Delirium (from Hospitalization or Illness) + Memory Loss

This press release out of Beth Israel Deaconess Medical Center in Boston will be of interest to those dealing with dementia. The press release reports on a study that “confirms that an episode of delirium rapidly accelerates cognitive decline and memory loss in Alzheimer’s patients.” “Delirium often develops in elderly patients during hospitalization or serious illness, and this acute state of confusion and agitation has long been suspected of having ties to Alzheimer’s disease and other dementias.”

http://www.bidmc.org/News/InResearch/20 … entia.aspx

Delirium Accelerates Memory Loss in Patients With Alzheimer’s Disease
Acute state of confusion and disorientation often complicates hospitalizations for patients with dementia

Date: 5/4/2009
Beth Israel Deaconess Medical Center, Boston, MA
Press Release

BOSTON – Delirium often develops in elderly patients during hospitalization or serious illness, and this acute state of confusion and agitation has long been suspected of having ties to Alzheimer’s disease and other dementias. Now a study led by researchers at Beth Israel Deaconess Medical Center (BIDMC) and Hebrew Senior Life confirms that an episode of delirium rapidly accelerates cognitive decline and memory loss in Alzheimer’s patients. The findings are reported in the May 5 issue of the journal Neurology.

“The cognitive rate of decline was found to be three times more rapid among those Alzheimer’s patients who had had an episode of delirium than among those who did not have such a setback,” according to lead author Tamara Fong, MD, a staff neurologist at BIDMC and Assistant Scientist at the Institute for Aging Research, Hebrew Senior Life. “In other words, the amount of decline you might expect to see in an Alzheimer’s patient over the course of 18 months would be accelerated to 12 months following an episode of delirium.”

Alzheimer’s disease is an irreversible, progressive form of dementia that gradually destroys a person’s ability to carry out even the simplest of tasks, and affects as many as 4.5 million individuals in the U.S. according to figures from the National Institute on Aging. There is currently no cure for Alzheimer’s disease.

Delirium, on the other hand, is a potentially preventable condition, which often develops following a medical disturbance, surgery or infection and is estimated to affect between 14 percent and 56 percent of all hospitalized elderly patients.

The investigators performed a secondary analysis of data gathered from 408 patients examined between 1991 and 2006 at the Massachusetts Alzheimer’s Disease Research Center (MADRC). Over this 15-year period, MADRC staff conducted a number of memory tests on patients. Testing was done on at least three occasions, separated by intervals of approximately six months. Seventy-two of the participants developed delirium during the course of the study.

In their final analysis, the authors found that among patients who developed delirium, the average decline on cognitive tests was 2.5 points per year at the beginning of the study; following an episode of delirium, decline nearly doubled to 4.9 points per year.

“Although each dementia patient declines at his or her own individual rate, the results of our study tell us that this rate can increase three-fold following an episode of delirium,” says Fong. “As an example, suppose an Alzheimer’s patient begins with mild symptoms, such as forgetting appointments or details of conversations, but over a period of the next 18 months, loses the ability to identify relatives, becomes lost while driving familiar routes, or can no longer balance a checkbook or manage financial transactions. This same patient, were he or she to experience an episode of delirium, might experience this same rate of decline in only 12 months.”

While further investigations are needed to determine the mechanism behind this turn-of-events, Fong explains that delirium may, in fact, be a key link in a chain of events that results in injury to brain cells. “Older patients may be at greater risk of developing delirium – particularly in the hospital setting – because they tend to have less ‘reserve’ or ability to compensate in settings of increased stress. Consequently, infections, new medications and other stressors put the patient at risk for delirium.”

All elderly patients, but particularly patients who have already been diagnosed with Alzheimer’s disease, can benefit from a number of preventive measures if they are hospitalized, notes Fong.

“As much as possible, it’s important to try and orient the patient to his or her surroundings [i.e. frequently remind the patient that he or she is in the hospital], to allow for as much uninterrupted sleep as possible by not waking patients to take vital signs or do blood draws at night, and to get patients out of bed and walking as soon as their medical condition allows,” notes Fong. Also, important, she adds, is to avoid use of unnecessary medications.

