Category Archives: Living with a Neurological Condition

eMedicine on feeding tubes + some personal info

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This will only be of interest to those dealing with dysphagia (swallowing problems) and who are open to the idea of a feeding tube.

Personally, I never understood what the big deal was about getting a feeding tube during the time period when quality of life is still good.  When my Dad (with progressive supranuclear palsy) stopped eating and drinking over a week ago (he reported that it was too fatiguing to chew and swallow, the swallow was delayed by 5-15 minutes, and quite a bit of chewed food was spat out because he couldn’t perform the swallow), I started mentioning to a few people that I was looking into the ins-and-outs of a feeding tube.  Many of the people not involved in healthcare took it to mean that he was at the end of life.  I guess that’s why they got so upset talking to me and wanting to know if I was OK and if we were ready for hospice.  So I’m not quite sure how to bring up the topic anymore.  Basically, I view the feeding tube in the same way I view the walker or wheelchair — it makes life a little safer.  He said he wanted it.  And if I were he I would want it as he still has pretty good quality of life.

Anyway, I can report to you today that my Dad had surgery this morning (with Versed, a sedative, and fentenyl, an analgesic, both given via IV).  (They initially said they’d be using the intravenous anesthetic propofol.  I said “what about the 1/23/07 issue of Biochemistry which indicated that propofol leads to amyloidbeta peptide aggregation in the brain?”  The MD said “amyloid-beta aggregation is not an issue in PSP.”)  A G-J tube was placed.  Endoscopy (a procedure using a probe with a camera on the end) was not used.  Because most people getting a feeding tube have an NG (nasal gastric) feeding tube in place — it goes through one of the nostrils down to the stomach — and they were unsuccessful in placing such a tube in Dad on Monday, the prep time for the surgery was longer than normal.  In total it was supposed to take 2 hours; it took 3.  The procedure was done by an interventional radiologist.  Normally, the NG tube is used to insert a dye so that the colon is highlighted so it won’t get hit.  They, instead, inserted a tube into Dad’s rectum and injected the dye that way.  Then they inserted a tube down his esophagus in order to blow air into the stomach so that they could “see” the stomach from outside the body.  They had lots of trouble inserting that tube.  So much so that the MD asked me later why we were worried about acid reflux and aspiration.  She was thinking that if it’s so hard to get things down the esophagus, it must be hard for things to come back up.  I mentioned that Dad was at risk for aspiration, based on the modified barium swallow study.  After telling her that, she agreed that the G-J tube was better than the G-tube for Dad.  (It would’ve been better to have had that conversation beforehand but no harm done.)  There is one small tube going into Dad’s body.  Inside, the tube splits — one part goes off to the G (which stands for “gastric” and refers to the stomach) and one part goes off to the J (which stands for “jejunum” and refers to the intestine).  This small tube comes out of Dad’s body for about 7 inches.  (It’s long!)  At the end of it is a rather large and firm set of three tubes or ports; there’s a G port, J port, and a Bal port (don’t know what that one’s for yet).  All of the feeding, hydration, and medication will occur via the J port.  I’m not really sure why there’s a G port.  Perhaps as a back-up or something.  Right now, stomach bile is draining out of the G port.  This is supposed to end at some point (days? weeks?).  The idea is that if you can get the liquid further down into the gastrointestinal system, there’s less chance it will back up into the esophagus and therefore less risk of aspiration.  The MD said that if there were no risk of aspiration a G tube would be better as the stomach is the best place for the body to receive nutrition and digest it.  The MD gave me one tip, which I thought I’d pass on:  if the G-J tube gets loose, insert a Foley catheter into the tube, inflate the balloon, and get to an ER soon.  The catheter will keep the hole open; if there’s not something there keeping the hole open, it will start to close up.  (Note to self: buy an extra Foley catheter and syringe to inflate balloon.)

I’m still learning about the feeding process so I don’t want to say too much about that.  Our plan is to feed him over a 12-hour period while he’s in bed at night.  (One bummer is that he’ll have to sleep with the head of the bed at a 30-45 degree angle to avoid reflux.)  We are very lucky that one of Dad’s feeders has a daughter who has been fed via NG tubes and PEG tubes, so she’s way ahead of us in terms of knowing how to handle all of this.  I have some concerns about finding a feeder who can come start the 12-hour feed around 8pm.  And I want to try to find a belt or cover so that I can protect the tube and ports as everyone says they can be accidently ripped out.  When I learn more, I’ll pass it on.

