Category Archives: Living with a Neurological Condition

“Avoid confusion in the hospital – Ten tips”

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A Yale Medical School publication lists ten tips to avoid confusion in the hospital.  These tips certainly apply to those with dementia as well as the elderly, and this is probably helpful for anyone (neurodegenerated or not!) in the hospital.

Robin
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elderlife.med.yale.edu/public/prevention.php

Avoid Confusion in the Hospital – Ten Tips

Do you have an elderly relative in the hospital?

By taking these ten steps, you may be able to reduce the risk of delirium:

1. Bring to the hospital a complete list of all medications (with their dosages), as well as over-the-counter medicines. It may help to bring the medication bottles as well.

2. Prepare a “medical information sheet” listing all allergies, names and phone numbers of physicians, the name of the patient’s usual pharmacy and all known medical conditions. Also, be sure all pertinent medical records have been forwarded to the doctors who will be caring for the patient.

3. Bring glasses, hearing aids (with fresh batteries), and dentures to the hospital. Older persons do better if they can see, hear and eat.

4. Bring in a few familiar objects from home. Things such as family photos, a favorite comforter or blanket for the bed, rosary beads, a beloved book and relaxation tapes can be quite comforting.

5. Help orient the patient throughout the day. Speak in a calm, reassuring tone of voice and tell the patient where he is and why he is there.

6. When giving instructions, state one fact or simple task at a time. Do not overwhelm or over stimulate the patient.

7. Massage can be soothing for some patients.

8. Stay with the hospitalized patient as much as possible. During an acute episode of delirium, relatives should try to arrange shifts so someone can be present around the clock.

9. If you detect new signs that could indicate delirium — confusion, memory problems, personality changes — it is important to discuss these with the nurses or physicians as soon as you can. Family members are often the first to notice subtle changes.

10. Find out more about delirium. The American Psychiatric Association’s “Patient and Family Guide to Understanding and Identifying Delirium” is available on line.
[Robin’s note:  the link to this APA document doesn’t work and a search of that website revealed nothing by this name.]

Adapted from onlinehealth.com, May 02, 2000

“Doctor is touched by…woman’s devotion” to her husband with locked-in syndrome

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Many of us in the PSP and CBD communities feel as though our family members are “locked in.”  This is a sweet article in the LA Times by a physician who was touched by a woman’s devotion in caring for her husband with locked-in syndrome.

Robin

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articles.latimes.com/2007/dec/17/health/he-practice17

IN PRACTICE
In watching a wife tenderly care for her husband, who can blink but can’t move, a doctor is touched by the woman’s devotion.
By Steve Dudley, Special to The Times
December 17, 2007

In a corner of a room he shares with three other residents at the nursing home, a patient with a curious illness stares out the window at an empty bird-feeder.

He holds his arms in a curious, characteristic way — elbows and wrists hyperflexed so that his hands are tucked under his chin, like a child in prayer.

Mr. Fletcher has been bedridden for years. He can’t talk, can only moan. He can’t move other than to blink or shift his gaze. The only sign of responsiveness is that his eyes will sometimes follow stimuli, either of voice or hand movement.

Although he cannot move, his sensations are still intact. This means that Mr. Fletcher can still feel pain like you or I, or have that annoying itch that he cannot scratch. And people like Mr. Fletcher have their reasoning fully intact. They can think, dream, hope and reflect upon their endless prison.

Mr. Fletcher has what is commonly referred to as “locked-in syndrome” — the result, occasionally, of a rare form of stroke, happening viciously and suddenly, often striking down people in the prime of life after head trauma.

In Mr. Fletcher’s case, it happened more slowly. He has supranuclear palsy, a degenerative condition of the central nervous system that usually afflicts the very elderly, although Mr. Fletcher is only in his early 60s. It’s a cousin of Parkinson’s and Alzheimer’s diseases, an insidious condition with symptoms that might start as mild gait abnormalities or difficulty with eye movements and gradually develop over years.

Nobody knows what causes it, and treatments are essentially palliative: You really can’t do a thing for those who suffer from it other than to keep them comfortable.

Mr. Fletcher has been admitted for some rehabilitation as he transitions from the hospital, after a partial bowel obstruction, back to his home. A team of therapists, nurses and aides and, most importantly, his wife, is here to care for him. I suspect that his wife, the one with the least formal training, understands him best.

I’d like to tell you about her.

I am visiting another patient in Mr. Fletcher’s room when Mrs. Fletcher arrives and proceeds to wash him with a moistened towel.

