the cooked full roast chicken on its silver platter sliding down the length of the long twenty seat plus dining table -shipmate, Alma Doepel Tall Ship Alma Doepel Alma Doepel was built in 1903 in Bellingen, NSW, by Frederick Doepel and named after his youngest daughter Alma. Up until 1915 she operated around Sydney and the northern rivers district of NSW. In 1915 she was brought by Tasmanian owners and commenced freighter operation. The ship criss-crossed Bass Strait between Hobart and Melbourne. Carrying timber and general goods. She undertook wartime World War Two service in Papua New Guinea. From July 1988 the Alma Doepel was used as a sail training ship on Port Phillip Bay and moored in Melbourne until 1999. Sea going wear and tear took its toll and the ship was unable to continue in this role. She sailed up the Australian east coast and found a berth at Port Macquarie unable to continue on and this is where she stayed for many years in a floating dock. Unseaworthy and in need of repairs. The local volunteers, although enthusiastic, were unable to do a restoration. The ship was returned to Melbourne and from 2013, she was berthed at No 2 Victoria Dock Melbourne. Being mounted on a submergible barge, undergoing an extensive refit to return her to survey so she can recommence sail training. On 16 October 2021 she was lifted off the barge and back into the water. Restoration Works In the years leading up to 2025, volunteers continue to engage in restoration work. Restoration is in Docklands Melbourne. All work is carried out with donations received. Completion total cost is estimated at five million dollars. Enabling sailing once again on Port Phillip Bay. Occasionally a tour may be available to see restoration works. About two-thirds restoration was completed in 2023. Ship masts fitted in 2024. Planned fitout completion is now extended for early 2026. Sea trials are expected going into 2026 for sea worthiness compliance. Followed by sailing with crew and passengers. Possibly by middle 2026 onwards. First Experience on a Ship I sailed on the Alma Doepel pre-1995. An overnight winter's weekend tall ship experience on Port Phillip Bay off of Melbourne in Victoria. Group of twenty or so, plus crew. The sleeping quarters were located below deck, featuring double-deck bunks that extended along both sides of the interior hull, with a walkway in between. You slept in your own sleeping bag, which you brought on board along with a few personal belongings. The planned evening meal was to be a large, cooked roast and beverages were supplied. Crew and shipmates shared friendly banter. The crew could be given a helping hand with ropes and rigging. The sea trip is advertised as experiencing life on a tall ship for a weekend. Gale Force Radio Warnings However once aboard, soon all shipboard activities were curtailed due to severe weather. Gale warnings issued for bays and open waters. A successful attempt was made by a few to go by ship's tender to the Sorrento Hotel in full safety gear and return. Transfer to the tender lowered alongside the rocking ship was fraught with caution. The weather is worsening by the hour. Crew only allowed in the high rigging due to bad weather. Little of the evening meal was eaten. The untouched full chicken roast on its silver platter sliding down the length of the long twenty seat plus dining table. Only the raised table rim prevents spillage to the floor. All galley plates and kitchen utensils falling loudly onto the galley floor from normally secure storage space. Drinking water was preferred by most instead of onboard beverages to avert feelings of seasickness. A howling overnight & cold gale force wind cut through the rigging. No other vessels out on the bay apart from a few large international freighter ships. Frequent marine radio communications conveyed warnings of gale force wind threats to shipping in bays. Call For Volunteers Only a few hours into the voyage the ship's captain, Captain Wood, called for volunteers from the crew to furl in the most forward sails on the Bowsprit (projecting long pole). The Bowsprit bucking wildly up and down in the worsening swell and strong wind. Only two younger crewmen volunteered. All other crew declined. These two crewmen climbed out over the white capped water. All hoping that if a fall occurred the small safety net between the bowsprit and choppy swell would prevent a man overboard emergency. Everything must be battened down and sails furled away. Ship rocking noticeably during anchorage overnight in the wild storm. During the night, the ship's crew used a loud portable drill to drain lapping water on floorboards in the sleeping quarters. No doubt the bilge pumps running non-stop beneath. Sleep continually interrupted by loud protesting creaking timber joints and frequent squalling wind heard over the deck above. Scurry Back to Home Port and Safety In the morning daylight, the ship tacked so as to run with the strong wind enabling much smoother sailing back to port. Several hours of sailing from near the entrance of the bay. Curling waves crashing consistently over the side wooden railings washing the deck fully in the heavy swell. Seawater as deep as one's knee's spreads across the timber deck and quickly drains through the deck side scupper drainage holes. All were careful not to be caught on the open deck during a breaking wave. The crew could be overheard saying the main anchor was dragged on the sea floor in overnight storms moving the ship a short distance. All found it impossible to maintain self-balance. Hand grips on any ship fittings were essential to move about. All crew and passengers arrived back safely in port late morning. Although most if not all were nauseous for the past twenty-four hours from the wild weather. A seafaring experience not forgotten. Good job by the crew and the ship's Captain Mr Wood. No further personal sailing for over twenty years. Traveldriven ENTER DOCKLANDS GOOGLE MAPS ENTER ALMA DOEPEL WIKIPEDIA ALMA DOEPEL By Sail & amp ;Adventure Limited - Sail & ;Adventure Limited photo library, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=29873986 OFFSHORE SORRENTO PORT PHILLIP BAY, VICTORIA GALE FORCE WINDS ON BAYS THE SAME WEATHER SYSTEM OUR SHIP DID NOT VENTURE OUTSIDE OF THE BAY ENTRANCE SHIPMATES BOARDING FOR THE WEEKEND SAILING CAPTAIN WOOD USING BINOCULARS HELMSMAN & WHEELHOUSE SECURE GRIP ON FIXTURES VOLUNTEERS FOR THE BOWSPRIT BOWSPRIT SAILS FURLED PITCHING MAST & CREW CREW PULLING ROPES ON TALL SHIP PULLING ROPES ADJUSTING SAILS DECK WASHED BY WATER OVER TOP RAIL REAR VIEW OF GALLEY DINING AREA WARMER INSIDE OUT OF ICEY GALE NO HEATING ON A TALL SHIP SAIL FURLING & GALE WINDS CREW AND TENDER OF TALL SHIP SHIP'S TENDER ROCKIN AGAINST SHIP SHIP'S TENDER TO SHORE SHIP'S BUNKS & LAPPING WATER HOLES DRILLED BY CREW TO DRAIN WATER RETURN TO MELBOUNE, HOME PORT & STABLE SECURE FOOTING ALMA DOEPEL RESTORATION DOCKLANDS ALMA DOEPEL FITTINGS INSIDE WHARF SHED FOR RESTORATION LATE 2023 ALMA DOEPEL WHEEL BOX ALMA DOEPEL AFLOAT AWAITING MASTS & RIGGING PHOTO TAKEN LATE 2023 ALMA DOEPEL RESTORATION 2023 OPEN DAY & SAUSAGE SIZZLE ALMA DOEPEL OCTOBER 2025 KEEL & FRAMES FINISHED ENGINE INSTALLED MASTS, DECKING, & BOWSPRINT FINISHED ALMA DOEPEL DOCKLANDS 2025 RIGGING & SAILS YET TO BE FITTED INSIDE THE MAIN GALLEY YET TO GET FINAL FITOUT STEERING BOX AND WHEEL FINISHED & IN WORKING ORDER ON BOARD SHIP WHEEL STEERAGE INSTRUMENTATION INSTALLED & FINISH DETAILS WORK IN PROGRESS ENCLOSED SIDE RAILING YET TO BE INSTALLED ABOVE SCUPPER HOLES PREV VICTORIA NEXT HOMEPAGE

