Arriving in Atlanta – Friday 17th April 2009

Well, here we are after way too many hours flying to think about. Local time in Atlanta is 10.10pm (Friday 17th April) but my computer clock says 12.10pm (Saturday 18th April). Liz Telford and I met at Tullamarine Airport at around 8.15am on Friday 17th to fly to Los Angeles so it is has been well over 24 hours awake time. Of course, the flight was late leaving and the plane was pretty packed, so no spreading out.

Whilst Liz was whisked through LA customs in a wheelchair, I had to wait FOREVER to get processed. I’d lost track of Liz, so I then walk about 1½ km’s around to the Delta terminal to catch our flight to Atlanta. It was good to stretch. There we met with Shirley Glance, who had flown to LA a day or so before and stayed with a cousin. (We are fast discovering that Shirley has family in practically every corner of the planet.) We briefly caught site of our 4th musketeer, Fran Henke, who was unable to get onto our totally full plane and had to wait for a later flight. By the time we were booked into our rooms, freshened up and changed to go out for something to eat, Fran still hadn’t turned up. She was still MIA when we returned from dinner, although I later went down to Reception to ask for a power plug converter for the computer (I had brought along two but neither of them were the right type) to find she had finally come in around 9.45pm. Poor Fran, she must be pooped!

Dinner was at Ruby Tuesdays - conveniently located next door - and was just what we wanted. We proposed a toast to our budding adventure and shared a HUGE slice of chocolate cake. Ruby Tuesdays looks just like the type of restaurant you would expect to see in any American movie. Tomorrow we pick up the hire car and head off to Warm Springs. The weather looks like it’s going to be just fine. Back with more then . . .


Arriving in Warm Springs – Saturday 18th April 2009

I really thought I’d be sleeping in this morning but, alas, 6.00am saw me wide awake and unable to do anything about it. I decided to go downstairs for an early breakfast and found myself inundated with all kinds of groups. The first lot was a sporting bunch of some variety, followed by what looked like hundreds of youngsters, all in blue tee-shirts, proclaiming to be connected to some musical tour. I managed to squeeze something in between these two hordes and rang the others to suggest they wait until 9.00am before venturing down. Shirley and Fran were sharing a room and, although they were awake, they promptly told me they had no intention of coming down before 9.45am.

As neither Shirley nor Fran were remotely interested in expanding their navigation skills, Liz bravely offered to come with me back to the airport to pick up the hire car. We were dropped of by the hotel’s shuttle but then the fun began. Once I’d completed the paperwork, we were told to “just go down to the last row and pick any car” . . . I had booked an SUV and all I knew was that it was big, so we chose a big car with a sliding passenger door for easy access. However, when I drove out to leave, the woman at the gate advised me that I had booked an SUV, to which I quickly agreed – however, I had taken a ‘van’. We then had to make the choice all over again but at least I know what an SUV is now – I think . . . From there, it was a muddled and exciting trip back to the hotel to pick up the other two. Exciting because I was driving on the ‘wrong’ side of the road and muddled because we had had no idea how to read the map to get us back. But then the hotel jumped out in front of us without any warning and we realised we must be “on a mission from God” (reference to the ‘Blues Brothers”). There was more excitement and muddlement to be had getting onto the highway to take us to Warm Spring but, miraculously, here we are! Mind you, I did have to stop to ask directions and was given lots of great advice telling me to go left, right AND centre.

When we reached the township, it was abuzz with market stalls and unique features like the carriage drawn by a horse called “Grace”. As promised, the weather was lovely. We found a lunch spot which had ‘scrambled chilli dogs’, A curious concoction of hot dog, chilli beans, onions and crackers. At least it wasn’t fried! Roosevelt Warm Springs Rehab hasn’t changed since I was here a year ago, although this time we were able to get cell phone connection AND wireless internet. Brilliant!

Dinner was a revisit to Bullock House, where I was taken for lunch last time for some real ‘Southern fried’ everything, including their famous fried green tomatoes. I passed on the buffet this time and had the seriously large chicken salad, of which I could only eat ¼. The waitress wanted to bring us a ‘box’ so we could take unfinished food away with us but we declined.