“Twenty percent of all elderly patients who develop delirium go on to experience complications, whether it’s a prolonged hospital stay, a move to a rehabilitation center or long-term care facility, or even death,” notes Fong. “Our current study now shows that delirium can also adversely impact the state of cognitive decline in patients with Alzheimer’s disease. Because up to 40 percent of delirium episodes can be prevented, taking steps to avoid delirium could result in significant improvements.”

This study was funded, in part, by grants from the Massachusetts Alzheimer’s Disease Research Center, the National Institute on Aging, and the Alzheimer’s Association, and the VA Rehabilitation Career Development Award.

Study coauthors include BIDMC investigators Edward Marcantonio and Sharon Inouye; Hebrew Senior Life investigators Richard Jones, Peilin Shi, James Rudolph, Frances Yang and Douglas Kiely; and Liang Yap of Massachusetts General Hospital.

Beth Israel Deaconess Medical Center is a patient care, teaching and research affiliate of Harvard Medical School and consistently ranks in the top four in National Institutes of Health funding among independent hospitals nationwide. BIDMC is a clinical partner of the Joslin Diabetes Center and a research partner of the Dana-Farber/Harvard Cancer Center. BIDMC is the official hospital of the Boston Red Sox. For more information, visit www.bidmc.org.


 

There’s a 5-minute NPR story today on delirium. Apparently 2 million seniors a year (or about one-third) who go into the hospital are affected by delirium. Here’s an enlightening excerpt:

“My father wound up getting delirious even when I was there at his bedside,” [Dr. Sharon Inouye, a geriatrician] says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Inouye attributes it to hospital care that has become complex and fragmented.

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Here’s the link and most of the story (the introduction isn’t available in text form):

http://www.npr.org/templates/story/stor … =111623212

Treating Delirium: An Often Missed Diagnosis
by Joseph Shapiro
August 10, 2009
NPR Morning Edition

Virginia Helton says her husband is a “brilliant” man. He’s a scientist who can explain complex chemistry and physics. But when he was in the hospital last February, she didn’t recognize the man acting so bizarrely — talking wild nonsense and taking off his clothes.

Earle Helton, 79, was diagnosed with delirium, a sudden and frightening onset of confusion. A common but often unrecognized problem in hospitalized elderly people, delirium is estimated to affect more than 2 million seniors a year.

“I was feeling very scared,” his wife says. “It was very disturbing to see him in all this confusion with disordered speech.”

“I remember quite vividly my desire to escape, and [I] was proposing all sorts of fantastic schemes, according to the kids, as to how I could get out and get out of the hospital,” Earle Helton says. “As a matter of fact, I ended up executing that on at least one occasion and managed to get through the hospital and underneath one of the surgical beds.”

Virginia Helton says staff at the hospital “tied his hands down because he kept trying to get out of the bed, and that made him furious. And they did that several times when he was in this state of delirium.”

Dr. Sharon Inouye was working at the Boston hospital where Helton was a patient. She recognized he was on an anti-seizure medication that could cause confusion. She stopped the medicine, but it took a few days for the drug to clear his system and the delirium to stop.

Inouye, a geriatrician at Harvard Medical School and Hebrew Senior Life, says it’s easy for doctors to miss delirium. Most of the time, a person with delirium is inattentive and may have trouble following a conversation. Sometimes, the symptoms are more obvious.

“What we look for is a person who is having a lot of difficulty answering questions,” Inouye says. “They often will not make sense. They may hallucinate. They may be very agitated. They may have a totally different personality. You know, very often family members will say to me: ‘He’s nothing like that at home.’ ”

Inouye saw delirium in her own father, who was also a physician.

“My father wound up getting delirious even when I was there at his bedside,” she says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Inouye attributes it to hospital care that has become complex and fragmented.

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Still, there are precautions a patient’s family can take. Family members can start by becoming more aware of the drugs that cause delirium, says geriatrician Malaz Boustani at Indiana University School of Medicine.

One class of medications that can be a big trigger is anti-cholinergic medications or common prescription and over-the-counter drugs such as some sleeping pills, asthma medications and antidepressants.

It’s also important for older patients in the hospital to keep using their eyeglasses and hearing aids and be allowed to sleep through the night, says Boustani. Delirium can be triggered by a state of confusion, and these things help maintain a more consistent environment.

