Washington DC

Tuesday 6 May 2008

Do I sound Irish to you? Those who know me would vouch for the fact that my accent is pure Australian. However, this is the second time someone has sworn my accent is from Ireland. Whilst waiting for our shuttle, an Italian woman mentioned it saying she should know because she lived in Ireland for a year! Well, maybe she needs to travel over to our side of the globe for a widening of her cultural horizons . . . That’s not to say both Jill and I haven’t been asked about our accents on numerous occasions. Of course, this was to be expected. There have been some interesting misunderstandings such as when I was asking someone to change dollar ‘notes’ before I twigged that I should have been using the word ‘bills’ after the seventh “excuse me?”. That type of thing.

Today we were off to the National Rehabilitation Hospital to meet with Lauro S Halstead, MD, who contributed to and edited the 2nd edition of “Managing Post-Polio: A Guide to Living and Aging Well with Post-Polio Syndrome” printed in 2006 – one of many publications produced throughout his career. Dr Halstead contracted polio at the age of 18 and, as he writes in Chapter 15 of his book under “The Lessons and Legacies of Polio”, he “. . . made the trip from iron lung to wheelchair and then to no assistive device within six months. This experience taught me a number of things, including denial. I had recovered and, although my right arm remained largely paralyzed, I did not think of myself as disabled – just inconvenienced.” Dr Halstead went on to graduate from medical school and specialize in the area of Internal and Neuro/Rehab Medicine, working primarily with people who had spinal cord injury. In the early 1980’s, Dr Halstead started experiencing extreme fatigue – something he had never felt before. A little while later, he noticed he couldn’t walk as far as he used to and his legs felt ‘heavy’ and painful. With ready access to a number of specialists, he underwent numerous tests, none of which resulted in any conclusive diagnosis. He then started to research various medical publications and chanced upon one focussing on a sample of polio survivors that seemed describe his symptoms. Quoting from his book again under “The Legacy of Emotional Isolation”, Dr Halstead writes, “Speaking for myself, the detachment I learned made it difficult to express emotions and share deeply in relationships. The physical losses sensitized me to other kinds of losses. I contracted polio in 1954 but did not experience being disabled until 1983, almost 30 years later, when I was 46. Not until I joined a support group and began talking with other polios about my new weakness and pain did I begin to grieve for the body I had lost 30 years earlier.”

With his medical background and personal experience, Dr Halstead was clearly an ideal physician to head the Post-Polio Clinic at the National Rehabilitation Hospital in Washington DC. We met with Dr Halstead for an overview of the work he does at NRH (now part-time) before being introduced to one of his team members, Ginger Stewart Walls, a PT and Clinic Director specialising in Neuro Rehabilitation with the Outpatient mobility clinic. Ginger offered to show us around her area including the hydrotherapy pool (94 F / 34 C), the physical therapy exercise and assessment room, the seating centre, and a brilliant facility called “Independence Square” which is a large area set up with the same services and related obstacles that need to be negotiated within the general community – all in the safety of a controlled environment. There was a supermarket with a turnstile, a bank and cafe, steps, ramps, a bedroom, bathroom and kitchen, and an excellent adaptive driving simulation. We were really impressed with this set up.

Ginger then deposited us back at Dr Halstead’s small office which really only had room for 2 people, so while I was videotaping an interview with him, Jill found a computer and updated “Jill’s Jottings”. We discussed numerous aspects of the workings of NRH’s Post-Polio Clinic, including the thorny subject of who will be his successor? Unfortunately, a well regarded colleague who had operated a second ‘team’ of post-polio health professionals recently left and there is no guarantee that a suitable replacement will be found, i.e. a physician interested in working with and learning from the polio community.

The specifics of NRH’s Post-Polio Clinic are interesting insofar as the initial assessment is done over a period of 1½ days. The schedule is as follows:

Day 1
7.50 – 8.00am Registration
8.00 – 8.45am PT Evaluation
9.00 – 9.45am OT Evaluation
10.00 – 10.30am Nurse Evaluation
10.30 – 11.30am Examination with MD
11.30 – 2.00pm Lunch
2.00 – 3.00pm Other consults as needed (eg. Orthotist)
3.00 – 4.45pm Electromyogram, if needed (EMG/muscle test)

Day 2
10.30 – 11.00am Social Work consult
11.00 – 11.30am Joint session with PT & OT
11.30 – 12.00pm Wrap up meeting with all disciplines

The theory is that the overnight period is a good time for people to discuss the day’s events with their ‘significant others’ and to generally come to terms with what has been discussed during the day. They can then ask specific questions during the next day’s activities. ‘Significant others’ are also encouraged to attend he ‘Wrap Up’ meeting, which is important to enable all the relevant specialists to ensure suggested management strategies have been fully explained and understood, referrals to local community practitioners can be made, and any last questions addressed. This extraordinary service is paid for through private health insurance. If you were to pay for it yourself, it would cost around $2,000 - $2,500 USD. Dr Halstead sees approximately 2 new polios for assessment each week and up to 250 – including reviews – per year. As you would expect, the feedback from these sessions is glowing and we can only assume people comply with the suggestions made and actually improve somewhat after such a thorough going-over.

We took our leave from the NRH for the afternoon, before heading back to Dr Halstead’s home in the evening for a dinner invitation with his charming wife, Jessica Scheer, a Research Professor at the Department of Prevention and Community Health, and 15 year old son, Alex. It was an excellent occasion to relax on the back decking of their house located in a gorgeous, leafy suburb on the edge of a state park. We had a lovely, balmy night and all seemed to enjoy each other’s company and ‘cultural exchange’. Jessica learned about “loo’s” and Alex was curious about “uni’s”. I had to spell the word “tyres” and verbally compare it to “ties”.

Dr Halstead was invited by the Post-Polio Network (NSW) to speak at a conference in 2001, just when 9/11 laid to rest any imminent travel plans for the family. Hopefully, these plans can be resurrected – perhaps via “Polio Australia” – some time in the not-too-distant future. It would be an exciting opportunity to hear from such a respected leader in the field of Post-Polio. Jessica Scheer is also well versed in working with polio survivors, with a wealth of information to share on the subject herself. And, just on a personal level, it would be a pleasure to meet up with them again in Australia.