Insights for stroke affected

Here is an article by Mr. Gopi A. Tejwani. Ph.D. , who also very kindly came on one of our Zoom meetups. The recording of our chat can be found here. He has also written a book on his experiences to help and inspire others. It is titled : I Survived 12+ Years After a Stroke and You Can Too: Stroke Recovery Through Rehabilitation ” . You can find more information about this book via this link.

इस पोस्ट को हिंदी में पढ़ने के लिए यहाँ क्लिक करें।

Dr. Tejwani Speaks :

I suffered from a hemorrhagic stroke, at the age of 62, more than twelve- years back. An AVM (arteriovenous malformation )in my brain stem ruptured. I was in a coma for two weeks, seven weeks in the hospital, three months in a wheelchair, six months on sick leave, and three years in professional therapy. With the grace of God, family, and friends’ support, rehabilitation, and hard work for years, I survived. I have a normal, functional life though at a slower pace. My right side of the body is still weak. The right-hand does minimal work. I drive a modified car with my left hand and foot. I am 75 now, and I still teach part-time at a major university in Ohio. I walk every day for one hour to strengthen my right leg (the details of my struggle with stroke recovery are given in my book available on Amazon).

The following are my stroke insights of the last 13 years.

1. Never give up on your recovery

After the stroke ( or TBI – Traumatic Brain Injury ) when you compare your pre-and post-stroke life, suddenly you realize that you are not as energetic, vibrant, and independent as before. It is easy to get disheartened and give up your efforts to make life independent. This is the time not to give up and instead to roll up your sleeves to work hard.

2. Keep practicing your writing!

After my stroke, the most distressing thing among others was not being able to write anything due to spasticity in my right hand. For months, I did a daily practice of about one-half hour of using the right hand to write. When I was able to write my name properly after the stroke, it was the most thrilling thing in my life.

3. Twelve years later, I still practice walking!

One of the most disappointing things after my stroke was to lose the ability to walk. A wheelchair was a great help. But to use a wheelchair brought its inconveniences, and I wanted to give up using a wheelchair as soon as possible.When after three months of using a wheelchair I was able to walk, I grabbed the opportunity and started to walk daily for one hour to strengthen my right leg.

4. Learning driving all over again !

Besides not being able to write with my right hand, the most distressing in my life after the stroke was the inability to drive.Fortunately, the rehabilitation hospital provided the facility to have an instructor to teach driving to the stroke survivors. It took years, and it was not inexpensive but when I got a new driving restricted driving license again it was a better feeling when I received a driving license for the first time!

5. Never be bashful in using a cane

The stroke made my right side of the body weak and therefore affected my ability to walk properly. Three months after I was released from the hospital, I stopped using a wheelchair. But the right leg was not healed 100%, and I was comfortable walking for long distances by using a cane.A cane gives more stability, the ability to climb on stairs when no railing is available, and helps to balance your body. Please don’t be bashful to use a cane.

6. Learning computer skills all over again !

After my stroke, it was impossible to use a personal computer with my weak right hand. Suddenly I realized how dependent we have become on a personal computer. It took weeks of practice to use a personal computer with my left hand. I still lack the patience to teach my right hand how to use the personal computer.

7. Who gets credit for my recovery and survival ?

For a stroke survivor or an individual suffering from TBI to recover one needs emotional support and physical help from friends and family, especially from the spouse. The spouse has to have mammoth patience, perseverance, and a positive attitude in life. I was and still am very lucky to have a wife with these and more qualities

.8. Never compare two strokes

Two strokes are never similar. They differ in brain region affected, duration of damage involved, whether the damage is due to ischemia or hemorrhage, and the organs normally controlled by stroke-affected brain region. Some stroke survivors recover in days, some in years! Never believe in voodoo treatments of stroke or TBI.

9. Most of the stroke and TBI survivors become angry or emotional

It could be because they are suddenly transformed from vibrant and energetic individuals to dependent and hemiplegic persons, dependent on others for help. We become child-like again! Emotions get stabilized with time, and you need the patience to put up with survivors.

10. Stroke or TBI come as the shock of life, why me syndrome?

It is so sudden in onset; I had only a few seconds warning before I went into a coma. When you wake up and realize in the hospital, what happened; you start to ask, why me? What could I have done differently? Why is God unfair to me? Instead of asking that question, work hard on your recovery. There is no satisfactory answer to those questions.

