Spaulding Rehabilitation Hospital Network, Framingham

Tuesday 20 May 2008

Well, the universe provided for us again today with the offer of a pick up from our motel to Spaulding by Anna Rubin and Liz McKenney, previous and current Co-ordinators of the International Rehabilitation Center for Polio (IRCP) at Spaulding: http://spauldingrehab.org/ourlocations/framingham/ircp

When I started organizing my Churchill Fellowship Study Tour, my contact was with Anna. At that time, the Medical Director had been Julie K Silver, author of “Post-Polio Syndrome: A guide for polio survivors & their families” published in 2001, and co-author of “Polio Voices: An oral history from the American polio epidemics and worldwide eradication efforts” published in 2007. I was keen to meet with Dr Silver however, she decided on a total change in career direction last year and is no longer working in the area of post-polio. The current Medical Director is Darren C Rosenberg who has been working with polio survivors since 1999, and with whom we will be meeting up with tomorrow.

Today was quite a full schedule starting with Anna and Liz giving a joint overview of the role of Co-ordinator for the IRCP, although Anna has since moved to an unrelated position within Spaulding. The IRCP sees approx 300 polio survivors per year, many from other states, and some from overseas. There is one large and two smaller polio support groups in Massachusetts - which is three more than in New York - but these are not connected to the clinic apart from accessing services. There is an educational component to the role insofar as giving talks at Rotary and other community meetings to which they are invited. Spaulding also has a school program that focuses on general disability awareness but this also incorporates a polio survivor talking about their own experience. However, the main thrust of the role is to respond to enquiries from polio survivors about the services being offered, and co-ordinate the clinical visits working through potential needs such as: energy conservation and sleep hygiene; exercise; equipment; bracing, orthotics and mobility devices; psychological services; medication and tests.

A key interest I had in talking to Anna was regarding her involvement with the “Oral History Project” which was the basis from Julie Silver’s aforementioned book co-authored with Daniel Wilson, PhD. This was a four year project that entailed recruiting polio survivors from all over the USA to work through an interview questionnaire designed by Dr Silver in order to document their account of having had polio. Anna interviewed 200 people which yielded 100 accounts being used in the book. The project was also an instigator for the Smithsonian Institute’s Polio Exhibition which we saw in Warm Springs, as well as a 300 strong reunion celebrating 50 years since the release of the Salk vaccine. Anna presented us with a copy of each of Julie Silver's books to add to the Polio Network library.

We were then introduced to Robert (Bob) Drillio who does all the bracing for IRCP patients through his company, “I AM Orthotics and Prosthetics”. Bob is clearly very passionate about working with polio survivors and has been doing just that since he was 17 years old. We were shown brace after brace incorporating many innovative features he had designed to make them lighter and more supportive of the polio leg, knee, ankle and foot. There were lots of great designs, including carbon fiber models, but Jill was particularly taken with one design using a new type of knee lock (which she decided would be good for riding horses). For someone only requiring a bit of additional support we both liked a lightweight ankle-foot orthosis used for drop foot called “Foot-up”:
http://www.ossur.com/bracesandsupports/ankle/anklefootorthoses/foot-up. Bob quoted a 93.3% success rate in his bracing manufacture and the two patients we met whilst he was seeing them in the afternoon vouched for his superior skills in the area of polio bracing.

Next was a meeting with Psychologist, Dr Stephanie Machell. Stephanie is actually the daughter of a polio survivor, a fact she says puts a lot of patients at ease. Her inside knowledge gives her a leading edge in understanding and working with the issues surrounding polio and post-polio. At the Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living: Strategies for Living Well, Stephanie gave a presentation entitled: “Trauma Treatment: What is it and What are the Benefits?” which was given an excellent review by attendee, Mary Kinane, and written up on Page 6 of The Lincolnshire Post-Polio Information Newsletter Volume 5 - Issue 5 — August 2005: http://www.lincolnshirepostpolio.org.uk/downloads/lincpin/lincpinv5i05august2005web.pdf. Stephanie confirmed that counselling helps relieve a variety of ‘stressors’ that, in turn, can help alleviate PPS symptoms such as chronic fatigue. Once again, a professional who is passionate about working with polio survivors and has a wealth of knowledge to share.

Our final appointment for the day was with Carolyn Balinskas, a Speech Therapist working with swallowing disorders, as well as sleep apnea, and cognitive fatigue – which tend to go hand in hand. We found the idea of working with cognitive fatigue interesting for a Speech Therapist but this is not uncommon, apparently. Carolyn teaches patients compensatory strategies for cognitive fatigue such as: limiting periods of concentration; taking frequent breaks; note taking; list making; visualization; “chunking”; mnemonics; prioritizing activities for ‘good days’; and many other techniques. There is a lot of cross over with Occupational Therapists, but it is complementary. I’m sure a number of people would greatly benefit from these types of management strategies.

Carolyn was then kind enough to drive us back to the Best Western, and Liz has offered to collect us again tomorrow morning for a morning with the PT & OT staff, then lunch with a local polio survivor. We are certainly getting good value from this visit!