Parkinson telehealth pioneers on Maryland’s Eastern Shore

SALISBURY — One year ago, the first clients with Parkinson’s disease (PD) were assessed for the status of their condition by a specialist from Johns Hopkins University, without traveling across the Bay Bridge to make it happen. These pioneers in telehealth found out about the opportunity being offered by the Caregiver Resource Center at Maintaining Active Citizens Incorporated (MAC INC) and Holly Community Incorporated (HCI), at a meeting of the Lower Shore Parkinson’s Support Group.

In started in January 2013 when members of the Lower Shore Parkinson’s Support Group signed up for a free consultation with a world renown neurologist with special training in PD and other movement disorders, Dr. Ray Dorsey. Some 20 members were seen between February and July of 2013 using an internet connection similar to “Skype,” a large flat screened TV, and microphones in the studio at HCI. This was hardly the end of the story.

The first visits scheduled for consultations at HCI revealed how important telehealth could be to persons unable to travel great distances or even short jaunts to assess health conditions, let alone get regular treatment for them. A phone call that offered important information was received mid-way through scheduling the first set of appointments. The call was being made to cancel a PD appointment because the client could not drive themselves even 15 miles for this visit. It was a “bad day” for them and they were pulled over by a patrolman concerned about the risks they posed to themselves and others as they tried to make their way to this consultation. Arrangements were hastily made for transportation to and from the appointment.

The client rested more easily that night with confirmation of some of their suspicions about the mysterious tremors they’d experienced in the preceding years and expert advice on follow-up measures to be taken to neutralize the effects of PD and allow a more normal lifestyle.

Other clients able to make the appointments with the help of friends and neighbors expressed their gratitude for the consultation in varied ways. One gentleman struggled to accomplish exercises required for the exam, as he watched the expert’s reactions on the TV screen and the expert simultaneously watched his performance from a similar screen in his Baltimore office.

Once the gentleman was seated, the live conversation continued as the expert asked how he was feeling. While he looked completely exhausted and his face was characteristically lethargic, he replied, “Great! This is the best day I’ve had in the last two years!” The Baltimore expert and local facilitators were stunned when they heard this remark. Dr. Dorsey, then asked what made this the best day. The red-faced, gentleman looked up and said, “This is the first time I’ve been able to talk to someone who could see what I’m dealing with every day and really understood me and what they are looking at. I’m so grateful and happy to meet you.” The appointment was concluded with advice on the medication regimen being followed, nutrition, and exercise.

As with all the appointments, information was gathered on where a FAX of the written assessment and recommendations should be sent. To a local neurologist? Primary doctor? Client? Or all of them?

Evaluations of all 20 clients seen in the HCI studio at MAC held at least three elements in common: all clients were very grateful for local access to the world renown expert; all clients appreciated the extended length of each personal visit; and all clients said they would be happy to use virtual visits regarding a health condition again in the future. This was great news but a problem or two remained.

The first problem was assessments for those clients unable to leave their home or bed for the visit in the studio or to see a local expert in a specific disease or therapy. The Lower Shore Parkinson’s Support Group learned about this issue and volunteered to support virtual telehealth home visits by offsetting the cost of mobile Wi-Fi units in the computer tablets used by Caregiver Center staff in each county on the Lower Eastern Shore. The first virtual home visit took place in a home between Salisbury and Parsonsburg, in August 2013.

The client suffered from a degenerative neurological condition that had progressed to the point of limiting travel to about six feet. Yes, from the bed by a mechanical lift to a chair and back into the bed.

On one hot day last August his living room heated up a degree or two more when the bed-bound client excitedly learned more about the condition, new research and recommendations for additional comfort from the neurological expert “virtually” standing at the foot of the bed. You see, there was a 55” flat screened TV at the end of the bed that was used together with the tablet, an iPad to be exact, that brought them together. Just as in the studio case, the two people involved were able to see and talk to one another by remote connection in real time.

When asked if the client felt this visit was of the same or better quality than office visits he said, “Look, this was about as real as it gets and definitely better than it gets for a guy like me, who can’t even answer his own front door anymore. I’d recommend this to anyone. He might o’ been in a box but it was real good advice and real good to see a doctor again.”

Unfortunately, this was not a new conversation. According to a study done a couple of years ago by Peninsula Regional Medical Center in Salisbury, there are an estimated 7,000 people on the lower Delmarva peninsula with PD and the number is likely to grow given the attraction of retirees to the area and their desire to age in a good place. It is but one chronic condition that motivates us to find new ways of assessing and treating clients in a more accessible manner.

The second problem is finance. Fortunately, our area hospitals are aware of the benefits this new mode of health care offers and are actively utilizing studios for visits by experts from far-away places. They are investigating ways to pay for the visits in their studios via private insurance and other financial instruments. Thus far, there is coverage on a very limited basis in Medicare Certified facilities by experts licensed to practice in specific fields and in specific states. Area hospitals are currently utilizing telehealth for complicated emergency procedures, new techniques and therapeutic follow-up appointments from studios equipped with local medical professionals and devices.

The Caregiver Resource Center at MAC Inc. continues to test the acceptance and efficacy of telehealth utilizing the HCI studio on a limited basis. PD clients are offered a one-time free assessment, 2nd opinion or updated assessment. These appointments are in coordination with experts from University of Rochester, NY, and Johns Hopkins University, Baltimore, MD, one day each month. The same resources and schedules are used to set up in-home telehealth visits for residents of the Lower Eastern Shore.

Referrals to local neurologists for further assistance are made by the experts for monitoring and treatment. The Caregiver Resource Center accepts contacts to schedule appointments Monday through Fridays between 9 and 5 p.m. at 410-742-0505 x172 or at Since, it is one of many services coordinated by the Center patience with scheduling is appreciated.

The Caregiver Resource Center proudly pays tribute to The Parkinson’s Disease and Movement Disorders Center at Johns Hopkins University, the University of Rochester, NY, Parkinson’s Disease Clinic, Peninsula Regional Medical Center, Atlantic General Hospital, Maryland Home and Community Care Foundation, Delmarva Parkinson’s Alliance and the Lower Shore Parkinson’s Support Group for their dedication and pioneering efforts to bring.