List For Recent Survivors & Caregivers

Below is a concise listing of what I think to be the top-most things to consider post-stroke. I would give everything for someone to have given us such a list just as I was leaving the ICU headed toward In-patient Rehab.  Well okay, at any point along the way! A lot more detail is needed behind each one of these, but you must do your research, even though at times, it’s very lacking. This, my wife, Jeanie & I discovered was exceedingly difficult, so hopefully, the below is a place to start of some big lessons learned so far on our journey. I touch on many of the topics here on this blog but do search elsewhere if you can.

  1.  Time is of the essence! Within reason, every week that goes by is vital to improving chances of greater recovery. Also, if you don’t like your doctor or therapist (whether PT, OT, speech/cognitive, etc.), or think you could benefit from working with someone else, get a new one without wasting time! You may even find, as I did, that you want to work with different people over time.
  2. From day one, seek mental health therapy. Also, if you don’t feel a connection with your therapist after a few visits, get a new one!
  3. Educate yourself. I highly recommend this book: Stronger After Stroke – Peter Levine. Other great books on my resources page here but definitely start with Peter’s. Should be the bible every hospital discharges you with! There are also lots of stroke survivor blogs that will pop up in a search.
  4. Be your own health advocate. America’s health system is so broken. You may not even know what questions to ask, but at least ask your neurologist to honestly assess how much work you need to do to regain function. Not, “What are the chances I will get use of my hand back?” but “What do I have to do to have a chance to get my hand back?” Doctors never want to tell you odds, or that you WON’T improve, so you have to find ways to get around that. Seek out alternative care as well, e.g. naturopaths, acupuncture, pool therapy, etc. Stroke recovery should be a team effort, and it is kind of up to you to create the team you want and get the treatments you want. Unfortunately, the medical system doesn’t really do this for you.
  5. Sleep is ever so important. You already know this, but really here it becomes vital.
  6. [If motor deficits] Don’t let doctors & therapists only help with getting you to use your non-affected side as a coping mechanism. This is a disservice as you must be ‘forced’ to use your affected side in order for it to return! Sure, things need to get done expediently sometimes, but the more you rely on your non-affected side, the more your brain forgets the other side.
  7. Find ways to get back to what you love doing. I got a recumbent trike so I could keep biking to get exercise and be outdoors and figured out some adaptive equipment for kayaking. I joined Outdoors for All’s skiing program (just about to start my third year skiing) and tried Feldenkrais when yoga was still out of reach. I also asked my PT to help me work on specific muscles to improve my skiing. Making progress there, and it helps my walking too.
  8. Document your efforts and progress. Doesn’t need to be a blog like this, but giving yourself milestones and then tracking when you reach them is not only a confidence-boost, it also gives you perspective on days when you feel like you haven’t gotten any better. I just posted an update for 2017 and did one in 2016, and 2015.
  9. Put serious thought into when or if to return to work. Returning can do wonders for cognitive return, but it’s an awful lot of stress both mentally and physically. Looking back, I returned too early.
  10. Adaptive devices, no panacea. Sure, there are a lot of really nifty gadgets to aid with Activities of Daily Living (ADL), but recommend don’t use too early.  Do your best to make use of the affected side if you can.
  11. No hasty decisions for at least a year. Buying a used recumbent off a dude on the east coast where he disassembled the entire thing arriving for me to put together. Not a good decision ;-). One of many mistakes I made in that first year. Your brain often just isn’t in a place for solid reasoning. Also, wait to decide to sell off belongings and such or other big life decisions for at least a year or more.