Carefully and tenderly, she alternates between wiping and drying, turning him first one way, then another. Patiently, meticulously and ever so gently, she bathes him.

After she finishes with the bathing, she rubs her husband down with lotion, massaging it into his skin until it is supple. Then the shaving begins. She lathers his face and, with smooth, efficient strokes, manages to remove a three-day growth of stubble. You can see his eyes sparkle as she winds up her ministrations.

I try not to stare. It seems intrusive, to watch them together, intimate, in an interaction almost as private as making love.

She is caring for this man for all she is worth. Being with him, cleaning him, giving of herself to him and receiving at the most a blink or grunt in return.

Now that’s love. That’s commitment. In a time when people get divorced for the most superficial of reasons, it is a tremendous encouragement to see true love in action.

Mr. Fletcher is a handsome black man with beautiful ebony skin. His wife is Vietnamese. I imagine they met during the Vietnam War when he was a dashing GI and she was a scared young woman whose homeland was being split in two.

As I watch her bathe him, I reflect on what their early years together might have been like. Running on the beach, staying out till dawn, picnics, favorite restaurants and lots of dancing — they look like a couple who used to dance a lot.

I read of a young guy over in France, barely in his 40s, who became locked-in after a stroke. He had been a magazine editor. With the patience of Job, he dictated a book by blinking to a scrivener.

He referred to himself as feeling like a captive in a diving bell. One can only imagine the terror and loneliness of being in this state. You’re completely dependent upon others for all your needs, though you cannot voice any of them. Too warm? Too cold? Too bad.

And the people who are there to help often treat you as someone who cannot understand, as if you’re in a coma.

I’ve seen only one other patient who was locked-in, and that was back in medical school. We were on “physical diagnosis” rounds. That’s where a group of sleepy-eyed doctors in training dutifully follow their chief resident all over the hospital looking for interesting cases.

We popped into this guy’s room. I can’t remember his name. For that matter, I don’t know if we were ever told. He was just the interesting case on the eighth floor. As we lined the bed, we were grilled by a supervising resident about the case before us. This drill, known as “pimping,” is endorsed as a useful, hands-on, didactic exercise — and it may serve its purpose, but more commonly it devolves into brash showmanship at best and downright intellectual bullying at worst.

And we were pimped about the poor gentleman who was locked-in. He just lay there, hearing every word we spoke about him.

Not once did anyone address him directly or acknowledge that he was a person of any real worth. He was simply an exercise in learning, a specimen.

As I watch Mrs. Fletcher, I reflect on that experience. I am struck by the contrast between a devoted wife and a group of doctors-in-training making their cursory visit before moving on to the next interesting case.

She is so kind to him, devoted, caring. I suppose that is what the marriage vows mean when they speak of “in sickness and in health.” Here is tangible evidence of someone being faithful to that promise. I’m sure it is way more than she bargained for, but she dispatches her duties willingly, without resentment.

When you’re young, you take your health for granted. Slowly, it is taken away from even the strongest of us. That day, Mrs. Fletcher taught me volumes about the timelessness of love and the gift of health.

Steve Dudley is a family physician in Seattle.

 

 

Importance of PT + Exercise in Neurodegenerative Disorders

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This article was published in the latest issue (Fall ’07) of the Parkinson’s Disease Foundation newsletter. Here’s a link to the article and the full text:

http://www.pdf.org/Publications/newslet … id=3030787 –> this article

http://www.pdf.org/Publications/newsletters/fall07/ –> Fall ’07 newsletter

Current Research Highlights Importance of Physical Therapy and Exercise For People with PD
By Mark A. Hirsch, Ph.D. and
David A. Lehman, Ph.D., P.T.

From the Fall 2007 issue of PDF News & Review
Published by the Parkinson’s Disease Foundation

The traditional view of how to treat people with neurodegenerative conditions is that exercise has little or no effect, or that it can actually worsen the disease! However, recent research in both humans and animal models suggests that physical therapy — including gait and balance training with external cues to improve walking, resistance training for the lower extremity muscles, balance training, and regular exercise — can be an important component of an exercise program that may help improve or hold the signs and symptoms of Parkinson’s disease (PD) at bay.

Gait and balance

Gait and balance impairments are cardinal symptoms of PD. If left untreated, impairment in walking or balance can lead to falls, fractures, hospitalization and loss of independence. In fact, roughly 40 percent of nursing home admissions are preceded by a fall, and falls occur more frequently in people with Parkinson’s than they do among other individuals.