Squeaky Beach is squealy fun for some -Traveldriven Squeaky Beach Squeaky Beach is squealy fun for some. A statement that encapsulates the unique charm of this particular beach. Located in Wilsons Promontory National Park in Victoria, Australia, Squeaky Beach is renowned for its pristine white quartz sand that produces a distinctive squeaking sound when walked upon. This natural phenomenon adds an element of novelty and amusement to the beach experience, making it a favourite destination for visitors seeking a fun and memorable day out. Beyond its playful allure, Squeaky Beach also offers stunning coastal views. The surrounding granite boulders create picturesque backdrops for sunbathing and picnicking, while the sound of waves provide a soothing soundtrack for relaxation. Nature enthusiasts can explore the diverse flora and fauna of the area, including native wildlife such as wallabies and echidnas. Visitors to Squeaky Beach can enjoy a range of activities, from beachcombing and sandcastle building to beach picnics. Whether you're seeking adventure or simply looking to unwind in a beautiful natural setting, Squeaky Beach offers something for everyone to enjoy. In conclusion, Squeaky Beach's squealy fun factor is just one aspect of its overall appeal. With its natural beauty, recreational opportunities, and unique sand-squeaking sensation, this beach is a must-visit destination for those looking to experience the best of Australia's coastal wonders. Squeaky Beach Voted Best Australian Beach Squeaky Beach is easily accessed by car and is the main beach of Wilsons Promontory. The quartz white sand squeaks loudly underfoot. This is a feature of beach sand grains compressing air and rubbing together producing squeaky sounds when walked upon. Named as Australia's best beach for 2024 by Tourism Australia's B. Farmer and compared against 12,000 beaches within Australia. The beach is unpatrolled and 700 metres long nestled in natural coastal surrounds. Rips and currents are common making it unsafe to swim. Visitors often find themselves alone on the beach in off peak holiday times. The beach is best visited in the warmer summer months. Outside of these months April to November is often chilly weather in Southern Australia. Ten to less than twenty Celsius in the daytime and with beach wind chill making it feel much colder. Wilsons Promontory The Prom as it is often referred to is a wilderness peninsula and most of the area is a national park with camping allowed at Tidal River. It is the southernmost point of mainland Australia. Three hours drive from Melbourne. Mount Oberon, 556m high, may be hiked with views over the peninsula and Squeaky Beach. Much of the walking to Mount Oberon is over bare rock. There are no retail services at Tidal River. Phillip Island The island is a two hour drive from Melbourne CBD. The short San Remo bridge connecting the island to the mainland gets very congested in peak holiday periods. Phillip Island hosts the small fairy penguins, which nest in burrows on the beach. Tickets for the nightly sunset Penguin Parade grant access to viewing platforms and boardwalks. An opportunity arose to drive a lap of the Phillip Island Grand Prix Circuit with sweeping bends and large ocean views. The drive was at normal road speed and slow paced, but a good experience. Phillip Island is a Grand Prix world championship venue for motorbikes. Cowes is the main township. Offering various accommodation options for visitors. Lakes Entrance A seaside town and fishing port in Gippsland, Victoria. About three hundred and twenty kilometres east of Melbourne. The Gippsland Lakes are connected to Bass Strait through a short canal. The canal is two km from the Lakes Entrance town centre. The water bodies are three naturally connected shallow lakes. The lakes are named Lake Wellington, Lake King and Lake Victoria. Water sports, boating and fishing are allowed. The water catchment area is over two million hectares. Water is often brackish. If time allows, drive from Lakes Entrance and onto Cann River. Cann River is a very small town on the Princes Highway leading into New South Wales and onto the coastal route to Sydney. Fuel and food are available in Cann River. Traveldriven COWES PHILLIP ISLAND LAKES ENTRANCE GOOGLE MAPS DRIVE PHILLIP ISLAND TO CANN RIVER WHERE THE LAKES MEET THE SEA LAKES ENTRANCE, VICTORIA CANN RIVER, VICTORIA Wilsons Promontory and Squeaky Beach as showcased by Molly Dixson Youtube channel. Thanks for allowing sharing. PREV VICTORIA NEXT HOMEPAGE

The Black Spur The drive begins eighty km from Melbourne CBD and is part of the Maroondah Highway between the towns of Healesville and Narbethong in central Victoria. The Black Spur road can be driven as a short spirited twenty-minute drive or a leisurely thirty-minute drive. Most roadside speed signs are eighty km/h. There are extensive roadside towering tree ferns and mountain ash trees. The Black Spur is a twisty two-way road and demands respect. Road surface is often damp. Popular with all road users. Particularly motorcycle riders. The Black Spur drive is well known as one of the best driving roads in Victoria after the Great Ocean Road. I would agree. A highlight of the Black Spur is about a six km road section of spectacular mountain ash and ferns. Much more of the drive is of open woodlands and is of about thirty km in total. The road continues onto Marysville. A popular small tourist town in the forested hills. The popular Steavensons Falls is a short drive from town. Victorian Black Saturday bushfires almost wiped Marysville off the map in February of 2009. Causing one hundred and seventy-three deaths. The small town has since been rebuilt. Traveldriven MARYSVILLE GOOGLE MAPS MAP OF BLACK SPUR DRIVE BLACK SPUR, YARRA RANGES BLACK SPUR NEAR DOM DOM SADDLE BLACK SPUR DRIVE MOUNTAIN ASH & FERNS ROAD MARKER 73 to 77 VIDEO LOOPS SEVERAL TIMES PREV VICTORIA NEXT HOMEPAGE

