Los Angeles

Thursday 24 April 2008

I can’t believe it’s Thursday already! Today we met with Dr Susan Perlman, Clinical Professor of Neurology, Neurogenetics Clinic, UCLA Neurological Services and Melinda Guttry, Physiotherapist, UCLA Rehabilitation Services. This was the first in what will undoubtedly prove to be a series of fascinating taped interviews.

We started off with a light lunch at one of the hospital complex deli’s during which time Dr Perlman relayed how she was originally introduced to post polio syndrome (PPS). Sometime during the mid-late 80’s, a local support group brought in a wad of information with a request that UCLA’s Neurology Clinic start up a specific Post Polio Clinic to service people on that side of town. The Rancho Los Amigos Hospital had been running a clinic for some time, but it was all the way across town (25 miles) and the numbers emerging at that time seemed to warrant an additional service. Luckily, Dr Perlman became interested enough in PPS to do more research on the various symptoms and had access to the full compliment of supporting physicians including physiotherapist, Melinda Guttry. Over the years, with the general rationalisation of resources and the way the health insurance system is set up in America, these days much of the supporting therapeutic, aids and equipment services are mainly referred out to specific services. However, after 20+ years, Dr Perlman and Melinda Guttry have been able to network with and educate many professionals, such as orthotists, to a stage where they are confident that effective treatment and services will be provided for polio survivors. Dr Perlman is also very active on the professional speaker’s circuit, as well as giving annual presentations on the latest research in PPS attended by the local post polio community. I’m sorry I’ll be missing out on her May presentation because I believe they are excellent and accessible – both information-wise and physically.

Dr Perlman has also written numerous papers on the latest research being carried out in the area of PPS and believes the most exciting developments are in the areas of ‘inflammatory markers’ and the immune treatment ‘intravenous immunoglobulin’ (IvIg). A 2002 study of IvIg using Swedish polio survivors concluded that the results (relating to increased muscle strength) were promising, although they were not conclusive due to the low number of patients studied. Since then, more research projects have been undertaken and this will definitely be something to keep an eye on in future. Both Dr Perlman and Melinda Guttry were kind enough to allow me to film their response to a series of questions that were provided by members of the polio community. The resulting discussions will be of great interest once editing has taken place. I advised Dr Perlman that I would be providing copies of the edited tape compilation to all who participated. She seemed impressed with the scope of the study tour and the fact that I would be sharing the information with as many members of the polio community as possible. Dr Perlman believe that it is vital for polio survivors to become self-educated regarding PPS, then to educate their own health service providers. After all, that’s how she got started in the first place.

On the way back to the car park – which we were able to use free of charge thanks to Richard’s disability licence plate – Jill and Richard decided to have a race. There is definitely something to be said about electric motors . . . We were taken on a bit of a tour of Beverly Hills and Hollywood, along Sunset Boulevard. Didn’t catch sight of any ‘stars’ but saw some interesting scenes nonetheless.

And for anyone who thinks I’m on a holiday here, tomorrow we have a full day at Rancho Los Amigos starting at 8.30am and finishing at 5.00pm. Just as well I love my job!