Expert tips on managing deep brain stimulation at home during the COVID-19 crisis

The COVID crisis has exposed a blindspot in the care of patients with deep brain stimulation. Widespread social distancing, quarantines and stay at home orders have left many patients and families frantic for care. Some countries, such as China (prior to COVID-19) have developed and deployed telemedicine programming for deep brain stimulation. This technology has the potential to reach patients within the home setting and can be useful to treat many of the symptoms of Parkinson’s disease, dystonia and essential tremor. In the USA and in other regions of the world patients are left to manage with their handheld “remote” controls which have limited functionality. I was able to sit down with one of the best and most experienced DBS programmers in the world, Pam Zeilman, APRN for an interview- and to get her best tips on DBS management for everyone stuck at home because of COVID.

Who is Pam Zeilman?

• Pam Zeilman manages the DBS practice at UF Health which has (with Kelly Foote the neurosurgeon) implanted over 2000 DBS leads.

• She is an advanced nurse practitioner who manages exclusively DBS patients.

• She also manages the largest DBS troubleshooting practice in the world— with patients travelling from all over the world to benefit from her expertise.

• Pam Zeilman is renown for her DBS programming experience, and is the co-author of the Parkinson’s Foundation’s free book on Surgical Options for Parkinson’s Disease which has been distributed to tens of thousands of DBS patients.

• We were fortunate sit down with her to learn about her best pearls for practice and how she manages all the devices from all of the companies.

• She also taught us the tips to handle Medtronic, Abbott or Boston Scientific hand held home remote controls.

What do you tell all patients with DBS devices about managing the device from home using a remote?

I start by going over the basics with each patient and family member. The conversation is usually driven by the diagnosis for the individual patient.

For Both Parkinson and essential tremor patients I advise the following: 

• Not all providers or centers will provide their DBS patients with groups or programs.  Check with your DBS provider on the options they have provided for your DBS system.  If there are issues with memory or impulsive behaviors, for example, then a patient may only be offered one setting (for safety purposes).

• For the Medtronic or Boston Scientific devices, patients can be provided up to 4 groups or individual programs that they can try between clinic visits in the comfort of their own home.  The Abbott system can facilitate up to 16 programs, however most providers will not provide this many options.   Some patients can be offered to change other aspects of their settings (e.g. frequency), however this option also varies from institution to institution.

• We prefer you stay on a setting for 1 - 2 weeks to determine if the setting is helping you.

• Only switch the setting prior to 1 - 2 weeks of duration if you are having a side effect from that setting.

• If the setting you are on is not helping you to the extent you were hoping for then you can try one of the alternative settings between now and your next visit to the clinic.

• If you are not sure if the setting is causing the side effect, you can always turn the DBS OFF or deactivate the device.  If the adverse symptom is still present then it is likely NOT the DBS setting that is causing the particular bothersome symptom.

• Take a few minutes and write one or two lines about what you liked with an individual setting (group) and what you did not like. This will help us to determine future alternative settings.

• Once an optimized setting is uncovered you will stay on that setting and you will not need to change between groups.

• Walking, talking and thinking are rarely improved by DBS settings, so be careful not to obsess with changing settings when attempting to treat these difficult to address symptoms.

For Parkinson patients with DBS I advise:

• Keep the DBS on all the time.  You can turn the DBS off if you believe the device is causing a side effect or alternatively making you worse. 

Exclusively for essential tremor patients with DBS I advise:

• We ask patients keep their DBS on 24/7 (all the time) for the first 6 months.  After 6 months patients may choose to turn the DBS off at night to conserve DBS battery life.  Some patients sleep just as well with the DBS off.  Other patients tell us that they sleep better with the DBS on.  You may keep the DBS on when you sleep if you think it is helpful.

• You can turn the DBS off if you believe the device is causing a side effect or making you worse. 

For all DBS patients I advise:

• If your doctor wants to perform an EKG you should turn the DBS off so that it will not cause interference for interpretation of the EKG tracing.

For surgical procedures I advise:

• You should turn the DBS off.  Many providers also prefer that the device also be set to zero volts or milliamps.

• Ask you DBS provider for a letter for your doctor detailing device management during surgical procedures . 

What about CT scans and X-rays, do I turn the device off?

• CT Scans and x-rays are okay and the device can remain activated.

How about diathermy and ultrasound with DBS?

• Absolutely no diathermy (heated ultrasound or therapeutic ultrasound- ultrasound used as a treatment and not for diagnosis of a problem) 

• Physical therapists or Chiropractors may occasional offer diathermy.

• Regular ultrasounds for diagnosis are okay and considered safe.

What should I do if I have DBS and a MRI?

• There are special precautions regarding MRI’s, and these vary from patient to patient as to whether they can or cannot have a MRI.   Some DBS devices are compatible with DBS and others are not.  You should check with your DBS provider whether you can or cannot have MRIs.

• Ask your practitioner about the regulatory agency approval of a MRI performed with your particular device (e.g. in the USA the FDA). For example Abbott, Medtronic and Boston Scientific all may have slightly different recommendations. Your provider would be the best resource to interpret this information.

