Tag Archives: clinical trial

Resources for the Stroke Survivor/Caretaker

3 Dec

Many stroke survivors do get full function back. I decided to assume that Chuck would, and I became prolifically proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I am sharing my findings in case they might help someone else.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not pursuing this route, but here are some sources, typically sponsored by the federal government and private hospitals, universities, and research centers.

http://www.stroke.org/site/PageServer?pagename=clinicaltrials
http://www.strokecenter.org/trials/
http://www.centerwatch.com/clinical-trials/listings/condition/142/stroke

Constraint Induced Therapy (CIT)
I read about CIT in The Brain That Changes Itself, by Norman Diodge. CIT involves restricting the use of the functional hand and thereby forcing the affected arm to work. The action of movement, even if a therapist manually produces it, causes neurons to fire. The arm communicates to the brain, “Hey, I’m still here! I need neurons.” Treatment takes place daily and lasts several hours. This kind of intensive therapy has been shown to be more effective than conventional therapy, which usually takes place three times a week. In order to qualify for this program, potential participants must have the ability to make a fist, which Chuck never was able to do.

The Mirror Box
The brain is the most complex organ of all the organs, containing the universe and the sum of all we know, as well as managing all our involuntary bodily functions and reflexes; which is why we don’t have to think about breathing. When brain cells are killed, as in a stroke, they don’t grow back. Luckily, the brain has plasticity; it can compensate for such loss with the help of neurons, which can grow new pathways around the damaged area. However, when a limb, especially an arm, is paralyzed as a result of a stroke, it suffers “learned disuse,” and the brain has to be coaxed into giving back function to the arm. Sometimes, it has to be tricked. This is how the mirror box works.

The mirror box is constructed of slick fabric stretched around wires. On one side on the outside of the box is a mirror. The affected arm is placed inside the box, where it cannot be seen; the functional hand rests outside the box, facing the mirror. The patient moves the functional arm while looking at its reflection in the mirror, imagining he is moving the affected arm. The brain is thereby tricked into communicating with the arm, which is what has to happen in order for the arm to move. Best of all, they only cost $40.

The Biffy
In some cases, the caretaker of  the stroke survivor has to assist in cleaning after a bowel movement. In order to avoid this task and to spare Chuck’s dignity, I turned to the Internet, where I discovered a gadget that improved our quality of life to a great degree: the Biffy. It fits onto the toilet bowl and diverts water, by way of the intake valve, through a spout that sends a jet of water into the nether regions when the user pulls a lever. The cost was $100, much less expensive than a real bidet.

Rest   With Chuck After Stroke
A person who has suffered a stroke needs lots of rest. Chuck slept 12 hours a night and took naps during the day for the first year post-stroke. The brain needs that time to heal, so let a stroke survivor sleep as much as possible.

Knowledge is Power
I also found other sources of information on the Internet, such as free magazines Stroke Smart and The Stroke Connection and books like My Stroke of Insight; Head Cases: Brain Injury and Its Aftermath; and The Brain That Changes Itself. I read as much as I could, on line and off, about stroke. As I could find very few books from the point of view of the caretaker, I wrote one myself: Stroke Happens, available on Amazon.

Educating myself was one of the best ways I was able to help Chuck. I gathered a mass of information—some helpful, some not—much of which no doctor or therapist ever told me about. In addition, doing the work helped me feel empowered in a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled many hours that otherwise might have been spent despairing.

Best, Laura Ann Garren

 

Your Best Resource is You

21 Nov

Your loved one has just suffered a stroke. You’re overwhelmed. What should you do, and when? In an effort to assist others who find themselves in this position, I’ve compiled a list of things I did, as well as what I wish I’d done, after the initial crisis.  Keep in mind that this list constitutes my opinions based on my experience as a caretaker.

1. Get the best medical care available. Make sure a neurologist is on staff. Some hospitals don’t have one, believe it or not. If yours does not, transfer your loved one to a hospital that does.

2. Apply for Social Security Disability Income immediately, even if you think your loved one won’t need it. Benefits don’t start until five months after APPLICATION, not date of disability, with no retro activity.

3. Demand that therapy start as soon as your loved one is out of immediate danger. Anticipate therapy after hospitalization and start making calls as soon as possible; every facility will have a waiting list, and you want to get your loved one on it as soon as possible.

4. Do not be afraid to dismiss a therapist you or your loved one doesn’t like, for whatever reason.

5. Research treatment options; don’t depend on the experts to know everything. Find out if any clinical trials are running, or where the best therapy is for specific conditions, such as aphasia.

6. Create an email list of family, friends and colleagues so that you can communicate about your loved one’s condition and ask for help when you need it.

7. Create an email list, website or phone tree in order to corral help when you need, then don’t be afraid to ask. People want to help but often don’t know how. Tell them, whether it’s food, a ride to the hospital, someone else to visit your loved one so you can take a break, or just a kind word. Caretaking is a grind, and you may be doing it for a long time, so pace yourself.

8. Wallow in self-pity (aka express your feelings about the situation), but try not to act out; do take care of yourself. Exercise, eat well, don’t misue alcohol or drugs. If you feel depressed, ask your family physician to prescribe meds.

9. Read everything you can get your hands on about stroke: books, magazines, articles, both in print and on line.

10. Start a journal in which you can record events, as well as your feelings. In the chaotic aftermath of a stroke, you may forget things, so it helps to write them down. Also, sometimes you might not realize how you’re feeling until you write it down.

11. Anticipate what your loved one will need upon coming home. Ask the therapists what these might be: a handicap ramp; removal of rugs that might cause tripping; shower seat; etc.

I hope this has been helpful. If you would like a fuller account of my caretaking experience, please read my book, Stroke Happens.

Best, Laura Ann Garren

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