To Soj: Goodbye and Thank You

We were shocked and saddened to hear of The Sojourner‘s death on Sunday, May 25. This was especially unexpected, since she had just presented a talk on “Survivor perspectives on stroke” at our Event on May 19. Others have written about Soj and her wonderful contributions. I did not know her well, only meeting her shortly before our event. But–she was an amazing person with much to give. I’d like to continue her legacy in a small way by sharing excerpts from the talk she gave just 6 days before her death. If you would like a transcript of all her comments, please email or IM me in world.

What Rehabilitation Professionals Should Know

[8:22] The Sojourner: I guess one of the things I wanted to address with you , and rehabilitation specialists (and others) is that many, many strokes are misdiagnosed and are NOT text-book. (Soj has had 10 strokes that were documented and many more TIAS)
You do NOT have to have facial droop or residual paralysis to have had a stroke.
You CAN begin to have seizure activlty (not epilepsy symptoms) following stroke.
You CAN have physical residuals without noticable cognitive residuals
And by the way, not all abilities affected by stroke are addressed in the screening tests for them, which is often all you get
Improvement in status goes on for YEARS beyond the initial stroke event.
If you want to talk with some stroke survivors and caregivers who have had over 10 years post experience with it… check out the stroke forums on

The 3-month spontaneous recovery period was not meant in its original form to be used the way that insurance companies and others use it. It was meant as a DESCRIPTION for the improvement that occurs naturally through the healing process of the brain following stroke -reduced swelling, new neural pathways, blood vessel collaterals being formed
Collaterals are like having a main thoroughfare for traffic and having an accident on it, so you deviate down a side road to get where you are going

Another point I wanted to bring up is to look out of learned helplessness.
The patient needs to challenge him/herself changes over time. This takes adjustments on the caretaker’s part. After awhile the caretakers may step into patterns to make things easier for themselves, which decreases opportunities for the patient to use new or improved skills As with all of us who work with stroke patients, you are not working with just the patient but with the family and environment as well. And, I believe, this is especially true of OTs and speech professionals.

As a final point that I would like to make is ….
If they are experiencing a decline in performance or not making the progress you expect,
ask yourself
1) are they medically stable? I found that individusals with medical needs/illnesses did not do well in therapy until those were attended to
2) Did they get their meds today?
3) Is this their low point of the day traditionally?
4) What did they do yesterday?
Stroke patients are notorious for fatigue and often that happens the day following an event.
If someone tells you they cant feel the floor when they stand up.. believe them.
[Tell them where their foot is and when it touches the floor and can stand.
If someone tells you they can’t remember – they probably can’t.
Memory can’t always be triggered when it is true memory loss.
and.. if someone has trouble processing information —
DON’T YELL.Their hearing is intact.
I think too often poor behavior is blamed when actually it is a problem of functionality.
Listening is soooo important
Those are the big points I wanted to express this morning.

I then asked Soj to share insights on what she had learned through her experience of stroke. This is what she said:

[8:41] The Sojourner: well.. again… I am coming from the point of view of a person who used to be a professional working with stroke patients to actually being one.
One thing I learned is..not to be so afraid of them There is always the fear that you will have another one for most stroke patients, or that the condition you are in right now.. is how you will be months or years from now
I dont think that, except in the most severe cases, that is true. Life continues
It isn’t the life you knew or wanted but it continues, and it forces you to keep moving and growing. And with that growth comes a new life with continued growth
SL helps with that. But.. a stroke doesnt have to be the end of your viable life and many people, even with full sided paralysis at the start, can learn to walk, exercise, run, drive a car over time.
But you have to be willing to keep at it
The other thing I learned through all this is…..what a marvelous thing the body is. I have had some strokes that were pretty “pure” meaning that they affected a particular part of the brain
And you don’t often find that. One… was a pure expressive verbal aphasia. I woke up from a nap and could understand the tv and my son, but when I was all garbled.. like marbles in my mouth. It was kind of interesting: and I kept thinking about my patients and what they had experienced. I think that overall, the main things that stroke survivors encounter uniformly are:
1. social isolation
2. change in personal, family, and social roles
3. loss of sense of control
4. loss or a sense of confused personal identity
5. fatigue
Those seem universal.
Problems with physical limitations, difficulty in communication, sloweed responses, and memory interruption are more personal. That is also where SL can help
You can do things in here that help you stretch your residual abilities.
A farmer/landscaper may not be able to use a plow in RL but can landscape or have animals in SL. Teachers like myself, can not teach in RL… but can in SL. Someone who was an accountant in RL may not be able to do that but can use a little of his skills in SL
SL can help with memory function, vocabulary, all language functions, planning. I have talked about that a lot in the past but haven’t really gotten itno personal issues..
I think that is something that also needs to be addressed so that people can really see a bit of stroke and how it affects people.
If anyone would like a landmark to Dreams, let me know

[9:15] The Sojourner: waves to everyone .. nice to meet you and to our Dreams members, thanks for the support

From all of us: Thank you, Soj. You will be greatly missed.

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