The rooms here are Basic (note the capital “B”) but interesting in an historical kind of way. Tomorrow we book in to Camp Dream to start the retreat. We have already encountered a couple of other participants from Florida. Should be good.


First Day of the Retreat – Sunday 19th April 2009

Dear, oh dear, must be a bit ‘time challenged’ at the moment as I woke up at 1.00am and had all kinds of trouble getting back to sleep. The result was a sluggish me all day. We all rolled out of our overnight accommodation at Kress Hall in the main section of Roosevelt Warm Springs Rehab, packed up for our move to ‘Camp Dream’ about 1½ km’s away (on the same property), and headed out in search of breakfast. We thought we’d drive to the closest ‘big’ town of Manchester, approx 6 km’s away where the only place we found open was good old McDonald’s! We all downed fruit salad and hot cakes and felt semi healthy but mostly fat and guilty – well, I did anyway . . .

Registration at the Retreat commenced at 2.00pm and we were allocated share room facilities in one of two lodges – Lanier & Calloway. Liz and I ended up sharing a room with the President of Polio Canada, Elisabeth Lounsbury who I met last year in Toronto during my trip. Elisabeth was also on the organising faculty for this Retreat and is therefore a handy room-mate to have. Fran and Shirley are in separate rooms and, as there are three people per room, everyone is making new pals.

After not sleeping for most of the night, I had to have a little nap before we regrouped for dinner at 6.00pm. I admit to being a little surprised when we all had to line up for our serves as there were a lot of people on some kind of wheels, and some of those who weren‘t were a bit unsteady. However, everyone was well fed on the roast turkey, cranberry sauce, corn bread stuffing, green beans and gravy followed by apple cobbler so there weren’t too many complaints.

One of the primary facilitators, Dr Fred Maynard, then gave us an overview on the Retreat which is neatly split into three themed days: body, mind, and spirit. The overall topic of this Retreat is “Renewal”, i.e. re-evaluating what health and wellbeing is for people now/at this age; new definitions and expectations; strategies learned/what works-what doesn’t; functional independence; freedom from suffering; how to still be productive; optimism & humour; maintaining relationships; and being flexible to change. The 60+ polio survivors and their ‘significant others’ were clearly inspired by this as was demonstrated when we were all asked to introduce ourselves and our goals for the Retreat. I managed to do a plug for the 20 DVD’s I brought with me, PPS: Shades of Grey (also on You Tube) – they were all snapped up. Many had already seen it on You Tube and gave it the thumbs up. Fran’s goal was to write a new travel book called “How do I get my wheelchair onto a gondola?” to be dedicated to Liz.

It was great to meet with a number of other people I had visited with last year including Joan Headley, Director of Post-Polio Health International, Barbara Dureya and Dr William DeMayo from John P Murtha Neuroscience & Pain Institute in Johnstown, Pennsylvania, and Wendy Wilmer, previous President of Washington DC’s Polio Association. We were also joined today by Dr John Tierney, our New South Wales representative. John served as a senator during the 1990’s and is now a lobbyist between business and government bodies. He is also a polio survivor learning to manage his post polio syndrome. There are still two more Australians joining us from South Australia and Queensland later in the week.

As part of the Retreat, we have been offered our choice of manicure, facial, or hair cut tomorrow. I’ve put my name down for the manicure – followed by a massage on Tuesday. Should be lovely. Back with more tomorrow.


Second Day of the Retreat: Body – Monday 20th April 2009

8.00am and we were all in the conga line again for breakfast. There is no shortage of food here, that’s for sure! This was followed by an overview of PPS by Dr Fred Maynard, with contributions by Dr’s William DeMayo and Werner Rink. Of course, the question from the attendees was how to make doctors pay attention to issues around PPS. Dr DeMayo just reiterated the notion that people/patients just have to keep up the education and drip by drip, the information can’t help but percolate through.

