Useful Books

Parkinson’s patient and her children write book about living with Parkinson’s Disease

Ann Marie (Annie) Konopka aims to educate young children about life challenges with Parkinson’s Disease in this sweet story ,The Tale of a Parkie Princess. This book is available for purchase either in a download format or hardcopy edition. Please visit online sites below to purchase “The Tale of a Parkie Princess”.

Annie Konopka’s message in this book is that whether it is Parkinson’s, MS, Arthritis, Diabetes, heart disease or other chronic illness, children need some comfort in knowing their parent or grandparents still love them and the best way to cope is to love each other --no matter what! Annie Konopka has portrayed that message with sensitivity and a genuine caring heart in “The Tale of a Parkie Princess”.

“The Tale of a Parkie Princess” is a learning tool for parents to share with their children. Annie Konopka has lived with Parkinson’s disease , while raising her two young children. Her goal with PD is to not let it dictate any limitations, but rather choose how she will let PD affect her family. Sharing a diagnosis with young children can be difficult; this story is an attempt to help explain the effects of Parkinson’s disease with love and compassion.

Link to Publication: http://www.lulu.com/content/374273

EBay: http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&category=279&item=170013893303

ABOUT AUTHOR
The author, Ann Marie (Annie) Konopka, was diagnosed with Young onset Parkinson’s disease at the age of 36. She is married to Joseph and is a mother of two children, ages 10 & 6.

CONTACT:

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"Hard Choices for Loving People",
Hank Dunn, Chaplain, Hospice of Northern Virginia in Leesburg,VA.
A&A Publishers,Inc., P.O. Box 1098, Herndon, VA 20172-1098.

Voice Mail=(703) 707-0169, FAX (703) 707-0174

I don't know the price, but it can't be much, and there are apparently bulk discounts for group orders.

Chapter headings are :

1. Cardiopulmonary resuscitation
2. Artificial Hydration & Nutrition
3. Cure sometimes, comfort always--Hospice and the "Comfort measures only" order
4. Making end-of-life decisions
5. The Journey to Letting Go

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"Parkinson's Disease--Fitness Counts", FREE from NPF 1(800) 327-4545 Pg.35 and after deal with how to get up after a fall, how to practice this, and also how a CG can use safe "body mechanics" in helping a PWP

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"Parkinson's Disease and the Art of Moving", by John Argue, $15.95 from New Harbinger Publications, (www.newharbinger.com) which is an excellent and very structured approach to exercise, and also describes and pictures ways of getting down to the floor (to exercise there) and getting back up. He presents a holistic view which includes overcoming your "fear of the floor".

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Also, here are some organizations that may send you helpful information free of charge.

AMERICAN PARKINSONS DISEASE ASSOC.,
807 South Alfred Street #2,
Alexandria VA 22314 1-800-684-2732:
Other available books are:

Parkinson's Disease Handbook
Be Independent
Be Active
PD "n" Me in which individual PWPs share their experiences with PD.

PARKINSON'S DISEASE FOUNDATION
William Black Medical Research Building
Columbia University Medical Center
650 West 168th Street, New York, NY 10032:
Exercises for the Parkinson Patients with Hints for Daily Living

We also have gotten very helpful information thru seminars. I would also recommend joining a support group.

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I would like to suggest that perhaps one of the best things I have found for me as a caregiver, has been the book entitled Therapeutic Caregiving - A practical Guide for Caregivers of Persons with Alzheimer's and Other Dementia Causing Diseases by August Barbara J. Bridges, R.N. The book is available through book stores, or some Alzheimer's Association offices.

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Comments about Parkinson's Disease & the Art of Moving

This is not your typical "exercise book" by any means. John Argue obviously knows his subjects--PD and exercise-- in great depth, and conveys this to the reader by means of text and photos.

His unique approach is philosophic---as when he tells us that we must "shift to an artful action--one that is graceful, mindful, and complete, " in order to cope with PD symptoms ---to "speak and move consciously".

He also gives practical advice, reminding us that it is truly a case of "use it or lose it" in terms of mobility for PWPs, but also that even one who is in a later stage of PD can participate within her/his own limits in the program he describes. While the program can be followed individually, it seems obvious that the greatest benefit is in following it with a group.

