AVM/stroke rehab discharge and further progress

Hello all,
I wanted to ask a rehab question.
My 3 - 4 day/week OT & PT schedule will be diminishing soon to 2 days/week. Additionally I have been told that soon I will have all of the knowledge to succeed with rehabilitation on my own with at home exercises.
I have been outfitted with the Saebo stretch, reach, and flex devices (strengthening and nightly stretching wear).

I suffered a stroke before and after a craniotomy to remove a large left parietal AVM. While I still suffer from hemiparesis on my right side, I have gotten tremendously better. I went from no speech and a wheelchair to a walker, then cane, to a custom AFO while walking unassisted.

I will certainly miss all of the support and friendship from in and outpatient staff here in Richmond, VA. While I have come very far in these 4 months, I feel somewhat anxious about venturing through the last leg of my AVM journey alone.

I guess a steady schedule will work for all of my “homework” exercise. There is a certain part of letting go of the security of rehab that is scary. Because of the challenge ahead, I tend to wonder about things like how I will learn to run again, and be able to continue to improve physically and mentally.

Has anyone else gone through the experience of being discharged from your rehab while you know there is still work to be done? I feel like things are coming together at the appropriate time, it’s just hard coming to terms with knowing that some neurological deficits may not improve as quickly, or at all while I’m continuing to work on my therapy alone. I know the return to my job will also be an added challenge.

Any help or advice would be greatly appreciated on this topic. As always, thanks for the awesome support from this community.


Hi, My stroke and craniotomy happened over ten years ago. I remember the rigors of occupational and physio therapies. My main deficit was/is left sided weakness. I had issues with diplopia and nystagmus but with the work I did with, and without the therapists, helped a lot. I was very fortunate to have had therapists who I continued to be inspired by even though I was working on my own. It was their humor and commitment I remembered that sustained me through the plateaus of improvement. It was the patience they showed working with me that reminded me not to rush when doing exercises, not to be too hard on myself when I was feeling frustrated. They always reminded me to push but at the same time, be safe. When I got tired, it was okay to take a break. Their lessons are instilled in me and I will always be grateful.
I wish you many successes in the challenges you face in your recovery.


My husband's surgery was in August 2014. He was in physical and occupational therapy working on his right side. The therapy had his spirits up and he was so motivated. That lasted 2 1/2 months before they decided he no longer needed their assistance and that the remainder of his rehabilitation should resume at home. At home, in my opinion, he has become less motivated and a bit lazy. Never was that in his character...always a hard working man. I tried everything in my power to motivate him and to get him to the gym consistently, he always found an excuse not to. His main one was the stress of getting his disability straight was too draining and depressing. Well he had his big check-up (MRI) scan on his brain to make sure it was healing well and to check on his physical progress. The MRI came back GREAT, BUT physically he have some work to be done. They have put him back in physical therapy because of his foot. His foot is causing him to limp due to nerve damage. It doesn't bend down nor can he wiggle his toes. Also his shoulder is still weak as well. Now again he is motivated and on board with therapy! The MRI gave him some hope too. I said all this to say, therapy is a great help. Now that you have been released from their care try not to get too comfortable at home that you become less motivated. Set a schedule and goals and work at them everyday. Also, PRAY! Good luck and God bless!


I have found that after being discharge from ot and pt, to keep improving my physical weaknesses after my two strokes was two join the ymca in my area, to use the pool for water therapy and to hire a person to help with OT in the afternoon.

I had the same situation as well only after my release from rehab my left arm was still not working, however after one week of being home and exercise my arm came back to me.I did continue outpatient treatment for 8weeks before my surgery .


After my craniotomy I couldn't move my left arm or leg at all. Movement began to come back very slowly in the hospital and I was eventually moved to a physical rehab place for a couple weeks and then went home, coming back 3 times a week for PT. After a couple months of that, they discharged me and I was on my own. It did feel scary. Suddenly I was out in a world where impatient people honked at me while I crossed a street in a crosswalk or whipped by me in the grocery store when I was trying to put something heavy in my cart, or who sighed with impatience when I was trying to open a heavy door. (I was relatively young, and I think people assumed because I looked young and didn't have a disability that was immediately noticeable, I had to be in good physical shape.) However, there were also people who stopped and offered to help me.

Remember, you won't be totally alone in this last leg of your recovery, you'll just be missing the regular work out routine you had with your physical therapists. It probably feels a little scary to know you won't have them there working with you the way they had been, but if they think you're ready to take this step and continue your work on your own, then you're probably ready to tackle this.

