Welcome to Our Blog

This blog tells our experiences of living with stroke for over two decades. Stroke devastated our lives. But even though we struggle every day, we still have joy, and our lives are meaningful. We think some of the things we’ve learned can help people going through any health crisis or major loss.

We particularly want to encourage other stroke survivors and their loved ones by sharing what has helped us cope and given us hope. We want to help people discover, like we have, that There Is Life After Stroke. Our book, Stroke Survivor: A Story of Hope, tells our experiences in more detail.

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Isolation in a Crowd

Don recently felt isolated and sad in a gathering of people he did not know. A group of men stood and visited among themselves not far from where Don sat, but they did not engage with Don. Later Don told me, “They think I’m dumb.” That is what Don concluded, even though I doubt if people think that or realize how they may be ignoring him, He feels bad when he cannot follow fast conversations and cannot think or speak quickly enough to interject his ideas, so he often resists attending large social gatherings.

Don cannot easily stand for long or move around in a crowd to engage with people, so he finds a spot to sit, and people have to come to him. Years ago when Don used a wheelchair, he sometimes felt people literally and emotionally looked down at him. It is frustrating not to be able to interact with people the way he did before his stroke. That used to be one of his strengths.

Don still loves to listen to stimulating conversations, and he loves to think about deep matters. It is just more satisfying for him to interact one-to-one or in small groups of people.

What helps us cope and gives us hope:  Don cultivates many individual and small group relationships that are very satisfying to him. For Don’s sake, I need to try to remember not to talk too much when we are with friends and instead to turn conversation toward him. Don always feels so good when people ask for his opinion. He often expresses profound insights. He is not “dumb.”

Questions for our readers:  Do certain social situations make you feel “dumb?” What can the rest of us do to help you avoid or overcome those feelings?

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Thriving Again After Surgery

Following a long hiatus, I have returned to blogging. Don deliberated, prepared, and finally underwent surgery for his Abdominal Aortic Aneurysm August 5th. His doctor made an incision that ran upright over Don’s entire abdomen and attached an upside down, “Y” shaped, Dacron graft that extended from his aorta at the level of his kidneys down into both legs. This was a big deal. We are so grateful Don came through it amazingly well.

Don slept a lot for a month and has since resumed getting out with friends. He is still a bit more tired than usual but is progressing back toward his normal. This past week he had several episodes of nose bleeds that took him to the clinic three times and once to an ER on our trip to ND.

Don handled these two medical concerns, but they temporarily shut both of us down. Now it appears Don is thriving again, so we have concluded he has more to accomplish in life. We speak at a stroke support group next week.

What helps us cope and gives us hope:  We are thankful for the extremely competent medical care Don has received recently and for the fact that we have insurance. We have coped by allowing ourselves some slack and resting when we need it.

Questions for our readers:  Do you get wiped out by medical issues beyond your stroke or brain injury diagnosis? How do you cope?

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Another Challenge

Don faces another challenge this summer. For perhaps ten years, doctors have watched his abdominal aortic aneurysm slowly grow. That means the wall of his main artery descending to the lower half of his body is weakened and bulging. It has now approached the stage where the risk of rupture will surpass the risks of surgery.

We have faced this probability at each of Don’s annual and now semi-annual checkups. This is a big deal. Risk and improved health are in the balance. Don’s life is in the balance. He has debated if he wants to choose the surgery with its risks or to let it go and live until he dies.

This process has consumed emotional energy, and we have both had coughs that have knocked us down for a few weeks. However, Don has now chosen to go ahead with the surgery, and we are relieved to have scheduled it in August.

What helps us cope and gives us hope: Don has come close to death before and our older son died from cancer. Because of Don’s faith, he believes his after-life will be much better than the struggles he has now. However, Don’s surgeon is one of the best for this procedure and he feels confident surgery is the way to go. Also, numerous people have recently told Don how much he means in their lives.

Questions for our readers: Have new challenges piled up on top of your stroke or other health issues in your life? How do you cope?

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Don Can Still Drive

We wondered what Don’s doctor would say. Would he sign the form the Department of Public Safety periodically requires, that allows Don to continue his driving privileges? With meds, he has been seizure free for over twenty years, so that is not the issue. But, the form came just after we heard Don’s abdominal aortic aneurysm has again grown. Would that affect the doctor’s choice?

Driving adds immensely to Don’s quality of life. But we knew we had to accept his doctor’s judgment. So as we waited for Don’s appointment this morning, we had both worked it through in our minds  to trust the doctor to make the safe and right choice. We were both relieved and happy to see him sign the paper. Don can still drive!