Boustani recently studied 1,000 senior citizens who came to an Indianapolis hospital. One-third developed delirium. And those who spent more time in the hospital had a higher risk of going to a nursing home or of dying.

Doctors often dismiss delirium, Boustani says, because they think it’s just dementia in older people. The two are different. Delirium is a temporary form of cognitive impairment, whereas dementia is a more long-term problem that involves issues with at least two brain functions, such as memory loss along with impaired judgment or language.

Still, there’s a link between dementia and delirium.

“What we found [is] that if you develop delirium in the hospital and we follow you up to five years, the odds of developing dementia or Alzheimer’s disease is five times more,” Boustani says. “And the question is: Is it the delirium itself that caused toxic insult to the brain and then triggers spiral evolution to develop dementia? Or was the delirium simply a positive stress test for dementia?”

Boustani suspects that an episode of delirium shows dementia that already exists or is developing. But other researchers suspect that getting delirium in the hospital can cause long-term dementia.

That’s one more reason why it’s important for researchers, doctors and patients to better understand delirium that occurs in the hospital — and how to avoid it. Boustani says studying delirium appeals to him because it’s one condition in the elderly that can be reversed, not to mention something he just might encounter in the future.

“It’s a fulfilling feeling as a doctor,” Boustani says. “At the same time, I want to live as long as possible.”

He says that if he lives that good, long life, the chances are that he’ll be an elderly man in a hospital one day. “I want to be proactive and make sure the system is ready for me.”

“Treating an Illness Is One Thing. What About a Patient With Many?”

This is a good article in a recent New York Times (nytimes.com) about patients with many illnesses, not just one.  A key problem is that these patients end up on many medications.  Here’s an excerpt:

“Doctors know that it’s not right for someone to be on 15, 18, 20 medications,” said Dr. Tinetti, the Yale geriatrician. “But they’re being told that that’s what’s necessary in order to treat each of the diseases that the patients in front of them have.”

Here’s a link to the full article:

http://www.nytimes.com/2009/03/31/health/31sick.html

Treating an Illness Is One Thing. What About a Patient With Many?
Brendan Smialowski
The New York Times
March 30, 2009

Thanks to online friend Joe Blanc for making me aware of this article.

Robin

 

 

POLST, DNR, Advance Health Care Directive, etc.

A few of us braved the rain Sunday night to attend the support group meeting.  I thought I would pass on one of the short discussions some of us had, and give you some related links to forms and info available online.

Cheri said that several people told her she could get a DNR (do not resuscitate) form from her doctor.  Well, she asked two doctors and neither had such a form.  She said that she had been advised to get such a form for her husband and sign it because if you don’t have such a form emergency medical personnel can go down a path the patient and family don’t want to go down.  However, Cheri pointed out that even if you have a signed DNR, the healthcare POA (power of attorney) can always say “we want resuscitation efforts to be made.”  Having a signed DNR gives the healthcare POA some flexibility.  Not having a signed DNR puts all the responsibility on the POA and gives him/her no flexibility. (I hope I’ve adequately described the point.)

Ted and I talked about our preference for the POLST form to a simple DNR form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  It is signed by an MD, and serves as an MD’s instructions for what sorts of treatment anyone has determined he/she wants to have.  Paramedics, RNs, and MDs will accept and take instructions from the POLST.*  The POLST goes through a few more scenarios than just the person-is-not-breathing-and-has-no-pulse scenario.  For example, it asks what level of treatment should a person have — full treatment, limited treatment, or comfort measures only.  It asks if antibiotics are to be included in comfort measures.  It asks if intubation is to be included with full treatment.  It does NOT have as many scenarios, however, as “Five Wishes.”  And, in contrast with “Five Wishes,” the POLST is signed by an MD so these are “doctors’ orders.”

You can find general info on POLST at polst.org; this is a national effort that started at Oregon Health & Science University.  The POLST has recently become usable in California. State-licensed facilities are now being required to have a POLST form on all residents.  [Editor’s note:  you can now find California’s form at capolst.org.]

The POLST is a great form of anyone with a neurodegenerative condition or terminal illness to have completed and signed by his/her MD.

For the non-neurodegenerated, there’s the Advance Health Care Directive.  In our state, the California Medical Association has an Advance Health Care Directive Kit.  The cost is $5.  I have a few more free copies left; let me know at the next support group meeting if you want to get a copy from me.