Macquarie Pass The Pass is an eight km short, forested mountain pass on the Illawarra Highway. About two and a half hours drive from Canberra or two hours from Sydney. The Pass contains a few single lane sections with steep gradients. Acknowledged as an area for motor vehicle incidents. There are a few small quirky roadside oddments. Height above sea level of six hundred and twenty-two metres. If driven to the conditions, and allowing for passing traffic, Macquarie Pass is an enjoyable scenic road that winds its way through lush greenery and offers breathtaking views of the surrounding landscape. The road meanders through the Illawarra Escarpment, providing drivers with a sense of adventure as they navigate its twists and turns. Along the way, travellers can admire the diverse flora and fauna that call this region home, from towering eucalyptus trees to colorful bird species. As you ascend or descend the pass, the elevation changes offer a unique perspective of the terrain below, creating a sense of awe and wonder at the natural beauty of the area. The road is well-maintained, if driven slowly, making for a smooth and pleasant driving experience, allowing visitors to focus on the stunning scenery unfolding before them. During certain times of the year, the pass is adorned with vibrant wildflowers. The air is crisp and fresh, invigorating the senses and providing a welcome escape from the hustle and bustle of everyday life. Whether you're a nature enthusiast, a photography buff, or simply seeking a peaceful drive or an exciting faster drive, Macquarie Pass promises a memorable journey at every turn. Bowral, Don Bradman and Kiama Macquarie Pass allows access between Bowral, a southern highland town and coastal towns of NSW. Bowral was the boyhood home of Australia's greatest cricketer Don Bradman. The Don Bradman cricket oval and museum is in Bowral. As is a lifesize statue. Local cricket matches are played on the oval. Bowral is connected to Kiama via Macquarie Pass. Kiama is a small coastal town well known for ocean blowholes along the rocky foreshore. Kiama fish and chip shops are renowned for serving incredibly delicious fish and chips that are a favourite among locals and visitors alike. The perfect combination of crispy batter, tender fish, and golden fries makes these dishes a culinary delight. Best enjoyed outdoors under the cool shade of the central main street trees. The provided public seating allows diners to relax and savor every bite while immersing themselves in the charming surroundings of Kiama. The ambiance of the bustling main street, coupled with the tantalizing aroma of freshly cooked fish and chips, creates a lasting memorable moment for anyone indulging in this classic seaside meal. Traveldriven BOWRAL (southern highlands) GOOGLE MAPS KIAMA (seaside town) GOOGLE MAPS MACQUARIE PASS IS A TWO-HOUR DRIVE FROM SYDNEY A FEW HAIRPIN BENDS 15KM MULTIPLE TIGHT BENDS & CURVES DRIVING DOWN MACQUARIE PASS THE DON BRADMAN OVAL & MUSUEM BOWRAL, HOMETOWN OF DON BRADMAN LITTLE BLOWHOLE, KIAMIA NSW PREV NSW NEXT HOMEPAGE

DRIVE MELBOURNE CBD TO HALLS GAP GRAMPIANS NATIONAL PARK In the general area of Halls Gap Victoria nestled within the Grampians National Park. There are plenty of bush camping sites. Reasonable priced off-peak accommodation is available in Halls Gap. There are no Dingo's in the National Park. Do not approach wild kangaroos. They have a nasty kick and scratch with their paws. Quite often many kangaroos congregate on the Halls Gap football\cricket oval to feed on the green grass. Hand feeding of native fauna is allowed at the Halls Gap Zoo off of Ararat\Halls Gap Road. Seen daily: Every day in this beautiful Australian landscape, you can witness the graceful hops of Kangaroos, the swift movements of Emus, the elegant presence of White Cockatoos, the vibrant colors of Parrots, and the melodious calls of Magpies echoing through the air. Additionally, smaller native birds add a touch of charm as they flit about, creating a lively and dynamic ecosystem. Often heard daily is the unmistakable laugh of the Kookaburra, a sound that resonates through the trees and adds a sense of joy to the surroundings. Often seen: Among the creatures that frequently grace the landscape are Wallabies, Possums, Kookaburras with their distinctive calls, and even feral deer that roam the area, blending into the natural scenery. Occasionally seen: From time to time, lucky observers may catch a glimpse of the elusive Koala, the unique Echidna, the majestic Wedge-tailed Eagle soaring high above, the silent flight of an Owl, as well as feral white goats, foxes, and feral domestic cats adding a touch of wildness to the environment. Not to forget the occasional appearance of snakes, adding a hint of mystery and intrigue to the diverse wildlife that calls this place home. Rumoured Sightings: Since the 1940s, the mysterious legend of the Grampians Puma has captured the imaginations of locals and visitors alike. Whispers of sightings of unusually large cats roaming the vast expanse of the Grampians National Park have persisted over the decades, fuelling speculation and intrigue. According to the lore, these majestic felines were purportedly set free into the bushland by departing American WW2 servicemen as they bid farewell to Australia at the conclusion of their postings. These big cats, numbering five in total, were none other than pumas, serving as the units' beloved mascots during their time in the region. The servicemen, deeply attached to their animal companions, were said to have taken a drastic step to ensure the safety and well-being of the pumas by releasing them into the wild, rather than risk having them euthanized by the authorities upon their departure for the United States. This act of loyalty and compassion towards these creatures has become a part of the folklore surrounding the Grampians Puma, adding a poignant and enigmatic layer to the tale. As the stories of the Grampians Puma continue to be passed down through generations, the mystery of these elusive felines persists, with occasional reports of sightings keeping the legend alive. Whether a product of fact or fiction, the legend of the Grampians Puma remains a captivating and enduring aspect of the rich tapestry of folklore that weaves through the history of the Grampians National Park. Puma Sighting? It was nighttime and solo driving between Devils Garden State Forest and Mokepilly Bridge 9 km from Halls Gap on the main Grampian Road. A silky black animal off to the right side of the road a little bigger than a large dog illuminated in the car's high beam headlights. The animal sat up, turned and ran into roadside ferns. It moved like a cat, not a dog. Feral cats can grow to dog size. This appeared much bigger than any dog. Perhaps it was the touted Grampian puma claimed to have been occasionally seen since the nineteen fifties. I wasn't stopping for a further look. Who knows if there is any truth to it? UAP night lights in Victoria Valley? The Grampians for many years, were frequently visited by the 'Colonel', a retired Air Force character known for his intriguing pursuits. People can recall spotting him in Halls Gap, diligently collecting supplies for his mysterious ventures. The Colonel, as he is referred to, had a keen interest in