• The MRI should be performed at a center familiar with DBS and MRI protocols.   Not all imaging centers can perform MRIs in DBS patients.

• Any patient that has had a Medtronic Soletra, Kinetra, Activa SC 37602 or pocket adaptor can only have a MRI of the brain (with certain precautions, and cannot have 3T MRI; and the DBS has to be in the OFF condition) and only if the DBS impedances are within a certain range.

• Any patient with an Activa SC 37603, an Activa PC, or an Activa RC without a pocket adaptor can have a MRI of any body region (with certain precautions, cannot have 3T MRI and the DBS has to be in the OFF position) and only if the DBS impedances are within a certain range.

• Impedances of the DBS have to be checked prior to MRI - if the impedance’s are not within a certain range then you cannot have the MRI.  Sometimes if you have had a recent visit to check your DBS this is sufficient but up to your DBS provider.

• Abbott and Boston Scientific both have DBS systems that do not allow for MRI imaging and some systems that do allow for MRI imaging.  You must check with your DBS provider if you specific system is MRI eligible.  Impedances have to be within normal limits as well. 

• The patient cannot check their own impedances with their DBS patient programmer.  In most cases DBS impedances have to be checked by a DBS provider with a DBS programmer.

• Rarely, a physician will make a recommendation for a 3T image weighing the risks and benefits of this procedure for an individual patient. For example, the provider may be looking for a small stroke or vascular malformation.

What do I tell dystonia deep brain stimulation patients?

• We prefer if possible for dystonia DBS patients to stay on a setting for 4 weeks to determine if the setting is helping you.

• Some dystonia patients will have worsening of their dystonic symptoms after programming in the clinic.  Sometimes the worsening is because the brain is fighting the “positive changes” and the brain being “reset.” In other words the DBS can flare the dystonia in some cases but if you wait it may actually get better.

• This makes dystonia programming tricky. Most commonly, dystonia may worsen when the DBS setting is “too high.”  The worsening can actually look the same for both groups of patients (some get better with time and some get worse). 

• The patients who end up with worsening due to the setting being optimal often report that the worsening lasts about 2 weeks and then slowly improves; it may continue to improve over time without even changing the setting. 

• The patients who experience the worsening from the setting being too high report that after 2 weeks the worsening is still the same— and there is no slow improvement.

• If you have a worsening but can tolerate the symptoms, we ask patients to try to stay on the DBS setting for a week or two  If they no improvement then we recommend changing the DBS setting. 

• Dystonia patient DBS programming can take 6 to 18 months of active once a month programming before the optimal setting is uncovered.

• Some dystonia patients (especially if they are on high DBS settings) if they decide to turn their DBS off for several hours or more, when they re-activate the device they may experience extreme painful pulling that may or may not resolve. 

• For this reason we recommend you do not turn the DBS off in most cases of dystonia DBS.  If the DBS does need to be turned off, then ask your DBS provider to set the device to give your handheld home remote a voltage range. This range will allow you to dial the voltage down to a lower level prior to deactivating the DBS. When you decide to turn the DBS back on, you will have less of a chance of experiencing an uncomfortable sensation. You will then be able to aslowly increase the voltage back to the therapeutic DBS setting.

The DBS programming clinician can set “groups/programs” so I can click a button and try different pre-set parameters in the comfort of my home. It is like the pre-sets on a FM radio. How does it work?

For the Medtronic Device:

Directions for changing DBS groups:

1. Press small round white button

2. Press orange check button, place over battery in your chest

You will see a flashing man on remote, place over battery in your chest.

The remote communicates with the DBS in your chest if the remote screen is facing outwards. The remote needs to be directly over the device in your chest. Do not move the remote around too much or it will not communicate with the device in your chest.

If you see this screen the remote did not talk with the device in your chest. Press the orange check button again and place remote over the battery in your chest.

The remote communicates with the DBS in your chest if the remote screen is facing outwards. The remote needs to be directly over the device in your chest (above). Do not move the remote around too much or it will not communicate with the device in your chest.

Device communication failure

If you see this screen (above) the remote did not talk with the device in your chest. Press the orange check button again and place remote over the battery in your chest.

Remote

“Not Communicating”

If you see this screen (above) the remote did not talk with the device in your chest. Press the orange check button again and place remote over the battery in your chest.

3. Use down direction button to toggle box to be around the Group letter (above).

4. Press the left or right direction button to go to Group choices.

Press right or left

to toggle groups

See a doctor face?

You went too far!

If you see a doctor face, you have gone too far, press button to the left to go back (above).

5. You should be at the screen with the Letters only showing:

Letters only

showing

The letter that has a check in the box is the current group that is activated (above):

6. Move the box to choose which group you would like (A, B, C, D) (see below):

7. Press the orange check button to activate the new group, place remote over battery in your chest (below).

You will see a flashing man on the remote; place it over the battery in your chest.

Look for the flashing man

Turn off remote

8. Press the small round white button. The remote should now be off (above).

How do I increase or decrease the voltage on my Medtronic device if my practitioner activates that capability?