This question-and-answer from the California Medical Association website may be of interest:

#18 Q:  I have reached a point in my life that I don’t want the paramedics to give me CPR. Will this Advance Health Care Directive keep this from happening?

#18 A:  If the paramedics are made aware of your Advance Health Care Directive before they start resuscitative efforts, and the Advance Health Care Directive clearly instructs them not to start these efforts, your wishes should be respected. You may also want to complete the “Prehospital Do Not Resuscitate (DNR)” form and obtain a “Do Not Resuscitate– EMS” medallion approved by California’s Emergency Medical Services Authority. You may order copies of the DNR form (which includes instructions on ordering the medallion) from CMA publications.

If someone signs a DNR form, it means that they do not want CPR used.  The DNR form for use in California can be ordered from the California Medical Association.  The cost is $2.  The CMA has a two-page brochure on the effectiveness and risks of CPR.

As for the Five Wishes document….  As far back as 2005, one of our founding group members, Storme, discusses it at most support group meetings she attends.  She has completed the form herself, and worked with her mother to complete the form.  Hearing Storme, many other group members have completed the form, including me. More recently, I heard Dr. Melanie Brandabur, a neurologist at The Parkinson’s Institute in Sunnyvale, recommend it.

Five Wishes is useful to fill out, and review with your healthcare POA.  This presents many scenarios, describing in detail things you may and may not want.  It addresses your medical, personal, emotional and spiritual wishes.  It is an invaluable resource for your healthcare POA, if you are unable to communicate your wishes.  The cost is $5.

Beneath my name, I’ve provided all the links you’ll need.  Here’s where you can get general info, find the POLST form for CA, learn about Five Wishes, order the CMA AHCD Kit, order the DNR form, and all the stuff described above.

Happy planning!
Robin

* Paramedics and RNs cannot take instructions based on a Living Will and they may not take instructions from any other Advance Directive you may have.  In the absence of a DNR or POLST, paramedics may be required to perform CPR if they have no MD’s orders to the contrary.

—————————

POLST:
polst.org

Patients and Families FAQ on POLST:
www.ohsu.edu/ethics/polst/patients-families/faqs.htm

POLST form for CA:
[Editor’s note:  the form is now at capolst.org]

Five Wishes from Aging with Dignity:  (cost is $5)
www.fivewishes.org/

Info on the CMA Advance Health Care Directive Kit:
www.cmanet.org/publicdoc.cfm?docid=7&parentid=4

View a “Sample” Copy of the CMA AHCD Kit:  (unfortunately you can’t print a usable copy)
www.cmanet.org/upload/AdvDir2003Finalwatermarked.pdf

Order the CMA AHCD Kit:  (cost is $5)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=154

Order the Pre-Hospital Do Not Resuscitate (DNR) form:  (cost is $2)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=59

View the CMA’s brochure on CPR:
www.cmanet.org/upload/cma_cpr_brochure.pdf

Family Caregiver Alliance Fact Sheet on end-of-life decision making:
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401

“Tools for Meal Time” – good article on dysphagia

The Fall 2008 CurePSP Magazine (psp.org) has a good article on swallowing problems that may be of interest to everyone — not just those dealing with PSP (progressive supranuclear palsy).

I’ve copied the full text below.  At some point, the newsletter will be available on psp.org; I received it in the mail this week.  You can sign up online at psp.org to receive a copy of future newsletters in the mail.

Robin

————————————

Tools for Meal Time
Laura Purcell Verdun, MA, CCC
Speech-Language Pathologist
Otolaryngology Associates, PC
Fairfax, VA

CurePSP Magazine
Fall 2008 Issue

Difficulty swallowing, or dysphagia, is commonly associated with many neurodegenerative diseases, specifically PSP or CBD.  In fact, difficulty swallowing may be one of the early symptoms of this disorder.  Given that complications related to difficulty swallowing are one of the most common causes of mortality, attention needs to be directed towards optimizing the ease and safety of swallowing.

What changes in eating and swallowing should we look for?