I haven’t had much access to the internet over the last few days, so I’ve relied on the rather poor info that’s been given to me about PEGs and G tubes by the hospital (in Salt Lake City).  Tonight, after the fact, I’ve gone to emedicine.com, which is one of my favorite sources.  They do cover the topic of feeding tubes, and the G-J tube (picture 8 looks a little short and small to me).  I thought I’d pass on the link to that:

www.emedicine.com/radio/topic798.htm

Percutaneous Gastrostomy and Jejunostomy
Last Updated: March 26, 2003
eMedicine.com

Pain Resource List (from PBS Frontline “Living Old” program)

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Did anyone watch the PBS Frontline program called “Living Old”?  It was
worthwhile.  Here’s the pain resource list from the program.  I’ve added web addresses and quite a few notes.

And these pain-related resources are probably worth mentioning here too:

» Partners Against Pain
http://www.partnersagainstpain.com/
A group providing information, education and advocacy on better pain management.

» American Pain Foundation
http://www.painfoundation.org/
A foundation dedicated to eliminating the undertreatment of pain.

» National Pain Foundation
http://www.nationalpainfoundation.org/   –> this is different from the link provided by “Living Old”
Another resource site for managing pain for families and caregivers.

“Make a Place for Your Illness And Put It in Its Place”

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This wonderful article about coming to terms with a chronic illness was written by a former family therapist.  She founded a website called SelfCareConnection.com.  [Editor’s note: the website no longer exists.]  This article was posted awhile back on a website about dealing with neurological disorders.

Robin

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Make a Place for Your Illness And Put It in Its Place
By Pauline A. Salvucci
Posted on SelfCareConnection.com

“A place for everything, and everything in its place.” That may be a fine idea if you’re eyeing the clutter on the living room floor, or a pile or two of old magazines and catalogs collecting dust in a
corner. But what has it got to do with chronic illness? A lot.

Chronic illness is never a welcomed guest in anyone’s life. However, when it becomes a visitor in yours, in many cases, it’s there to stay. How you cope with your illness will determine, in great part, how well you live your life. Of the three primary factors which measure your ability to cope: your attitude, the social context of your life, and the quality of resources available to you, your
attitude becomes the foundation upon which the others build.

Making a place in your life for your illness may sound like a strange thing to do, but it’s a crucial step in learning how to cope with illness and putting it in its place. Here are some suggestions:

Acceptance and denial are normal steps toward making a place for illness. When you begin to accept your illness, you open yourself up to see what’s on your plate. Then you can begin to interact with it and make a place for it. When you deny your illness, you close yourself off to yourself, and you shut down. Feeling both acceptance and denial are normal responses to chronic illness. Being sick makes you different from healthy people. And, if your illness isn’t
visible, you may deny it more than if it were. Accepting illness is a process. It doesn’t happen all at once. Don’t be harsh on yourself when you fluctuate between accepting your illness and denying it. Acceptance isn’t something you do once and for all. Acceptance lives in the present moment. Little by little as you accept your illness,
you make room for it in your life.

Adapting to change takes time and patience. Like an onion, you peel off one layer of change at a time. The changes you often are faced with will stretch and challenge your ability to adapt. You may have to let go of, or even say goodbye to some parts of your life, either for a time, or perhaps permanently. Grieve this loss. Perhaps create a ritual to say goodbye, but don’t deny those parts of your life which you enjoyed and which were important to you. They are a very real part of your history and deserve your respect. Your life is
different than it was before you became ill, but don’t treat your past and the things you enjoyed as if they never existed. As you make the changes your illness requires, you can become more flexible and creative in adapting to change.

An idea that may help you is to keep a journal of the changes you’ve already made and how you made them. This can serve as a reminder of your accomplishments and as a guide for making other changes. As you develop a greater degree of flexibility in adapting to change, the easier change becomes.

Befriend your illness as a part of your life. Chronic illness is your daily companion; you already know how it affects your body. Now get to know what you feel and think about it, and especially how you
treat it. If you consider your illness an enemy to be crushed, or an unwelcome guest which you refuse to tolerate, or even an interloper you must annihilate, how will you allow your illness to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln said about a house being divided against itself unable to stand? If you’re divided against yourself by
refusing to know your illness, or by waging war against it, how will you come to befriend it? Consider giving your illness a name and talking with it. Speak from your heart and your passion. Write down everything you think and feel about it. Don’t keep your thoughts running around in your mind creating havoc. Then, listen to what
your illness says to you in return. If you find this difficult to do, don’t be discouraged. It is difficult, but there are rewards. An uneasy alliance is better than none at all.

