Johnstown, Pennsylvania

Friday 9 May 2008

For a small town (pop approx 22500), we certainly received a huge welcome from our hosts at John P Murtha Neuroscience and Pain Institute in Johnstown, Pennsylvania (www.conemaugh.org). We were met at our hotel at 8.30am by Sharon Lehman, a Research Nurse, who thoughtfully brought over an umbrella for the light drizzle that had continued to fall. As the Institute was right next door, we were safely delivered a couple of minutes later to be greeted by a delicious looking plate of freshly baked bagels. Unfortunately, we had just had breakfast but I certainly enjoyed a raisin bagel at mid-morning.

Sharon explained the set up for the day and gave us a copy of our program. We immediately felt we were in safe, efficient hands. First off, we were herded together with members of the clinic staff for a photo opportunity with Greg Dulak from Marketing/ Communications, as well as a representative from one of the local newspapers. This led to informal introductions with many of the people we were later scheduled to have more ‘quality time’ with, including Dr William DeMayo, the Medical Director of John P Murtha Neuroscience and Pain Institute (JPMNPI) Specialty Clinics. I hope I get to see some of these photos and any subsequent write up because there were some hilarious moments where we were instructed to “look casual” and “just talk to each other”, i.e. staged candid – should be interesting . . .

It was certainly a good ‘ice-breaker’ for our first interview with Dr DeMayo, who I videotaped giving an overview of the Specialty Clinics he manages which including the Post-Polio Program. Other Neuroscience Specialty Programs include:
Arts for Healing: Giving Patients New Hope for Relief from Chronic Pain and Neurological Conditions
Osteoporosis Program
Stress Reduction
Healthy Living with a Chronic Condition Program
Blending Traditional Medicine with Complementary Healing Methods to Treat PPS

Chronic conditions seen at JPMNPI include:
Amyotrophic Lateral Sclerosis (ALS – Lou Gehrig’s Disease)
Aneurysms
Arterial Venous Malformations
Back Pain
Brain Injuries
Brain Tumors
Charcot-Marie-Tooth Disorder
Chiari Malformations
Diabetic Neuropathy
Epilepsy and Seizure Disorders
Fibromyalgia
Headaches
Hemorrhages
Hydrocephalus
Infections
Lupus
Multiple Sclerosis
Pain Management
Parkinson's Disease and Movement Disorders
Post-Polio Syndrome
Pseudo Tumor Cerebri
Skull Base Surgery Conditions and Abnormalities
Spinal Disorders
Stroke

There are also a number of interesting research projects that have been undertaken and others that are still to be done. Two of particular interest are: Cognitive Function Status in Polio Survivors with and without PPS (not completed), which I know will be of extreme interest to many; and Hatha Yoga and Meditation in Patients with PPS (completed). The Yoga research study enrolled 23 patients who all participated in a 5 day retreat in Johnstown. According to an article which appeared in “Alternative Therapies”, Mar/Apr 2004, Vol 10,No 2, “These results showed significant improvements in a patient population where a lack of deterioration is often viewed as success. These patients improved and at the end of 12 weeks they were actively involved in self-care.”

So, you may have deduced by now that JPMNPI is not purely ‘clinical’ in its approach to treating patients. When Dr DeMayo was recruited as the Medical Director 6 years earlier, it was largely due to his philosophy on addressing the total mind, body and spirit with achieve wellness. He came across as a very warm and genuine man, so I’m sure his patients would be equally responsive to his approach.

Other members of the team we met as part of our program were: Sharon Lehman, Research Nurse; Kerri Golden, the Occupational Therapist - contracted from Saint Francis University; Lori Murphy, Physical Therapist; Tim Golden, Orthotist; Jan Goodard, Research Nurse; and Lisa Pasierb, PhD, who gave us a demonstration of the Post Polio Registry Kiosk. This Registry is designed to track polio survivors and their health issues and can be done on-line. We were interested to learn that as part of the PPS assessment process, polio patients were also given an “Osteoporosis Evaluation Score Sheet” to determine if follow-up was required in this area.

All members of the team echoed each other in their support of the mind, body, spirit philosophy espoused by Dr DeMayo and believed that their success was reflected in the fact that they see approx 200 polio survivors per year who make their way to Johnstown from all over the US, and other countries such as Canada, UK and Mexico.

We were then treated to a lunch presentation with other staff members and interested parties such as Judy Seese, a Polio Survivor who features in the Yoga for PPS DVD we were presented with in our “gift pack”, and Heather Brice from the Laurel Highlands Health Sciences Library Consortium – and fellow Australian (from Tasmania)! More about Heather later. Our hostess for the lunch presentation was Barbara Duryea, Director of Research and Development, who was also my main contact at JPMNPI and, therefore, responsible for making all this happen. Barb had put together an entertaining and informative PowerPoint presentation starting with “Where in the world are Mary-ann & Jill?”, an idea taken from a morning breakfast program. She proceeded to lead us through the Johnstown and JPMNPI experience before opening up to a general information exchange around the table. As has been the way during our team meetings, it was also an opportunity for the others around the table to learn more about/refresh their knowledge of what’s going on in their own workplace.

After lunch, we met with Jan Goodard who trained in the area of Therapeutic Uses of Essential Oils. She provided precautionary information such as which oils not to use under various conditions as well as recipes for relaxation, fatigue, insomnia, and pain. She also gave both Jill and me a few samples to try and assured us that you don’t actually have to be able to smell the oils for them to work. As I really enjoy essential oils anyway, Jan was preaching to the converted. One of the blends she gave me was for sleep although I must say that by the end of each day, I haven’t been having much trouble in this regard. Jill is keen to try the blend for pain.

By 4.30pm we were totally zonked. So much information to try and absorb. Just as well I have written and taped information to refer back to. Over lunch, I had talked more with ‘Aussie’ Heather who generously invited us to join her at a violin concert that night. I was very pleased to accept but it wasn’t Jill’s thing. It was a very pleasant evening and Heather offered to show me around a bit of Johnstown the following day. Jill was keen to whiz around on her electric scooter to spent time with Jan Goodard looking at bus timetables and making alternative arrangements.

In summary, John P Murtha Neuroscience and Pain Institute has been an absolute treat to visit. I am really impressed by their whole-health philosophy and willingness to look at the range of traditional and complementary options to treat and manage patients with chronic illnesses. I think we could learn much from the concept of exploring the ‘spiritual’ side of healing which, of course, will mean different things to different people. I suppose the key message is not to overlook the less obvious strategies for wellbeing.

For more information on Complementary and Alternative Medicines (CAM) - http://www.lhhslc.org - MEDLINEplus / CAM