There are actually fairly typical behavioral changes with eating in PSP and CBD.  These often include difficulty looking down at the plate, mouth stuffing and rapid drinking, difficulty with self-feeding because of tremor or stiffness, restricted head and neck posture, and occasional difficulty opening the mouth.  These behaviors can make it more difficult to swallow and often contribute to decompensation of the swallowing mechanism resulting in coughing and choking.  Caregivers need to look out for these behaviors, because the person with PSP or CBD often is not aware of these changes.

What are some tools that we can use to help make meal times more successful?

1.  Use a suction machine, toothette swab (a pink or green sponge on a lollipop-type stick), or mouth rinse prior to meals to clear out secretions which may interfere with ease of swallowing.

2.  A firm chair with arms to support sitting upright for proper swallowing alignment is most ideal.

3.  Keep the plate in the line of vision, by placing the plate on top of a book or something similar, or substituting reading glasses for bifocals.

4.  Try experimenting with different plates and utensils.  Plates with higher edges and bottom grips enhance independence with eating.  Downsize eating utensils to limit how much food is being put in per mouthful.

5.  Experiment with different cups and glasses.  Some are just easier to drink out of than others, depending on a handle or even the thickness and shape of the lip.  Straws are generally not preferred because it results in acceleration of the liquid into the throat before it’s ready.

6.  Use a blender or food processor.  The goal is not to eliminate foods necessarily, but consider how they could be prepared difficultly to enhance ease and safety of swallowing.  Multiple consistency items such as fruit cocktail and broth based soups generally should be avoided, so blend them.

7.  A teaspoon can be used to restrict the amount of liquid placed in the mouth for each swallow.

Though clearly not a comprehensive list, here are some specific products that may be of benefit at meal times.  Look for other products available on these web sites as well:

Flexi-Cut Cup allows for drinking without extending the head and neck backwards, 3 sizes available (800/225-2610, www.alimed.com).

Provale Cup restricts the volume of liquid allowed per swallow (800/225-2610, www.alimed.com).

Maroon Spoons have a narrow shallow bowl to restrict how much food is placed on the spoon and in the mouth, come in 2 sizes (800/897-3202, www.proedinc.com). [Robin’s note:  that’s the correct website!  You can also find these spoons at AliMed.]

Less Mess Spoon is designed with holes to keep food on the spoon, or drain away liquid from a multiple consistency food item (800/257-5376, www.theraproducts.com).

Scooper Plate with Non-Skid Base has a high curve to help scoop food onto a utensil (913/390-0247, www.bindependent.com).

Skidtrol Non-Skid Bowl is a melamine bowl with non-skid base (972/628-7600, www.maddak.com).

Are there any cookbooks that may give us some ideas regarding meal preparation for people with trouble swallowing?

Achilles E and Levin T.  The Dysphagia Cookbook.  2003.  Cumberland House Publishing.

MEALS for Easy Swallowing.  2005.  Muscular Dystrophy Association Publications.  [Robin’s note:  the correct link to this book is www.als-mda.org/publications/meals/ The full contents of this book, including the recipes, are available online.]

Weihofen D, Robbins J, Sullivan P.  Easy-to-Swallow Easy-to-Chew Cookbook.  2002.  John Wiley & Sons, Inc.

Wilson JR and Piper MA.  I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders.  2003.  Hunter House, Inc.

Woodruff S and Gilbert-Henderson L.  Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties.  2007.  Square One Publishers.

If you have any concerns regarding swallowing, be sure to discuss this further with your neurologist and speech pathologist.

 

Resources and Tips from Occupational Therapist

This post is of general interest to both caregivers and those with neurological disorders.

PPSG (Parkinson’s Patients Support Groups, ppsg.org) held its annual “Caregiver and Volunteer Appreciation Luncheon” in September 2008 in Fremont.  One of the speakers wrote a summary of her luncheon presentation — Julie Groves, an occupational therapist.  Julie runs an outfit called Therapy in Your Home, therapyinyourhome.net. Therapy in Your Home provides OT, PT, and ST services in San Mateo, Santa Clara, and Santa Cruz counties at $100-125/visit.  You can also gain access to Julie Groves, as an occupational therapist, through CareSouth Home Health (408/871-9860) if you are in Santa Clara County (and have Medicare home health benefits).

Julie’s summary of her September presentation was published in the latest edition of the PPSG Newsletter, available online.  I’ve copied the text below.

I especially liked this comment:  “Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding.”

