7th Anniversary of Cerebral Infarction: 'Recovery Still Ongoing' Part III - Post-Discharge Rehabilitation and Self-Training (Part 1)
This June, I marked the seventh anniversary of my cerebral infarction. While suffering a stroke is certainly not a happy event, thanks to everyone's support, I have recovered remarkably and am doing well. Although I have some aftereffects, I can walk normally without a cane and am even able to run. My left hand is a bit clumsy, but I can use it for cooking and other household chores without any issues, and I also enjoy playing musical instruments. I am happy that my recovery is still slowly continuing and that I am able to keep working. This is Part III (Part 1) of the series.
Part III: Post-Discharge Rehabilitation and Self-Training (Part 1)
10. Recovery Status at Kanagawa Rehabilitation Hospital
Simple Test for Evaluating Hand Function (STEF) results during my stay at Kanagawa Rehabilitation Hospital
I missed this in Part II, so I will add it here as a supplement.
During my hospitalization at Kanagawa Rehabilitation, my
OT (Occupational Therapy) test scores improved significantly.
【STEF Score Progression / 100 points max】
At transfer on 7/19: 0 points (^^;)
↓
Mid-August: 5 points (^^)
↓
9/14 (Just before discharge): 51 points!!(^o^)/
After that, I achieved 100 points through post-discharge rehabilitation!
Summary of Recovery Status 6 Months After Onset
■ Lower Limbs
My left leg is weak, but I can walk with good balance between both legs.
I can go up and down stairs without anxiety, although my left leg is not entirely smooth.
■ Upper Limbs
My left hand cannot be raised perfectly straight, but I can raise it above my head.
I can make rock, paper, and scissors shapes with my left hand.
Each finger moves independently, but fatigue and spasticity increase with repetition.
I have a subluxation of the left shoulder joint; the entire left arm has dropped more than 2 cm from the shoulder, and there is a clear gap when touched by hand.
Because the arm bone is not in the correct position, the range of motion of the joint is restricted.
■ Speech
Speech is somewhat difficult, but daily conversation is not a problem.
When speaking quickly, spasticity in the tongue increases, making articulation poor.
■ Swallowing
Eating and drinking are possible as usual. A tendency to choke remains, so one must not let their guard down.
Although the difficulty of each individual movement remains,
I thought to myself that I had recovered quite well.
According to one occupational therapist,
'It's a dramatic recovery. (For the type of cerebral infarction I had),
recovery is generally poor in many cases.
It must be the result of your self-training!' they told me.
They might have been trying to be positive,
but I was sincerely grateful.
11. Starting rehabilitation with the Sax, but feeling anxious about the future, wondering 'Is it impossible after all?'
Returning to Shonan Fujisawa Tokushukai Hospital
For post-discharge rehabilitation, I decided to return to
Shonan Fujisawa Tokushukai Hospital for the time being.
They asked me to bring my saxophone this time, and they provided rehabilitation tailored to playing the instrument. It was unexpected and I was very grateful.
Stunned by how little I could play
After being discharged and returning home, when I picked up my sax for the first time, I was stunned by how little I could actually play.
First of all, I couldn't hold the instrument. My fingers wouldn't press down on the correct key positions.
Although I had recovered dramatically, the shape of my fingers was uneven in muscle movement due to the mix of working nerves and paralyzed nerves.
Because of this, it felt like a toy that a child had taken apart and tried to put back together, but couldn't quite assemble correctly, leaving it feeling subtly wrong (this feeling still persists today).
When I tried to open my fingers, the spasticity was severe, and I couldn't move them smoothly.
It felt like the spasticity was much more intense when opening them than when closing them.
As for the sound, because of the paralysis on the left half of my face, I couldn't close my mouth properly, so no sound would come out.
After practicing for a while, I managed to produce sound, but I couldn't apply vibrato well.
Even so, after about a week, I managed to play, but only for four bars at a time. Even then, the spasticity in my fingers was so severe that playing a proper song, let alone improvising, was unthinkable—that was the situation about a month after I started rehabilitation with the instrument.