Perhaps you could get a calendar and record the days and times you work out to make sure you don't suddenly stop doing the things they want you to do on your own? Make sure you continue to celebrate the small victories - even set a goal and get yourself a 'prize' when you reach that goal.

Ask your physical therapists if you can continue to come in every now and again for assessments to make sure you're continuing to gain ground.

Find a class at a local community center or YMCA that you really like (tai chi? a spin class? gentle yoga?), and you'll keep going back to and that will help you stay moving.

And finally, don't forget to check back in with us and let us know how things are going - both good and bad.

I know exactly how you are feeling. When my thereapists said I was going to be discharged I panicked! I was in in-patient rehab for a solid month following my bleed/crani. I was in therapy 5 days a week, 6-7 hours a day (once I was conherent). I had become friendly with my therapists and the nursing staff in the hospital. I was very comforting to know they were there to catch me when I fell, both literally and figuratively. It was very scary thinking they wouldn't be there. My husband was able to be home with me for several weeks after I was discharged and that was wonderful. Still, I remember leaving the hospital thinking "Wait..I'm not better. I'm not fixe yet. I can't do this". I couldn't walk unassisted. I couldn't sit or stand unassisted. Neurologically I was all over the place. I had lost half of my vision. But, with my husband's help I did. The world can be a very scary place to a person with a brain injury. It will take time, but I promise you can do it! Take it slow. Don't try to do too much, too soon. Every day you will feel stronger than the day before. You will get there. Best of luck!

Shirasaya, you expressed this exactly how I was trying to convey. Exactly how I felt! Thank you.

I live in Fredericksburg va. I had my rupture and stroke nov4 - 2013 I was in icu three weeks then in rehab three weeks. I don’t remember first five weeks. Came home mid December with a home nurse and all kinds of therapists. Physical therapy was the only thing I needed. They wanted to give me a cane. No I could walk on my own. I never had one fall. Who did your crainiotomy? Didn’t happen to be dr. John Reavey-Cantwell did it? He did five of my six brain surgeries. He’s the best. I saw him a month ago and he gave me the all clear. No avm in my brain. No infection remaining. He said I didn’t ever need to see him again but he would like to see me in four years but it was up to me. Yay. Keep posting how things are going

Hi Dick
I can relate to your situation. I also went from a wheelchair to a cane and in this moment I am walking. . I also have an hemiparesis ( mine is on my left side)
As for my FT at home I combine my exercises with music and sometimes I even end up dancing (;
Now I am swimming and using an elliptical bike: the first times I tied my left hand to the handlebar and focused on my left foot. I can happily say that I don’t need to tie my hand anymore and I can focus on all my body. I am also trying to swim at least 2 times/week.
I have survived from 4 strokes and if I recovered I bet you can go even farther. God bless you.

Dear Dick:
I suffered a stroke after surgery (embolization) to an avm in my brain. I was in icu for one week and rehab for three weeks. After I returned home, I continued with outpatient therapy (OT,PT,speech, and cognitive therapy ) for nine hours per week. I only continued speech for two weeks after, then just the rest for a while longer. I returned to work ( I am a special ed teacher!) only four months after the stroke, once I could walk without the aid of a walker and still use a forearm cane at work. What you say is exactly how I felt-there was still work to be done. Yes-for sure it was scary to let go of the rehab who became my world, but I was determined to see my students again-my life was so much my work and I felt that what better example for all children than an adult they have known for 10 years is not perfect but copes with her own disability with determination and guts.I too was worried about the things I used to do- I have been in the camping business for most of my adult life and have not been in a pool since all of this happened. Yesterday I took a swim class at my local gym and loved it-I was terrified of losing my balance and going under, but met the instructor and explained my situation. She had me stay right next to her and it was a blast. Slowly I have attempted things which I thought impossible-from driving on the highway after a series of lessons at rehab to walking several blocks at a local street fair (this from someone who had been wheelchair bound just three months before) You will soar - you are not alone!