Today was ‘body’ day and the morning consisted of a variety of excise sessions that people could try out: Seated Exercises for Stretching and Strengthening, Adapted Cardiovascular Conditioning; and intermittent Non-Fatiguing Isometric Exercises (Yoga). Unfortunately, Aquatics was taken off the list due to the heated pool having boiler problems. After lunch I was happy to meet up with Greg Schmieg, the Director of Roosevelt Warm Springs Rehab who had been so kind to Jill Pickering and me when we were here almost the same time a year ago.

The afternoon sessions consisted of: Arts for Healing; Adapted Cycling; Adaptive Sports (boccia); and a tour of the Little White House. This was followed by: Acupuncture; Ask the Doctor (bracing and walking aids); Creating a Personal Health Care Record; Weight Loss Strategies; Psychological Strategies for Pain Control; Tips for Travel; and How to Best Access & Use Complimentary Medicine. I attended a few of these sessions for periods of time, taking photos and getting a general feel for what was going on. Who knows, maybe we will get the chance to run our own Retreats one day . . .

I had the mini manicure and facial, which was a nice touch. This was carried out by local cosmetology students. Apparently it all adds to their hours for completing their course, and we were willing recipients.

Dinner was a ‘cookout’ in the pavilion. We had chicken, corn kernels, coleslaw and garlic bread. I could have sworn the guy serving asked me if I wanted white or “dog” meat. I really couldn’t figure out why the chicken leg would be called “dog” meat but thought it was some weird slang they used in Georgia. I later found out he was saying “dark” meat which everyone found hysterical. Accents make for interesting misunderstandings – on both sides! After dinner, we had a ‘campfire sing-along’ which I contributed to by leading a round of “Kookaburra sits in the old gum tree” and another easy one called “Bella Mamma”. I had a couple of others I thought I might be able to teach in three part harmony, but the open space of the pavilion didn’t really suit. This was followed by toasted marshmallows and a concoction called “S’Mores”, which is toasted marshmallow sandwiched between two biscuits with some chocolate. YUM! I offered the idea of banana in the skin, split and jammed with chocolate – they added marshmallow – cooked on the coals before taking it out and eating with a spoon. They liked that too. Oh, I should say that “S’Mores” is to suggest that people always want “some more”. Not me, one was more than enough for the night.

Off to bed now with ear plugs in place. Theoretically, I knew that most polio survivors snore/have sleep apnoea, but now I KNOW . . .


Third Day of the Retreat: Mind – Tuesday 21st April 2009

Struggling with info overload now as I’m writing this on Wednesday morning instead of Tuesday evening because we had quite a late night watching and discussing the movie “Warm Springs”. Of course, most of us have seen it but to actually see it at Warm Springs and to hear from people who actually rehabilitated here was pretty amazing.

The morning started off with Barb Duryea from John P Murtha Pain & Neuroscience Institute talking about the “Mind”. This was a great, interactive session and Barb is an excellent presenter. We went over five main areas of interest: Neuro Protective – the importance of protecting your brain from physical damage; Neuro Plastic – how to keep the brain flexible and functional including prioritising, living in the present, and using props such as post it notes and pneumonics (verbal queues for remembering names, shopping lists, etc); Neuro Play – making sure we have time for fun in (all work and no play makes Jack a dull boy and all that); Neuro Empowerment – you have the power to control the way you think about how situations in your life impact on you.

This was followed by a variety of exercise options such as: Taking care of your shoulders; Seated exercises for stretching and strengthening; and seated Tai Chi, which I did. I’ve never actually tried Tai Chi before and found it quite strenuous. However, it was emphasised that you only do the moves that you can do so it can be as challenging as you want to make it. We were following a DVD presentation which required total concentration – as would following an instructor so, in its own way, the session achieved the meditative goal of clearing the mind of anything extraneous.

By that time, I was ready for my ½ hour massage – lovely! All four of us got some benefit out of it with Fran being delighted in having her painful pelvis put back in place.

Lunch consisted of cat fish (as opposed to the ‘dog’ meat of the night before), hush puppies (fried – of course – balls of mashed vegetables), okra and tomato. Interesting . . . Immediately after lunch, a small group of keen singers got together to practice one of the Australian songs I wanted to teach in three part harmony called “Let it go”. This is not a ‘typical’ Aussie song but one based on a cartoon by Melbourne cartoonist, Michael Leunig, and put to music by another local, Suzanne Fisk. We may have a chance to give a little performance on Wednesday evening.

