Having suffered from Lyme/spirochete infection which was diagnosed as Multiple Sclerosis at first, for a number of years, I have had to adapt my lifestyle to cope with a brain that behaved as though I had a brain injury.
I did not have a brain injury just cognitive dysfunction.
I wanted to know more about how does one cope with a cognitive dysfunction it's well and good knowing and reading about it but how does one cope?
I needed to know so I could help my children as well as my brother.
There is this one particular article for exactly this problem and this article may be written for CFS/F.M. I feel it can be applied to any autoimmune disease or Lyme/spirochete Infection.
Up until the 1980s, most physicians believed that cognitive dysfunction rarely occurred in people with MS. But since that time, studies have shown that between 55-65 percent of people with MS have some level of difficulty in this area. The best way of managing cognitive problems is to first understand the problems then practise strategies to overcome or compensate for the inconvenience they cause.
Cognitive process involves attention, memory, learning, organising, comprehending, thinking, and judgement. In MS, cognitive problems result from demyelination or plaques in the cerebral tract of the brain. Not everybody will experience cognitive problems, and those who do will usually have quite mild symptoms. Also, the symptoms may vary from person to person. "Only about 10 to 20 percent of individuals develop symptoms severe enough to limit daily functioning," says Dr. Jill Fischer in her article, "Cognitive Impairment in MS: The Forgotten Problem."
Sometimes recognising cognitive impairment is the hardest first step. Family members may be the first to notice some of the following difficulties:
- Impaired attention, perception and/or memory
- Disorganised thinking or acting
- Inefficient processing of information
- Difficulty processing new information, rules and procedures
- Unable to remember old or stored information
- Ineffective problem solving and judgement
- Inappropriate social behaviour
- Impaired goal setting, planning or awareness of strengths and weaknesses
The following strategies can help you compensate if you have problems in these areas.
Remembering things that happened years ago is often easier than remembering something that just happened. To avoid the frustration of short-term memory loss, try some or all of the following:
- Keep a calendar.
- Clocks and watches with beepers or alarms can remind you to do something.
- Use a tape recorder.
- Keep lists (shopping lists, questions to ask physician, etc.).
- Hang post-it stickers on the refrigerator door.
- Writing things down may facilitate memory.
- Arrange your environment: for example, combine clothing according to outfits, or keep frequently used kitchen things in a certain place.
Remember that communication is the key. The main goal is to convey the idea, even if the exact words are not used. Ask family and friends to give you adequate time to express yourself. When you can't find a word, try some of the following strategies:
describe the word or idea you can't get out.
think about something else - the word you want might come to you.
painting a picture in your mind helps elicit words.
gesturing and drawing can help communicate your idea.
Categorisation and function:
describe what group or function your word or idea belongs to.
clarify your ideas with your listener, repeat back. Don't let someone leave with the wrong message.
connect people's names with other people or ideas.
Attention is the ability to focus on something over time and retain the information for immediate or later use. To improve attention:
- Reduce background noise and distractions.
- Maintain eye contact with conversing with others.
- Rephrase what someone has said.
- Ask other people to speak more slowly.
Above all else, keep the following in mind:
Poor memory is often the result of poor concentration or trying to do too many things.
Stress, anxiety, and fatigue affect memory.
No body's mind is perfect. We all forget things.
Encouragement, patience and support from family and friends is crucial.
Melissa Kaplan notes...
Many of the techniques for remembering to do things, learning, dealing with attention deficit problems that are taught to post-traumatic brain injury survivors are also very useful when you have the neurocognitive impairment common in CFS, FM, and Lyme. Contact your local brain injury rehab centres to see if they offer any programs that you can participate in. Many insurance companies (and Medicare and Medicaid) will cover structured programs.
©1995 Mary K. Rohrer Durham RN BSN, National CFS and FM Association
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