Hi, everyone! I haven't posted in a long time but just wanted to pop in and say "Hi." I've been MIA bc I hit a major speed bump at the end of 2014 physically which led to my diagnosis with "Delayed Onset PTSD." I thought I was just getting better with time but it appears that I just suppressed everything I didn't want to remember and now it's coming back appallingly bc of events that triggered it last year. But on to business:

Hi, Dick - Thanks for your question. It spoke to me bc I was HORRIFIED when I got kicked out of Therapy the first time. My Rupture and Stroke were in 2011. I spent 2.5 months as an inpatient and refused to say goodbye to my inpatient PT (A2) bc I was discharged in a wheelchair to fly home with my parents (across the US) and I couldn't express myself but felt instinctively that I could not walk yet, and this was a bad thing.

I was similarly distressed when I got discharged from my first outpatient hospital soon after I learned how to walk. They said my body needed more time to "incubate" or whatever - i.e. I couldn't be taken to the next level. I cried for weeks and practiced stuff I wasn't allowed to do alone to look "better" so they would keep me. It didn't work. They kicked me out anyway. My PT (A6, the one who taught me to walk) explained when I finally admitted I was nervous and he had noticed my blood pressure skyrocketing, "Therapy is about living life…don't be nervous."

3 years later I saw both of them (at different times). When I went to OR I saw A2 and was like, Hey, A - look - I can walk and stuff!! I arranged to see A6 at a local park to celebrate my walking anniversary and when he saw me (it was the first time since he taught me to walk 3 years prior) he was just like, WOW. And then there was a lot of gawking. Let me just say that unless that kind of looking is a part of your profession you cannot get away with it in normal life. FYI, folks.

Anyway, I was permanently discharged from Rehab (after 4+ outpatient places) in October 2014 and I told my PT that emotionally I would really appreciate it if she'd cut me loose real slow like bc I get really rattled when it's time to leave. The relationship with my Therapists has ALWAYS been intense. I know the names of the people who taught me to sit, stand, swallow, walk, etc. and I will always be grateful. But when I changed to Medicare under Social Security Disability I knew insurance would stop paying for things so I started setting up the infrastructure for my long term Recovery under the 100% self funded model. Here are some tips:

1) Recovery stops when YOU stop. A rehab doc told me this. So many members here are living proof that gains keep coming years and years post injury. Even though you're not a part of a formal rehab program it's critical to continue to set goals and keep a schedule. They did a monthly check in at my hospitals to evaluate and measure progress. I've had definite setbacks, but keeping goals in mind makes me focus on the big picture.
2)If you can spend the cash, get a Trainer. I have 2: Animal Muppet (who got me kicked out of therapy bc he knows neurological function and improved my gait so drastically my PT noticed and discharged me) and Coach R (also an immensely gifted Trainer - he trains teams of Pro Athletes and Olympians and is not used to helping people like me, but he chose to do it anyway). They key here is identifying someone willing to take a chance and help you, and letting them know through your behavior that your work ethic is strong and you are also watching out for signs that they know what they are doing. My people take care of all the safety issues. I also do this thing where if I think you're good I will test you without telling you. Turns out they are really good. And at this point I know I sound mean and demanding but let's face it - I have neither the time nor the money for anything less than the best.
3)If individual training doesn't fit your budget - join a gym - you might want to "interview" there before showing up so people are informed that you have had a condition but are (presumably) medically cleared to work out, join a pool as others suggest, stream Chair Tai Chi or other Chair Aerobics videos on Youtube, Netflix, or Amazon, do things for your motor skills (e.g. I have coloring books for my left hand - I have left sided Hemiparesis), type, play the piano (if you do), do lumosity,
4) Ask questions on this site. e.g. I asked how to cook. These people here are really hardcore. They taught me that there are workarounds and you can still live life even though it's different than what it used to be. Again, Therapy is about learning to live life. a6 was right. I hate it when A6 is right.
5)Learning to run: I use an AlterG (Anti Gravity Treadmill) Read this post on why and how to use one. It is SO utterly fabulous, I am addicted. It's also how I found my Athletic Trainer. My Personal Trainer made me so nervous I sought out a machine to help me (it's easier to trust a machine than a person) - the problem was that there was a Traffic Cop. Happily, he knows how to do this right, so I both run on the AlterG and train with him. The first time I ran was at PT (NRH in DC) wearing a harness. I cried bc I had forgotten what it felt like for your leg to bear your weight fully (especially the left one - it does its own thing). The first time I ran inside the AlterG Coach R had to push the buttons for me bc I was too scared to get off the ground. Now he leaves me alone to "enjoy" my quiet time bc it's the only place I'm allowed to be alone in public. I am "running" stronger, faster and longer. Of course, I started with a brisk walk. I used to count my steps on the elliptical machine - I built up from 5 minutes. I was sorely disappointed when the hemiparesis surfaced after I learned to walk and I had to sit down entirely from the pain. But after 3+ years I learned that even though no one can do this for me, I no longer feel alone.