The early afternoon’s recreation sessions were similar to Monday, giving people an opportunity to participate in as many activities as possible during the Retreat. Later that afternoon there were a series of ‘Breakout Sessions’ that people could select from: Ask the Doctor-Sleep Issues and Fatigue; Ask the Doctor-Pain Issues; Complementary treatments for polio survivors in Germany; Creating a Mindful Action Plan; Ask the PT-Seating, posture to alleviate pain; Botanicals; and one I ran on Options for reducing work hours. This was a small group but we were able to explore a number of issues around identifying when it’s time to slow down on the work front (paid and unpaid); retirement; and volunteering options that will enable you contribute within your capacity.

All in all, another day packed with information and ideas.


Fourth Day of the Retreat: Spirit – Wednesday 22nd April 2009

OK, hot cakes for breakfast twice in one week is a bit decadent, I admit. I would LOVE some grapefruit or fruit salad (no yukky melons) with some natural, unsweetened yoghurt – but that is not an option. I only had two hot cakes . . .

Sunny Roller, polio survivor and one of the primary conference organisers, introduced the theme of the day – “Affirm, Affirm, Affirm: Tapping Into the Divine Spark”. The definition of ‘Spirit’ was described as “an animating or vital principle held to give life to physical organisms.” The Merriam-Webster dictionary describes ‘Affirm’ as “to validate or confirm – to recognise, establish or show the worthiness of; to make strong.” Sunny discussed varying forms of Spiritual Affirmation, i.e. visual, tactile, auditory and spiritual. People were asked to give their own examples of where this occurred at Camp Dream and there were many contributions: seeing a rainbow (visual); patting one of the participants’ companion dog (tactile), and the sound of the wind moving through the “whispering pines of Georgia” (auditory).

I decided to skip the other morning activity options, which were a repeat of the previous day, and drove over to Georgia Hall so I could access the wireless internet system and upload Tuesday’s report. Unfortunately, I found my website was having problems but as my laptop’s clock was reading 4.20am in Australia, I assumed that nothing would be done until my tomorrow. Hopefully, it will be sorted out when I drive over again on Thursday to upload this.

Chicken strips (fried) and salad for lunch – yay! It was great to have fresh vegetables. Early afternoon recreation options included: swimming in the heated outdoor pool; a tour of the grounds; fishing; paddleboat ride; canoe or kayak rides. I went for a walk through the forest, then had a dip in the pool which was warm-ish. Dr Fred Maynard was also in the pool and was asking about Elizabeth Kenny’s profile in Australia. It’s interesting to note that she was far better known in the USA than her own country.

The later afternoon sessions were: Pain Relief-Acupressure and Moxa; Breathing problems; Ask the Doctor-General Medicine; Preventing falls; Ask the nurse-Osteoporosis; and Opening to Spirit-Our pathways of personal power, which I participated in. I had been feeling tired all day and was wondering just how the polio survivors were going. Doing this last session, which consisted of guided meditation and drawing the vision, was really relaxing and refreshing.

After dinner, the newly formed “Camp Dream Singers” (made up of a dozen keen participants), got in a brief rehearsal before giving a 3 part harmony performance of the song I taught them yesterday, “Let it go”, which seemed to fit right in with the spirit of “Spirit”. Michael Leunig’s words are: “Let it go, Let it out, Let it all unravel, Let it free, And it can be, A path on which to travel”. I think we all did a fantastic job for a total of 45 mins learning it.

To end the evening – and the Retreat – we were treated to firsthand stories about long-ago Warm Springs by Mr Marion Dunn, a former push boy and brace maker (1938-1987). He also brought along his brace ‘test subject’, Sue, a woman with cerebral palsy. Between them, they regaled us with story after fascinating story. Linda Creekbaum, the Warm Springs Tour Guide I met last year, was also there and able to contribute.

Tomorrow the Retreat ends and the Conference begins, so more fun in store.


