Quirky Personality of the Stroke Survivor: Caregivers Are the Most Important Part

C’mon. You must know a stroke survivor, with 800,000 getting strokes annually, and that number is just for the United States alone! At the very simplest common denominator, this post is for:
* Stroke survivors trying to figure out why they're different from before
* Families/friends trying to understand the stroke survivors' change
* Caregivers who act as a bridge, aka lynchpin, between survivors and families/friends

First, some background. Scientific American's Jon Stone, a consultant neurologist, writes, "Friends and relatives may report a personality change that is hard to pin down. Some of these changes, such as low mood and anxiety, are more likely to be related to a person's feelings about having a stroke than to any harm to the brain." 

But he contradicts by saying (I am the critic, too), "A genuine shift may occur, however, when the frontal lobes sustain damage. The frontal lobes play an essential role in regulating emotion, decision making, and judgment." 

"A stroke that hits the cerebellum," he continues, "can also trigger a personality shift. This brain region is vital to many aspects of executive function. Damage here can bring about disinhibition, which often manifests as inappropriate behavior. Other 'negative' personality changes include poor decision making, aggression, and irritability."

He also says less common are cases of “positive” personality changes, in which people reportedly become happier and even nicer. (I became more compassionate and less judgmental).

The Stroke Foundation of Australia lists changes in personality including inability to do anything, being irritable or aggressive, saying or doing things that seem inappropriate to others, and acting without thinking, and doing things that are not safe or are not appropriate. 

(In my book, The Tales of a Stroke Patient, I escaped from the sub-acute facility, and lived to tell about it, in search of soft-serve ice cream, ignoring safety concerns like traffic and mixed-up directions. Poor decision, right?)

In an article "The Psychology of Stroke in Young Adults: The Roles of Service Provision and Return to Work," written by Reg Morris and published by the venerable National Institutes of Health, the study is recounted that young stroke survivors have more practical and physical needs than old survivors. 

Stroke survivors under 50 years of age were studied, and found that family conflict and loss of home, employment, and spousal dissension were common practical problems. 

In summary: 

Employment loss was rated 80%–90%.

About half of survivors had psychological disorders, mostly depression or anxiety about work, recovery, and childcare.

A quarter to a third exhibited denial, anger, frustration, or hostility.

A majority expressed problems with employment, finances, social participation, and/or sexual problems.

Frustration was a main theme found in survivors under 55 years old, for up to two years after a first stroke. 

The frustration was related to fatigue that affected everyday activities and gender roles. 

Invisibility and "outside the loop" centered around lack of information and consideration of young survivors, a shortage of activities for the younger survivors, and the awareness of their apparent cognitive and yet "invisible" impairments. 

The austere Cleveland Clinic says the loss of a person’s former identity can result in depression, anger, and frustration which calls the grieving process, denial, anger, bargaining, depression, and acceptance, into play.

Some stroke survivors have difficulty with their communication skills following a stroke. They can be categorized in two general areas.

The first is speech disorders, says the Cleveland Clinic, and the second is aphasia, "the loss of ability to communicate normally resulting from damage typically to the left side of the brain, which houses the communication center." It may affect a person’s verbal expression, auditory comprehension, and the person's ability to read, write, and manage numbers.

"Some stroke survivors may have slurred or garbled speech as a result of muscle weakness or incoordination (called dysarthria) or motor programming of speech muscles (called apraxia)."

A Speech-Language Pathologist (SLP) will be on the scene to evaluate the patient’s communication skills and show ways in which the family can help. The SLP will also recommend any follow-up after the survivor is released from the hospital. 

And finally, the most important part in this post. The American Heart Association journal, a study was published and it was named "A Quantitative Study of the Emotional Outcome of People Caring for Stroke Survivors," i.e. caregivers.

In a randomized trial, the patients and caregivers were asked to complete 2 measures of emotional distress. A "regression analysis" was used to name the factors that were associated with poor caregiver outcomes.

Fifty-five percent of responding caregivers indicated that emotional distress is common. Caregivers were more likely to be depressed if the patients were severely dependent.

