When is it Safe to Drive?

One of our international friends passed her driving permit test today. After our roads clear of ice, I plan to help her practice behind the wheel. That will certainly not be as scary for me as when Don learned to drive after his stroke.

Don could not possibly drive for some time after his stroke. Later, he strategically asked to begin to drive with our garden tractor. This scared me, because our lawn bordered a barbed wire fence on one side and a steep bank on another, it had trees to drive around on a slope, and Don had to reach across the steering wheel to his paralyzed side to operate all the tractor’s controls. He also could not demonstrate needed driving concepts such as “fast and slow.”

An occupational therapist gave Don a driver readiness test, on which he performed surprisingly well. So I had to give up my resistance. As I hung on the back of the tractor the first time, I saw elements of Don’s driving abilities return to him spontaneously. Eventually he became our primary mower for several years, until we moved to a home in town with a smaller lawn that did not demand a riding tractor.

Don Driving John Deere

Don was thrilled when he eventually learned to drive a car again, but that scary story deserves its own blog post.

What helped us cope and gave us hope?

When Don’s lack of independence and inability to drive frustrated him, a driver readiness test demonstrated he still had abilities that had not been apparent. He found hope as learned to mow the lawn with our garden tractor – one step toward his ultimate goal of driving a car. The driver readiness test also soothed my fears about Don’s safety if he were to drive. I admit I coped at times by looking the other way when Don drove the garden tractor.

Questions for our readers:

Have you struggled between desires to drive and safety issues? What has helped you deal with the issue?

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Nothing Good Happens Fast

Our friend Jim tells of the wise counsel given by a doctor when he and the wife of a patient who had been in an ICU for a month expressed a little impatience with how long the recovery was taking. The doctor looked them in the eye and very kindly but frankly noted, “Nothing good happens fast.” Our friend adds, “Bad things can happen very fast; the good stuff usually takes time.”

Most of us have had terrible, pivotal days in our lives, with illness, death, disappointment, loss… I’m sure you’ve also felt alone and impatient for “bad things” to cease.

A stroke turned our lives upside down “very fast.” It happened almost twenty-three years ago. Weeks of therapy, months of work, years of missing our past at times made us impatient. We hoped for complete recovery, but it didn’t come. “Nothing good happened fast.” However, as we look back, we can see that good did come – in time. Don has improved so much – more quickly at the beginning – but improvement has continued over the years.

What helps us cope and gives us hope?
When we compare how Don used to be to how he is now, we see that much “good stuff” has happened in his recovery. We also are encouraged as we look back over all the years since Don’s stroke and realize we have seen our kids grow up, seen them marry wonderful young women, met and loved our grandkids, had great times with friends, and celebrated more anniversaries than might have been predicted. We are grateful for all the good that has happened to us.

Questions for our readers:
Do you struggle with impatience in your recovery from stroke or other bad things in life? Have you in time been able to see “good stuff” happen?

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Too Much Sugar

“If you have sugar for breakfast, and sugar and lunch, and sugar for afternoon tea, you know you’re bound to puke sometime.”

Don heard this statement years ago when he attended a music camp. The conductor said it to encourage his students to round out their lives with interests beyond their love for music. Don has applied the concept in life, as advice for people he counseled, and in our marriage – especially since his stroke.

We love each other as husband and wife. We enjoy being together and are proud of each other. However, too much “being together” can be unhealthy. Immediately after Don’s stroke, I could not leave him alone. As Don recovered, I progressed so that I could leave him, with a measure of apprehension. Eventually I became comfortable leaving him or having him leave me.

I can now leave Don home alone for a week, if I travel to another part of the country to visit our son and his family. Traveling is difficult for Don, so he encourages me to go alone. Both of us have our own friends with whom we spend time. We both think it benefits our relationship to be apart. We then appreciate each other more when we are together.

What helps us cope and gives us hope? We work at ways to cultivate our own identity and allow ourselves time to be apart. It refreshes our relationship.

Questions for our readers: Are you able to create time apart as a couple or as a patient and family caregiver? What are your challenges in doing this? How do you make it happen?

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Daily, perhaps hourly, my husband is conscious of how a stroke radically changed his life. The stroke Don suffered in 1991:

•           paralyzed his right side,

•           significantly impaired his use and comprehension of words,

•           destroyed his ability to read and write,

•           gave him seizures,

•           altered his relationships with family and friends,

•           dashed his plans, and

•           left him no longer able to work as a psychologist.

However, after two decades, the core of Don’s former self remains. He is still the loving, gentle, funny, wise, and wonderful man he was before his stroke—most of the time. I am proud of Don, especially of his character and inner drive that helped him deal with the aftermath of his stroke in such a remarkable way. He inspires those of us who have walked with him through his struggles.

Stroke Survivor: a Story of Hope

Aphasia Complicates Our Communication

Don asks, “What time are you leaving for lunch?”

“At 11:30, about an hour and a half from now” I say, simulating with my finger a minute hand going around one and a half times.

Thirty minutes later, Don says, “Rosella, don’t you have to get going for lunch?”

“I have another hour.”

Then Don says, “Oh, I thought you said……”

Both of us thought Don understood what I said – but he didn’t.

Much of the time, Don comprehends what he hears, but much of the time, he doesn’t. There’s no way to tell, and it’s impractical to verify every detail of every sentence. He confidently says something, and we both proceed, as if this time he has said what he meant – only to find out we’re mistaken.

When I can’t tell whom Don is talking about, I have to ask questions. Early in the conversation, I may point and ask, “Is the person a man, like you or a woman, like me?” Don regularly mixes up the gender of pronouns. I then try to tell him something about the person I suspect or ask him to tell me additional information about the person. Sometimes we have to recycle our questions because one of his answers took us down a wrong route. It often takes us several minutes to figure out what Don wants to say, when it takes normal people seconds to accomplish the same.

What helps us cope and gives us hope? We’ve learned we have to work to understand what we say to each other. Sometimes we give up, but with some patience, we usually get to the bottom of the truth. If I get the gist of what Don says, I try to let a few of the questionable details pass. We are also grateful Don can speak at all, when some stroke survivors cannot express any words.

Question for our readers:  What is one example of your struggles with aphasia? What helps you cope and gives you hope?

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Relief from Pain – Physical Therapy

Since his stroke, Don has frequently developed back pain from his uneven gait. A while ago, he developed severe back and leg pain after a long car ride. On many days over two months, he could not even get out of bed. We both became discouraged and started to lose hope.

When narcotics and a steroid injection failed to help, we found a physical therapist who relieved Don’s pain during his first appointment. He relapsed a bit, but after several therapy sessions, plus stretching and strengthening exercises at home, he is now virtually free of pain. We are so excited to have hope again. Relief of his pain is a huge motivation for Don to follow his PT’s instructions.

Don has progressed in therapy from slowly walking a short distance to walking on a treadmill for many minutes without triggering pain. He has increased his flexibility by stretching and has isolated some muscles in his leg that he didn’t know he could use. Each week he is gaining more strength and improving his gait.

What helps us cope and gives us hope? When Don’s back pain debilitated him, a physical therapist knew how to relieve the pain. She has turned a discouraging decline in Don’s health into hope and actual improvement. We are so grateful we found her.

Question for our readers: Have you struggled with pain that has taken you in a discouraging decline? What has helped you cope and given you hope?

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The LightSpeed System has adjustable straps attached from a stable frame to a lower body suit. They relieve part of Don’s weight as he walks on the treadmill and give him buoyancy and security as his therapist helps him improve his walking technique and endurance.