1st Day of Conference – Thursday 23rd April 2009

Once again, I am writing this the morning after and it’s already becoming a blur. There is just so much happening all the time which is a bit of a double edged sword as I really want to get the information but I need to take some time out and do my blog. I have to make choices about what I can and can’t do all the time and I’m amazed at how so many of the polio survivors are hanging in there.

So here we go, testing my poor, tired brain. The Retreat was wrapped up with an opportunity for everyone in the food hall/meeting room to share their thoughts on how they had found the last three days. Many of the accounts were quite moving and we were enveloped in an aura of good will.

After that is where things started getting a bit hectic. We were on our own for lunch before the conference officially started at 1.00pm. By then, hundreds of delegates had descended on Roosevelt Warm Springs and those of us who had been at the Retreat remarked on how we were feeling a bit ‘invaded’. We had all become familiar and comfortable with our fellow ‘Retreaters’ and had to do a mental gear shift to embrace the ‘newbies’. Two of those to join us were fellow Australians Dr’s Margaret Peel from Queensland (GP and polio survivor) and Nigel Quondoc (physical rehabilitation specialist) from Adelaide. I’ve met Margaret a few times and she is also a representative on the Polio Australia committee. It was my first time meeting Nigel, although I had communicated with him by email after I’d read that he was attending the conference in the Post Polio Support Group of SA’s Newsletter. He appears to be a very pleasant, enthusiastic and relatively young specialist with an interest in PPS - goodness only knows, we could do with a lot more doctors of Nigel’s ilk in Australia. I was also reacquainted with Susan Kerr from New Zealand, who I had first met in 2006 when invited to present at a Board Meeting of Post-Polio Support Society NZ (Inc), then again at our Polio Australasia conference in 2007.

Earlier on, the original ‘core’ group of Aussies and two of the other Retreat participants, Linda and Martha-Jean, decided to drive into Manchester again in search of lunch and souvenirs. Obama t-shirts seemed to be popular. Unfortunately, there wasn’t much to choose from in the lunch department so we ended up back in the town of Warm Springs and found a “Bar-b-q” pit stop. We ate al-fresco as it was such a gorgeous day. The weather has become warmer now with none of the unsettled periods of cloud and drizzle we’ve been having. Linda and Martha-Jean also asked us to dinner that night and we are SO glad we accepted for a number of reasons that will be revealed a little later.

The Plenary session was in a packed auditorium and we were treated to a visit by Franklin Delano Roosevelt himself! After the President gave his speech and left, we were told that it wasn’t really him - how disappointing . . . The fun and games started when we had to find where our next sessions were being held and there were people everywhere. I attended three in the afternoon and I’m afraid I’m vagueing out on the details as I don’t have the program with me. Just as well there are handout booklets for each day! From memory, the first was looking at strategies for finding out more about PPS by Barbara Duryea, which was excellent, in spite of my lame description. The second was an overview of a clinical assessment by Dr’s Fred Maynard and William DeMayo, ably assisted by two polio survivors who were happy to strip down to their shorts (male) and swim suit (female) in order to demonstrate key physical considerations. That was really interesting. The final sessions were all held at another facility down the road a bit - which was a bit of a challenge for some people – although shuttles were available if you knew where to go. When I got there, I discovered this incredible line all the way out the door and snaking its way along the path outside. Believe it or not, this was the dinner queue! I found it extraordinary that hundreds of people had to stand in line for a boxed sandwich and salad for their evening meal. I thought the system was fraught at the Retreat where there were only 60-something of us! It wasn’t so bad for people on wheels of some kind but for those using sticks and crutches, I can’t imagine how they coped. I went inside to attend a session on writing memoirs to see if I could pick up any tips for our own “Glimpses of Polio” book project.

