Resources

Cancer

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Websites

 

American Cancer Society | https://www.cancer.org/

Website features: news, information on types of cancer, patient services, treatment options, sections on children with cancer and living with cancer, and cancer statistics.

 

Cancer.Net | https://www.cancer.net/

The official website for the American Society of Clinical Oncology (ASCO) with insights, tips, and inspirational posts on cancer, written by cancer physicians.

 

Leukemia and Lymphoma Society | https://www.lls.org/

 

American Cancer Society | cancer.org

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Arthritis

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Websites

Arthritis Foundation | https://www.arthritis.org/

Official website of The Arthritis Foundation, also available in Spanish includes a blog, resource finder and helpline. 

- Living with Arthritis https://www.arthritis.org/living-with-arthritis/ 

- Walk with Ease Program https://www.arthritis.org/living-with-arthritis/tools-resources/walk-with-ease/ 

 

National Institute of Arthritis, Musculoskeletal and Skin Diseases | https://www.niams.nih.gov/ 

Government agency. Search arthritis, osteoporosis, and other topics:

- https://www.niams.nih.gov/health-topics/arthritis

 

Programs

Fit & Strong! | https://www.fitandstrong.org

- An exercise program for adults with arthritis

 

Print

Shlotzhauer, T. L. (2014). Living with rheumatoid arthritis. Baltimore: Johns Hopkins University Press.

Asthma, Lung Disease & Emphysema

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Websites

Allergy & Asthma Network | https://www.allergyasthmanetwork.org/

The Allergy & Asthma Network Mothers of Asthmatics, a patient advocacy organization, was started by a mother with children who have asthma. Section for patients includes practical easy-to-understand and medically accurate ways to prevent and control symptoms.

 

American Lung Association | https://www.lung.org/

Also available in Spanish, The American Lung Association website provides information on asthma, allergies, and other respiratory illnesses, ways to stop smoking as well as in-depth information on ongoing clinical trials. 

- COPD https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/copd/

 

American Academy of Allergy Asthma & Immunology | https://www.aaaai.org/

The American Academy of Allergy Asthma & Immunology (AAAAI) is one of the nation's largest professional medical specialty organizations. Their website, though mainly for industry, does include a Find an Allergist / Immunologist service. 

 

American Thoracic Society | https://www.thoracic.org

International medical association dedicated to advancing clinical and scientific understanding of pulmonary diseases, critical illnesses and sleep-related breathing disorders.

  • - Patient Resources https://www.thoracic.org/patients/patient-resources/ 

 

Asthma and Allergy Foundation of America | https://www.aafa.org/

A nonprofit organization founded in 1953, works to develop and implement public policies to improve the quality of life for people with asthma and allergies. This website provides information about triggers, symptoms and treatments as well as a blog and community forum.

 

Asthma Canada | https://asthma.ca/

Asthma Canada provides research, advocacy, education and support. Search Asthma under Get Help for asthma basics, diagnosis, triggers, medication, management and information for parents and caregivers. 

 

Breathe California

 

Centers for Disease Control and Prevention

  • - COPD https://www.cdc.gov/copd/index.html 

  • - Heart Disease https://www.cdc.gov/heartdisease/ 

  • - Stroke https://www.cdc.gov/stroke/ 

 

Chest Foundation | https://foundation.chestnet.org/

Champions lung health by supporting clinical research, community service, and patient education.

 

COPD Foundation | https://www.copdfoundation.org/

A nonprofit organization providing educational materials including a video series for patients with chronic lung disease

 

Kaiser Permanente: Sleep Apnea | https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.sleep-apnea.hw49127?kpSearch=sleep%20apnea 

 

MayoClinic: Emphysema | https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555 

 

MedicineNet: Emphysema | https://www.medicinenet.com/emphysema_lung_condition/article.htm 

 

MedlinePlus

 

National Emphysema Foundation | http://www.emphysemafoundation.org/

This site is to enable those with emphysema to better cope with and understand the nature of their disease through new research, current treatment initiatives, and innovative ways of coping. 

