New York

Wednesday 14 May 2008

Today started off bright and sunny but by the afternoon you could tell there was a change coming. It was with that in mind that I asked Susan Fish, the Physical Therapist we were meeting today, if she would be interested in having lunch at the Boathouse in Central Park. Although she had already booked for us at a seafood restaurant (for those who don’t know me, I don’t eat anything aquatic), she graciously agreed to cancel her booking and off we went to enjoy Central Park in the glorious sunshine.

We caught a taxi this time or we may have lost our way again. We hadn’t booked, of course, but managed to get seated within about 10 minutes of arriving in the delightful pavillion section overlooking the lake. Yesterday I had decided that dining at the Boathouse was definitely something I wanted to do before I “kicked the bucket”, so I can now concentrate on the other 1,672,000,000 – meaning I have to live a lot longer yet!

Susan was recommended as an interesting person for me to see via Dr Margaret E Backman (Peggy), author of “The Post-Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families” – who we are meeting tomorrow. Susan told me that she and Peggy had met through joint presentations a number of years ago, which lead to subsequent referrals to see polio survivors. Susan advised that there are actually no clinics working with post polio in the whole of New York, which is a pretty large area. Of course, there is Dr Bruno across the Hudson River in Englewood, New Jersey, but this lack of service provision for the huge numbers of polio survivors out there, is surprising and unfortunate. Over the years, Susan and Peggy have tried to generate interest in starting such a service but as it is seen as something without much of a future, no-one was prepared to invest in the idea.

Susan is a private Physical Therapist and has learned most of what she does through the polio survivors themselves. Until last year, all her patients were required by law to be referred through a medical practitioner. Although people can now self refer, this doesn’t really happen because of the out-of-pocket cost of something like $120 per session. Although Susan only works to a couple of polio survivors at any given time, she has done so over many years and is probably considered the ‘expert’ in New York. She, however, is not as confident in her expertise as she would like to be and was keen to learn about our experiences with other physical therapists on our journey.

I think we managed to convince her that no-one was really doing much that was different to how she practiced. The outstanding exception would probably be the Post Polio Clinic at Rancho Los Amigos in Los Angeles, where they had access to equipment and experts that can test the capacity of individual muscle groups and devise an exercise program that specifically works muscles that can be worked, and rests those that are at risk of being overworked. This balance can be difficult to achieve, and Susan has seen the effects of both overworking AND under working post polio muscles - which can be just as harmful. This is where it is so important to have the skills of an informed Physical Therapist.

PT’s need to understand the limitations caused by polio’s motor neuronal damage, therefore not trying to build muscle strength where this is simply not possible while, at the same time, maintaining strength in areas that can and should be exercised. No exercise at all results in pain and fatigue caused by under worked muscles, not to mention weight gain – which just adds to mobility (and other) problems.
Susan was also very interested in the other exceptional work we have seen in this area, i.e. the yoga research study and subsequent DVD produced by John P Murtha’s Neurological and Pain Institute in Johnstown.

I think the take home message from today – and every day so far - is that there are individuals and institutes out there doing innovative yet practical things that, in this day and age, can be readily shared through email contact with each other. No practitioners need to work in a vacuum when there are so many ‘experts’ willing to share their knowledge and skills for the benefit of all polio ‘patients’. Sadly for NY polio survivors, Susan is now only working part-time, with a view to retiring in the not too distant future, which will leave a great big hole.

Eventually, after a very pleasant lunch, Jill and I left Susan in Central Park with much bonhomie, and references to meeting up “down under” some day. At Susan’s suggestion, we then made our way to the north end of the park where there is a well noted ‘Conservatory Garden’ in full Spring bloom. We also had a tough negotiation through an area up the top end of Central Park called the “Woodlands”. Apparently, it’s not the safest part of the park, but we didn’t know that at the time and it looked exactly like what it was called, woodland. What that translated to was no easy paths for Jill’s wheelchair and lots of up hills and down dales which I was unable to push Jill up so she had to slowly make her way up on foot.

But we made it back to the hotel at long last and I gave a little wave to the shoe shine man who had given me a lesson in the entrepreneurial nature of “Manhattan’s” the day before. As I was walking past in my trainers, he realized he wouldn’t get a ‘shine’ job but offered to tell me “Where I got my shoes including the street, city, and country”, for a mere $5.00. Suspecting a ruse, but never being too sure about who knows what, I negotiated down to $3.00. After asking me if I was a woman of my word, we struck a deal by knocking fists together. So, “Where you got your shoes? On your feet!”, and the rest goes without saying . . . He told me that if he was some kind of psychic, he wouldn’t be sitting around on a corner, shining shoes, now, would he? I thought it was $3.00 well spent in learning that lesson!

Later that evening, I caught a bus downtown to the theatre district to see “Wicked” at the Gershwin Theatre. Jill had chosen not to attend. Peggy (Dr Margaret Backman, who we are meeting with tomorrow) kindly bought me a ticket some time ago as I couldn’t do it on line without a local delivery address that was connected to my credit card. It was a fabulous musical with great costumes, sets, etc. but only one female ‘restroom’ consisting of 6 toilets for the stalls/orchestra level. What is it with providing decent facilities in a theatre that seats 1933 patrons – approx 50% (or more) of them women? I was a bit concerned on leaving the theatre at 11.00pm and having to walk about 2 kms to get to the part of Broadway that has two way traffic to catch a bus back ‘uptown’, but there were plenty of people around and I only had a couple of minutes to wait until the bus came, so arrived ‘home’ safe and sound. So, “To sleep, perchance to dream . .”.