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When these become available, there may be an opportunity, if you wish, to“ upgrade” your system with a newer battery.
+ What if there’ s a Parkinson’ s cure? Many therapies now in clinical trials have the potential to slow Parkinson’ s progression. Should these ultimately be approved, there’ s no reason to believe that having DBS would prevent a person from receiving them.
Remember, too, that DBS is reversible. You can turn the device off or even remove the entire system. If another treatment is preferred to or not compatible with DBS, you can discontinue DBS. off from work to fully recover. Sick leave or, for family and loved ones, FMLA, can be used for this purpose. Your neurologist or neurosurgeon can fill out necessary paperwork.
After battery placement, you may have soreness in your chest and neck. It is best to avoid heavy upper body activity or exercise for four to six weeks.
The initial programming period, which lasts about two to three months, may also require reduced home and work responsibilities as some symptoms, like dyskinesia, can temporarily worsen until the best settings are found.
Before Surgery
+ Can I participate in research? Ask your DBS team if they are conducting research. You might be able to participate even as you pursue DBS for your personal care. Further ahead, though, many people wonder whether DBS excludes them from research. In some cases, it might. Each trial has specific criteria to ensure safety and accurate results. There’ s concern that DBS could cloud results. But a growing number of clinicians and researchers are encouraging the field to rethink this concern and allow people with DBS to contribute more broadly.
In the meantime, there are many valuable ways to give to Parkinson’ s research, whether you have DBS or not. You can fill out questionnaires about your experience, let researchers observe how your symptoms change with time, or give blood samples or have brain imaging tests. For Parkinson’ s trials that need volunteers, visit foxtrialfinder. org.
+ What about my work, home and other responsibilities? Surgery for DBS brain wire, or lead, implantation usually requires a one- or twonight stay in the hospital. Recovery from the surgery itself is typically quick. But some people may still want to take a week or more
+ What support might I need? It’ s helpful to have partners throughout the DBS process. People who care about you want to help and support you. Tell them directly and clearly how they can. Invite a close family member or friend to attend doctor visits, take notes and ask questions. Talk after each appointment to ensure you heard the same information. Have someone drive you to and from surgery and initial programming. Ask friends to help stock up on essentials and ready-to-eat meals for recovery periods. Allow loved ones to stay with you, prepare food, or pitch in on household duties following surgery.
Talk with your DBS team early and often to determine what support you might need and who can help. For some, home health and other resources may be an option, too.
+ Are my advance directives up to date? Advance directives are documents that specify who can speak for you and make medical decisions if you can’ t. They also outline what care you would or wouldn’ t want in these situations. Before any surgery or hospitalization, it’ s a good idea to create, review or update advance directives. Your doctor can supply this paperwork and answer questions about it.