Honestly, my state of mind at the time was: 'Even if I can't get back to how I was, will I ever be able to perform again? Maybe it's just impossible.'
12. Post-Discharge Rehabilitation - Gathering Information to Try Various Therapies
Gathering Information on Various Therapies
While I was hospitalized at Shonan Fujisawa Tokushukai Hospital and Kanagawa Rehabilitation Hospital during the acute phase, I was collecting information on stroke treatment via the internet and hospital libraries.
While internet information is a mix of good and bad, it is convenient because you can also access specialized papers and medical information.
I examined information on various therapies while checking for evidence-based support. The specialized books in the library and books I ordered from Amazon were also very helpful.
Below, I list the ones that were particularly useful.
Stroke Treatment Guidelines 2015
The Stroke Treatment Guidelines provide standard guidance on the diagnosis, treatment, and prevention of strokes (cerebral infarction, cerebral hemorrhage, subarachnoid hemorrhage, etc.). In Japan, the 'Stroke Treatment Guidelines' formulated primarily by the Japan Stroke Society are widely used. They summarize recommendations for healthcare professionals to provide optimal treatment based on scientific evidence.
At the time I started rehabilitation after the onset, the 'Stroke Treatment Guidelines 2015' were the latest. What caught my eye were the following two therapies.
CI TherapyI had heard about from my attending physician at Kanagawa Rehabilitation Hospital, andRepetitive Facilitative Exercise (Kawahira Method)I had learned about through internet searches, but seeing them listed in the recommendation grades of the Stroke Treatment Guidelines made me want to try them. Both seemed applicable in my case.
CI Therapy(Constraint-Induced Movement Therapy)
Recommendation Grade: Grade A (Recommendation based on strong evidence)
A method that aims to restore function by utilizing neuroplasticity, by restraining the healthy upper limb with a sling or mitt and encouraging the active use of the paralyzed side.
I didn't do this. I still have some regrets, but instead, I called it 'pseudo-CI therapy' and thoroughly avoided using my right hand in daily life, using my left hand as much as possible.
It cannot be compared to strictly controlled, genuine CI therapy, but I think it was effective.
Repetitive Facilitative Exercise (Kawahira Method)(Repetitive Facilitative Exercise: RFE)
Recommendation Grade B (Recommendation based on moderate evidence)
Grade B indicates a level where 'it is recommended to perform,' and its effectiveness is recognized based on a certain level of scientific evidence.
Repetitive Facilitative Exercise is a rehabilitation method for motor paralysis (especially hemiplegia) after a stroke, developed by Professor Kazumi Kawahira of Kagoshima University. It aims to reconstruct and strengthen neural circuits by inducing and repeating movements intended by the patient through facilitation techniques. It is a method that focuses particularly on the functional recovery of the upper limbs and fingers.
I did this.
Ims Yokohama Kariba Neurosurgical HospitalI believe I am where I am today thanks to the care I received there and their dedicated implementation of Repetitive Facilitative Exercise.
Since I am an individual, I cannot provide objective scientific evidence such as double-blind studies, but I think it fits particularly well for needs like mine—wanting to be able to play a musical instrument—because finger separation is essential.
TMS Therapy
I also did TMS therapy (Recommendation Grade B in the 2021 Stroke Treatment Guidelines), but since it's a long story, I will touch upon it in the next article along with the details of the Repetitive Facilitative Exercise implementation.
Books that were helpful during my hospitalization
The following books were very helpful during my hospitalization. Although the information is from 2018, I have listed the ones that were particularly useful. For your reference.
■NHK Special: The Brain Revives - Stroke and Rehabilitation Revolution
While this book has received various criticisms, for me, it was an epoch-making book in that it was the trigger for me to learn about the 'Kawabira Method' and made me realize that even after passing the '6-month wall,' there is still plenty of hope for recovery! as well.
This was the first book I bought regarding the Kawabira Method. Its accessibility is a strong point.
