TABLE OF CONTENTS - Neurodegenerative Diseases

A Guide for People Living With

PSP, CBD, and Other Atypical Parkinsonian Disorders

TABLE OF CONTENTS

"Because Hope Matters" by Chuck Peebler . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 1 President's Message by Richard Gordon Zyne, DMin

President-CEO . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 2 Introduction to the Guidebook by Janet Edmunson, MEd

Chair, Board of Directors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 3 The Diseases

? PSP: Some Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 4 ? CBD: Some Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 18 ? MSA: Some Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 21

Symptom Management ? Building an "Advisory Team" . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 25 ? PSP and the Bladder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 26 ? PSP and Constipation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 27 ? Pressure Sores . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 30 ? Dry Eye Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 31 ? Visual Issues and PSP. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 32 ? Good Oral Hygiene . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 34 ? Nutritional Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 37 ? Aspiration Pneumonia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 40

Treatments ? Using Physical Therapy to Help Manage Mobility Issues . . . . . . . . . . . . . . . . Page 41 ? Adapting to Swallowing and Communication Problems in PSP, CBD, and MSA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 45 ? Adapting to Adaptability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 57 ? Alternative Exercise Options in the Home: The Xbox Kinect . . . . . . . . . . . . . Page 60 ? Managing Cognitive Changes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 61 ? Managing Difficult Behaviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 62

TABLE OF CONTENTS?continued

Caregiving ? Make Meaning to Stay Positive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 65 ? Long Distance Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 67 ? Keeping Families Strong . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 70 ? Joining a Support Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 73 ? Ten Commandments for Family Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 75 ? Travel Tips . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 78

Resources and Planning ? Compassionate Allowances for PSP, CBD, and MSA . . . . . . . . . . . . . . . . . . . . . Page 81 ? Support and Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 83 ? Advanced Planning: Business Everyone Should Take Care Of . . . . . . . . . . . . Page 88 ? When to Hang Up the Keys . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 91 ? When Is It Time to Get a Wheelchair? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 93 ? When Should Hospice Be Contacted? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 98 ? The Importance of Brain Tissue Donation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 101

Glossary of Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 103

Caregiver Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 112

Resource Directory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 116

Because Hope Matters

I'm searching for hope, so is every other patient in my opinion, as well as their family, friends, and potential contributors to PSP research! Hope, I've come to believe, is as vital to our lives as the very oxygen we breathe. If I were to believe that I couldn't exert any level of control over my circumstances, I would have already lost the game! I understand that physicians have to continue to concentrate on understanding the nature of PSP ? but, by the same token, everyone connected with PSP has to find ways to better understand the connections between emotions and how the brain and body biologically talk to each other. This may be harder to accomplish than it would appear, since for any physician to effectively impart real hope, they have to believe it themselves.

Each disease and each case of each disease is uncertain in its outcome, and within that uncertainty, we can find hope! The disease and the brain cells affected have not read a textbook or research paper. This is the great paradox of true hope because nothing is absolutely determined. There are more reasons for hope than fear! So we must find ways to bridle fear and give great rein to hope. We all must believe that science will progress and in time new therapies will make PSP curable!

As you can tell, I see hope at the very heart of healing. For those of us who have hope, it may help us live longer. And if it doesn't, it will certainly help us to live a better life!

Chuck Peebler

Charles D. Peebler, Jr. served as a member of the Board of Directors of CurePSP (Foundation for PSP | CBD and Related Brain Diseases.) He passed away on April 18, 2009 at his home in Palm Desert, California. Chuck was in his sixties when he was diagnosed with progressive supranuclear palsy.

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Message from the President-CEO

A guide is one who leads another. The purpose of this guide is to assist at least two people-- the patient and his/her caregiver--along a challenging path. This path, which is just one part of life's journey, is not without its winding curves and sharp turns. But it is also not a path devoid of hope or meaning.

The people who have put together this guide are individuals who have traveled down this difficult path of progressive supranuclear palsy (or other "atypical Parkinsonian disorder") with a loved one. While each has, no doubt, experienced some darkness and pain on the road, each has also experienced personal growth and purpose in their own personal journey.

The purpose of this guide is not to offer ultimate answers or reasons for this disease, as helpful as that might be, because at this time the scientific community doesn't have all the answers. The purpose of this guide is to meet those individuals--both persons with PSP and their caregivers--face-to-face while they are walking down their personal paths of living with PSP.

While the person with the disease is generally thought of as the one who receives the services of the caregiver, the caregiver is also one who receives a gift from the ill person. The gift may come in various forms such as increased patience, a more loving attitude, a clearer understanding of one's capabilities, problem solving, consoling, improved listening skills, better understanding of one's emotional and spiritual strengths, and especially hope. Many of those who have provided years of caregiving have gone on to serve others with PSP and to serve as models of strength, service, and wisdom. CurePSP is indebted to those who have served as caregivers and who are now serving as beacons of light to those who are struggling with the disease.

We hope that you will find this guide to be very useful and we hope that in the very near future we may have the opportunity to revise it with the words; we have now found a cure!

Richard Gordon Zyne, DMin President ? CEO Foundation for PSP | CBD and Related Brain Diseases

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A Guide For People Living with PSP, CBD and

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