Recently, a large number of studies have focused on improving gait in people with Parkinson’s disease through a training exercise known as “cueing.” People with PD sometimes have difficulty generating internal cues to take a step. They may “freeze” while standing or walking, which in turn can cause falls and injuries. External cues, such as providing a cane to trigger a stepping movement, placing horizontal lines on the floor, giving instructional cues (such as asking the person to “take long steps”) or walking to a rhythmic metronome, can all improve a person’s stride length and walking velocity, and reduce shuffling and freezing.

It is encouraging that many of these studies were carried out in the home environments of the study participants. This means that individuals who do not have direct access to a rehabilitation center or wellness facility can benefit from training that is provided in the home.

In one such study conducted by physical therapists in England, Belgium and Holland — the largest study on gait training to date — cueing training was used to improve walking in participants’ home environments. The study included 153 people who received a three-week home cueing program, followed by three weeks during which no training was done. The results, though modest, showed measurable improvements in gait and balance, as well as reduced freezing and greater confidence to carry out functional activities. However, after the training ended, the improvements were gradually lost, reminding us that it is important to continue exercising if those improvements are to be long lasting.

Improving strength

Studies have generally shown that exercise improves speech and swallowing, posture, tremor, dexterity, cognition and depression. Other studies have shown that treadmill training, and lower extremity resistance and balance training, can be effective at improving muscle strength, gait and balance.

There has been considerable interest recently in therapies designed to increase muscle mass, known as “muscle hypertrophy.” Several studies have shown that individuals who improved the size of their muscles also demonstrated improvements in functional activities such as climbing or descending stairs or balancing. Muscles shrink when they are not used; conversely, muscle tissue increases in girth with intense resistance training. As we age, we often become more sedentary and muscle loss becomes inevitable ­ underscoring the need for exercise.

During the 1970s and 1980s studies showed that aging triggers a gradual and inevitable decline in function, and therefore it was believed that older adults could not improve strength or muscle girth with training. Many studies had shown that while aerobic fitness in older adults could be improved with training, muscle strength could not. Later examination showed that these early studies included biases about older adults and aging that affected the study design, and therefore the conclusions. Most of the earlier studies, it turned out, had used a very low intensity of training (e.g., rubber bands or very light weights) because the researchers feared that heavier weights would cause injuries among their older study participants. Since the participants did not improve in muscle strength it was concluded, wrongly, that “seniors” could not improve strength.

In the late 1980s, studies began to show that older adults — many already in their 80s and 90s, and some of them in nursing homes — could improve strength, muscle bulk and function in response to high-intensity resistance training. Despite this new evidence — and because some researchers and therapists believed that resistance training might itself increase muscle stiffness — strengthening was not advised for people with PD out of fear that it might be harmful.

More recent studies have further challenged this view. Results of one study of people with mid-stage Parkinson’s suggest that high-intensity resistance training results in a six percent increase in muscle volume, 17 percent improvement on how far participants could walk in six minutes, and a 22 percent and 13 percent improvement in stair descent and ascent time. In another study, high-intensity resistance training for the lower extremity muscles was found to improve balance and to reduce the occurrence of falls.

While resistance training does pose risks that other types of training do not (e.g., risk of hernias and other musculoskeletal injuries), the risks of not participating in such a program and remaining sedentary are not insignificant.

Animal studies on exercise and the PD brain

In addition to helping with movement, researchers now believe that exercise may influence the progression of Parkinson’s disease. While the mechanism for these effects in Parkinson’s are poorly understood, researchers and therapists are coming to believe that when a person with PD engages in a novel activity such as beginning an exercise program — especially when there are opportunities to interact socially — changes in the structure and function of the brain may result. Most of this research is based on animal models of Parkinson’s but some of the findings may apply to humans. Recent studies of PD with rat models suggest that intense sensory motor training triggers the creation of nerve connections (synaptogenesis) and new nerve cells (neurogenesis). Apparently it is never too late for the brain to change its structure and function in response to stimulating environments.

The timing of training in relation to a Parkinson’s diagnosis may also be relevant. In a recent series of studies, rats were forced to rely on an impaired forelimb during exercise, while their less impaired forelimb was restricted from movement by a cast. In these studies, animals forced to exercise immediately after the PD lesion demonstrated greater retention of the nerve cells that produce dopamine and less severe symptoms down the road. Rats that began the exercise program later (three to seven days after the PD lesion) fared far worse. They had more pronounced Parkinson’s symptoms and showed greater PD-related damage in the brain. In other words, the earlier the training is begun after a diagnosis, the better.