It's the beginning of a new adventure. I know it's kind of daunting, but you can do this!!

Wow, y’all! These are great and inspirational replies. I appreciate everyone’s time and help. It is good to know that others have had these same worries and how you have powered through them. Everyone’s ideas about staying on schedule and alternatives to outpatient therapy are good. Everyone has been so helpful. I appreciate the support in this time of weakness. Like many discussions on this website, hearing about positive outcomes reduces fear that come from the isolation of dealing with one’s issues. I will continue to power through therapy with this support in mind. Thank you!

Hi Dick
I had an AVM removed 11 months ago in my cerebellum, near my brain stem.
I have limited use of my right side and I can't write or type etc.
I was in Rehab for 13 weeks and then I came back to live with Mum and Dad.
I originally was told I was never too walk or talk. And to go from an independent person who drove trucks and owned her own villa, to not even driving was extremely hard. But I started my Rehab and over time I walked, (like a duck, but I walked), I've had double vision due to the operation but I have just been told I can now drive. I go to Rural fit once or twice a week depending on whether I see the OT lady to teach me to write or for strengthening. I see an OT at least every fortnight, and I also have an Occupational Therapist from the Hospital comes every month.
At first I worked 2 days 6 hours, but now I work a full week 8 hours, and have so for some time now.
Its very scary venturing out and having to leave Rehab but its going to be good eventually, and you will get stronger and better.
Embrace it and just know that its a sign that you are improving and you are on the road to recovery.
Just remember, your not alone xx Kellie

Exactly my experience. Mine was 42 years ago so I got my life back and moved on. I have weird, anxious attacks daily. I do not know what brings them on but they pass after a few minutes. But, here I am, 42 years later. You will probably have some residual anomalies but do not give up. You should live a normal life, otherwise. Try to see your neurologist at least annually. Try to walk some every day. I still drag my left leg but walk three miles at least four or five days a week.

You've worked with the different therapists and you know what to do. I couldn't wait to come home after 4 months of therapy but I found myself missing the structure or the support of inpatient therapy. I did good after some time but had a rough go early on. There was no one to help with household chores, meal preparation and my kids expected their mom back. We eventually adjusted but even now, they still forget that I have my limitations. Go through your daily exercises with outpatient therapy and work on your own therapy on free days. You know what you need to do. As my reading skills improved, I would sing to well known songs on youtube - using the songs with lyrics. I kill 2 birds with one stone: My reading improved as well as my speech. I got into simple yoga stretches and did that for half an hour, practiced with tweezers for my fine motor rehab. I did the "clothes pin" activity... My brother says I could open up my own rehab place! You get what you put into it. I'm not the same person I was before but I'm glad to have what I was able to regain. Count your blessings. I was hell bent on working afterwards but 3 years later, I'm playing it by ear. My stamina goes bust after lunch and I've come to accept that I have my limitations. I've since joined a gym where I socialize and exercise. There is something for everyone at the gym I go to. I could write forever but will end here. Good luck on your journey.

Hello Dick
Yes I had a massive stroke before my avm which actually later caused my avm
I was just like you could not talk or walk lost my left side
I would have your PT exercises filmed on your phone and then transfer to your laptop so you can watch for your exercises at home.
For me each year since 2011 when I had the stroke I ask my doctor for PT so I can be reevaluted and learn new things.
Take it one day at a time. Swimming helped me a great deal - see if you can get a script for this there are special places here in San Francisco for pool therapy.

it is daunting to be released. One thing that helped me was taking coconut oil our brain need fat and protein to heal the doctors thought it would take me 3 years and I went back to work in 13 months probably could of used another few months but having a routine helped me and I also took turmeric ask your doctor

Good luck and keep us posted on your progress!

Hey Wonder,
Glad to hear you’re doing well. It was Dr. Mattingly who did my craniotomy and embolizations at CJW here in Richmond. I hear Mr. Reavey-Cantwell is great too.
Have a good one,

Thanks for this inspiration and your time in replying. I appreciate you sharing your story. You seem to understand the thrill of the run. I’d really like to check out the alter G. I’ve seen some videos of its use online. good luck. I wish you the best.