It is an introductory volume, but I was able to grasp the image.
This is the most detailed one available on the market. Don't all occupational therapists who practice the 'Kawabira Method' own this?
The 'Practical Edition' made me realize the limits of what I could do on my own (laughs), which increased my motivation for full-scale efforts.
The 'Theoretical Edition' was actually more useful to me. I was able to deepen my logical understanding of the theoretical mechanism and medical basis of 'Facilitation Repetitive Therapy,' allowing me to engage in rehabilitation with firm conviction backed by evidence.
■Stroke Paralysis Improves! Arm and Finger Rehabilitation Handbook (Health Library)
This book has a wealth of self-training menus and was extremely useful from the time I was hospitalized. Despite being thin, it is a book that hits the spot, with explanations about BS stages, self-training menus by BS stage, effective rehabilitation by type of paralysis, and self-training methods.
The author, Dr. Anbo, also seems to have worked at Kanagawa Rehabilitation Hospital in the past. As he is also a developer of TMS therapy in stroke treatment, it is also useful for understanding TMS.
That is all, within the scope of my limited knowledge, but I found it very helpful. Among the authors, Dr. Kawabira and Dr. Anbo have both dedicated themselves for many years as physicians and medical scientists to the research of stroke rehabilitation and therapy.
What I feel in common when reading the works of both is a strong sense of mission to somehow break through the limits of stroke hemiplegia rehabilitation and contribute to the recovery of patients' hemiplegia! Reading the book alone gave me strength and increased my motivation for rehabilitation and self-training.
Conclusion of Part III
It was intended to be shorter, but it has become an unexpectedly major work, so I will conclude 'Part III: Post-Discharge Rehabilitation and Self-Training (Part 1)' here.
This is not limited to stroke treatment and rehabilitation, but while it is important to trust and leave things to doctors and other medical professionals, I believe that patients themselves are also required to learn and consult actively rather than being purely passive.
If they are conscientious medical professionals, they will listen sincerely to such consultations and suggestions, and provide useful information and proposals.
This time it is an article for the 7th anniversary of my cerebral infarction, but I have been keeping that in mind for my subsequent medical treatment as well.
Thank you very much for reading the article to the end.
I will continue to post articles related to happiness as well,
so I would appreciate it if you could like, comment, or follow.
Kiminori Matsushima, Representative Director, E-Happiness Co., Ltd.
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Part III: Post-Discharge Rehabilitation and Self-Training (Part 2)
13. Post-Discharge Rehabilitation: Practical Edition
Repetitive Facilitative Exercise (Kawahira Method)
TMS Therapy
Pseudo-CI Therapy
Muse Cell Clinical Trial Attempt
14. Comeback Performance: Saxophone Performance at a Jazz Live Event
15. Opposing the Term 'Maintenance Phase' (Chronic Phase) for the Period After 6 Months Post-Onset, Proposing a Name Change
Demanding the Abolition of the Term 'Maintenance Phase' (Chronic Phase, Living Phase) and a Change to a Name That Evokes Continued Rehabilitation and Recovery Effects
Reasons for Proposing the Abolition and Renaming of the 'Maintenance Phase'
The 'Fact of Recovery' Is Stranger Than 'Established Theory'!
16. Post-Discharge Rehabilitation: Selection of Therapies and Recovery Effects
Repetitive Facilitative Exercise (Kawahira Method)
TMS Therapy
CI Therapy
Pseudo-CI Therapy
Part IV: From the End of Rehabilitation to the Present
17. A Life of Constant Rehabilitation
Continuing Self-Training
Rehabilitation Through Hobbies (Saxophone, Photography, Model Making)
Rehabilitation Through Housework
Onset of Brainstem Infarction
18. Current Progress of Recovery
19. Self-Training Every Day: Working Without Breaks
20. The Necessity of Active Communication with Attending Physicians, PTs, OTs, and STs
Self-Training
Rehabilitation Through Hobbies (Saxophone, Photography, Model Making)
Rehabilitation Through Housework
Conclusion
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