UFO activity documentation, a subject that fascinates many. In his own words, he shared, 'We are gathering UFO activity documentation, and I myself often conduct all-night field observations in Victoria Valley.' Showing dedication to this enigmatic field, as he tirelessly invested his time and effort into uncovering the secrets of the night sky. These strange night lights that the Colonel spoke of sparked curiosity and wonder among those who heard his tales. They evoke a sense of mystery and intrigue, leaving one to ponder the enigmatic phenomena that may unfold under the veil of darkness. The Colonel's nocturnal escapades shed light on a realm that exists beyond the ordinary, inviting contemplation on the unknown forces that may be at play in the vast expanse of the Victoria Valley. Traveldriven HALLS GAP GOOGLE MAPS EMU EATING HABITS EMU COOKATOO GRAMPIANS BIRDLIFE KOOKABURRA LAUGHING A photo of a puma similar to sightings descriptions. Since the 1940s as reported to local newspapers and radio up to the present day. GRAMPIANS PUMA SIGHTINGS VICTORIA VALLEY UAP SIGHTINGS? PREV GRAMPIANS NEXT HOMEPAGE POST

DRIVING THE OUTBACK Day One Embarking on a long road trip is always thrilling and filled with anticipation of new experiences that await. This particular journey began with the first day of driving from within the State of Victoria and into South Australia, passing through Adelaide and beyond. This road trip focusing on South Australia the Northern Territory and Western Australia. Road Trip Plan The plan was to stop by interesting wayside sights and to avoid driving on country highways after dark. For safety, try to avoid night driving where the likelihood of wildlife collisions is increased. Night driving is also a risk for drivers with a greater chance of induced driver fatigue. Beginning in the winter month of May the weather was pleasant and cool, with the promise of warm and sunny days in central and northern Australia in the coming days. A viewpoint many should share is to embark on and complete such a road trip in a safe manner. Anticipate great experiences and sights, but the key is that everyone returns home safely even if this means unforeseen delays. Do not compromise safety by rushing to make up for lost time. Unfortunately, a major and unsettling event unfolded on this first day of the road trip. Highway Blocked Road Trip to the Outback The plan was to arrive in the small roadside town of Dublin sixty km north of Adelaide for an overnight stay before nightfall. But due to unfolding circumstances this was unavoidable. Some thirty km before Dublin and up ahead and spread across the highway were emergency vehicles and their flashing lights. Police, fire brigade, ambulance, SES road rescue and a short line of stopped traffic. When joining the stopped vehicles, the scene was one of desperation for emergency personnel to attend and evacuate occupants of an on the road multi vehicle accident. Ambulance Helicopter Very shortly an ambulance rescue helicopter arrived and attempted to land in a roadside paddock. Thick clouds of dust kicked up from the rotor blades made it unfeasible to land, so the helicopter lifted up and circled around to land on the road centre about a hundred metres away. All the while traffic was backing up for many km or some miles. This section of straight two-lane freeway was separated from oncoming traffic by a wide centre divide. Television news reporters along with their cameramen were arriving and setting up news cameras mounted on tripods. From a personal perspective nothing could be done but to wait on the road and hope for the best outcome to all people involved. No traffic was allowed through for nearly two hours until rescue crews cleared the scene. One road lane was then opened for traffic to pass slowly through. Apparently, there were no fatalities at the scene. Although urgent life support was required on at least one person trapped in a vehicle and then lifted by air ambulance to an Adelaide hospital. Dublin in South Australia The accident delayed arrival time in Dublin until well after dark with no chance to get an idea of the lay of the land, so to speak, in the now gone fading light of day. Only one service station and one hotel remain open with no meal service at this late hour anywhere in town. A prior decision was enacted to park overnight next to an area called Dublin Wayside Stop. The most practical and only choice considering the late hour and the unfamiliar area. On a quirky sidenote, Dublin is home to the Giant Cockroach. This is an Australian 'Big Thing' displayed in a roadside Dublin paddock. The 'Cockroach' was first shown in central Adelaide's Rundall Mall. The structure is made of scrap metal and was constructed as part of a local protest against a federal and state government proposal to build a large waste dump in the Dublin area. Meant to publicly shame politicians of the time. Presently the structure is situated next to Port Wakefield Road, and passing traffic on the busy road can easily miss it. Reflecting On The Day's Events Happening upon the road accident on the first day of the road trip it was a sobering experience and reminder to all to do the right thing and to pay attention when driving. All need to remember to take regular driving breaks on long road trips. Road accidents not only adversely affect those directly involved but also connected families, emergency personnel and witnesses. Respect the road laws and the roads driven upon. Stay safe and enjoy the open road. Early the following day Andamooka was the next destination deep in Outback South Australia via Port Augusta. The drive is under six hours from Dublin and a little over five hundred km away. Hopefully there will be no road trip Outback delays in the days ahead. At least for a while. Traveldriven ENTER DUBLIN GOOGLE MAPS DUBLIN SIGN AT A ROADSIDE REST AREA CALLED 'DUBLIN WAYSIDE STOP' THE REST AREA HAS A SMALL GRASSED PARK, PUBLIC BBQ, TOILETS & SHADED TABLES THE PARK IS LOCATED ON SIXTH STREET & BECAME AN UNOFFICAL OVERNIGHT STAY HIGHWAY ROAD ACCIDENT BEFORE DUBLIN TV NEWS AND REPORTERS AMBULANCE HELICOPTER LANDING ON THE MIDDLE OF THE HIGHWAY PREV AUSTRALIA 2025 NEXT