 

National Heart, Lung, and Blood Institute | https://www.nhlbi.nih.gov/

The National Heart Lung and Blood Institute plans, conducts, and supports research, clinical trials, and observational studies related to the causes, diagnosis, prevention, and treatment of heart, blood vessel, lung, and blood diseases, and sleep disorders. 

 

The Lung Association | https://lung.ca/

The Lung Association is the leading organization in Canada working to promote lung health and prevent and manage lung disease. The website includes many helpful resources including videos on how to use different types of inhalers. 

 

National Heart, Lung, and Blood Institute, National Institutes of Health, Asthma | NHLBI, NIH | https://www.nhlbi.nih.gov/health-topics/asthma

 

United States Environmental Protection Agency (EPA): Asthma | http://www.epa.gov/asthma/

 

WebMD: COPD Health Center | https://www.webmd.com/g00/lung/copd/default.htm?i10c.ua=4&i10c.encReferrer= 



Videos

Center for Disease Control and Prevention: Know How To Use Your Asthma Inhaler

https://www.cdc.gov/asthma/inhaler_video/default.htm

 

Mayo Clinic: Dr. Benzo Mindful Breathing Lab | https://www.mayo.edu/research/labs/mindful-breathing/videos 

 

Print 

Fielding, D. L. (2016). The COPD Solution: A Proven 10-week Program for Living and Breathing Better with Chronic Lung Disease (1st ed.). Philadelphia: Da Capo Lifelong Books.

Mahler, Donald A. Breathe Easy: Relieving the Symptoms of Chronic Lung Disease 1st Edition. University Press of New England, 2017

Martin, Jane M (2012). Live Your Life With COPD- 52 Weeks of Health, Happiness and Hope. Infinity Publishing. 

Olle, D. A. (2018). Asthma. Dulles, VA: Mercury Learning and Information.

Alzheimer’s

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Websites

 

Alzheimer’s Association | https://www.alz.org 

The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research. 

 

Planning for the Future

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Websites

 

American Association for Retired Persons | https://www.aarp.org 

 

American Bar Association: Health Care Decision Making | http://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html 

 

National Council on Aging: Benefits Check Up | https://www.benefitscheckup.org 

 

Caring.com | https://www.caring.com

Information and support geared towards seniors.

 

Five Wishes: Advanced Care Planning for You and Your Loved Ones | https://fivewishes.org/five-wishes/individuals-families/individuals-and-families 

 

My Life In A Box: A Life Organizer | https://mylifeinabox.com 

 

National Center of Law and Elder Rights | https://ncler.acl.gov

Formerly the National Legal Resource Center 

 

National Council on Aging | https://www.ncoa.org 

 

National Hospice and Palliative Care Organization: Patients and Caregivers | https://www.nhpco.org/patients-and-caregivers/ 

 

National POLST Paradigm | https://polst.org

Encourages patients and their health care professionals to talk about what patients want at the end of life. The patient and his/her health care professional make informed, shared decisions about treatments and complete a POLST form, which is a portable medical order that emergency personnel can follow if the patient has a medical emergency and can't speak for himself/herself.

 

National Resource Center on Psychiatric Advance Directives | https://www.nrc-pad.org/ 

A psychiatric advance directive (PAD) is a legal document that documents a person’s preferences for future mental health treatment, and allows the appointment of a health proxy to interpret those preferences during a crisis. PADs are used when a person becomes unable to make decisions during a mental health crisis.

 

U.S. Department of Housing and Urban Development: Home equity conversion mortgages for seniors | https://www.hud.gov/program_offices/housing/sfh/hecm/hecmhome

 

U.S. Department of Veterans Affairs: Directory of Veterans Service Organizations | https://www.va.gov/vso/ 

 

Print

Cullen, M., Irving, S. (2018). Shae Irving. Get It Together: Organize Your Records So Your Family Won’t Have To (Eighth edition). Berkeley, CA: Nolo.