That program is a detailed, graduated approach to maintaining and improving mobility of body and quality of speech. The excellent photos which accompany the text of the exercise portion are clear and easy to follow, while the text is readable, interesting, and persuasive.

For a PWP who is motivated to make the sustained effort required, and has a positive attitude toward exercise of any kind, this would be a very valuable resource. Unfortunately, not all PWPs are blessed with such motivation, and the very completeness of the program may for them be "off-putting".

There is a useful appendix, with resources, additional reading, and a note about the importance of political advocacy. Argue wisely reminds us that PWPs must plan to keep exercising "for the rest of your life".....adding, "Always be beginning".

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These aren't books but are tapes.

Over 26 million Americans have found themselves taking care of loved ones in the home. It's a daunting task. And, unless you've got years of CareGiving experience, there is very is little information out there on how to be a "CareGiver". Life View Resources have a very good set of products for the CareGiver. The Educated Caregiver, is an award winning video series devoted to helping one cope with the role as a CareGiver and to teach the practical skills needed to provide the best care possible. The tapes include information on "coping skills," "Hands-on skills," and "Essential knowledge."

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Don't Sweat The Small Stuff--and it's all small stuff by Richard Carlson, PH.D. Got a stress case in your life? Of course you do: "Without question, many of us have mastered the neurotic art of spending much of our lives worrying about a variety of things all at once." Carlson's cheerful book aims to make us stop and smell--if not roses--whatever is sitting in front of our noses. Don't Sweat the Small Stuff... offers 100 meditations designed to make you appreciate being alive, keep your emotions (especially anger and dissatisfaction) in proper perspective, and cherish other people as the unique miracles they are.

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FROM Nancy Burnham: Excellent resource book, "Surviving Your Spouse's Chronic Illness" by Chris McGonicle. It is well written, in simple terms, by CareGivers who have been there. It covers the good, the bad and the ugly, and does it in a non-judgmental way. If you are a CareGiver who doesn't have a support group, this book might help. If you are the spouse with the chronic illness, this book might help you understand some of what is going on, at least it did with me. It also makes you aware of some of the decisions you might need to think about in the future.

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FROM Dorothy Garboczi (PWP)& Dave (CG): For dealing with the cognitive and dementia problems of Park...get the book "The 36-hour day" by Nancy Mace, M.A. and Peter Rabins, MD., M.P.H. It is a paper back and cost $6.50 at Border's. It is primarily a book for Alzheimer care givers but there's lots of good facts and reading. One can pick it up anytime, choose a subject, and read.

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FROM Camilla Flintermann: The book, by Kathrynne Holden, MS,RD--a dietician specializing in nutrition for PWPs, is called "Eat Well, Stay Well with Parkinson's Disease", and is available from her organization, Five Star Living, E-mail: fivstar@webaccess.net It contains information re: PD and nutrition as well as recipes, and is an excellent resource.

Book: "Dementia in Close-up", by Be're M.L.Meisen published by Routledge, 29 W. 35th St.,New York NY 10001 Available through online bookseller or local bookstore.

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This is suggested by Pat Beekman who wrote : Hi everyone. I just want to tell you about a CareGiver support kit that I received from our parish nurse. It is given free by the NATIONAL CareGiving FOUNDATION. It is a 103 page loose leaf binder filled with all kinds of information, suggestions, phone numbers of disease foundations and associations. It uses Alzheimers Disease as an example but it was no problem to "take what I need and leave the rest." It has a section for you to fill out with a complete medical history and directions on how to care for your PWPSP. There are wallet cards for both the CareGiver and the care recipient to carry in their wallet or purse, a page of sticky warning and emergency labels, a musical cassette tape (mine was Laurence Welk), and a plastic Daily Medication Dispenser. All of this is FREE but with a request for a DONATION of your choice to continue their work! You may order a kit by calling:
The National CareGiving Foundation
401 Wythe St. A-3
Alexandria, VA 22314
(703)299-9300
1-800-930-1357

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"The Fourteen Friends Guide to Eldercaring." Apparently a group of 14 women friends who all have experience caring for elderly parents, spouses,etc. have written it to share their experiences with others. It is now available in hard back, $11.87 from Amazon.com, and takes 1-2 weeks to ship, but will supposedly be published in paperback in the Spring. The women were shown on TV in a circle of sharing, which reminded me of CARE--only it was face-to-face.