And the Resources section is terrific.

I’ve copied the summary below.

Robin

—————————-

www.ppsg.org/PPSG_2/Docs/December%202008.pdf  (the summary starts on page 3)

Volunteers Appreciation Luncheon: OT says “Thank You!”
A Speech Summary from Julie Groves, OT
PPSG Newsletter
November/December 2008

– I spoke of my love for my profession of Occupational Therapy with an emphasis on DOING, ENGAGING, CHALLENGING, ADAPTING, COMPENSATING, and making the task ENJOYABLE. Those words describe OT as well as what you do. I spoke of the neuro-research that supports why DOING at the right level of challenge is effective. As Dr. Liang also reiterated, since 1998 we know that brain cells can re-grow, grow more connections and have more efficient synapses. Although some cells may be damaged by PD, you are never too old to learn new techniques. And you, volunteers, might want to go back to school to be an OT!

We discussed specifically:

– Dexterity and using large arm movements: Using art work, washing windows, shooting the rubber band from the morning paper.

– Rhythm: Clapping, drumming, listening and responding to music, applying these concepts to mobility, and dancing (in a wheel chair, behind a wheelchair, both of you holding a walker, rocking arm in arm), and the PD Tango Class at Avenidas Senior Center in Palo Alto.

– Facial exercise and swallow skills: Laugh with the funny faces, use your hands to encourage those muscles to move, pause long enough for a response, sing, and yell.  Make poetry with the KKK and GGG sounds which help the swallow muscles.

– Breathing: Again, yell and sing for fun! Use your hands on the rib cage, encourage breathing into your hands and help expel the air with a firm pressure. Touch almost always makes an activity more meaningful and enjoyable. And while you are at it, be sure to breath out long and slowly yourself!

– Move more: From the audience came discussions of Tai Chi and of the Wii, both known to be beneficial for people with PD. The Parkinson’s Institute is planning training in use of the Wii; call to get on their list. The Wii is the ultimate biofeedback machine, encourages challenge, participation, adaptation for different levels of participation and skill. The grandkids or friends or significant others can play it with you. We discussed Wii sports, Wii dance and Wii Fit. Wii is like your grandkids’ Xbox but interactive. It’s not cheap, but the benefits may make it worth it. Hook up the box to your TV and hold the wireless controller. The TV/box senses how you move (swing a bat, change your balance, launch a bowling ball) and shows the result on the TV screen, giving you immediate feedback and you just WANT to do it again better.

– Finally: take care of yourself. Besides all the usual ways, we discussed:
* Anticipate change, prepare
* Accept help, ask for help
* Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding
* Be ready to say “no.” Look ahead; will you be able to do this next year? What will you do on a bad day? Adapt, before you need to, before you get worn down and grumpy. Think through your options, talk about them with your support system.

A question was raised later in the program about why the healthcare community doesn’t address all the other symptoms of PD: constipation, lack of concentration, stiffness and fatigue, depression. Research shows healthcare providers are not comfortable or skilled at talking about these subjects. If you can bring up the subject it is more likely to be discussed, and we are more likely to learn more about how PD is impacting you.

Some resources that were requested:

Places to get equipment and ideas:
* Abledata.com, 1-800-227-0216: ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. Although ABLEDATA does not sell any products, they can help you locate the companies that do. Hint: call and ask, don’t just use the online version.
* SammonsPreston.com
* Ncmedical.com
* Alimed.com

Resources about attending to all the other needs of the person with PD:
* “My Mother, Your Mother” by Dennis McCullough.  “Slow Medicine” advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions–an approach that improves the quality of elders’ extended late lives without bankrupting their families financially or emotionally
* Handbook for Mortals by Diane Lynn, available in full online
* CodaAlliance.org and the Go Wish Cards for facilitating difficult conversations.

Finally, consider asking for Occupational and Physical therapy each time there is a change of condition. Your insurance probably covers therapy, and it is available through Outpatient or, if you are homebound, through Home Health. In some cases you might need to pay privately for therapy at $80 to $130 an hour. Be sure to explain to the therapist what the problems are that you are experiencing and ask for (demand?) practical solutions, not just more exercises. Help the therapist understand your individual needs.

Thank you, again.
Julie Groves, Therapy in Your Home — OT, PT, ST