This authoritative guide was created by my colleague Kirk Hall and first published on his blog shakypawsgrandpa.com. It is a wise and comprehensive list of existing resources. His advice deserves widespread attention.
This resource guide has been assembled by an experienced patient/caregiver group and members of the Parkinson’s disease (PD) medical/research community who share a common goal, which is to improve quality of life for people with Parkinson’s (PWPs), care partners, and their families. A common concern of the newly diagnosed is how to find the information that they want and need. In this brochure are links to resources that will provide helpful basic information regarding Parkinson’s, including young onset. In the future a comprehensive guide will be available that will allow you to access a wide range of additional information. If you are unable for any reason to obtain information you seek, there are services that will enable you to speak directly with someone who can help.
But first, our PWP/care partner members want to share a few things they have learned that are important for you to know:
- Give yourself some time to “process” your diagnosis. This is a major unanticipated change in your life. Do not give in to feelings of fear or anxiety! Yes, your life will be different, but you will be surrounded by many people in support groups, PD organizations, and the medical community who are dedicated to making your life better! Not to mention the support of family and friends (the same people you would support if they were going through something like this). As soon as you are ready:
- Your #1 priority is to be sure you are working with a doctor that has appropriate experience, training, and education for your condition. Do not assume that your doctor, no matter how much you may like him or her, meets this description! Not all neurologists, for example, have movement disorder expertise that will enable them to recognize the subtle symptoms of PD and recommend appropriate medications and/or therapies. If your doctor is not a good fit for you, or even if you are not sure and want a second opinion, we will provide information in our resource guide to help you locate a movement disorder neurologist in your area.
- Your #2 priority is to understand that exercise has been proven to be the single most important thing you can do for yourself to improve your condition and how you feel as well as potentially slowing the progression of the disease. It will help you stay positively engaged and fight off the apathy that some of us experience.
- Your #3 priority is to take ownership of your situation by learning about PD and how you can live well with it. This will enable you and your care partner to take an active role in the management of your condition, including providing information about your symptoms, any changes you have experienced, things that concern you, medications you are taking, other conditions you may have and more. If you have concerns, ask questions! If your doctor consistently does not take the time to answer your questions, find a new one! Your obligation is to yourself and your family!
- Your #4 priority is to locate and join a PD support group. “Test drive” one or two, if necessary, to find one that is comfortable for you and your care partner. Get involved!
- If you are in a remote area, your options may be limited. We know people who have teamed with a local neurologist working in conjunction with a movement disorder specialist that you can visit occasionally. Another option is telemedicine, which allows you to receive care using communication technology. Explore these options with your doctor to find an arrangement that works for you.
- Stay engaged! The steps above will get you moving in a positive direction. It is OK to have a bad day here and there, but own it and don’t let it turn into a bad week. You do not have to go through this alone!
Help locating a movement disorder neurologist and why this is important
- Michael J. Fox Foundation (MJFF): https://www.partnersinparkinsons.org/find-movement-disorder-specialist?cid=aff_00032
- Parkinson Disease Foundation (PDF):http://www.pdf.org/spring12_specialist
- Davis Phinney Foundation (DPF): http://www.davisphinneyfoundation.org/living-pd/10tools/?gclid=Cj0KEQjw75yxBRD78uqEnuG-5vcBEiQAQbaxSNfO0tFlTMxBMKAMkKJ6jp6-tzI7Y4nwRBFoEliVcgcaAkdv8P8HAQ
- Brian Grant Foundation (BGF): http://www.briangrant.org/
- National Parkinson Foundation (NPF): http://www.parkinson.org/understanding-parkinsons/treatment/Exercise/Neuroprotective-Benefits-of-Exercise
- Parkinson Disease Foundation (PDF): http://www.pdf.org/en/parkinson_exercise_impact
Newly diagnosed information
- Parkinson Disease Foundation (PDF):http://www.pdf.org/symptoms
- National Parkinson Foundation (NPF):http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons
- Michael J. Fox Foundation (MJFF): https://www.michaeljfox.org/understanding-parkinsons/index.html?navid=understanding-pd
- American Parkinson Disease Association (APDA):http://www.apdaparkinson.org/parkinsons-disease/understanding-the-basics/
Young onset information
- APDA: http://www.apdaparkinson.org/national-young-onset-center/
Help locating a support group (PWP & care partner)
- APDA: http://www.apdaparkinson.org/resources-support/local-resources/
Help locating a caregiver support group
- Parkinson’s Health (PH):http://www.parkinsonshealth.com/Caring-for-Someone-with-PD/Support-Groups.aspx
Talk directly to a person who can help