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Some time ago I mentioned a book, "Counting on Kindness" by Wendy Lustbader, which deals with issues of CGing and dependency. The author gave a workshop near here, which was attended by friends of mine, and the leader of our VCG Support Group. They brought back lots of good materials to share, and I would like to quote a few things here from time to time.

First, I will try not to run afoul of copyright laws by quoting verbatim/too much.

Lustbader has another book, "Taking Care of Aging Family Members",rev. ed., Free Press, 1994, from which the following ideas are taken:

HOW TO COMFORT PEOPLE WITH SEVERE MEMORY LOSS from: Wendy Lustbader,MSW

If a person speaks about deceased family members as being alive, and is happy in doing this, nothing is gained by correcting them. But if a direct question is asked, give reality info. There are times when the person is so "into" another time, that reality doesn't interest them.

We have mentioned "sundown syndrome" here, and it often occurs in a NH or hospital -- a strange setting. One way to help may be to turn up the lights and play music, or add stimulation by a walk,or calming with warm bath and backrub. Different strokes for different folks, as they say.

When questions are repeated over and over, reassurance by a touch and "everything is taken care of" type reply may help. Then change the subject, which may work better than "just the facts, Ma'm" approach.

"Confabulating" means filling memory gaps with invented information, to cover for memory loss--it is NOT lying, and does no good to try to argue with them.

"Labile" means unable to control the expression of emotions--such as the frequent weeping some have mentioned here--this is due to damage to the part of the brain that filters emotions, and can't be controlled by the person. THEY MAY BE LESS UPSET THAN THEY APPEAR. Best to try to change the subject,not probe for "what's the matter?" if this seems to be what is happening.

Another point she made, in an article in the Journal of Case Management (Winter 1995) addresses the problem of anger which is provoked by dependency. A CG may be hurt and put off when the PWP is angry and "ungrateful", not realizing the response may be due to loss of control over one's life, shame at "being a burden", etc. The CG may be criticized for "not doing it right", which translates to,"You're not doing it my way, and that makes me feel so helpless." Giving back whatever control is possible, even in small things,can symbolize a "return of the self" and of the dignity which the person loses due to the illness. Dependent people lose the opportunity of giving, and thus become "indebted" to their CGs,and feel powerless.

Dependent people may also fear "using up" the CGs goodwill, and being "abandoned". The CG may do better by setting reasonable limits, e.g. "I'm too tired from my job to have dinner with you every night, but let's plan when we can do it regularly, and both can look forward to it." This may reduce the resentment and guilt felt by the CG who wants to do it all, but cannot.

I hope these points may be helpful--several reminded me of my own CGing experiences,or things others have posted here. You might check your local public/college libraries to see if they have either of her books--very worthwhile!

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Hospice Booklist

Vanauken, Sheldon, A Severe Mercy
From the Back Cover This celebrated memoir, winner of the National Religious Book Award and the Gold Medallion Award, traces the idyllic marriage of Sheldon and Jean Vanauken, their search for faith and friendship with C. S. Lewis, and the tragedy of untimely death and lost love. It includes eighteen letters by C. S. Lewis.

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Lewis, C. S., The Problem of Pain
Synopsis Why Must Humanity Suffer? C.S. Lewis, the master apologist, tackles the question that has plagued humanity for centuries. If God is both omnipotent and good, how can we explain the pain and suffering that people experience daily? And what of the suffering of animals, who neither deserve pain nor can be improved by it? With compassion and insight, C.S. Lewis proposes reasonable answers to these critical theological problems, sharing his wisdom with those who seek true understanding.