Don has a few more tests, and then next week he will visit the vascular surgeon. The doctor today reassured us he had already talked with the nurse practitioner we saw in Vascular Surgery last week.

This morning we heard the answer to the lesser of our questions. Next Tuesday Don’s surgeon will discuss the bigger question about what may need to be done about the aneurysm. We are fortunate to have excellent medical professionals care for Don at an renowned medical institution.

What helps us cope and gives us hope: When we face looming news or decisions, we try to mentally wrestle until we can accept outcomes at either end of a spectrum of possibilities.

Questions for our readers:  What helps you cope with impending news or decisions? Do you recall a time when you wrestled through a spectrum of possible outcomes?  How did that help you or not help you cope?

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Sobering Options

A fellow caregiver emailed me, “How is your health? Do you have days you feel lousy and don’t really know why?”

Recently I have had days I felt completely lazy and unmotivated. I have been tired but shouldn’t have been. I’ve had less self-control with eating and using my time. This evening I found some insight.

Don has an appointment next week to check the growth of his abdominal aortic aneurysm. For several years, these appointments have come around every twelve and more recently every six months. Each time, we wonder if the aneurysm has enlarged enough that Don will need surgery.

This is big for Don. He is a poor surgical risk for various reasons and could die or have profound complications from the surgery. As he approaches his appointment, he has been mulling over sobering options. Like some people who receive a grim cancer diagnosis, Don wonders if he should choose treatment with its risks, or if he should instead decide to “live until he dies.”

Tonight Don said, “I think I’m leaning more toward having the surgery. When I think of you and the grandkids…” This marked a change of thought from recent weeks.

I know this issue has weighed on Don, but I didn’t realize or admit until tonight the effect on me. It now makes sense why I have felt lazy, unmotivated, tired, and lacking in self-discipline.

What helps us cope and gives us hope: Family members and friends have listened to Don’s sobering deliberations and supported him. Their love and our love for each other, along with prayers for wisdom, give us confidence that when the time comes, we will know what to do.

Questions for our readers: What sobering inevitabilities sometimes weigh you down? What helps you cope?

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Aim Toward the Future, Not the Past

Don used to tell his clients, “If you tell yourself, ‘I don’t want to be like my mother – I don’t want to be like my mother – I don’t want to be like my mother,’ before you know it, you will be just like your mother. Instead, you need to turn 180 degrees and  focus on the kind of mother you want to be. Then there will be hope you can break away from a bad example.”

It’s the same with living in the past. If we always long to be like we were before the stroke or some other tragedy, we will never move on in life. We will only make ourselves miserable. We need to aim at what we want our future to be like. Disability does not have to dictate an end to having joy and meaning in life. THERE IS LIFE AFTER DISABILITY.

What Helped Us Cope and Gave Us Hope: We had to acknowledge our past life was gone and would never return. We needed to let it go and then try to develop our new, post-stroke life. That released us from the miserable trap of longing for something that was not going to happen. Of course, we are tempted to dwell on our memories, but when we are grateful for the good in our past life and then turn around to develop our new life, we find hope and joy.

Question for Our Readers:  Do you sometimes struggle with longing for how things used to be? What helps you escape those thoughts and move on?

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Positive or Bitter – a Choice

Don made a significant choice as he settled into his rehabilitation. One day he said to me, “I didn’t intentionally cause my stroke. It just happened, and I can’t change that. I don’t want to become bitter about it.”

Don’s choice of attitude was consistent with his personality. I was amazed he could make that decision so early in his illness. Don’s resolution made a huge impact on his life and on our family. I watched his positive attitude help his disposition and draw people to him instead of drive them away. Don’s model inspired the boys and me to choose the same approach. We all benefited from Don’s wisdom.

Don and I agreed that we simply did not want to focus on bitterness and waste energy we could better apply to his recovery. We did not have to deny the pain; we just did not want to let our losses fester and control our lives.

The stroke just happened. To grow angry and bitter would only hurt Don and strain his relationships with our family and friends.

Don’s decision not to become bitter was difficult, and he occasionally needs to revisit his choice. However, his determination to be positive, instead of bitter, has affected the quality of our lives in such a positive way that we highly recommend it.

What helps us cope and gives us hope: Don had the wisdom and the inner strength to choose not to get bitter after his tragedy. We did not choose Don’s stroke, but we can choose how we deal with it. That gives us hope!

Question for our readers: How do you struggle between the choice of becoming positive or bitter? What helps you avoid bitterness?

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