WHATEVER IT TAKES KEEP GOING CIDP & RECOVERY? There is a famous expression in English: 'When the going gets tough, the tough get going' –meaning when the situation becomes difficult, the strong will work harder to meet the challenge. Sometimes, when we are in a tough situation, an inspirational quote or saying can help us calm down and focus on what we need to do. Quote On Life "Whether you think you can or you think you can't, you're right". Henry Ford (1863-1947) Ford's quote could be applied to life in general. Have a positive or a negative outlook. It's up to you. From a personal viewpoint. 'It's not rare if it happens to you'. Traveldriven quote WHAT IS CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY UNDERSTANDING CHRONIC INFLAMMATORY DEMYELINATING POLNEUROPATHY SIGNS OF AND EXPLANATION OF CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY OUR PAINTBALL GROUP SNIPERS DEN MELBOURNE I second from left as a lefthanded paintball shooter THE OPPONENT'S CHINESE SOLDIERS? First and only paintball experience. Great day out by all on a hot Melbourne day. We received many hits and returned many back. Eight weeks before CIDP diagnosis. CONNIE & WAYNE ON HOLIDAY HAPPIER TIMES AFTER HOSPITAL DISCHARGE & HOME WITH CIDP My CIDP recovery journey is written below. Living with a rare serious condition from before the onset of the COVID-19 pandemic. Hopefully the worst of CIDP is now behind. In 2019, after hospitalisation for CIDP, a personal decision was made to work on and expand the Traveldriven website over the long term. This choice was primarily driven by the need to stay occupied during an unknown period of impaired physical immobility. The aim was to engage both mind and body. In a positive way. A realisation was that if any significant recovery was to occur it may take years. After CIDP hospitalisation hand dexterity along with normal touch sensation were some of the first physical functions to return. Fortunately, I had basic touch-typing skills. Initially this helped to gradually regain hand and finger coordination whilst also creating an online website. One step at a time through trial and error with no prior website design experience. The hope was to build something useful and relevant to myself and others. The goal was to give purpose to the many days and months of CIDP recovery, (if it happened) that lay ahead. Try to maintain a positive outlook with keeping busy. As imagined, a hard thing to do when physically very limited for the foreseeable future. At times, website building was the only daily focus. Below is primarily published with a view to help other's recently GBS/CIDP diagnosed. An in-depth dive into CIDP for such people. The story written by me as a self-improvement reference. How CIDP changed life in general and for those interested in rare conditions from a non-medical perspective. A factual account. No embellishment needed. As those with CIDP would no doubt agree with. There are virtually no online non-medical long term personal points-of-view to be found about CIDP. The following is a personal perspective based on first-hand experience with CIDP, detailing at first the weekly progression. It primarily highlights positive developments over the ensuing months and years. 9,806 words 35 minutes read Chronic Inflammatory Demyelinating Polyneuropathy An immune system disorder. The myelin sheath of peripheral nerves is damaged. In my opinion, CIDP brings much uncertainty. Saintly patience is required for nerve self-repair. If any repair does occur, it often will take years. CIDP-damaged nerves exhibit a variety of unique symptoms. Following is one individual's perspective. Introduction I live in a small regional city. Located in Victoria, Australia. It is January of 2019 no health issues and fifty-nine years of age. I am working as a food industry employee on the factory floor involving physical work and long periods of standing. Although physically demanding work, I had no problem carrying out work duties. I thought I should get a doctor's check-up. Something didn't feel right. Affecting Daily Life A General Practitioner appointment was booked. I explained to the GP I was experiencing numb toes and tingle sensations. The gist of the consultation was to come back if things did not improve in three or four weeks. Shortly thereafter, a weekend day drive to a coastal tourist town near to the famous Great Ocean Road in Victoria left me wondering how safe my driving was. I own two sedans. One manual and one automatic. Driving my automatic transmission car in the busy main street I stopped in traffic. A car behind and a car in front. I depressed my right foot on the brake unaware the side of my foot was still on the accelerator pedal. Smelling tyre smoke and hearing the car's engine revving I quickly switched the ignition off. I realised I did not have enough feeling in my feet to feel the pedals. An accident avoided and a cautious drive home. Acupuncture? It was suggested acupuncture may be beneficial. Unsure of driving ability. I travelled almost three hours by train to the Melbourne inner suburb of Footscray. With a newly acquired hobbling gait, I walked from the train station to the appointment no more than two short city streets away. Sceptically, I agreed on a two-hour consultation. The Chinese acupuncturist, an older man with a tenuous grasp of the English language at best, inserted needles in both my feet and upon withdrawal all were bent at right angles. The acupuncturist commented the normal needle curvature was severely bent out of shape on all needles. Evidence of extremely taunt tendons. He recommended daily use of a foot spa, the spa water diluted with straight whisky and a further two weekly sessions. Feet submerged in bubbling whisky and water. An incredulous recommendation in my opinion. I returned to my home unconvinced acupuncture made any difference. I felt no different after the one acupuncture session. I declined two further expensive sessions. I did buy a bottle of Jim Beam discounted on sale. I already owned an unused foot spa. I used it once as recommended. I drank the bulk of the whisky over several dinners. An entertaining story. In an Immobile State & Past Trauma I was struggling to lift my feet for no apparent reason. All my fingers tingled and all my toes felt numb. Accessing my automatic car parked in my driveway, I stumbled completely backwards and fell on my lawn. Fortunately, I didn't hurt myself. Not a misstep. But all leg strength momentarily lost. Soon thereafter on another occasion I went out for coffee drinks at a local café with a few family members. We were sitting at an inside table. I raised my beverage in one hand and gripped around the mug’s handle ready to drink. Instead, l spilled the full mug of hot cappuccino coffee over my shirt and table and there was spillage onto the floor. I could see looks of astonishment in those around me. I felt the same. Suddenly experiencing very weak hand grip coordination for no reason. A concerning development I had no answer for. Within two weeks I returned to my local GP for a second appointment. The doctor referred me to a Melbourne neurologist a few hours' drive away. The first appointment was for ten days' time in Ballarat. This is a large regional city in Victoria. Apparently, a visiting Melbourne neurologist attends a consulting room once per month. I spent the time waiting housebound and unable to work. It took six attempts to park my automatic car in the garage behind the roller door. Now unable to drive safely. In these days following my second GP visit both my leg strength and self-balance was deteriorating. I had lost feeling in both feet and my gait was unstable and weakening. At times I had to steady my walking with hands placed on walls inside my house. No public transport is available where I live. I live alone as my wife of twenty-three years passed away with breast cancer two years before. Connie, my wife, would have been whole heartily supportive one hundred percent, as I would of her. Waiting for Medical Help Now, nearly two years later I needed to see a specialist. What is it? At least I knew I didn't have cancer. I have no home support. Several days after my second GP appointment I could barely walk around inside my home. I telephoned the Melbourne neurologist's reception twice and tried to bring the appointment date forward. I offered to get myself to the Melbourne clinic as my condition was deteriorating. My walking is becoming weaker. Reception replied the original appointment was the earliest date and all earlier times were fully booked. I asked if I could speak to the neurologist. 