1. Press small round white button
2. Press orange check button and hold remote over battery in your chest
You will see a flashing man on remote, place over battery in your chest
3. Press button under voltage reading what you desire to change
4. Press the (-/+) button each time until you are at the voltage you would want the device to be at. With each change must hold remote over battery in your chest. You can only change the voltage within a certain range. If you try to decrease or increase beyond the range provided you will see a symbol indicating you cannot adjust any further.
The + button will increase the voltage and the - button will decrease the voltage. Every time you adjust the voltage you will need to place the remote back over the device in your chest.
If you see this screen you have reached the limits you are allowed to go up or down on the the voltage
5. Once at the desired voltage press the left or right direction button to get back to the main screen
6. Press the small round white button. The remote should be off.

How do I simply turn on the Medtronic DBS with my remote?
1. Press small round white button
2. Press orange check button and place remote over battery in your chest
The device will show a flashing OFF
3. Press the white button in the top left corner, place remote over battery in your chest. The DBS should now be ON
4. Press the small round white button. The remote should be off.

How do I simply turn off the Medtronic DBS with my remote?
1. Press small round white button
2. Press orange check button and place remote over battery in your chest
The device will show a solid ON
3. Press the white button in the top left corner, place remote over battery in your chest. The DBS should now be OFF
4. Press the small round white button. The remote should be off.

Medtronic has a new Samsung DBS Programmer that works on a smartphone. How does it work?

Here is the link to Medtronic web site where you can find videos of how to use the Samsung Patient Programmer

There is also a tutorial on the phone itself.
This new programmer seems to be easier to use for patients who have learned how to utilize it.

I have an Abbott DBS device. How do I use my Abbott home remote control to adjust and check my DBS settings (previously St. Jude Medical™)?

There is a free book online that shows you how to download and to use the St.Jude/Abbott Remote DBS Control.

1. To turn your St. Jude Medical™ Patient Controller on press and hold the Power button until the Apple logo™ appears.

2. Slide your finger left to right to unlock the screen.

3. If you do not see the screen press the Home button to access the Home screen (Figure 12, 13).

4. Make sure that Bluetooth® wireless technology is enabled on the device. You can turn Bluetooth® settings on/off in the Settings.

How do I connect to my Abbott DBS device using my home remote controller?

1. Tap the Patient Controller icon on the Home screen to launch the app (see Figure 1). Your St. Jude Medical™

Patient Controller app will automatically connect to your generator (Figure 13).

2. If you have two generators, select the generator you want to connect with from the list (see Figure 2).

When selecting icons on an Apple™ mobile digital device, please use a short, light touch. Pressing on an application longer than one second can result in moving or possibly
deleting the application.

How do I start and stop stimulation with my Abbott remote control device?

Start and stop stimulation by tapping on the Therapy is ON or Therapy is OFF button on the Therapy screen (see Figure 14).

How do I adjust the strength of the DBS with the Abbott home remote patient controller for DBS?

The Strength button shows the current stimulation strength level. Tap the Strength button to adjust the stimulation level.

1. Tap Strength on the Therapy screen to open the Strength screen. On the Strength screen you can adjust the strength for the selected side (see Figure 16).

2. Tap on the - or + buttons to increase or decrease strength levels until you feel a comfortable level of stimulation (see Figure 17).

3. The number and green bar will increase or decrease as you increase or decrease strength (see Figure 5).

How do I view and select a DBS program with my Abbott remote patient controller?

Tap the program name on the Therapy screen to open the Programs screen. On the Programs screen you can view and select any of the saved programs (see Figure 15). To switch between the saved programs:

1. Either swipe the screen right or left, or tap the right or left arrows.

2. When you locate the program you want to activate, tap Select This Program.
Turning off your Abbott Patient Controller

How do I use the patient remote to turn off my Abbott DBS?

When you’re finished adjusting your therapy, press the Power button to close the session (Figure 18). Your Abbott Patient Controller can be reactivated quickly if you want to make changes to the program.

If you press down on the Power button for more than a second, you can turn your device off completely. The device will continue delivering the therapy you’ve selected until you turn your device back on and make changes. Next time you want to use it, it will take a couple of minutes to turn back on.

To turn your Abbott Patient Controller off, press and hold the Power button until the “Slide to Power Off” bar appears and then slide the bar to the right.

I have a Boston Scientific DBS Device, How do I use the home remote controller?

Boston Scientific Vercise RC & PC  – How to use your Vercise DBS remote control is covered in a video on Youtube: How to use Boston Scientific Deep Brain Stimulation Home Remote Controller

Boston Scientific Vercise RC & Vercise Gevia RC charging video – How to charge your Vercise & Vercise Gevia DBS system

Boston Scientific Vercise RC & Vercise Gevia RC charging video – Patient experience with recharging Vercise & Vercise Gevia DBS system.

Boston Scientific Vercise Genia RC & PC  – How to use your Vercise Gevia DBS remote control.

To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #EndingPD #ParkinsonPACT #Parkinsonsecrets and https://www.tourettetreatment.com/