Do you feel as if you’re losing yourself? Do you feel as if your blue moods are turning into dark depression? Is inertia increasingly becoming more a part of your life? Do you do less for yourself on
the days when you could be doing more? Do you isolate yourself from your loved ones and friends? If over a period of time, you are regularly experiencing these feelings and can’t shake them, don’t hesitate to find professional help. Ask your doctor to refer you to a therapist whose specialty is working with people with chronic illness. These therapists can help you to make your way through
difficult times. Yes, it’s important to talk with your friends and family, but talking with a professional can be very freeing. They are available to help you sort out your experiences and the many feelings and thoughts you have about yourself and your illness. This isn’t the time to “tough it out”, or attempt to dismiss your feelings with a mind over matter mentality. Allow yourself to get whatever help you need. It can make a real difference in your life.

How often during the course of a day do you talk about your illness or refer to it? Do you feel it’s taking more of your time and energy than you would like it to? That can happen, especially when you are initially diagnosed and you’re learning about your illness and trying to figure out your relationship with it. If it becomes a habit, and you feel as if you’re losing perspective, here’s a way to
regain your balance. Create “talk space”. Choose a comfortable place in a room in your home and make time to talk about your illness with your partner and your family. Let them know what you’re experiencing and thinking. This is a time for honest sharing, for you and for your loved ones. Allow this “talk space” to be the place and time where you discuss your illness. Keep the rest of your home an “illness free talk zone”. This will allow you and your family to enjoy one another’s company and conversation without reverting to
the topic of illness.

Seeing with new eyes doesn’t mean looking through rose-colored glasses. When it comes to putting your illness in its place, you might try seeing with new eyes. When it takes you more time to do just about everything, when simple tasks frustrate you because they’re not so simple to do anymore, when the familiar becomes foreign, when you can not do the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer paint, you can still go to museums or art galleries. If you can’t do that, you can enjoy art on the Internet since it offers you access to the world’s best museums, galleries and art exhibits. If you worked with your hands and can no longer use tools to do a job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your expertise. If you loved nature and the outdoors, but can no longer hike, drive along some of the scenic roadways and enjoy the beauty and majesty of nature. Find a way to keep what you have been passionate about in your life. It
takes time, work, patience, spirit and heart to make a place for illness in your life. Seeing with new eyes is both a tribute to courage and the ability to put illness in its place.
Pauline Salvucci, M.A., is a personal coach, founder of SelfCareConnection.com and a former medical family therapist. Her specialty is coaching people at mid-life, particularly those with health issues and family caregivers who are sandwiched” between their families and their aging parents.

“Depression, Delirium & Dementia” – lecture notes

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Stanford University (stanford.edu) sponsored a 3-part series on geriatric health in May.  The first evening, May 11, 2006, included this lecture:

“Depression, Delirium & Dementia: What Should We Be Doing?”
Speaker:  Barbara Sommer, MD, Asst Prof of Psychiatry and Behavioral Sciences, Stanford Univ

Local support group member Karen D. gave me her notes on the lecture.  This post attempts to summarize some of the key points in that lecture.

Robin

Dr. Sommer stated that life expectancy increases are not due to doctors but to infrastructure changes, such as indoor plumbing.

She stated that 27% of people older than 60 living in a community have some degree of depression.  Depressed people have two times the number of doctors’ appointments than others.  75% of elderly suicides have seen their doctors in the last month.  The rate of elderly white males is increasing.  Elderly women’s suicide rates drop to zero after they stop caregiving for their elderly spouses!

Of those with dementia, 64% have AD, 25% have Vascular Dementia, and 12-15% have Frontotemporal Dementia (FTD).

She mentioned that there are several drugs on the market to treat AD:  three acetylcholinesterase inhibitors (including Aricept) and Namenda.  The standard treatment is to prescribe one of the acetylcholinesterase inhibitors and add Namenda.  Glutamate is essential to the brain.  Namenda restores the glutamate levels to normal.

Dr. Sommer said that memory can be optimized through mental gymnastics, dance and tai-chi, avoiding medication that affects the brain, diet, avoiding obesity, avoiding stress, and optimizing near vision.

Medication that affects the brain includes some anticholinergics, benzodiazepams or sleeping pills, antihistamines, etc.

Those with a higher BMI (body mass index) have a higher risk of dementia. She pointed out that when you lose near vision, you lose stimulation and the ability to participate in activities.  Bottom line – lose weight and see your optometrist!

Dr. Sommer repeatedly noted the negative effects of stress.