'No, he's with a patient'. Ok, so I waited at home with a stoic attitude thinking everything will be ok after a week or two of rest and time off work. I didn't think a further GP appointment would be helpful anymore. I thought I would get through the weekend, then go to my specialist neurology appointment scheduled by the end of the week. My respiratory condition felt normal during this time. A further five days passed housebound and I was then driven to my neurologist appointment. I attended a medical consulting clinic used by visiting Melbourne specialists. Located in Ballarat. Well over an hour's drive away. Upon seeing myself struggling to walk and assessing absent nerve reflexes the neurologist, who was a prominent specialist in his field, immediately admitted me to St Vincent's Hospital Melbourne. He telephoned the hospital on the spot. Luckily, I carried a small overnight case. I was allowed no time to return home to pack a bag. I was told by the neurologist no medical transportation was available to convey me to hospital, but I must go directly and immediately to hospital. Upon hearing this my driver, a family member, kindly agreed to drive me without delay to the Melbourne hospital. A further one and a half hours' drive and one hundred and twenty kilometres away. I distinctly remember the neurologist telling me I think you have GBS or CIDP. ‘Let's hope not CIDP’. Of course, I was clueless of these remarks. I, like many, not realising the serious health implications of these unheard of conditions. In both Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy one's own healthy immune system turns rogue and attacks the peripheral nerves. Both are classified as autoimmune disorders. GBS is seen as an acute disorder occurring once only and is of a relatively short duration. CIDP is the chronic counterpart of GBS. Both can strike anyone, male or female and at any age. Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy have the same symptoms on presentation to a neurologist. Also, identical treatment. Unknown Cause of Symptoms, Work Difficulty CIDP origins are idiopathic, (unknown). However, one online United States research paper documented a small cluster of GBS/CIDP cases among workers in a piggery attributed to Campylobacter Jejuni. This is a bacterial infection and may be transmitted via slaughtered pig, sheep or chicken. Medical publications such as the National Library of Medicine, Journal of Neuroimmunology etc, cite up to 40% of those diagnosed with GBS/CIDP showed an infection with Campylobacter in the few weeks prior to symptoms appearing as the result of the onset of nerve demyelination. Nerve demyelination symptoms such as numbness, tingling and weakness in all limbs. No Campylobacter was found in the many blood tests I had in the hospital. I don't recall having common symptoms of Campylobacter. The short answer is I never had a Campylobacter infection. Although I can't state this with one hundred percent certainty. Medical literature cites livestock workers with a positive viral infection to Campylobacter Jejuni have a one in a one thousand chance of acquiring GBS or CIDP. For the general population there is a one in a one hundred thousand chance of acquiring GBS/CIDP with no exposure to livestock. Hospitalisation ♿ On the drive to the hospital, I realised this is to be my first hospital admission as a patient in over forty years. Thinking probably, it will be a few weeks until I return home and back to work. Looking back with hindsight it’s fortunate to be naive and not know what might lay ahead. I began intravenous immunoglobulin (IVIG) infusion of Privigen that night, Friday. A mixture of purified antibodies and donated blood plasma. Each infusion takes about three to four hours. Administered through a catheter needle inserted into a vein in the arm to overwhelm the immune system's own antibodies attacking the nerves. In the following days I was moved to another ward. The third consecutive day of IVIG and a late finish of 3 am ending the loading dose of IVIG treatment. Symptoms, Not Good Here I was, experiencing extreme walking difficulty. A patient in a multi bed public ward. I could do little more than observe the surrounding hospital routines. Doctors, nurses, patients and visitors. With sometimes a dose of chaos mixed in. An adjacent patient was visited by a female family member. During one of her visits she collapsed creating an emergency situation. Nursing staff immediately called for doctors and issued a loud PA emergency announcement. Doctors in their white coats came out of nowhere huddling around the collapsed visitor now unresponsive. The blonde woman was laid down on the hospital bed previously occupied by the brother she was there to visit. Rather frail in appearance. He looked no more than forty years of age. He is sitting by the bedside as they both had been out of the building to smoke a cigarette and returned. The reason why she collapsed was extremely low blood sugar levels. A diabetic emergency. The woman was stabilised after a good amount of time passed and admitted to hospital on another floor for overnight observation. An odd pair, her brother was always unwilling to engage in conversation with those around and he presented a general defensive posture. In the meantime, all of this commotion delayed the commencement of my IVIG infusion by several hours. As mentioned to a 3 am finish. Within days I had a lumbar puncture (spinal tap) showing mild elevated protein levels. An orderly pushed me in a wheelchair down to the hospital's first floor where a nerve conduction study was undertaken in a small room. Lit with defused lighting and strong rays of sunlight filtering through partially drawn blinds. The muted sound of city traffic passing outside. Two electrodes were placed on each limb to measure nerve responses. I was clueless of the process and didn't ask questions. Staying silent. Graph printouts were examined. The two medical technicians