Top 10 recommendations for PWPs and Care Partners For PWPs:

  1. Be sure your doctor is a movement disorder specialist/neurologist (MDS/MDN). Even if your doctor is a neurologist, this does not mean that he or she has the experience or education with movement disorders that will enable him or her to provide the specific care that you need. Visit www.pdf.org/en/yy_doctorDocument1 for a list of MDSs in your state. If your insurance company prevents you from seeing an MDS, let them know that this is a serious problem for you and seek a referral. If you cannot find or get access to one, let your local support group leaders know so they can report it to the regional PD organization for follow-up. If you have this type of insurance company problem, or if there are no MDSs located in your area, find a neurologist who has demonstrable experience in working with PD.
  2. Exercise. There are many things related to PD that are beyond your control. Getting regular exercise is something you can control that can make a big difference in your symptoms and your quality of life. Establish a plan with your MDS that is appropriate based on your age and condition. Try to choose exercise that you enjoy. Remember that physical and mental exercise are equally important!
  3. Participate in clinical research trials. When you do this, you accomplish two things. First, you help with the advancement of knowledge that will lead to a cure. Second, you learn things that may help you. Information on specific studies, including availability, location, and timing of research trials, visit https://foxtrialfinder.michaeljfox.org/.
  4. Learn everything you can about PD. This applies to both PWPs and care partners. By doing this, you will have a better idea of what to expect in terms of symptoms and progression. Also, it will enable both of you to advocate for yourselves, ask informed questions, and become active/proactive in the management of your health. Try Googling any combination of "Parkinson's" and "_________" (fill in the blank with any topic of interest, such as fatigue, non-motor symptoms, or cognition). Choose relatively current articles by recognizable organizations for the most reliable information.
  5. Prepare for your MDS appointments. Remember that MDSs are very busy individuals who want to provide you with the best care possible. Help make the limited time you have together in appointments productive by preparing a list that includes:
    • Your current list of prescriptions, including dose size and times/day you take that dose.
    • Your current list of supplements, including dose size and times/day you take that dose.
    • List of current symptoms in order of how troublesome they are to you. Use bold type to identify the most troublesome symptoms.
    • A list of observations/information regarding your condition or any changes that you want your MDS to know about. Record on/off fluctuations, episodes of dyskinesia, and whether they occur at the peak or end of the medication cycle.
    • A list of questions regarding your condition, symptoms, treatment, medications, alternative therapies, or new developments you have heard about that may apply to you. It is extremely important that you and your care partner give this careful thought in advance. By organizing for your appointment this way, there should be adequate time to have all your questions answered. If your care partner is unavailable to attend the appointment, then choose a friend or relative to accompany you. It's important to have two sets of eyes and ears and someone to take notes.
  6. If you are not comfortable with your MDS for any reason, talk to him or her about it. If you don't understand your treatment plan, can't get answers to your questions, can't obtain needed referrals, are unable to communicate with your MDS between appointments in a reasonable manner, or anything else, talk about it. Be a polite squeaky wheel. If you are unable to resolve problems that are important to you, find another MDS! Your number-one obligation is to yourself and your care partner.
  7. Attempt to "live in the moment" as much as possible. Learn from the past and move on. Plan for the future, but do not dwell on the uncertainty that it surely contains. I know that this is easier said than done. In my case, I rely on my faith for reassurance and guidance.
  8. Set meaningful goals and work to accomplish them. If this has always been your approach, continue it. If it has not, resolve to start. There is no shortage of opportunities, as we all know. Choose from things like reaching out to help others, treating your care partner with patience and respect, maintaining wellness, getting exercise (physical and mental), writing a memoir, attending seminars, participating in clinical research studies, participating in PD fundraisers, attending support group meetings, attending church or otherwise engaging your faith, and many more. Make your goals as specific as possible and make sure you are prepared and able to do what is required to accomplish them. Hold yourself accountable and ask your care partner to do the same.
  9. Stay in touch with your passions. Some of the non-motor problems associated with PD can include depression, anxiety, and apathy. You may be able to reduce these kinds of issues by engaging in activities that have been important to you in the past. If they involve physical or mental challenges you are no longer up to, try modified versions or seek new activities related to your passion (such as listening to music or attending concerts if you are no longer able to sing or play an instrument). Resolve to stay engaged with family and friends. It is okay to give yourself permission to have a "down day" once in a while, but don't stay there.
  10. Continue to seek and live your "personal truth" without trying to force it on others. I picked up this concept in a book titled Wisdom of the Ages by Wayne Dyer. That book speaks to the desirability of each individual taking ownership of what they choose to believe and let these choices, not the opinions or positions of others, guide how they live their lives.

