A list like this is meant to provide initial “patient perspective” direction for the “new kids on the block” or an opportunity for more experienced PWP’s and care partners to compare and consider their priorities. Not that my list is the “last word”, but it is based on a lot of research, support group meetings, a visit to the National Institute of Health’sNational Institute of Neurological Disease & Stroke , participation in workshops at the SE Parkinson’s Conference , and joint presentations with movement disorder specialists to support groups sponsored by the ParkinsonAssociation of the Rockies , as well as my personal experience. Talk to your movement disorder specialist (MDS) to establish a plan and priorities that are appropriate for your needs.
1. Be sure your doctor is a movement disorder specialist/neurologist (MDS). Even if your doctor is a neurologist, this does not mean that he/she has the experience or education with movement disorders that will enable them to provide the specific care you need. Visit http://www.essentialtremor.org/siteresources/apps/physicians/ for a list of MDS’s 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 obtain one, let your local support group leader 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 MDS locations in your area, locate a neurologist who has demonstrable experience 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. Visit http://davisphinneyfoundation.org/living-pd/ for helpful suggestions regarding exercise and living well.
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 www.pdtrials.org/ or https://foxtrialfinder.michaeljfox.org/.
4. Learn everything you can about PD. This applies to both PWP’s 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. For a list on online information resources, visit http://shakypawsgrampa.blogspot.com/2011/12/resource-list-donation-appeal.html. Also 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 these 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 you 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/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 him/her 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 #1 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 OK 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 terminology in a book titled Wisdom of the Ages by Wayne Dyer and have found it to be helpful. 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.