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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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On this page: an alphabetical list of informational topics. Each includes a link to the specific passages in the Journal that address the topic.

Aides | Assisted living | Bedsores | Constipation | Daycare | Deep vein thrombosis | Delusions | Dental hygiene | Eating and drinking problems | Equipment (air mattress, commode, hospital bed, lift, shower bench, suction machine, wheelchair, wheelchair ramp) | Feeding tube | Incontinence | Living will | Medication | Mini Mental Status Exam | MRI brain scan | Neuropsychological testing | Phlegm | Physical therapy | Power of attorney | SPECT brain scan | Sundown effect | Symptoms | TIA | Ultra-sound of the arteries | Visual problem

Aides Aides are a necessity if a Lewy body patient is to be cared for outside of a nursing home. We have been successful in finding aides by word of mouth — from acquaintances who had a relative with dementia, from workers at daycare, from other aides. Aides can also be located via eldercare agencies, eldercare case management agencies, and government agencies. It's so important to find aides who are competent, reliable, and honest. See 8. Living Arrangements and Daycare and 9. We Need Aides.

Assisted living Assisted living facilities may be an option for a person with Lewy body disease for a while, but as the disease progresses, it becomes infeasible. Most facilities are profit-oriented, so they may not make this point clear. Some have an adjoining nursing home or Alzheimer's ward. It should be noted, however, that an Alzheimer's ward may not be appropriate for someone with Lewy body disease. Alzheimer's patients remain mobile for a long time, whereas people with Lewy body disease typically don't. Therefore, an Alzheimer's ward may not be prepared to give the Lewy body patient the necessary care. See 8. Living Arrangements.

Bedsores As a result of inactivity, bedsores can be a problem. The aides tend to them carefully and sometimes use a prescription item such as DuoDerm, a material impregnated with medicine. Finally, we got an air mattress for the bed. See 14. Slow Decline Continues, 18. Update, April 2003, and 19. Update, August 2003. With good care, the bedsores healed (20. Update, May 2004), but have to be monitored continually (21. Update, May 2005).

Constipation This has been a problem, presumably due to inactivity. At first, stool softeners, Metamucil, senna, and prune juice sufficed. Later, periodic enemas became necessary. See 14. Slow Decline Continues. The constipation problem was largely resolved after we discovered Fruit-Eze (20. Update, May 2004).

Daycare There are many programs nowadays for people with dementia. These programs provide activities for the attendees and give their caregivers at home a respite. It didn't work out for Mother, but it seems like a reasonable thing to look into. See 8. Living Arrangements and Daycare.

Deep vein thrombosis As a result of prolonged inactivity, Mother developed deep vein thrombosis (a blood clot) in her leg. This condition led to a swollen leg and a one-week stay in the hospital, during which a blood thinner was given intravenously. See 14. Slow Decline Continues.

Delusions In addition to hallucinations, Lewy body patients may have delusions. In Mother's case, hallucinations were mild, but her delusions were intense. See 7. Dr. Jekyll and Mrs. Hyde.

Dental hygiene The aides we had didn't always do a good job of cleaning Mother's teeth, which is admittedly a hard job. An electric toothbrush helped a lot, as did some pointers from a dental hygienist. See 13. Hygiene and Dental Care. Later, additional problems arose (19. Update, August 2003).

Eating and drinking problems An early problem was handling utensils, but Mother could still pick up some foods by hand. Later, as her arm motions became restricted, it was difficult for her to lift her hands to her mouth. As the disease progressed, her food needed to be cut into small pieces. See 14. Slow Decline Continues, 15. Living Will, and 17. Future Concerns. Later (21. Update, May 2005), Mother would sometimes gag when drinking. To alleviate this problem, her liquids had to be thickened with a cornstarch product, such as Thick-It or Thicken-Up.