For Care Partners:

  1. Live in the moment
    • Learn from the past and plan for tomorrow, but live for today. What do you believe in and what matters most to you? Do your actions reflect your beliefs and priorities? Talk about these things with your care partner and discuss any changes you might want to make as part of a plan for the future.
    • Don't put off those activities that you have talked about doing "some day."
    • Make time for fun.
  2. Communicate
    • It is crucial to keep the lines of communication open. Tell each other what you are thinking and feeling.
    • Share the things you are worried about and problem-solve together. Express your love for each other frequently.
    • Catch each other doing little things that provide an opportunity to express appreciation.
  3. Learn
    • Learn as much as you can about PD and related issues.
    • Stay engaged by participating in support groups and seminars.
    • Participate in clinical research trials with your partner, in order to help yourselves as well as others.
    • Understand and accept that PD is a moving target and that your partner's evolving condition/needs—as well as your own—will require flexibility and adaptation.
  4. Advocate for your partner and yourself
    • Accompany your partner to all medical appointments to get and provide first-hand information about what your partner is experiencing as well as being a second set of ears.
    • Because it is typical for your partner to have executive function problems, take notes regarding important details.
    • Ask questions, voice thoughts and ideas, and ask for clarification of anything that is unclear.
  5. Take care of yourself
    • Ask for help. Solicit assistance as needed from family members and/or friends.
    • Make time for yourself. Stay engaged with your passions.
    • Attend to your personal wellness.
  6. Faith
    • Our belief that we will be equipped to deal with whatever happens is extremely comforting to Linda and me. Staying committed to that idea over time requires faith.
    • Faith provides an opportunity to let go of fear about the future over which we have no control, and focus on the things we can control.
  7. Patience
    • PD mood swings and/or cognitive problems can be very hard on relationships. No matter how good your communication, it is likely that your partner will sometimes act or react in ways that are not tactful or appropriate. Try very hard not to take these things personally.
    • At a later time, communicate about what happened.
    • Don't let an individual episode create a rift between you.
    • Talk with your partner's MDS about any ongoing concerns.
  8. Balance
    • Your "PD life" takes place in the context of your overall life. It will be beneficial for both of you to keep the two integrated and balanced as much as possible.
    • As the disease evolves, your partner's physical and mental abilities will change and may be influenced by depression, anxiety, or apathy.
    • Based on your knowledge of your partner, you can experiment with different strategies to encourage exercise, keep him or her engaged mentally and socially, discourage driving, and more. Keep your MDS in the loop and ask for suggestions.
    • Care partner/PWP breakout sessions in support group meetings are a good opportunity to share concerns and get suggestions.
  9. Be prepared to make tough choices
    • Despite your best efforts, there may be a time when you are no longer able to cope with your partner at home by yourself.
    • Explore options (preferably with your partner) such as assisted living, residential facilities, or in-home care/services so that you can make an informed decision if and when the time comes.
    • Do not suffer in silence or feel compelled to go down with the ship. Talk to your MDS, support group friends, and family members as necessary.
  10. Perspective
    • Continue to find the joy in your lives and the love in your relationship.
    • Celebrate the small victories.
    • Be happy whenever possible.
    • Do NOT let PD own you!

Colorado & Wyoming PD events/support groups/services/research updates


PD Information Resource List

  1. Michael J. Fox Foundation (www.michaeljfox.org)
  2. Parkinson Disease Foundation (http://www.pdf.org/)
  3. National Parkinson Foundation (www.parkinson.org)
  4. Deep Brain Stimulation Information: (http://www.medtronic.com/patients/parkinsons-disease/therapy/index.htm) and DBS-STN.org (http://www.dbs4pd.org/)
  5. Care partner information and resources: (http://www.pdf.org/en/caregiving_fam_issues?gclid=CJaj6ZSpmLYCFYpDMgod3j0ALA)
  6. Muhammad Ali Parkinson Center Movement Disorder Clinic (http://www.thebarrow.org/Neurological_Services/Muhammad_Ali_Parkinson_Center/index.htm)
  7. Davis Phinney Foundation (www.davisphinneyfoundation.org)
  8. Parkinson Association of the Rockies (www.parkinsonrockies.org)
  9. European Parkinson’s Disease Association (http://www.epda.eu.com/en/)
  10. Parkinson Society Canada (http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5842619/k.C7EB/Welcome/apps/s/custom.asp)
  11. Parkinson’s UK (http://www.parkinsons.org.uk/)
  12. Parkinson’s Australia (http://www.parkinsons.org.au/)
  13. Parkinson’s New Zealand (http://www.parkinsons.org.nz/)
  14. Northwest Parkinson’s Foundation (http://www.nwpf.org/)
  15. Young-Onset Parkinson’s (http://www.parkinson.org/Parkinson-s-Disease/Young-Onset-Parkinsons)
  16. Parkinson’s organizations and support groups in your area: (http://www.pdf.org/en/support_list)
  17. Parkinson’s movement disorder specialist referral: (http://www.pdf.org/en/yy_doctor)

Alzheimer’s & Lewy body dementia information websites

Alzheimer’s:

Lewy Body Dementia:


Recommended PD blogs


Recommended dementia blogs


Recommended reading list

  • Alexander, Eban. Proof of Heaven: Simon & Schuster, 2012.
  • Dyer, Wayne. Wisdom of the Ages: HarperCollins, 1998.
  • Fox, Michael J. Lucky Man: A Memoir: Hyperion, 2002.
  • Fox, Michael J. Always Looking Up: Hyperion, 2009.
  • Graboys, Thomas. Life in the Balance: Union Square, 2008.
  • Hawking, Stephen. A Brief History of Time: Bantam, 1998.
  • Havemann, Joel. A Life Shaken: Johns Hopkins, 2002.
  • Lieberman, Abraham. Shaking Up Parkinson's Disease: Fighting Like a Tiger, Thinking Like a Fox: Jones & Bartlett, 2002.
  • Okun, Michael S., MD. Parkinson’s Treatment: 10 Secrets To A Happier Life, Amason, 2013
  • Perlmutter, David. Grain Brain: Little, Brown, and Co., 2013.
  • Whitworth, Helen Buell. A Caregiver's Guide to Lewy Body Dementia: Demos Medical Publishing, 2011.