The study's main goal was to help to identify those caregivers at greatest risk of poor outcomes. 

I could have told you that. Hands down, every profession from street cleaners to neurosurgeons have people in those occupations that shouldn't be there. Yes, caregivers, too. You know someone who shouldn't be what they are if you really think about it. 

When it comes to caregivers, they are the most important of all. They are the lynchpin to find the common ground on which the survivors' antics, if you will, are understood by family and friends. 

It's all up to you, caregivers, because things happen fast in the world of stroke and other brain injuries, leaving the family and friends who come to see them, too soon in most cases,  bewildered and angry, and often times there is no source for that confusion and disarray.  It just happens. You can't blame the stroke survivor, yet many of them do.

So if you're a caregiver, DO YOUR JOB, and that means going the extra mile beyond bathing the poor soul and cooking the meals that aren't high on the priority list. Try to make sense, to the families and friends, of the stroke survivor's behavior. Or any brain-injured person, for that matter.

Otherwise, as I've said to the caregiver, more times than I'd like to count, "Get the hell out!"

PRP: Give a Little Blood, Get Some Amazing Results, Even With Hair Loss

Here's a question for you. What do Lakers Lonzo Ball (knee injury), golf's gift to women (only kidding) Tiger Woods (torn Achilles' tendon), and Brewers pitcher Chris Capuano (strained quadriceps) have in common? The answer is, they are professional athletes who all had PRP. In our over "acronym-ed" world, the term stands for Platelet-Rich Plasma. 

Sometimes it works, sometimes it doesn't. However, when it comes down to a possible career-ending choice, it's sometimes the right choice, born of desperation and hope. 

PRP, for ordinary folks like you or me, comes down to QOL (quality of life) issues, and that's just as important. 

PRP therapy is a nonsurgical treatment for individuals suffering from chronic tendon injury or osteoarthritis, for example. PRP treatment utilizes the patient's own blood to source platelets, which are then injected into the bothersome  area. In addition to pain relief with no surgery, PRP speeds up the healing process. The procedure takes less than an hour, and most patients return to pre-injury status within three months.

A single PRP injection costs $800, while additional injections in the same area cost $600 each, as of 2015. The cost of platelet-rich plasma treatment varies based on the amount of treatment administered, states Emory Healthcare.

OrthoInfo, a website published by the American Academy of Orthopaedic Surgeons (AAOS), says it may be beneficial for chronic tendon injuries, acute ligament and muscle injuries, surgery and fractures to make recovery faster, and knee arthritis. The AAOS also says the following: "There may be increased pain at the injection site, but the incidence of other problems — infection, tissue damage, nerve injuries — appears to be no different from that associated with cortisone injections."

What you probably haven't heard of is that there's a similar treatment for hair loss, and yes, it requires your blood.

It's called platelet-rich plasma, too, says Joshua Zeichner  the director of cosmetic and clinical research in dermatology at Mount Sinai Hospital in New York City. 

"Our blood is made of two main components, red blood cells, and plasma," he says. "The plasma contains white blood cells and platelets, which are rich in growth factors."

Beginning with a standard blood draw from the patient's arm, there is a careful process involved in using PRP for hair regrowth. 

Zeichner says, "The tube of blood is put into a machine called a centrifuge, which spins the blood tube to separate out the red blood cells from the plasma. The plasma, rich in platelets, is then injected directly into the scalp at the level of the hair follicles." [Ouch!]

The process is precise with injections beginning across the scalp, approximately at every half inch over the area of thinning hair. The procedure takes less than a half hour. There's no documented risk associated with PRP. 

"Most patients get injections without any numbing, as there is minimal discomfort," says Zeichner. "However, cool air or ice packs may be used to minimize pain." In the event there is any after-procedure pain, Zeichner recommends Tylenol. Bruising can occur but usually is resolved within a week or two.

Zeichner adds, "I personally recommend a warm shower, as the hot temperature will enhance blood flow and circulation throughout the scalp. PRP is best used for patients with androgenic alopecia, which is a genetically determined type of hair thinning that typically occurs along the top of the head." 