Equipment We were fortunate to have a physical therapist who advised us about what equipment to get and what was covered by Medicare. Our equipment came from a medical supply company, and Medicare pays the company the monthly rental fees. After renting for a while, the company gave us the option to take possession of the equipment. (Essentially, the Medicare payments had fully reimbursed the company for the cost of the equipment, most of which was used to begin with.) We chose not to do so. By renting, the company is responsible for replacing or repairing anything should it break, something that has happened. We found that the brakes of the wheelchair need to be adjusted periodically and the hospital bed has had a problem on occasion. (Note that many local ambulance corps have wheelchairs, canes, and walkers that they will lend to people in the community for extended periods of time.)

Feeding tube Two doctors (both internists) have mentioned that Mother might need a feeding tube (see 15. Living Will and 19. Update, August 2003). Mother's living will explicitly cites the feeding tube as an example of care she doesn't want. Several studies have shown that feeding tubes neither extend the life of people with dementia nor make them more comfortable, which is why the Alzheimer's Association recommends not using feeding tubes (694K PDF document). (See also this informative article.)

Incontinence Early in the disease, Mother began to go to the bathroom very frequently, possibly as a precaution to avoid an accident. Later, she lost control of her bladder, then of her stool. See 14. Slow Decline Continues.

Living will A legal document that spells out your wishes regarding your medical care should you not be able to express them yourself. The living will also lets you designate a healthcare representative, who will make decisions in your stead. See 15. Living Will, 19. Update, August 2003, and 21. Update, May 2005.

Medication See What LBD Is. There is no cure for Lewy body disease. Right now, doctors prescribe drugs to treat four major features found in Lewy body disease. Many of the medications are the same that Alzheimer's and Parkinson's patients take:

Here are some other medications Mother has taken:

Mini Mental Status Exam This is a short assessment of cognitive ability (memory, thinking, language, etc.) often given by a neurologist. The exam asks the patient to answer a series of questions (e.g., "Where are we?" "Who is the president?") and perform a set of tasks (e.g., "Count backward from 100 by sevens," "Remember these three words"). See 2. First Hints of Trouble and 4. Back to the Neurologist.

MRI brain scan Magnetic resonance imaging of the brain is usually done as part of a full neurological work-up. See 2. First Hints of Trouble and 6. Columbia Presbyterian Hospital.

Neuropsychological testing Like the Mini Mental Status Exam, this is an assessment of cognitive ability, but it is much more thorough. It is given by a neuropsychologist (a psychologist with special training in testing neurological patients) and can take several hours. See 6. Columbia Presbyterian Hospital.

Phlegm Phlegm started to be a problem, as Mother became too weak to cough it up. Cough medicine helped to break it up, and the aides physically extracted some also. See 20. Update, May 2004. Later on, we needed to rent a suction machine to remove the phlegm from Mother's mouth and throat (21. Update, May 2005).

Physical therapy Physical therapy seems to be a good choice for people in the early stages of Lewy body disease. The therapist we had was extremely helpful in getting us set up with the proper equipment for the home. Later on, the therapist said she couldn't help Mother with her motor problems. See 10. Things Get a Bit Worse.

Power of attorney A legal document that allows us to manage Mother's financial affairs without getting the authorization of a court. Mother had the foresight to complete this document well before she became ill. See 15. Living Will.

SPECT brain scan A single-photon emission computerized tomography scan of the brain looks at the blood flow in the brain. See 6. Columbia Presbyterian Hospital.

Sundown effect This is a tendency for symptoms to worsen in the late afternoon and evening. See 7. Dr. Jekyll and Mrs. Hyde.

Symptoms of Lewy body disease See What LBD Is.

TIA A transient ischemic attack is a temporary problem that indicates a neurological problem; essentially, it's a "mini-stroke." It can manifest itself in a variety of ways (e.g., double or blurred vision, dizziness, loss of consciousness, weakness in a limb, slurred speech). In Mother's case, she temporarily lost the ability to read. See 2. First Hints of Trouble.

Ultra-sound of the arteries An ultra-sound of the arteries in the neck can help doctors determine whether there is a problem with blood flow to the brain. See 2. First Hints of Trouble.

Visual problem Mother developed a visual problem that affected her ability to see things to her left. We don't know how common this is. See 10. Things Get a Bit Worse.

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