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C.S.Lewis, A Grief Observed
C.S. Lewis joined the human race when his wife, Joy Gresham, died of cancer. Lewis, the Oxford don whose Christian apologetics make it seem like he's got an answer for everything, experienced crushing doubt for the first time after his wife's tragic death. A Grief Observed contains his epigrammatic reflections on that period: "Your bid--for God or no God, for a good God or the Cosmic Sadist, for eternal life or nonentity--will not be serious if nothing much is staked on it. And you will never discover how serious it was until the stakes are raised horribly high," Lewis writes. "Nothing will shake a man--or at any rate a man like me--out of his merely verbal thinking and his merely notional beliefs. He has to be knocked silly before he comes to his senses. Only torture will bring out the truth. Only under torture does he discover it himself." This is the book that inspired the film Shadowlands, but it is more wrenching, more revelatory, and more real than the movie. It is a beautiful and unflinchingly honest record of how even a stalwart believer can lose all sense of meaning in the universe, and how he can gradually regain his bearings. --Michael Joseph Gross

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Bolen, Jean Shimoda, Close to the Bone: The Meaning in Mortal Illness
From the author, Jean Shinoda Bolen, M. D. , December 2, 1998 Reasons for writing and perspective of Close to the Bone. I wrote Close to the Bone to help people know about the psychological and spiritual terrain that a life-threatening illness will taken them into, and the ways in which the diagnosis and treatment is a mythic event in their lives, and in the lives of those who love them. A diagnosis of cancer, AIDS, or any potentially fatal illness is metaphorically, a descent into the underworld. When I spoke to large audiences of people who were surviving such illnesses, I learned how the language of myth touched them at a soul level, which inspired me to write this book. Since it was published, I learned from readers that Close to the Bone does what I hoped it would do, that for those on this journey, it is like like having an encouraging and wise companion with them. I believe that a life-threatening illness calls upon us to trust what we know "in our bones," and that we are spiritual beings on a human path, rather that human beings who may or may not be on a spiritual path. It is this perspective and what I have learned so far from my life, and from my profession as psychiatrist and Jungian analyst, that underlies what I have written.

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De Hartog, Jan, The Outer Buoy: A Story of the Ultimate Voyage
( Fiction ) Final entry in chronicle of Martinus Harinxma, the Dutch ocean going tug skipper of the book, "The Captain" which began the series. In this volume, "Fancy That" as his shipmates called him is invited to join other octogenarians in a NASA experiment. They attempt out-of body experiences in a guided program with structured goals. Several of the participants are terminally ill and quite fragile. The ending has an upbeat, yet mystical element consonant with the Quaker themes of De Hartog's other books.

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West, Jessamyn, The Woman Said Yes
Based on companioning her sister through a final illness.

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Saunders, Margaret Marshall, Beautiful Joe
(Juvenile book) Amazon.com (five stars) Reviewer: A reader from San Francisco, CA August 13, 1999 OK, seriously... this book leaves such an impact on every child I have seen that has read it. It teaches amazing compassion. It teaches the golden rule doesn't apply just to humans. It begs for people to be the best that they can. It is the basis for the credo of the humane society. It makes you think twice when you see a stray, heck, it makes you think when you look at a rat. There is no reason for a child not to be read this story, in fact several adults I know could benefit from it also. And read the sequel too... Beautiful Joe's Paradise (when the are all in heaven and all damaged/hurt creatures are restored! Even Barnum's elephant, Jumbo gets his tusks back...) Happy reading and get some Kleenex, if you cried in Black Beauty... you'll need it for this, too!

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Dear Friends-- here's a useful catalog to add to your list of resources for aids of various kinds for daily living. We've not ordered from it yet, but it has a better variety than many seem to. Of course, we have no financial interest in the company!

Catalog name--"ABLEWARE, Independent Living from Maddak,Inc."
Address:
AliMed,Inc.
297 High ST., Dedham,MA 02026
Phone: 1-800-225-2610
8:00AM-8:00PM Eastern time (USA) Mon.-Fri.

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Willamette-Columbia Parkinsonian Society of Oregon (Will Cope) now has "A guide to caring for the Parkinson's patient" (FREE) to take with you when you go to the hospital. It describes the disease, characteristics of the disease, complicating factors, advice to speak with nutrition consultant, neurologist advisory and a place for medication schedule. Also a Demerol alert for those on Elderpry.
Please give Will-Cope a call at. 1-800-485-7384

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