At 7.15pm I met up with Fran, Liz, Shirley, Linda and Martha-Jean to drive to a place Linda knew about that served alcohol. We have been grog-free during the Retreat and Warm Springs is a ‘dry zone’ so you have to travel if you want to imbibe. The food was the best we’d had since we arrived. I had fried (of course) mushrooms, filet steak, crisp asparagus, and rice pilaf, topped off with pecan pie and ice-cream which Fran and I shared. Delicious! We went around the table telling our personal stories and got to know each other’s journey a little better. Although we Aussies have known each other for a while, we’ve tended to stick to current experiences and polio-related issues. Linda and Martha-Jean very generously offered to pick up the tab which was a lovely gesture. The restaurant had a number of rockers on the front porch and we all had a seat whilst trying to remember the words for the theme tune of the “Beverly Hillbillies”. With that, one of the staff came out and told us tomorrow night (Friday) was Karaoke night and we should come back – we’re thinking about it. Gotta be better than the pizza the catering staff have planned. Stay tuned.


2nd Day of Conference – Friday 24th April 2009

It’s not even 8.30pm and I’m ready for bed! The day has been quite warm and this evening is balmy, clear and still. In fact, it’s so lovely outside I’ve just relocated to the veranda looking out over the lake. Very peaceful – apart from the constant buzz of these HUGE ‘bees’ that look just like big, fat bumble bees and are called ‘carpenter bees’ but are actually a fly. They are quite prolific here but they don’t bite or even land on you, just hover wherever there’s wood which they burrow into and make quite a mess. There’s wood dust everywhere and, given time, their burrowing can undermine the integrity of a structure. There’s Canadian geese squawking away and I took a photo of an abandoned clutch of eggs yesterday.

It was difficult getting out of bed today and I missed the morning session I wanted to go to because I wanted to get my blog done and, as much as I try, I can’t do everything and be everywhere at once. However, I was in time for the second session which was an Anaesthesia Update by Dr Selma Calmes (Ret). Selma is a polio survivor and I’ve read lots of her articles via Post-Polio Health Int’l. I’m not really sure what’s ‘new’ but it was interesting. This was followed by Communicating with Your Physician: Techniques that Work. The format was a bit of a panel discussion between polio survivor, William Stothers from The Center for an Accessible Society (San Diego), Dr William DeMayo and Barbara Duryea from John P Murtha Neuroscience and Pain Inst., with questions from the audience. We were able to pick up a book called “A Guide for Older People: Talking with your doctor” that will be a good resource.

Because we had to organise our own lunch, I’d collected an extra croissant and a couple of boiled eggs at breakfast time and just ate that. I went outside in search of a seat and ended up joining the Netherlands contingent made up of a group of health professionals who were accompanying one of the speakers, Dr Frans Nollet. Dr Nollet also joined the table with Dr Daria Trojan from Montreal Neurological Institute and Hospital who I had met last year. I attended their joint session in the afternoon – Finding Causes of and Managing Fatigue which explained the variety of ways in which polio survivors experience fatigue which may not have as much to do with post polio syndrome as a symptom but rather the degree of energy expended when pacing is not observed. Not new, just the constant reminder.

In addition to other country representatives, Liz and I were invited to attend a meeting with Post-Polio Health Int’l’s Board of Directors and staff for an open discussion of international post-polio issues. John Tierney had heard about it from our New Zealand colleague so as any politician worth his salt would do, he decided to crash the party. Of course, he was made welcome. The object of the exercise was to hear our views about how we can all proceed to met the needs of polio survivors around the world. This was only a one hour forum and I’m sure we all would have liked to spend more time on this subject. We heard from representatives of Nigeria, India, The Netherlands, Germany, New Zealand, Japan and Canada. Of course, Nigeria and India still have active polio and apart from an investment in the polio eradication program, there is little or no support for those who contracted polio and require rehabilitation and aids. Polio survivors in Nigeria as known as ‘crawlers’ because that’s the only way they can get around. As a result, they also miss out on any form of education as they can’t get to classes. Conversely, Germany and The Netherlands have full and extensive services for their polio survivors and I, for one, felt very envious of their system. Liz was asked if Australians make much use of the internet, which thought was an interesting comment . . . We all know it could be a bit faster but good old Kevin (Rudd) is planning to chuck in a few billion $$$ to fix that up so we can keep up with the Jones’s. I just can’t wait to get home to my pet kangaroo, hop into its pouch and go for a jump around my dessert backyard (said with tongue firmly in cheek for any non-Australian readers who may be wondering).

