You’ve checked them out, and they have checked you out. You finally qualify as a suitable candidate for Deep Brain Stimulation (DBS) for Parkinson’s Disease, and you have decided to proceed. Now what do you do while waiting?
Get your support team in place once you have an idea about your surgery timetable. Assign someone the task of reporting back to others about your progress either by phone or by email. Have someone bring a lap top computer to send emails. Make sure that you have friends or supportive relatives during the long surgery days to accompany your spouse or loved one.
Read the article, Coping Tips from the Front Lines by Joel Davis, which includes ideas on being your own advocate.
Find out your doctor’s plan for the programming of your DBS, and occupational, physical and speech therapy if required post-DBS.
Consider listening to “getting ready for surgery” CDs for a week or two before surgery, particularly if you think you might benefit from imagery, visualization and affirmations.
If you are the kind of person who relaxes with music, ask your neurosurgeon if you can bring your carefully chosen CDs to play during surgery (particularly during the “brain part” where there is no anesthesia and only mild sedation). Be considerate of the surgery staff that must listen to your music during surgery (e.g., suggestion: no hard rock).
At any time during the surgery process and your hospital stay you don’t understand, stop the medical person until you do understand.
Don’t be afraid to ask the medical staff for what you want/need during surgery and during your hospital stay. For example, if you are on a special diet, let them know your preferences so that they can accommodate you. Sometimes your wants and needs can easily be met if they are known.
Ask your doctor’s advice on what medications to stop before surgery (e.g., some advise stopping Eldepryl (Selegiline) and Azilect two weeks before surgery).
Ask your doctor his/her opinion about taking Tenormin (Atenolol) for two weeks before and two weeks after your surgery. Some physicians prescribe it on a temporary basis as a heart-stroke protector during surgery.
If you have an overall positive experience during surgery and your hospital stay, let the medical staff know either immediately or later in writing when you are home from the hospital. Yesterday I observed a DBS patient expressing appreciation to the pre-surgery nurse for how painlessly she started her IV. The nurse seemed surprised but pleased by the patient’s comments. In the 30+ plus years she had been a nurse, she probably has received more criticism from cranky patients than praise. Pay attention to names of staff and volunteers that provides good customer service, and send a note of appreciation to them and their supervisor once you get home.
If you are traveling from out of town for the surgery:
Check with your insurance company and physician to determine if you can be admitted to the hospital the night before surgery to reduce the stress of rushing in the morning traffic to make it to surgery on time.
Check with the volunteer services/social services department at the hospital to find out if they have a list of reduced-cost lodging for your caregivers/support team to stay. If you are in need of assisted living in between surgeries, they may be able to help you with this as well. As a general rule, the volunteer services offices can be of assistance in many ways, with ideas on how to resolve almost any problem you might encounter during your hospital stay.
Before you return home, make sure that you have all your hospital records in your possession, e.g., history and physical, operation reports, discharge reports, programming and the DBS reports. It is much easier to obtain these reports in person before you leave, than trying to retrieve them from a distance by phone or mail.
And finally for all patients, I am reluctant to say this, but consider lowering your expectations. If you receive any benefit from DBS, that’s a plus. I have a tendency to be greedy and would like 100% improvement so I constantly have to remind myself that I still have Parkinson’s.
Once you feel physically able, consider volunteering at a hospital so that you too can provide a positive experience for future patients. From my own personal experience, I have found hospital volunteering to be a rewarding way to express my gratitude that I am “alive and kicking.”
This article is not a substitute for medical advice or care. I am merely a non-medical person reporting on my experiences living with Parkinson’s Disease and Deep Brain Stimulation surgery. If you desire medical care or advice, please seek it from a physician.
You’ve checked them out, and they have checked you out. You finally qualify as a suitable candidate for Deep Brain Stimulation (DBS) for Parkinson’s Disease, and you have decided to proceed. Now what do you do while waiting?
Get your support team in place once you have an idea about your surgery timetable. Assign someone the task of reporting back to others about your progress either by phone or by email. Have someone bring a lap top computer to send emails. Make sure that you have friends or supportive relatives during the long surgery days to accompany your spouse or loved one.
Read the article, Coping Tips from the Front Lines by Joel Davis, which includes ideas on being your own advocate.
Find out your doctor’s plan for the programming of your DBS, and occupational, physical and speech therapy if required post-DBS.
Consider listening to “getting ready for surgery” CDs for a week or two before surgery, particularly if you think you might benefit from imagery, visualization and affirmations.
If you are the kind of person who relaxes with music, ask your neurosurgeon if you can bring your carefully chosen CDs to play during surgery (particularly during the “brain part” where there is no anesthesia and only mild sedation). Be considerate of the surgery staff that must listen to your music during surgery (e.g., suggestion: no hard rock).
At any time during the surgery process and your hospital stay you don’t understand, stop the medical person until you do understand.
Don’t be afraid to ask the medical staff for what you want/need during surgery and during your hospital stay. For example, if you are on a special diet, let them know your preferences so that they can accommodate you. Sometimes your wants and needs can easily be met if they are known.
Ask your doctor’s advice on what medications to stop before surgery (e.g., some advise stopping Eldepryl (Selegiline) and Azilect two weeks before surgery).
Ask your doctor his/her opinion about taking Tenormin (Atenolol) for two weeks before and two weeks after your surgery. Some physicians prescribe it on a temporary basis as a heart-stroke protector during surgery.
If you have an overall positive experience during surgery and your hospital stay, let the medical staff know either immediately or later in writing when you are home from the hospital. Yesterday I observed a DBS patient expressing appreciation to the pre-surgery nurse for how painlessly she started her IV. The nurse seemed surprised but pleased by the patient’s comments. In the 30+ plus years she had been a nurse, she probably has received more criticism from cranky patients than praise. Pay attention to names of staff and volunteers that provides good customer service, and send a note of appreciation to them and their supervisor once you get home.
If you are traveling from out of town for the surgery:
Check with your insurance company and physician to determine if you can be admitted to the hospital the night before surgery to reduce the stress of rushing in the morning traffic to make it to surgery on time.
Check with the volunteer services/social services department at the hospital to find out if they have a list of reduced-cost lodging for your caregivers/support team to stay. If you are in need of assisted living in between surgeries, they may be able to help you with this as well. As a general rule, the volunteer services offices can be of assistance in many ways, with ideas on how to resolve almost any problem you might encounter during your hospital stay.
Before you return home, make sure that you have all your hospital records in your possession, e.g., history and physical, operation reports, discharge reports, programming and the DBS reports. It is much easier to obtain these reports in person before you leave, than trying to retrieve them from a distance by phone or mail.
And finally for all patients, I am reluctant to say this, but consider lowering your expectations. If you receive any benefit from DBS, that’s a plus. I have a tendency to be greedy and would like 100% improvement so I constantly have to remind myself that I still have Parkinson’s.
Once you feel physically able, consider volunteering at a hospital so that you too can provide a positive experience for future patients. From my own personal experience, I have found hospital volunteering to be a rewarding way to express my gratitude that I am “alive and kicking.”
This article is not a substitute for medical advice or care. I am merely a non-medical person reporting on my experiences living with Parkinson’s Disease and Deep Brain Stimulation surgery. If you desire medical care or advice, please seek it from a physician.