In another animal study, it was shown that exercise (represented by rats running on a wheel) increased the number of new dopamine-producing neurons as compared to rats that did not exercise. In these animal models of Parkinson’s, exercise seems to have a neuroprotective effect on the brain. Studies showing the effect of exercise and physical therapy on the human PD brain structure and function are forthcoming.

What does this mean for people with PD?

If the animal studies are found to hold up in humans, it would appear that early referral to a physical therapist or exercise program may prevent or delay some disabling aspects of the disease. We will not know this for sure until more human trials have been done. What we do know is that people with Parkinson’s disease are well advised to begin or continue exercise and therapy after a diagnosis has been made.

A major problem in getting people with PD to exercise is that many medical professionals still do not understand the value of exercise. Education of patients and families could certainly improve this situation, as could the increased availability of community-based health clubs or wellness facilities that are equipped to provide services for special populations, such as people with Parkinson’s. It is important to remember to ask your physician for a referral for physical therapy, as it may be essential to obtain coverage from insurance or Medicare.

In addition, motivating older adults to exercise and to stay physically fit requires skills on the part of the practitioner that are not traditionally taught in allied healthcare programs. People with PD often require hands-on guidance during exercise in order to minimize the occurrence of injuries, to stay motivated and to continue with a program. Of course, anyone thinking of beginning an exercise program should consult with his or her physician beforehand to make sure that it is safe.

Both younger and older people with a diagnosis of Parkinson’s disease can benefit from physical and occupational therapies, or a home-based exercise program. Neither the age of the patient nor the stage of their Parkinson’s disease should be seen as limiting factors in the decision to exercise. The results of studies to date are encouraging and the message to people with Parkinson’s is clear: look for opportunities to exercise!

Dr. David Lehman is Associate Professor at Tennessee State University with an emphasis in neurorehabilitation and Parkinson’s disease. He is President-elect for the Middle Tennessee Chapter of the American Parkinson Disease Association. Dr. Mark A. Hirsch is on the faculty of the Department of Physical Medicine and Rehabilitation at Carolinas Rehabilitation in Charlotte, NC, and has worked extensively in motor therapy. He is a Board member of the Parkinson Association of the Carolina’s.

First Steps after a Dementia Diagnosis

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Hurley Elder Care Law offices are based in Atlanta. In the August 2007 issue of their publication “The Elder Issue,” they offer some guidelines for families to follow once a family member has been diagnosed with Alzheimer’s or any dementia type.

Some of the steps families should follow include:

* Organize a family meeting
* Assess your loved one’s abilities
* Learn about Alzheimer’s disease
* Find a good healthcare provider
* Make long term plans
* Create a support network
* Investigate resources for local support

Here’s a copy of the law firm’s advice. Just replace “Alzheimer’s Disease” with whatever disorder of interest to you as I think the guidelines apply to us all.

Robin

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http://www.openmoves.com/accounts/hurley/issue08_0807-online.html#parents_more

Family Caregivers’ Guide to First Steps after a Diagnosis of Alzheimer’s Disease
Hurley Elder Care Law
The Elder Issue
August 2007

Family situations vary tremendously. Sometimes all adult children and the spouse of the person with AD are in agreement as to the next steps to take, but possibilities for family disagreements are many. The cooperation of the person with AD is very important. Sometimes the person with AD is willing to stop driving, sign all of the important legal documents, and accept the care that he or she may need. But often there is resistance to making changes by the person with dementia.

There are concrete steps that family members can take to make the journey smoother. Some of the steps that you can take as a family member of the person with dementia are:

FAMILY MEETING: Arrange for a regular family meeting to discuss all of the issues related to the diagnosis. Discuss the diagnosis with everyone in the family including family members in other cities or states. Talk about what needs to be done now and in the future. Although the responsibilities of various family members will differ, everyone needs to know what is happening. It is a good idea to have one person who will speak for the family on issues related to health care and the same person or a different person who will speak for the family on financial issues. After the family decides the correct person for each responsibility, formal power of attorney forms can be signed. For example, some family members may live in the same city as the person with dementia. It would make logical sense to designate one of those family members with power of attorney for health care since they can go to the doctor’s office with the person with dementia.

FAMILY MEMBER WITH AD: Make a realistic assessment of the abilities of the person with the disease. The family members cannot rely solely on what the person says she or he can do. These actions must be observed first hand. The idea is to give the person with the disease as much as they can reasonably do for themselves, while not making unrealistic demands. Driving, making financial decisions, staying alone, and using the kitchen safely are all examples of issues that need to be examined on a regular basis. As an example, a person with dementia may think that it is still safe to drive the car alone even though she or he may have gotten lost recently.