involved in the study discussed findings between themselves. I gathered that the nerve conduction study showed total and partial blockage on major leg nerves. Symmetrical left and right of the body. I was returned via wheelchair to my ward. During the next few days multiple blood tests and other tests were carried out. One doctor told me a blood sample was sent to far off Western Australia for analysis in a laboratory. Apparently testing for this one particular pathogen could only be undertaken in Perth. Why? I don't know! The result returned negative. Good. All tests showed no evidence of recent viral or bacterial infections. Nothing. I hadn’t been out of the country for years to catch some exotic disease. No illness, not even a dose of the flu or a cold. How can you become so disabled and not know the cause? This is a concerning thought to anyone. Greatly mystifying to me! Disabled and Bleak Outlook All the staff treated me well. I could not walk and was dependent on a wheelchair. A walking frame provided some standing support for very limited room use. I was experiencing a complete loss of self-balance. Numb from backside and legs down. No leg reflexes. Significant paralysis of all four limbs. Acute abdominal tightness caused moderate breathing constriction. I was tested twice daily for breathing capacity in anticipation I needed artificial breathing assistance via a ventilator. I was administered daily stomach injections to prevent blood clots because of immobility. I have always been a non-smoker. I took solace in this. Additional complications I could do without. I could hold light weight items such as a spoon, fork and knife but all were extremely hard to use. I was unable to open served food or drink lids. Could not write or use a mobile (cell) phone, use buttons and zippers, tie laces or hold a small cup of coffee in one hand. One doctor asked me to count how many of his fingers were held up in front of my face. I counted correctly. Previously there were initially a few instances where vision was blurry but then vision quickly came into focus again. I kept this alarming thought of possible deteriorating vision to myself. My eyesight never gave me problems in the past. Always having quite good vision. There was mild shortness of breath due to tightness felt around the torso. What is happening? How bad can things get? With some anxiety I wondered will I lose the ability to breathe freely? Torso tightness later fluctuated between severe and moderate and was felt daily over the initial few years. I was relieved no airway ventilation was ever required. Facial movements were unaffected. No suggestion of Bell’s Palsy. A condition that affects facial nerves. No indication of Multiple Sclerosis, Parkinson's Disease or Motor Neuron Disease. All these conditions I have heard of. No further Deterioration Doctors asked if I could wiggle my toes up and down. To everyone's surprise. I was able to. I was asked if I was able to stand beside my hospital bed. Assisted by staff and total reliance upon a walker with great effort I managed to stand. A doctor requested me to push against his upper body with an open hand and with as much force as I could muster. Are you sure? I asked. Yes, to test upper body strength. Alright then, surrounded by a few doctors I pushed my outstretched hand against him and nearly pinned him to the wall a couple of steps back. There was a somewhat perplexed look returned. A bit of an unexpected result indicating that I still retained some upper body strength. Although I found it impossible to lift my feet more than a few centimetres, or if you like to imagine just an inch, off of the floor due to leg weakness and a lack of balance. My condition did not deteriorate any further after the first few days while in hospital. By week's end doctors assessed my condition as somewhat stable. With mutual agreement my public hospital bed was moved to other wards five times during my lengthy hospitalisation. Even down a floor to another ward. All wards were at near to full capacity. I was stable and under supervision. I was later advised by doctors that the first course of IVIG probably stalled the progression of CIDP. I understood progression meant breathing reliance on a ventilator machine and total immobility before likely incremental improvement. Specialist Consensus and First Symptom? I agreed to be wheeled in my wheelchair to the once every Friday specialist meeting. The rock star treatment! Lol. On an overhead projector my condition and possible diagnosis was discussed in front of twenty or so experts including the department head Professor of Neurology. Doctors posed questions with pen and notebook in hand. I answered what I knew. At the conclusion of this gathering of medical specialists I was returning by wheelchair to the wards via a lift when quite unexpectedly another person in the lift recognised me. Hello how are you? I immediately knew it was the neurologist I saw in Ballarat who admitted me to this very hospital. I said considering everything that's happened recently I was as good as can be expected. I also said see you later up in the hospital ward. He bid me farewell and left the lift. This was the last sight of him until a return appointment from home to the Ballarat medical clinic some months later. Unbeknown to me apparently, he was only available for private patients in the hospital environment. No public patient visitations were to be expected. Was this normal practice in the Australian public hospital system? I didn’t know if that was the case. IVIG infusions are free to Australian residents so long as the criteria is met and signed off by a neurologist once every twelve months for continuing treatment. Specialists later diagnosed CIDP and not GBS as my symptoms were at least eight weeks. The onset of GBS from perfectly healthy to bedridden is usually within days or is almost always under a fortnight. CIDP onset is always much longer being eight weeks at the earliest or much greater in time. A little more than two months before diagnosis I paid for a family paintball day in Melbourne. My legs gave way underneath me on short sprints. No pain. Just momentarily weak legs. I thought this odd and amusing at the time. I attributed this to overworking myself. Even then during the long drive from Melbourne to home l felt a small amount of leg weakness. In hindsight, the first symptom of CIDP that I can recall. Normally I don't jog. St Vincent's Hospital Melbourne had no other patients with GBS or CIDP. Both are rare conditions. Apparently, there is a one in one hundred thousand chance of a diagnosis of CIDP. Long Term Hospitalisation Concerns The isolation of a big city hospital away from familiar faces is very confronting. Initially on arrival I was placed in the intensive care neurology unit with a row of many seriously ill people. Many patients post operative and bedridden. Their shaven heads are covered