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!!