I’ve been wanting to blog about my experience with my physical therapy (PT) from my journey’s beginning & figured this can also serve as a decent summary in which I can pass along for future providers. I purposely omitted facility & provider names.
Once I was released from critical care in Hawaii, I was moved to an acute out-patient (OP) rehab there in Honolulu. Looking back overall, I received very good care during that most critical phase. Looking back now, I do so wish they pushed me harder and knowing that I was young and very motivated for recovery. I was shuffled around between PT, OT, ST,RT, and wanting to sleep all in between! As much as I know sleep was vital, I do wish that PT sessions were longer and more intense. The main goal all along was to get me flight ready to return to Seattle. In hindsight though, I wish they discussed this overall goal not making it just about getting flight ready, but more about aiming towards full recovery as much as possible, even though it may have met that I stay in Hawaii longer. I had nearly all of my pre-stroke muscle mass & strength still. Most emphasis was placed on lower extremities where I wish as much focus was aimed at the upper extremities as well. By the time left, not mentioning other cognitive & other gains, physically I was making great progress in may areas (ADL’s, performing decent ‘transfers’ (needs for transferring to/from wheelchair to car/ plane seat etc.) and finally walking, albeit very clumsily about 100 feet down the hallway with a four point cane. So, onward home to Seattle…
Once back home, the next chapter in OP therapy began. From day one, I was subjected to a large institutionalized one-size-fits-all protocol. Here I had thought the Hawaii facility was not taking ME personally into account, here it was so much worse! Lower extremity care was just so so where I was able to somewhat refine my walking and stairs, but feel it was more up to my own continued & motivated progress based off exercises & instruction already learned. OT for the upper extremity care is where it was damn detrimental IMHO, being targeted to ADL’s getting me to try and use my right ‘good’ hand for everything. Week after precious week my muscles atrophied and my brain’s ‘learned non-use‘ began to set-in deep. The OT should have not been teaching me how to cook an egg sandwich with my right hand, but rather forcing me to use my left wherever she could. Oh hindsight is most definitively 20/20! In summary,the experience was a poor one and vital opportunities missed that I will now may just never realize. Oh how I wish someday I can be there just as a survivor is getting out of the hospital entering the acute phase to strongly warn of all of this where possible!
Around this time frame, I finally stumbled upon this must read and also got wind of the Saebo devices. On my own, I decided to start seeing a Saebo-trained therapist elsewhere. I made the most progress with her as it was much more neuro-centric. It primarily focused on the hand once the proximal mobility & minimal strength slowly returned with the OT/PT efforts along with lots of work with my Home Exercise Program (HEP) containing lots of weight-baring activity & Saebo products. Being honest, I was considerably more self-disciplined than now as ‘life’ has a funny way of interfering as it does these days.
I felt the upper extremity care was moving nicely along. I then tried out a PT much closer in my neighborhood and she was wonderful education & background in neuro, rather than only ortho, which is tough to find! We made loads of good progress. A year & a half into it though she informed me that she was relocating, so off to search for another PT. I landed with a series of two different PTs downtown, one which we never hit it off too well, where the second one was considerably better. I may choose to still see her, just not yet sure.
Fast-forward a bit to today, I went back to my neighborhood office where I’m now seeing a new PT also with neuro experience. Too early to tell, but I have a good feeling that we’ll continue to make good progress. My goals are obviously targeting my arm/hand, but also not losing sight on the work with the walking & balance. As I said above, I may also juggle between that other provider as seen fit as I have loads of insurance visits to burn through before end of year.
I’ve always said I so missed a provider (or better yet, a group of) who is able to rally a call, take control, step outside of the stated ‘protocol’ and treat me personally. I’ll close by saying I really need a provider to understand the partnership (as stated above), and do their best to bring expertise to the table as strongly as they can grabbing the bull by its horns. Most of all I need a champion in my court!