We had pizza for dinner and people were able to view the 1940-something movie “Sister Kenny”. I’m often asked how we profile Sister Kenny in Australia as we all know how big she was in the USA, even getting a few hospitals named after her. We just have some little museum in her Queensland hometown, the name of which escapes me and I can’t look up at the moment. But that just proves the point, I guess. However, her controversial legacy lives on.

I just realised I haven’t taken one photo today so don’t bother looking for anything new in the photo gallery. It’s become quite dark now and my battery is just about gone, so I’m off that that early night I’ve been promising myself before the last day of the conference tomorrow. So good night y’all!


3rd Day of Conference – Saturday 25th April 2009

It’s hard to believe that this is the last day of our stay at Roosevelt Warm Springs and Camp Dream. Our time has been absolutely packed to the rafters and my head is so full of information I don’t think I can take in one more piece of information. I’ve got papers and books and bags and T-shirts that people have given me, all waiting to be squeezed somehow into my suitcase tomorrow. As always, I over packed – ready for every contingency – apart from a distinct lack of business cards to share around. I’ve been writing my details on serviettes, scraps of paper, and on the back of other people’s cards. They’re probably sitting on my dresser at home, safe and sound . . .

Today I attended a number of great presentations, starting off with two sessions entitled First Step in Pain Treatment: Finding the Cause and Second Step, etc. This was a panel of physiatrists with the majority of information coming from Amy Clunn, Southeastern Rehab Medicine, Ocala, Florida. Dr Clunn gave an overview of the variety of pains that might affect a polio survivor relating to: muscle atrophy, bones & joints, nerves, spinal and circulatory system. There was quite a discussion about sacroiliac (pelvic) joint pain and questions were asked about various treatments. As I have most of the speakers notes, these will be good to print in future newsletters.

After lunch, I sat in on demystifying the Equipment of Assisted Breathing, only some of which covered CPAP’s, Bi-Level’s, trach ventilators, and the various masks that can be used with them. It assumed knowledge that I don’t have so I can’t really comment on whether anything astounding was revealed. There are extensive handout notes, so I’ll have to read them at some stage. However, Betsy Thomason, a respiratory therapist, gave a very interesting talk on the strength associated with breathing out. That may sound a bit unusual but Betsy provided a demonstration by asking someone to hold their arm out to the side and resist her pushing down on the arm whilst the person inhaled. There was no resistance. Then she asked the person to exhale whilst resisting Betsy’s pressure, and it was clear that this was the stronger position. The idea behind that demonstration is to experiment with exhaling when doing more strenuous tasks such as standing from a seated position. It’s not what they teach you at the gym but it was interesting.

The closing Plenary was presented by David M. Oshinsky, author of Polio: An American Story. David gave the full auditorium a fascinating look at the history of the innovative March of Dimes campaign which raised substantial funds from the community as opposed to business, resulting in the development of the Salk & Sabin vaccines.

Dinner was set up back at Camp Dream and there would have been over two hundred people getting together to share a “low country boil” (a kind of jambalaya) and our final evening together. This meal consisted of a mess of sausage, corn, squash, rutabaga, and crustaceans such as crawfish which is not part of my diet regime. Luckily, we’ve made great pals out of a couple of the catering staff, Lauren and Mack. Earlier in the day, I’d asked Lauren what the meal option was and she’d told me it was a ham and salad roll which didn’t do much for me. She told me to leave it with her and went on to organise for me to have a ‘chef’s salad’ consisting of salad stuff and ham – certainly a better option. There was also entertainment by a square dance group, followed by a couple who did a great job of singing covers.

I managed to chat with Indian born Canadian, Ramesh Ferris, who had polio as a baby and was adopted by Canadians. Ramesh is now 29 yo but a few years ago he visited his birth mother in India and witnessed the total lack of rehabilitation and mobility aids available to polio survivors there. Following this experience, he decided to raise money and awareness for their plight by hand cycling across Canada: www.cycletowalk.com. He’s keen to do the same in Australia and I brought John Tierney into the conversation to see if he had any ideas on how we may be able to achieve this. A work in progress.

