My Stroke Story

I don’t normally celebrate my birthday.  It always seemed to be a magnet for unfortunate events.  But I decided that if I made it to my 50th birthday, I would celebrate vigorously that I beat my Mom’s curse and might the same chances as anyone else to live a long life.

And, of course, 9 days later I suffered what folks tell me was a very serious stroke.  I was working in my home office very late at night/early in the morning.  It was well after 2am but not yet 4am, according to the last time I glanced at the clock.  The last thing I reliably remember until waking up days later in the ICU is clipping the card table in the middle of my office and falling to the floor.  Everything between there and th

My New “Favorite” Quote

It’s not doing what you want, it’s wanting what you do (as in the Sheryl Crow song “Soak up the Sun”:  It’s not having what you want, It’s wanting what you’ve got.)

It’s so easy to get caught up in all the things you can’t do any more.  And the more you think about what you can’t do, the more depressed you get.  I’d rather focus on the new things that I can do as I recover from the stroke and enjoying doing whatever I’m doing now without comparing it to what others are doing or what I did in the past.

I remember my friend Tony Gough’s older brother telling us once after we finished a very challenging bike ride from Mill Valley over the Golden Gate bridge to San Francisco and back that it didn’t matter to him how many others may have accomplished something before him;  it was his accomplishment that mattered to him.  That struck me as a very profound  insight for a young teenager and I’ve always tried to remember his attitude whenever I’m tempted into comparing myself to others.  It’s been very useful since the stroke to keep me focused on what I am doing and not wasting time wishing that my life was different.

The stroke took away my ability to drive (at least for now) and that means that I have to find other means of getting around.  I take bus and BART if they’re going my way.  I take the paratransit if that’s an option or I figure out how to get a ride.  So getting out and about is more difficult than it used to be; but I still can do many enjoyable things.  And I can still have adventures.  It doesn’t matter that they aren’t the same kind I used to have; I am still extending myself and discovering new horizons.

9 Things To Get Before Discharge From Rehab

Your last day of rehab is an emotional time when you get to look back on how far you’ve improved and thank everyone for their help and support.  It’s a great milestone in your recovery and you should savor everything about this event.

But it’s important that when you walk out of the clinic, you’ve got the stuff you need to be able to go forward on your own.  After your discharge, you won’t be around the clinic or your therapists, so you won’t have access to all the incidental resources that come with therapy that you may not even realize you can access!  Mostly, it’s information that you need to glean from your therapists, but there is also an array of aids, equipment and other materials that the therapists have at hand for your therapy that is not so easy to locate and acquire in the real world.

  1. Contact info for your therapist(s):  preferably personal, not thru the clinic.  (Therapists move from clinic to clinic & clinics may come & go.
  2. Contact info for the clinic.
  3. Contact info for doctor who supervised your rehab:  It’s useful to know someone who specializes in head trauma & rehab after brain injury should you have any questions or concerns in the future.
  4. Contact info for local stroke support group.
  5. Samples of aids & other equipment & materials:  That’s how I learned about Dycem sheets that will hold stuff to a flat surface.  Really helpful for opening containers of all kinds and being able to hold things in place when you would normally use a second hand.
  6. Catalogs with products for Rehab therapists and clinics:  Maybe I’m visually oriented put sometimes seeing pictures of stuff gives me a better idea of what it does.  And having a catalog, you can just flip through it and find things even if you don’t know what they’re called.
  7. URLs for places that sell stuff that would help.
  8. URLs for websites that the therapist finds useful or worthwhile.
  9. A plan for continuing independent rehab.

A Positive Attitude is a Healthy Attitude

At my annual checkup this week, my eye doctor was very impressed with my continued recovery from the stroke.  These kinds of appointments are fun for me because I exceed their expectations and they see more apparent progress than I do because they only see it a few times a year where I see it every day.

I respect Dr Smith a lot – she is very observant and pays attention to everything that can affect my health.  While I may not adopt all of her suggestions, I do appreciate her pointing them out and I seriously consider how to incorporate them into my life.

Dr Smith observed my positive attitude at my checkup (which wasn’t surprising given the praise I was receiving) and pointed out how important a positive attitude was to recovering from any serious trauma in life.  I was surprised that Dr Smith considered my stroke recovery an uncommon success story.  I don’t think that I’ve done anything unusual or heroic.  I’ve just remained determined to regain as much of my self-sufficiency as possible.  My expectation is that I will eventually be a contributing member of society again, just like everyone else.

Independent Rehab

Sooner or later, you will be “discharged” from your formal outpatient rehab, either because your insurance has run out or your therapists’ interest has.  At that point, you have to decide what you’re going to do:  live with your deficits as they are or find a way to get more rehab.

Once you’ve been discharged from outpatient rehab, you’ll need to go back through the justification process with your doctors and insurance.  Although I have a fairly generous insurance plan, I have still found that it works better if you present a specific deficit that you want to improve and a plan that needs only 3-6 therapist sessions to develop the rehab plan, check on progress mid-way and evaluate the results.

With most of the work being done by you on your own, you need to be prepared to arrange any equipment or materials necessary and disciplined to carry out the exercises on the schedule you devised with your therapist.

When I created rehab programs that included activities that were part of my regular life, or directly enabled stuff that I wanted to be doing, those efforts were more successful.  For example, when I was working on being able to walk more than just from one end of the house to the other, I used my wife’s trips to the library as exercises where I focused on extending my stamina to go further.   To help get back to driving, I will be riding a tandem bike with a friend.  This will increase my stamina so that I’ll be more alert when driving and give me practice with the kinds of thinking that driving requires.

I have had good luck with this approach in a couple of different areas.  If you create your own independent rehab program, please let me know how it works for you.