can also, with the added help of a stud chain, lead him to and from his turnout. Before this happened to me, I helped out with students with cerebral palsy who were horseback riding, and the change in them was amazing!

To all you readers and caregivers, I heartily recommend taking a Pilates class. Joseph Pilates invented this exercise to specifically help in rehabilitation. I've been doing this for about a year and a half, and it really has improved my strength, coordination and balanced my body. You know how you have a tendency to favor your weak side and use your strong to compensate? Well, this exercise helps to make your weak side work and helps you mentally how to visually do the exercise. I don't have a pool handy, so I have to make do with the exercises I do at home. I'm up to 30 minutes on my stationary bike, and, for me, that is a huge, boring, accomplishment. Not exactly like riding on a real bike. The bottom line is, I can improve, I don't give a fig what the doctors or therapists say.

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I base my motivation to wotk at recovery on " wanting my hand/arm to be useful again"

To me this is enough motivation to do whatever it takes to make it so.

 

The loss of these things was devastating enough, having to deal with this for the rest of my life is not opn my list of things I am interested in.

 

KEEP WORKING AT IT, ITS THE ONLY ANSWER TO GETTING IT BACK.

 

Snowy

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Guest hostwill

Numah,

Welcome! No one likes to hear the word"plateau" because as soon as insurance companies hear that, they quit paying. I agree therapists and DRs really don't know what to say or if we will get better or not, truth is, We survived! As far as PTs go, their used to dealing with Sports injuries and very few understand Stroke. I.e. my therapist was telling me to get up from a fall. I said show me how without using your left arm or leg.Surprise! they couldn't do it either. What motivates me is, I know things could be a lot worse, I'm a Vietnam vet and I have seen a lot worse. I look forward to seeing you in our chat rooms.

-Will

'

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Numnah,

 

Like you, I hate the monotony and boredom of repetitious exercise routines but I really do understand the need for exercise. Though I'm determined I know for a certainty there is no way I would use a treadmill or exercise bike regularly so I bought a three wheel bike. I live in a pretty town and I take walks, ride my bike, and take my camera along and take pictures of the area. You can incorporate exercise into daily activities to make it easier. If you're standing at the kitchen counter do a few leg lifts while you wait.

 

I live near a cafe/pub and all the staff enjoy when I come in, and it does me good to be near positive people so I take my walk--about a quarter of a mile--and treat myself at the cafe. Sometimes dinner or lunch and sometimes just a coffee.

 

I am still trying to learn how to use this site so please forgive me if this somehow doesn't work...lol. I have a tremendously difficult time staying motivated. I had therapists tell me I had one year to improve and others who said five years...so I am 1.5 years out now and I seem to have leveled out. But to be fair, I have been lazy lately. My dream is to walk without a hemi-walker or cane. My left arm is completely useless. When I get depressed about that, I try to think about the guys who lost limbs in Iraq and Afghanistan...Then I realize I am not so bad off.

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Guest Sracarmel

I must have different Occupational and Physical Therapists. I call them my Angles, and they are always supportive, and look forward to seeing me. I guess attitude and motivation is an individual thing. But, 2 years post my 2nd stroke, I still start my sessions with a joke, ask them to push me more, and TG I have them. I keep a log as to what I want to accomplish, with no time limit. We have video'ed my sessions on my I Pad, so I am reminded correctly at home. I don't try and pay much attention to the Doctors, as they just treat you like a number, and make sure they have your insurance information. Try and think about what you have, and can do, and not what you don't have, and can't do. Love, and hang in there!

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It's a real shame that there are Physical Therapists, doctors, or any health care professionals that are that negative. I cannot imagine what it would have been like if I did not have the wonderful support that I had here. I had my stroke ten years ago, and they always encouraged me. I am an EXTREMELY stubborn person, when someone tells me that I cannot do something, I do it come hell or high water. With the exception of my singing, I would work very hard to get better. I also kept a running journal of my progress so that I could see how far that I came. I think we have to self motivate ourselves so that we can get better, and even when it is something small, we have to remember that we can build on those small steps. Let your haters be your motivators!!!

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