  • - Provides a complete system for structuring and organizing your information and documents into a records binder, including helpful content, resources, and step-by-step instructions, as well as downloadable forms.

 

Kübler-Ross, E. (2014). On Death and Dying. New York: Simon & Schuster.

  • - This book explores the five stages of death: denial and isolation, anger, bargaining, depression, and acceptance. Through sample interviews and conversations, Kübler-Ross  gives readers a better understanding of how imminent death affects the patient, the professionals who serve that patient, and the patient's family.

 

Rosen, H. (2015). My Family Record Book: The Easy Way to Organize Personal Information, Financial Plans, and Final Wished for Seniors, Caregivers, Estate Executors, etc. Rosen Books.

  • - A complete step-by-step guide to help you keep track of and organize: final wishes and arrangements, computer information and passwords, estate planning documents, employment records, insurance policies, tax records, retirement accounts, government benefits, real estate records, house maintenance and more.

 

Speicher, J. H. (2019). Before and After: A practical guide for what to do and not to do before and after a loved one dies. Lafayette, CA: Big Hat Press.

Brain Health

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Brochures

The McKnight Brain Research Foundation 

 

Pain

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PDF Booklet

Toolkit for Managing Persistent Pain | https://www.act-center.org/

The Toolkit for Managing Persistent Pain was written by and for people living with chronic pain. Many people using this toolkit work with their health care teams to manage opioid treatment. Some are using other medicines or alternative treatments to manage their pain. This toolkit talks about both and is intended as a useful resource for everyone experiencing persistent pain, no matter what treatment methods they are using or where they are in their pain journey.

 

Websites

American Chronic Pain Association | https://www.acpanow.com/

Peer support and education in pain management skills to people with pain, family and friends, and health care professionals. Use the Resources tab in the main menu.

 

Pacing and Planning

 

The Pain Toolkit | https://www.paintoolkit.org 

A pain self-management resource based on the Pain Toolkit, a simple information booklet by Pete Moore. 

 

Print

Butler, D., Moseley, G. (2013) Explain Pain. Noigroup Publications. 

Darnall, B. (2014). Less Pain, Fewer Pills: Avoid the Dangers of Prescription Opioids and Gain Control Over Chronic Pain. Boulder, CO: Bull Publishing Company.

LeFort, S. M., Webster, L., Lorig, K., Holman, H., Sobel, D. S., Laurent, D., … Minor, M. A. (2021). Living a Healthy Life with Chronic Pain, 2nd Edition. Boulder, CO: Bull Publishing Company.

 

Videos

Understanding pain & what to do about it in less than 5 minutes https://www.youtube.com/watch?v=cLWntMDgFcs&t=129s

- Joint Pain Education Project video from the Defense & Veterans Center for Integrative Pain Management (DVCIPM) to learn more about chronic pain management.

Opioids

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Website

National Institute on Drug Abuse: Opioids | https://www.drugabuse.gov/drugs-abuse/opioids 

 

Mayo Clinic: How Opioid Addiction Occurs | https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/how-opioid-addiction-occurs/art-2036037

 

US Department of Health and Human Services: What are Opioids? | https://www.hhs.gov/opioids/prevention/index.html

 

Print

Darnall, B. (2014). Less Pain, Fewer Pills: Avoid the Dangers of Prescription Opioids and Gain Gontrol Over Chronic Pain. Bull Publishing Company.

Darnall, B. (2016). The Opioid-Free Pain Relief Kit: 10 Simple Steps to Ease Your Pain. Bull Publishing Company. 

 

 

Mobility Aids / Special Equipment

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Websites

ACL (Administration for Community Living) Assistive Technology: Tools to Improve the Everyday | https://acl.gov/AT

- This page contains links to Assistive Technology programs in your state and provides information on the right type of AT for your needs, financial assistance, and insurance.

