Cat,

I know it's hard. They can't go further than the insurance companies will let them and once they can't report improvement they say we hit a plateau.

As a survivor I can tell you that recovery is more than teaching us to use our limbs or to walk etc. We didn't forget, stroke damaged the pathways so that regardless of what we're "taught" that limb just does not work. Walking is a big thing but if he cant lift his leg to walk, he can't lift his leg into a vehicle. These things are so frustrating and heartbreaking but the good news is that the OT and PT can give you exercises to do at home even after they've gone. As a survivor I will tell you that I made far more progress after they were discontinued than I did with them.

This is not he end, its just the beginning and later insurance will most likely pick up therapy again.

Jamie

Actually I found that out patient was a lot more helpful than in home. The in home therapists encouraged me to start him there as soon as I could, since out patient has more equipment to practice with....stair climbers, recumbent bikes, treadmills etc. My husband can't lift his leg to get it in the car, or up the staircase without my help, a year and a half later. That's because although he can walk with a walker, his leg really isn't there, he's just swinging his hip basically. It's a mirage, if you will. It's part insurance policy to move him on, but it's also them being realistic. Don't be afraid to try something new, it will be OK. But whether he will ever be "independant" is something you find out in the future, no one can tell you if and when that will happen. As Jamie says, it's really up to him, not the amount of therapy he receives.

Thanks for the insight. Allthough he does mostly drag his leg he has walked using his foot. He just forgets how to and if I tell him to "roll" his foot then he will. He also lifts his leg pretty high and has gotten in the truck by himself some but ther are days when he jsut doesn't have the strenght. I sat down last night and wrote down things that we need to start working on more ouselves so that I can remember to make him do these things and I think that will help. I just hope I can motivate him like they do.

I know it is frustrating, feeling like you have been abandoned and left to fend for yourself. Some outpatient therapy would definitely be the next best step but I imagine you will probably be waiting for the Medicaid before doing this. In the meantime, you can just continue to work on the things the therapists were doing with him if you feel safe doing so. Also if he does exercises to strengthen the muscles in that leg and arm it will definitely help but it will take a while. The PT should give you exercises for him to do on his own if they haven't already but if not definitely do ask them for some.

Cat, OT works with the arm, not the leg. They also work with teaching how to dress, groom oneself. So, you have to ask them does the PT work on the arm, because if you say OT, they will think you mean something else.

Thanks guys, we do have a lot of exercise we can do ourselves and we will continue to do them but they are sort of deadend exercises. He needs some that can take him to the next level,since we cant start outpatient therapy right away due to insurance issues. So if you guys have any ideas I am all ears!

Cat :

It feels hugely scary when all therapy stops, but will tell you from my personal experience actual living & post stroke journey will starts when therapy stops. & never ever spoonfeed your survivor, allow him to do more for himself, it has great advantages, more he is able to fend for himself its less work for you & you can concentrate your energy on some worthwhile projects which he can't help in. As a caregiver it becomes tendency of some of the caregivers, oh why allow him or her struggle when I can finish it quicker, but I feel that does more disservice than service, more survivor is able to do for himself it is one less work for the overloaded caregiver & also very importantly it builds the self esteem of the survivor, don't help unless you are specifically asked for help is my instrunctions to my hubby & that motto has made me today self sufficient in running our whole household single handedly which includes cooking, cleaning. yes it takes me longer time, but important thing is job gets done.

So please realise stopping of the therapy is not an end its new begining to great post stroke life together for years to come, and more he does for himself easier it will get.

Asha

Cat: the one thing I would advise, now that you have set your priorities - and personally, honey, I feel they are realistic. As you are learning it is rote, rote, rote. Don't go to independence yet. That is a long way down the road.

You have a solution for the foot drag: you remind him to roll. And that becomes your priority until his brain gets it independently. You will remind, remind, remind; until both of you are ready to "hurt" each other, but it will finally get there. Don't argue or get discouraged. Make it a point to just say it.

Bruce has been putting on his own Tshirt for over a year. I still - even from another room - go into my mantra. Just habit - annoying yes, but he'll forgive me - LOL.

Bruce is just lifting his affected foot. With the AFO, shoe; getting that leg in and out of the vehicle is still a long way off. Ruthpill and I were just discussing that recently. We are both 3+ years in. Both men are opposite affected.

Bend over without falling. That is a tough one. The bottom must be firmly placed. That is great in the WC, not so at the side of the bed. And yet, with Bruce, that is where I feel he is best.

I agree with Sting. Outpatient was the best thing that happened to us, once home therapies stopped. Now, don't get me wrong, we had the best here at home. PT had Bruce out of the lift, transferring safely with me within a week. That was huge. No longer had to wait for help, Bruce is an early riser and we could be up and about safely. But he makes his greatest gains at Outpatient. Our Rehab is incredible - all services and the pool in one building. They do their very best to schedule everything, including Botox and MD appointments when we are there. WC and splint clinics. And if we are there, for any reason, therapy gym and pool are offered regardless of the time. Yes, I have to be the therapist, but the equipment and pool are available.

For now, work on your basics. All disciplines every day and while awaiting Medicare to kick in, enjoy figuring out what works well in the house. Get him involved in the finances, housework, cooking, shopping. Get some portion of your real life back.

I think we tend to focus, early on, with the physical recovery. You know, finally, that this is going to take a very long time and will come in baby steps. It is time allowed now to be able to get your whole lives, relationship back. Figure out what it will take to do those things you might want to do again and can manage now that he is mobile; whether that is travel, back to work, reading, shopping, out to dinner. Take the time to figure out how to manage those other things that you as a couple want to enjoy: going to a movie.

This is a transition time. It can also be a wonderful time. You may find that he responds well to being off the "treadmill" for a bit. Thinking of you, Debbie

Thanks Debbie. Its funny how I can post something on here and you guys just reconfirm what I am thinking, LOL! I told him about the schedule of things that I would like for he and I to work on everyday and he is all for it. Now to get him started! Last night he wanted me to drive him to the store to get some smokes, I know he needs to quit but that aint happening just yet, so I did. He said I want to go in on my own and see if I can do it. I agreed but made him let me walk with him just in case. He got in the truck and out by himself. Opened the door of the store and did his business went back to the truck got in and back home up the steps and into the house all by himself! He was totally worn out but pleased with himself! I think we can do this and beat this thing! Just got to keep moving foward!

I think you are so close to a really full recovery.