Others I caught up with were Susan Kerr from New Zealand and Micki Minner from a group in Arizona who I’ve been exchanging emails with for a couple of years. I ended up going for a sunset dip in the pool with a number of our original Camp Dream Retreaters and we all sang songs as the night deepened. Then it was time to say goodbye as I probably won’t be seeing many of them in the morning when we all head out at different times. We’ll be taking our time with a target of 9.00am departure. There’s no rush for any of us. We’re taking John Tierney back to the airport for his afternoon flight and it will be fun trying to fit his extra suitcase in the back. I just hope he can navigate!

Now, to bed zzzzzzz


From Warm Springs to Atlanta – Sunday 26th April 2009

Apparently today was “Hug an Australian Day” so I got plenty of those in when saying goodbye to the people in my lodge. It was one of those ‘bitter-sweet’ experiences where I felt I was ready to leave but knew I would be separating from people I had come to know and whose company I’ve truly enjoyed over the past week. I will certainly miss that sense of camaraderie we achieved at the Retreat.

As we were not in any hurry, we thought we would take a look at the historic pools which appear in the movie “Warm Springs”. They are only filled once a year because they take so much water and the mineral composition of the springs undermines the structure of the pools over a period of time. We were given a tour by a woman named Suzie who had been rehabilitating at Warm Springs as a child when FDR was still around. She was able to tell the story of the day he died and the impact that had on the Warm Springs community.

Because it was Sunday, we already knew the only breakfast we would get was at MacDonald’s in Manchester, so off we went for more hot cakes and fruit salad. With full stomachs, we hit the road again and somehow found our way back to the hotel where we checked in before driving John Tierney to the airport and dropping off the hire car. We decided to catch a taxi into Atlanta city rather than drive for our afternoon’s activities.

Fran had been keen to visit the High Art Museum and she, Liz and Shirley decided to avail themselves of three wheelchairs to get around. That seemed to work well and they got to see a lot more than just walking around. We then caught another taxi ‘down town’ with the idea of having a gentle, little tour of the area in a carriage drawn by a horse called “Miss Kitty” (???). None of us had travelled that way before and it was a really pleasant half hour. We were dropped off at one of the most renowned Southern-style cookin’ restaurants in town, “PittyPat’s Porch” where you can get drinks such as ‘Mint Juleps’ and the like. John had visited the place prior to the Retreat and recommended it. I had the ribs which were, of course, ENORMOUS. I don’t want to go within a 10km radius of scales when I get home. At least we were too full to even consider dessert, which saved me from adding yet another fat roll to my midriff.

Tomorrow (Monday) is our last day and we intend to have a better look around Atlanta city before catching our Delta flight to LA at 6.50pm. Shirley will be leaving earlier for Toronto to visit family. Although we’ll be flying for approx 4 ½ hours to LA, we arrive at 8.30pm because of the time variation, then depart LA at 11.30pm, fly for around 14 hours and arrive in Melbourne at 7.55am on Wednesday 29th. Very confusing. I have heard that there is a bit of a scare with Swine flu coming up from Mexico. Not sure how that will affect us and our flight from LA - considering it’s proximity to Mexico. I guess we’ll find out tomorrow.

This is my last blog entry for this trip. I may make a few minor changes if I find typo’s or I’m reminded of something I should have included. I might even add a few new photos when I have a bit more time. I hope you have enjoyed reading this as much as I have enjoyed bringing you a taste of our adventures. Roosevelt Warm Springs was an amazing place to visit, especially with so many polio survivors sharing their memories and experiences of time spent rehabilitating there. An unforgettable, once in a lifetime opportunity that I’m glad I could share with my wonderful travelling companions Shirley Glance, Fran Henke and Liz Telford. As polio survivors, the perspective they provided me with made the experience all the more profound. I think our enthusiastic Australian presence will also be remembered by our new American and Canadian friends in the wider polio community.

Now we will just have to see what we can do about running Retreats in Australia . . .

THE END