Treatments are typically performed once a month for the first three to four months, and then every three to six months, depending on the patient's response and results. 

"The first result that patients usually note is decreased hair shedding, followed by early regrowth and increased length of hair," says Dr. Neil Sadick, a dermatologist in New York City. He illustrates:



"The general consensus is that receiving treatments every three to six months on a long-term basis are optimal for continuing to stimulate the growth factors and stem cells that are associated with regrowth and stopping hair fallout," says Sadick.

Maybe I'll look into PRP for my re-fractured rib and my poor posture affecting my spine from my stroke. Desperation, hope, and quality of life. There they are! Just like I said!

When Is Enough Exercise Enough?

[This post is to all chronically-ill people, their caregivers (or personal assistants as I call them), their family, people who suspect a chronically disease eventually because it runs in the family, and that equals a lot of folks.]

I came across this statistic: By 2030, as many as 11 million people could be living with stroke as more people live longer. Yikes. Research time.  

The title from Flint Rehab: More Is Better… Except When It’s Not, caught my eye. 

Flint Rehab says, "While repetition [of exercise] is important, too much exercise can start to hinder your progress. [Uh huh.] You need a good amount of rest and sleep in order to successfully recover."  

Something, but still nothing that answers my question specifically.  

And it got me thinking, because most times for me, it's never enough. Then when I hurt badly, aka when enough is more than enough, I turned to guilt because for several days, I rested my weary bones. One step forward, one step back, kind of thing. No progress at times. None at all.

When I achieved rest, and dreaded naps, it messed up my sleep, aka circadian rythyms. Then I couldn't go to bed before 3am. That's 3am on a good night. Now, I don't take any naps. And yes, I am tired, but it's a trade-off. I want to have good results with my exercise instead of giving in to my fatigue.

Now, I set the alarm on my cell for 15 minutes no later that 1pm. The power nap routine! That's just enough rest to re-fire my engine and sleep, aka nap, or not fall asleep. With my  eyes closed, it's still rest.

But I digress. This post is not about circadian rhythms, let alone mine. It's about exercise, specifically, "Am I doing enough exercise and how do I know when I reach that point of, it's enough?"

The Stroke Foundation across the other pond, aka Australia, says the repetition is the main focus on improvement. 

"Regular activity will help you to continue your recovery. Exercise improves your fitness, your general health, and reduces your risk of having another stroke." 

That means not when you feel like doing it but doing it every day. But nothing in that article addresses "when is enough exercise enough." I plowed on.

Then I came across this: Exercise is a valuable yet underused component for post-stroke care, according to an American Heart Association/American Stroke Association scientific statement. [Hmm. Now we're getting somewhere.]

"There is strong evidence that physical activity and exercise after stroke can improve cardiovascular fitness, walking ability, and upper arm strength," said Sandra A. Billinger, P.T., Ph.D., lead author and a physical therapist at the University of Kansas Medical Center in Kansas City, KS.

[Read more, I said.] 

"Yet, too few healthcare professionals prescribe exercise as a form of therapy for stroke. There is a big gap in America once stroke patients are discharged from rehabilitation and the transition to community exercise programs when they go home. Many are left on their own. [I was.] We don't have a system in place to help stroke patients feel comfortable with exercise.

And here it was:

"The general recommendation," says Billinger, "is that survivors exercise at least three days a week for 20 to 60 minutes, but that depends on their individual functional capacity. For many stroke survivors, multiple 10- to 15- minute bouts of moderate-intensity exercise may be better tolerated.

Aah. Hard data. At last. I was striving to do the exercise every day. It was too much, the good doctor implied. Every day. Core strengthening, 15 reps, 3 sets, the same with marching and leg stretches and Thera-band leg pulls and lifting my legs outward and behind me while holding on to the countertop, one leg at a time, and walking the halls for 500 feet, and weights, left hand only. 

Now I alternate with walking the halls and weights, and the other stuff aforementioned. I just started last week but no pain. I feel the good hurt. Life is good at the moment. I have the feeling that I found the key.

But Stroke is an ongoing mystery to find the other keys. Always a key.