Depression and Stroke, aka If It Comes to Depression, You Know What Hell Feels Like

I think of depression as an inverse proportion formula--the longer you live with the stroke, the shorter you think about depression. It was that way with me, but it isn't that way with everybody.  "P" says on Facebook, "I'm still depressed 20 years later. How come you're not?"

Well, "P," the last time I thought about depression was 2 days ago. The time before that? I don't know, but it wasn't much in the last 2 years. So what prompted my depressing thought? I'll tell you.

My personal assistant said, "Do you have to wear that brace forever?" But that comment, even though it was horribly depressing, didn't give me depression. It just gave me, for a fleeting moment, sad thoughts about all the things I couldn't do anymore, like tennis, square dance, run. But I didn't dwell too long on that thought--maybe 5 minutes at most--because what's the alternative?

Plus, depression comes in many forms:

Major Depression (5 or more symptoms for 2 weeks or longer--loss of interest in your activities, sleep problems, weight fluctuations, energy level changes, feelings of guilt, trouble concentrating, thoughts of suicide)

Dysthymia (2% of people have it for a year which can be indicated by low mood  sadness, trouble concentrating, fatigue, and changes in sleep habits and/or appetite)

Bipolar Disorder (patterns of excessive highs and lows)

Seasonal Affective Disorder also known as SAD (most often during winter when the days grow shorter and less sunlight is available)

Psychotic Depression (seeing or hearing things that aren't there, incorrectly believing that others are trying to harm you)

Postpartum Depression (comes right after childbirth, lasting a week or even months)

Premenstrual Dysphoric Disorder (once-a month mood swings, trouble concentrating, irritability)

'Situational' Depression (death, divorce, financial woes)

Atypical Depression (increased appetite, sleeping more than usual, arms and legs heaviness, overly sensitive to criticism, all of which a positive event can temporarily improve mood)

If you recognize depression in yourself or others, and you or others want to get help, there is help available. (The operative word is want). Talk therapy and drugs help, but only if you want it. I can't stress "the want" enough.

Three of many studies about depression that caught my eye appeared in the Journal of the American Heart Association:

1. The Relationship Between Functional Disability and Depressive Mood in Japanese Older Adult Inpatients (Japan)

The outcome: The results reveal that factor analysis of the Geriatric Depression Scale will help in understanding the etiology of depressive mood, thereby contributing to better therapeutic approaches. 

2. Frequency of Depression After Stroke (Australia)
The outcome: "Depression is common among stroke patients, with the risks of occurrence being similar for the early, medium, and late stages of stroke recovery. There is a pressing need for further research to improve clinical practice in this area of stroke care." 

3. Depression After Stroke (England)

The outcome: "Depression was common among stroke survivors and among their caregivers at 3 months, and its rate did not decrease at 1-year follow-up. The lower depression rate in districts with active programs compared to those without supports the idea that outpatient rehabilitation and support provided by [health organizational support] may be an effective way of decreasing the rate of depression after stroke." 

So they're all saying the same thing: they haven't a clue about depression's targets and hopeful that scales or research or rates can work to deter or eliminate depression.

So those findings helped me to generate ideas.

1. Rehab therapists, on the whole, don't give reasons why you're batting the foam ball, why you're putting round pegs in round holes, why you're standing up and sitting down with 10 reps and 2 sets.

If they took time to explain why you're doing those things, maybe stroke survivors would realize the importance, not just silly games to waste time, to try and decrease or even eliminate depression.  

Sometimes, therapists don't listen. I heard them talking. They're more concerned with the schedule (oh, God, I have 3 more patients to see) and the order of the room (I must return the ball to the basket) than they are with explanations (the exercise I am asking you to do will improve your balance, endurance, your future life!)

2. Our no-nothing Congress should pass a law (yeah, that's gonna happen) that there should be a psychiatrist or psychologist or a licensed social worker in those first weeks or months in the rehab center after the stroke to avoid depression and regularly see patients and scare them "straight" into rehabbing all they can, by telling them "do you want to have a hand and foot that are dead?" or "you have to try and pronounce each syllable. TRY!"

For me, it would have made all the difference from keeping me in Hell, aka depression, for those first years. Then I went to talk therapy. Fortunately, I was only a visitor in Hell and I got out. But I wanted to escape the torments of depression. 

Remember what I said earlier? I can't stress "the want" enough.

Wheelchairs and Stroke Survivors, aka Talk to Me When You're Talking to Me

China had the first-recorded wheelchair in the 6th century, made of plant reeds and iron wheels, and then Spain, Germany, and England later, ably transported, mostly through wars, the disabled by other wheelchair materials. Many centuries later in the 1700s, in Bath, England, the most popular wheelchair, albeit cumbersome, looked like this: 
 

Now we have this: 

 

Look how far we've come. But I'm here to talk about wheelchairs in a different capacity.

 

There are two Mark Zupan's. There is Mark Zupan, the famous dean of the University of Rochester's Simon School of Business, but I'm talking about the other Mark Zupan, who earned a soccer scholarship to Florida Atlantic University. 

 

Mark Zupan

A football and soccer star in high school, and after a soccer game in '93, when he was 18 years young, Zupan got buzzed at a bar along with some of his soccer team and fell asleep in the back of his friend's truck. His friend, driving drunk, went off the road and Zupan landed in the canal, clinging to a branch for almost 15 hours, resulting in hypothermia and, ultimately, to quadriplegia.  

 

Even though he stands and walks short distances, Zupan ended up in a wheelchair for life and became a quad rugby champion twice. Zupan went on to become a TV and movie personality, appearing many times as "the guy in the wheelchair."  

 

Zupan's autobiography, "GIMP: When Life Deals You a Crappy Hand, You Can Fold---or You Can Play" and his notable championships make him famous.

But to me, he is most famous for his words: "We're normal people," says Zupan. "Don't be scared because we are in a chair. People don't understand that. They think, 'Oh, a wheelchair, something's wrong with their heads, something's just not right.' Well yeah, we may be a little twisted, but no more than anyone else." And there it is: "no more than anyone else." 

Maybe it's only me, feeling diminished by the wheelchair. I can stand and walk with a quad cane so sometimes, when I'm in the wheelchair, I raise the leg rests and stand so I'm on the same plain as everybody else. I'll explain.
 
When I go to a doctor or a store and I have a lot of walking to do, I'll go in the wheelchair, of course with a friend because I can't drive (seizures in the first year, and this is my 6th, but still...). The doctor or the salesperson always addresses my friend, like, as Zupan says, they think "something's wrong" with my head.

I was almost to the point, many times, of telling them "to look the fuck at me." But I didn't. Except one time. I was, to use on old expression, at my wit's end.

Kristin C, working with the elderly, says in an email, when looking at somebody in a wheelchair: "I think we can only learn this from exposure to [the wheelchair]. If we all realize that it is the person in the wheelchair who counts, and not the wheelchair, and actually look at the person, we will get better at it from practicing it."

But how many people do that? 10 percent? Less? Fuck. Not many at all.

Now I have a new line, much more genteel, to redirect attention back to me: "Talk to me when you're talking to me." You can use it for the doctor or salesperson. If asked, say you just thought of it. Don't say you read it somewhere. Don't give me credit. Just use it. And it works every time.