11. There are no medications for a stroke per se

You have to prevent or treat an underlying disease like hypertension, diabetes, or stress. Or treat the damage created by strokes such as pain, aphasia, dysphasia, or weakness of the affected body parts through rehabilitation. There are no magic bullets. Recovery follows hard work through rehabilitation on your part throughout your life.

12. It is a relearning process

A stroke survivor may have to learn basic skills such as walking, talking, comprehension, writing or driving, etc all over again. Just like we show patience when our kids are learning these skills; a caretaker of stroke survivors has to have mammoth patience. It is much more difficult to teach these skills to adults. Please never run out of your patience.

13. Rehabilitation through various therapies (cognitive, occupational & physical) works

If you start earlier, it is better for you. Consistent efforts result in a better recovery. You can aid your recovery by working zealously and hard. Don’t have guilt that someone is helping you and you are a burden on him/her. This is the time to use family help and practice family values. Always, family members come first.

14. AFOs, braces, and canes may become part of your body

It is a good idea to use them to keep your body stable. I still use my right foot and leg AFO and a cane, 12 years after my stroke. People tell me that I look graceful with my cane ! Don’t feel shy to use them. It is better to be careful than be sorry.

15. Your house may need modifications

You may need a temporary bathroom in some room on the ground floor (maybe a visit by a departmental store person could help here ). You may have to shift your bedroom from upstairs to the ground floor. You may need a ramp in front of the house.

16. Days of impulsive behavior and quick reaction are over

Always think before, and take a deep breath before you do anything. Have some patience. Before you walk on an uneven surface or leave your bed, collect your cognitive faculties and beware of your surroundings to prevent falls. Please spend a few more minutes immediately after waking up to comprehend your surroundings and achieve your goal.

17. You may lose your sleep

After the stroke, if I can sleep six hours continuously, it is a blessing. Most of the stroke and TBI survivors do not work as vigorously as they used to do before the stroke. It may be necessary for them to do daily physical exercise to sleep soundly. Relearn some sleep techniques. For good therapy and workout, you need good sleep and a well-rested body. A clear mind free of unnecessary worrisome thoughts, deep respiration, and daily exercise helps me to sleep better.

18. You may need fiber intake

Stroke does affect the muscles in our intestine. They may not work as vigorously as before. You may suffer from constipation. Increase your fiber intake by eating more fruits and vegetables, whole grains, prunes, semi-ripe, or ripe pears. I also take wheat dextrin (Optififber from Costco) daily.

19. You may have a double vision

When I was in the rehabilitation hospital, there was only one painting hanging on the wall in my room. But I used to see two paintings superimposed on each other. I wondered why they would hang paintings like that. Your ophthalmologist can correct the problem. I had to make new glasses and my problem was resolved by itself in about six months.

20. Recovery from a stroke is safer with help

The help from family and friends is invaluable. Your faith in the almighty may help. Your hard work and constant efforts in therapy will expedite your recovery. More the physical activity you can do on your own is better. But if it is safer to do your physical activity with help from others, please do it. Never feel guilty about asking for help. This is the time for family help and determination. Always believe in the almighty, it will expedite your recovery.

21. You may not be able to do certain tasks

For me, the days of running are over (due to weak right leg) as is swimming (due to weak right leg and arm), and also over is writing long hand-written letters. I can type with one hand or use the voice dictation device on my Smartphone, and that is a blessing.

22. Learn to take public transportation meant for disabled people

I was not aware of bus services such as the Central Ohio Transit Authority (COTA) Mainstream bus service for disabled people, and instead relied on help from friends, and I appreciate their help. But I could have more relied on public transport for disabled people instead, in the earlier stage of my stroke recovery. Find similar services in your city and use them as early as possible and safe.

23. Your happiness is in your hands

Always have a positive mental attitude in life. Learn to see the cup as half-full than half-empty. A positive mental attitude expedites your recovery. Two happy blind teenagers whom I met on a bus made me realize how lucky I was despite getting a stroke.