 

Multiple Sclerosis Society: Guide to Medical & Assistive Equipment Resources

Medical & Assistive Equipment | National Multiple Sclerosis Society (nationalmssociety.org)

Multiple Sclerosis Society: Assistance for Adaptive Equipment

Assistance for Adaptive Equipment | National Multiple Sclerosis Society (nationalmssociety.org)

 

Multiple Sclerosis Society: How to Choose the Mobility Device that is Right for You (.pdf)

Brochure-How-to-Choose-the-Mobility-Device-that-is-Right-for-You.pdf (azureedge.net)

 

Multiple Sclerosis Society: All Brochures on a variety of topics in English and Spanish

All Brochures | National Multiple Sclerosis Society (nationalmssociety.org)

 

Christopher and Dana Reeve Foundation: Home Modification | https://www.christopherreeve.org/living-with-paralysis/home-travel/home-modification

 

Eldercare Locator: Assistive Technology | https://eldercare.acl.gov/Public/Resources/Factsheets/Assistive_Technology.aspx

 

NICHD Information Resource Center: What are some types of assistive devices and how are they used? | https://www.nichd.nih.gov/health/topics/rehabtech/conditioninfo/device

 

MedlinePlus

 

Mayo Clinic: Tips for Choosing and Using Canes | https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/multimedia/canes/sls-20077060?s=6

 

National Institute on Aging: Home Safety and Alcheimer’s Disease | https://www.nia.nih.gov/health/home-safety-and-alzheimers-disease

 

National Institute on Deafness and Other Communication Disorders (NIDCD) | https://www.nidcd.nih.gov/health/assistive-devices-people-hearing-voice-speech-or-language-disorders 

- Assistive Devices for People with Hearing, Voice, Speech, or Language Disorders

 

Videos

Clinic Excellence Commission (Australia): Falls Prevention - Safe use of Mobility Aids - Walking stick | https://www.youtube.com/watch?v=4RB7OZ5KVyk 

 

National Center on Health, Physical Activity and Disability: How to Choose a Wheelchair | https://www.youtube.com/watch?v=Xc1aDJgdzzk&list=PLwMObYmlSHaM3ILerLzVBh5T11XygRVnS&index=2&t=0s

 

Other

A Family and Caregivers Guide to Home Safety for the Disabled | https://www.safehome.org/resources/family-caregivers-guide-safety-disabled/

 

Muscular Dystrophy Association: Everyday Life with ALS A Practical Guide | https://www.mda.org/sites/default/files/publications/Everyday_Life_with_ALS_P-532.pdf

* From 2005. Might be a little outdated

Mindfulness, Meditation & Imagery

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Websites

 

National Institute of Mental Health | http://www.nimh.nih.gov/

Lead federal agency for research on mental disorders

 

Print

Boroson, M. (2009). One-Moment meditation: Stillness for People on the Go. Winter Road Publishing. 

Goldstein, E., & Stahl, B. (2015). Mbsr every day: daily practices from the heart of mindfulness-based stress reduction. Oakland, CA: New Harbinger Publications, Inc.

Kabat-Zinn, J. (2018). Falling Awake: How to Practice Mindfulness in Everyday Life. New York, NY: Hachette Books.

Kabat-Zinn, J. (2012). Mindfulness for beginners: reclaiming the present moment--and your lifeBoulder, CO: Sounds True.

Kabat-Zinn, J. (2018). The healing power of mindfulness: a new way of being. New York, NY: Hachette Books.

 

Video

Martin Boroson: One-Moment Meditation: How to Meditate in a Moment | https://www.youtube.com/watch?v=YiC8ktpev30 

 

Other

Health Journeys: Audio library | https://www.healthjourneys.com/audio-library

- Guided imagery audio CDs and MP3s programs for stress, sleep, successful surgery, diabetes, depression, anxiety, smoking, pain and more.

Regan, Catherine. and Rick Seidel. Relaxation for Mind and Body: Pathways to Healing [audio CD]. Boulder, Colo.: Bull Publishing, 2012.