LEARNING ABOUT AD: Learn all that you can about the disease. Read books, search the Internet, talk with other family caregivers like yourself, and talk to knowledgeable health care providers. One good place to start is the Alzheimer’s Association at www.alz.org and 1-800-272-3900. A very useful book is “The 36 Hour Day: A Family Guide for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Late Life” by Nancy Mace & Peter Rabins.

MEDICAL CARE: Find a health care provider with whom you can work. It may be the physician who diagnosed the disease, or it could be a research physician at Wesley Woods of Emory University or another research program. The person you work with should understand the progression of the disease and know the latest information on medications to treat the symptoms. It is very important that someone goes to each physician appointment with the individual suffering from Alzheimer’s disease in order to better understand the disease and the treatment. This is actually true for most people since they cannot remember everything that the doctor told them five minutes later, regardless of whether they have memory impairment or not.

LIFE CARE PLANNING. Make certain that the necessary legal and financial plans are in place. The most important thing that people should consider is how to find, get and pay for good long term care. This includes the need for an evaluation of the assets available, who needs to have access to those assets and what are the alternative means of financing long term care. From the legal document perspective, a review of or putting into place a Durable Power of Attorney, Health Care Power of Attorney and a Will and/or Trust is very important while the individual still has sufficient capacity to make such decisions.

EMOTIONAL SUPPORT: Set up a support system for yourself. Who in your family or among your circle of friends would be the most supportive of you and your family? Work with them in finding the help you need. You may just need to have someone listen to you and provide some relief from care giving. You may want to join a support group sponsored by the Alzheimer’s Association to work through the feelings that you have and to get ideas about how to best care for your family member with AD. Remember that if you burn out as a caregiver, you are no good to anyone, including yourself.

SAFE RETURN: At a minimum, register the person with Alzheimer’s disease in Safe Return. This is a program of the Alzheimer’s Association that consists of a national registry and an identification bracelet. The cost for Safe Return is $40.00 for the first year and $20 for each year your relative is in the program. With changing technology, there are more and more options available for people to locate a lost or wandering loved one.

RESOURCES TO HELP: Find out about services available in Georgia to assist a person with Alzheimer’s disease. Develop a list of places to contact including adult day, home care agencies, and long term care facilities. Know the services available in your community so you can access these organizations and services as you need them.

CAREGIVER SUPPORT: Take care of yourself. You need to think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops or progresses quickly. Learn to recognize your stress risks and find ways to relieve them. Accept help. Your life and the life of the person with the disease depend upon you caring for yourself.

DIFFICULT SITUATIONS: Difficult situations can easily develop related to family members with Alzheimer’s disease. One example is when the spouse or adult children will not take the keys away from the person with AD, nor will they admit that there are safety issues involved because they themselves are in denial. People in certain stages of the disease cannot make rational decisions. Remember that and take action to protect not only your family member, but the public at large. Another frequently occurring situation happens when one spouse has Alzheimer’s disease and the other spouse has physical health problems. In this circumstance, the husband and wife need different kinds of care and may not be able to stay in their home indefinitely. It pays to be prepared for this eventuality.

HELPING CHILDREN AND TEENS. If you are an adult daughter or son caring for a parent with Alzheimer’s disease, it is likely that you have young children or teenagers still living in the home. Children often experience a wide range of emotions when a parent or grandparent has AD. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” It is important to find out what the emotional needs of your children are and try to meet them.

The diagnosis of Alzheimer’s disease or any related dementia can be very threatening news, but when a spouse and/or adult children are willing to deal with the illness in a systematic manner, family conflicts can be minimized and the quality of life of the person with the disease can be maximized. The most important thing to do is to take action and take action quickly. The sooner that action is taken, the more options there are available.

Purchasing a clock

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Here’s an interesting blog post from my caregiver friend Eric, whose father-in-law has dementia, about reading time versus telling time:

pragmaticcaregiver.blogspot.com/2007/05/does-anybody-really-know-what-time-it.html

Eric offers a few guidelines about clocks for those with cognitive impairments:

1-  When selecting an analog clock, look for a clear, high contrast face.

2- Simple block numbers with distinct minute and hour hands.

3- No Roman numerals and no stylized designs that omit numbers.

4- For digital clocks, be wary of displays that present too much.

Robin