24. Never blame yourself for a stroke or TBI

Never think that you caused your stroke or TBI. Unfortunate things happen in life. Why did I suffer from a stroke or TBI? There is no answer to that question. Whatever God gives you in life, take it, and try your best to deal with new calamities. Don’t worry about things that are beyond your control. Instead, spend energies on things that you can control. You can control your rehabilitation after a stroke.

25. Don’t change your interactions with your friends

Behave with your friends in the same manner, as much as you can, as you used to do with them before the stroke. I still have my old friends. I also have many new and younger friends ! Reach out and meet people.

26. Keep your hobbies

I enjoy international travel. I visited about twenty countries after my stroke. I did not mind renting a wheelchair when it was necessary for me for safety reasons or abandoning some organized-tour visits because other people in my tour group were getting inconvenienced because of my slower pace. There is no harm in being considerate of other people’s schedules. Tour guides are under pressure to keep moving a group tour at a certain pace.

27. You may have to prove that you can work

An employer wants to make sure that you retain your ability to work after a stroke or TBI. I had to prove my ability to teach at my university by giving a lecture to my group of therapists. The employer wants to make sure you are still able to work or make sure to protect you by determining that work is not causing undue stress on you. In that case, you may qualify for disability benefits.

28. You always improve when you do an exercise

Most of your therapy gains indeed occur in the first six months to the first two years. But the improvement in your mobility keeps occurring as long as you continue to do your exercise. Besides, if you do not continue to do your exercise, your improved mobility may deteriorate to the level seen immediately after your stroke. Use it or lose it! Our brain prefers brain cells that are active and working!

29. What choice do you have ?

The damage induced by a stroke or TBI cannot be undone. There is no point asking, “Why God is being unfair to me?” No point in saying that you are getting tired of taking care of yourself or your loved ones. You have to roll up your sleeves and cope up with the crisis. Unfortunately, stroke is equally bad for survivors and their caretakers. Be your best friend!

30. It is difficult to comprehend the plight of stroke and TBI survivors

Don’t expect people to understand what you are going through, they can’t. A stroke or TBI is so disabling and life-changing, it is impossible to understand unless experienced; only other stroke or TBI survivors will understand your struggles. Unfortunately, it is true with most unfortunate things happenings in any person’s life. But do not hesitate to share your struggles with them in case they can provide you with sympathy or help you may need.

31. Your most soothing/ encouraging words come from your health providers

When after a “Gamma Knife Surgery” to correct my AVM, my neurosurgeon told me, “you are normal, your chances of getting a second stroke are as good as mine, and hereafter don’t come to see me unless you want to say hello to me,” – these were golden words to me and played psychologically a tremendous role in my recovery. Positive thoughts and advice enhance recovery. Be always optimistic.

32. Finally, you may have to accept your new body after the stroke

After a stroke or TBI, you may have to accept your body as such. Your body may be hemiplegic, slow in moving and thinking. You can not be as vibrant and energetic as before. You have to have patience. Work and pray hard. Time is a healer. Measure your recovery not in days and weeks but months and years. Every day you progress and recover, but the recovery may be noticeable after a long time of doing the effort. You will have a normal, functional life, though at a slower pace. Recognize new reality.

Editor’s notes : This a forthright, from the heart and experiential sharing from someone who is himself affected and making best efforts to recover as well as inspire others. All aspects may not apply to all. Please do discuss with your treating doctor / therapist before starting on any new regimen/course of action.

Mr. Tejwani had also come on one of our Zoom meets and shared his thoughts and experiences with our group members. Here the recording of the same :

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If you have limited/No information about Stroke, its symptoms and consequences, we STRONGLY suggest you read at least one of the following before you leave this Website, as well as share the links with your friends and family. You may save someone from sudden death or being crippled for life !
* Be fast – Stroke Symptoms in English with Videos of Actual Strokes
* स्ट्रोक (आघात) – हिंदी में कुछ जानकारी
* स्ट्रोक-के-साधारण-लक्षण
* In Bengali – Be Fast – দ্রুত !
* In Gujarati – જ્યારે સ્ટ્રોક આવે ત્યારે BE FAST
* In Marathi – BE FAST स्ट्रोक होतो तेव्हा !
* In Odiya – ଷ୍ଟ୍ରୋକ: ମୃତ୍ୟୁ ଅଥବା ଶାରୀରିକ/ମାନସିକ ଅସମର୍ଥ