Monday, January 25, 2021

Keep Engaged with Life


Keep Engaged with Life
By David Wasielewski

A Strategy for Survivors and Caregivers

The stroke survivor who returns home after rehab is often met with many friends, relatives and others who want to help in any way they can. Visits tend to be frequent at first, but as the novelty of being a stroke survivor wears off, that survivor is challenged to find a new place in the home and community. The survivor is faced with an important choice. Will the survivor allow others to define their new place or do they play an active role in redefining themselves?

Some survivors allow their position to be defined for them. Caregivers and family members take up all tasks for the survivor with the best intention of helping. This can inadvertently help to squash any desire or motivation for the survivor to assume those tasks, and define their new role. Many survivors are unable to return to their job after a stroke. As we know many of us rely on our jobs and responsibilities to define ourselves.

“What are you doing these days?” is a typical conversation starter for the survivor, as it is for most anyone. With all of the help offered it becomes very easy for the survivor to come to a place where the answer is “Nothing.”, leaving little to discuss. Not having a job, task or responsibilities can quickly result in a loss of identity and purpose, a perfect formula for depression.

This can be avoided in a number of ways. The survivor may, on their own, begin to take on certain tasks. It may be difficult at first but the family and caregivers need to give the survivor the chance to take on a new task. If successful, that task can become the responsibility of the survivor. As a therapy exercise the survivor might practice loading the dishwasher after meals.

This is a good exercise in cognitive organization and planning. If successful, the task can become the survivor’s daily responsibility, giving him a sense of purpose in the family. The family can carefully look for chores around the house that the survivor can take on and negotiate that responsibility to the survivor. This gradually allows the survivor to develop an answer to the question “What do you do?” The survivor take’s on a new identity and with it, a sense of purpose.

Waking up each day with a series of tasks, no matter how big or small engages the survivor with the family and helps avoid depression. Knowing that the family depends on him or her for a certain task each day builds self-worth and a sense of accomplishment in the survivor. Responsibility and planning for the future takes a survivor’s focus off of himself and builds meaning in his life.

The survivor gradually replaces “Nothing” with “I fed the dog, I did laundry, I did the dishes’. This becomes a conversation starter rather than a killer. “Congratulations, that must have been a real challenge for you.” As the survivor regains confidence she can begin to plan these activities and restructure a life in this new circumstance.

As the process continues the survivor should be encouraged to take bigger tasks that require more engagement and commitment. My wife, in her research on stroke and caregiving came across the bulletin for a writer in this newsletter and encouraged me to apply. I could add writer to the list of things I do. I need to spend time each month determining a topic and content for my part of the newsletter. Over time a survivor’s commitments can grow according to their specific abilities.

In the best cases the survivor moves outside the home taking on community volunteer activities. One’s calendar begins to fill with appointments and projects appropriate to the survivor’s skills. I have ventured out to join my town’s Green Energy committee, organizing various community projects. Another member I know is involved in planning and presenting Aphasia awareness programs in his community. Aphasic members of my support group manage a website for an adult education group and participate in art classes.

Having a sense of purpose and responsibility encourages the survivor to actively participate in home and community life. It gives a sense of meaning and hope to the survivor, the family and community involved with that individual. These strategies need to be customized for each survivor but the basics are the same.

Vicktor Frankl writes of how responsibility and purpose create meaning in one’s life. His book “Man’s Search for Meaning” details his experience as a holocaust survivor and how that experience shaped his philosophy and the lessons on spiritual survival that influenced this article.

Copyright @February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, January 10, 2021

Gopi Tejwani Stroke-insights


The following are insights Gopi Tejwani posted on our United Stroke Alliance Community Facebook page. Gopi is a stroke survivor, as you will see in his article, so he is writing from personal experiences. He has given me permission to post his insights on our blog.
What stroke-insights did you have from your stroke?
by Gopi Tejwani

Happy new year to all of you!

    I suffered from a hemorrhagic stroke, at the age of 62, 12- years back. An AVM 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 week. The right-hand does minimal work. I drive a modified car with the left hand and foot (Gopi Tejwani, 01-01-2021).

The following are my stroke insights of the last 12 years.

1. 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!

2. Most of the stroke 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.

3. Stroke comes as the shock of life. It is so sudden in onset; I had a few seconds before I went into a coma. When you realize what happened; you start to ask, why me? Instead of asking that question, work hard on your recovery.

4. 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.

5. 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.

6. 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.

7. 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.

8. Your house may need modifications. You may need a temporary bathroom in some room on the ground floor (ask Lowes departmental store). You may have to shift your bedroom from upstairs to the ground floor. You may need a ramp in front of the house.

9. Days of impulsive behavior and quick reaction are gone. Always think before, and take a deep breath before you do anything. Have some patience.

Before you leave your bed, collect your cognitive faculties and beware of your surroundings

    10. You may lose your sleep. After the stroke, if I can sleep six hours continuously, it is a blessing. Most of the stroke survivors do not work as vigorously as they used to do before the stroke. It may be necessary for them to daily physical exercise to sleep soundly. Relearn some sleep techniques.

    11. You may need fiber intake. Stroke does affect the smooth 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.

    12. 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 physical activity you can do on your own, it is better. But if it is safer to do your physical with help from others, please do it.

    13. 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 that may be not necessary.
Your happiness is in your hands. Always compare yourself to the people who are in more precarious health than yourself. Always have positive thoughts in life. Learn to see the cup as half-full than half-empty.

    14. Never blame yourself for a stroke. Never think of why me? Why did I suffer from a stroke? 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. Show your concerns about things that you can control.

    15. 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. If a friend doesn’t say hello to you; you take a high road and say hello to them.

    16. Keep your hobbies. I enjoy international travel. I visited about twenty countries after the stroke. I did not mind renting a wheelchair when it was necessary for me for safety reasons. Or abandon some visit because other people in my tour group were getting inconvenienced, because of my slower pace.

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

After the stroke, you have to accept your body. 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 efforts. You will have a normal functional life though at a slower pace.