Dr. Sommer said that delirium is reversible.  She distributed an article on “Preventing delirium in older people,” published 7/15/05 in the British Medical Bulletin.  You can find an abstract of the article online at no charge:

bmb.oxfordjournals.org/cgi/content/abstract/73-74/1/25

The article states that:

“Up to 50% of delirium affecting older people develops after admission to (the) hospital.  These cases often result from hospital-related complications or inadequate care.” 

The paper focuses on how to prevent the delirium that is acquired in the hospital and is preventable.

 

“Cognitive Changes w/Aging” and “Maintaining Health” – lecture notes

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Stanford sponsored a 3-part series on geriatric health in May. The second evening, May 18, 2006, included two lectures:

“Cognitive Changes With Aging: How Much Is Too Much?”
Speaker: Michael Greicius, MD, MPH, Dept of Neurology, Memory Disorders, Stanford Univ

“The Big Picture of Maintaining Health — Medications, Tests and Safety At Home”
Speaker: Yusra Hussain, MD, Dept of Internal Med, Geriatrician, Stanford Hospital & Clinics

This email attempts to summarize some of the key points in those lectures and provide a web link to the handout.

Dr. Greicius said that one-tenth of people over 65 have Alzheimer’s Disease. One-third of people over 85 have AD. 70% of the dementia cases are AD. The most common non-AD dementias are Vascular Dementia, FTD, and LBD. According to the “nun study,” the more education you have, the less impaired you are than someone with less education for the same degree of AD.

There is a disorder known as Mild Cognitive Impairment (MCI). Half of those with MCI convert to AD every four years. Scientists are looking into who will convert and how this can be prevented. Neither Vitamin E nor Aricept helped treat MCI.

There are many reversible causes of memory loss including B12 deficiency, low thyroid, medication (anticholinergics including some medications for urinary incontinence, beta-blockers, enzodiazepines, opiates, anti-epileptics, some medications for neuropathy), depression, alcohol, and retirement.

In general, people in their 50s and 60s can handle less than half the alcohol they could handle in their 30s.

There are some cognitive IMPROVEMENTS with normal aging: emotionality, semantic knowledge (knowledge of the world), and vocabulary.

Dr. Greicius spoke about cognitive decline with normal aging. Related to that topic, he distributed an article from the journal Nature Review Neuroscience, Feb ’04, titled “Insights into the Ageing Mind: A View from Cognitive Neuroscience.” He said this was an excellent review of the topic. An abstract of the article can be found at: (The full article costs $30.)
http://www.nature.com/nrn/journal/v5/n2/abs/nrn1323_fs.html

What can be done to minimize cognitive decline? His guesses include living healthy, moderate alcohol consumption, and no cigarettes. He explored the possible role of NSAIDs and cognitive training in minimizing decline.

His recommendations include: all things in moderation; minimize cardiovascular risk factors; sell your TV; read, dance, exercise; spend more time with friends and family; participate in medical research. Two journals did a review of ginkgo biloba studies. They showed no benefit. He doesn’t recommend taking extra Vitamin E.

Dr. Greicius said that there is a GRAIN of truth only to the layperson’s notion that for the clock test (part of the 4-hours of neuropsychological testing) those with AD can draw the clock and those with LBD cannot. He said that generally speaking those with LBD have visuospatial impairment early on, which is why they can’t draw the clock. But not all those with LBD have visuospatial impairment at the time of diagnosis. Another point: those with late stages AD can’t draw the clock either.

Dr. Hussain said that most people get a serious chronic condition at the age of 55. These can include geriatric syndromes, which are urinary incontinence, MCI, and depression.

If you think your health is excellent, you will live longer. If you think your health is merely good, your lifespan is normal/average.

About half of all deaths are attributable to preventable factors.

A healthy lifestyle includes: maintaining social life; being active each day; eating well; avoiding tobacco and excessive alcohol intake; following up on periodic health examinations and screening tests.

The best diet is rich in fruits, vegetables, whole grains, and nuts. One should have moderate consumption of polyunsatured fatty acids, omega 3 fatty acids, protein and dairy. One should have low consumption of carbs and animal fats. She does not recommend taking a multi-vitamin with antioxidants as a supplement. She says that antioxidants should be part of the diet.

In order to maintain cognitive function, she said that the “nun study” shows that it’s important to have a purpose in life and to stay busy with family and friends.

Frailty cannot be reversed.

That’s it! I didn’t attend the third lecture nor was I very interested in it so I won’t be emailing out notes from that one.

Regards,
Robin