in long tracks of medical suturing (stitching). A very sobering sight. Medical equipment monitoring everybody. Soon thereafter thankfully I was moved to the ward whereas previously described, the woman collapsing with a Hipo was visiting her brother. On one of my five moves to different wards an adjacent patient had suffered a mild stroke and was up and about unassisted walking, talking and using all four limbs very well within a few days. A likeable person with a glass half full attitude. Acknowledging he was a lucky man. Not so for myself, diagnosed with a crippling condition. Prognosis unknown. During my hospital stay my only regular visitor was a weekly visit from a volunteer inter-church counsellor. These visits were really helpful and appreciated. Otherwise, I had no one to confide in. No visitors. Just a very brief single visit from a family member. After a month passed, another family member paid me a full day visit. I was pushed around the large hospital city block in my wheelchair. Along busy Victoria Parade avoiding able-bodied pedestrians going about their busy daily routines. We stopped for a light lunch. A non-bedside meal was great. It can't be understated how terrific it felt to feel the fresh air and warm sun on your face after one month inside. Even if I was in a wheelchair. I’m wondering if this is permanent now? A drastic turn of life events unfolding right before my eyes. Over the preceding month I gradually came to realise I would likely have lifelong wheelchair dependency. One gets a totally different perception on life from a wheelchair. Is it a permanent part of life now? Who knows! Medical staff were not telling anything. Not wanting to give false hope. One morning reaching for my trusty bedside walker I slipped off of the bed and onto the floor. Unseen by nursing staff. Heavily supported by the bedframe. I managed to pull myself up. Luckily, I was ok. Mentally scolding myself. Don’t let it happen again! The walker was required to shuffle to the ward shower once daily. I am only able to twist shower taps a fraction of a turn. Dribbling the shower water freely over me. Now my arms and hands are too weak to grasp and hold shower utensils. Although it was offered, I didn’t want nursing assistance. What a predicament to be in. Weak as a baby. Autonomic nervous system dysfunction can occur with CIDP. In my case, hints of autonomic system involvement appeared but thankfully no progression occurred. These serious symptoms range from incapacity to breathe, double vision and sight deterioration with optic nerve damage, bowel & bladder dysfunction, total loss of ambulatory function and cardiac irregularities. All due to nerve and muscle interactions within the body. Symptoms as mentioned may or may not occur. Hence, why my five week hospitalisation and medical specialist uncertainty. I googled as much as l could about CIDP with fumbling hands. Countless times the phone fell out of my grasp and more often than not I’m unable to enter search words with one finger. Loss of finger and hand dexterity caused repeated failed attempts. At home sitting by the desktop computer, I could touch type. An impossible task now. Even if I had a full size keyboard. I am barely able to access and view phone photos. For all practical purposes confined to a hospital ward bed. Accompanied by a bedside walker that I was reluctant to use because of extreme difficulty. A ward patient startled the life out of me. In the early hours I opened my eyes to see a fellow in a dressing gown sitting on a chair in the corner of the multi bed ward. He explained it’s too hard to gain sleep. So, he stayed awake all night thinking. Thinking about his health and future. He survived a cardio scare. That’s why he was here. Too concerned to sleep. The two of us are strangers. Both of us up for a chat in the very early morning. It’s a very long day when I wake early and gain sleep late at night. Compounded by the inability to move about freely, or at all and the difficulty to access media by phone. Inpatient Rehabilitation 💦 I spent five weeks in St Vincent's Hospital Melbourne followed by nearly a week of inpatient rehabilitation. In a facility even further from home in the eastern suburbs of Melbourne. I wrongly interpreted my transfer was meant to be to Ballarat and closer to home. I misunderstood the brief conversation in the rushed hospital environment where everybody is a stranger. Train of thought interrupted by major upheaval and disruption to daily life. Understandable considering the circumstances. Once the misunderstanding was sorted. I was transferred to the eastern suburb rehabilitation facility. Once there I discovered the ability to use a walker for short inside walks. I watched through the window from my hospital bed a pair of hot air balloons very low above buildings. Nightly tv news said they made an emergency landing nearby. I thought at least these people had access to the outdoors and were not confined to a hospital. Transferred again. This time I was transferred to Ballarat and to a large regional rehabilitation facility. I was driven there by an ambulance. I sat next to the driver for the two hour trip. It was encouraging that I could actually sit as a passenger and be able to get in and out of the passenger seat unassisted. Fellow Patients There was another patient in the back of the ambulance for the entire drive. A sedated female stroke patient, by appearances not yet at retirement age, nearing end of life. We drove her to the same palliative care facility where my wife spent her last weeks. The palliative building was adjoined to the rehabilitation complex. It was a solemn two hour ride for me. The driver focused on driving and offering little conversation. Not that I felt like chatting. I didn’t mention I had been to the palliative care facility once before. Walker and Red Tape I was admitted to rehab. and to my surprise given my own room. By appearances just like the hospital wards I was all too familiar with. A staff member wrapped my walker handles with red tape. Red tape is replaced with green tape once walking is assessed as safe unsupervised. I was mixed in with recovering stroke and cardiology patients. I spent regular physio sessions among patients clumsily sliding Domino pieces around tabletops. Myself more advanced than those with stroke recovery. I began creatively and carefully building a multi level square house from a pile of Domino pieces. Only for it to suddenly collapse under fumbling fingers. Fellow participants enquiring how I was able to do that? I replied I was here not because of a cardiac episode or a stroke. Of course no one had heard of Chronic Inflammatory Demyelinating Polyneuropathy. Both my hands and feet are equally affected by CIDP induced peripheral neuropathy. Can I eventually learn to walk normally unaided? CIDP uncertainty plays mind games with you. Twice a day in the early morning and mid evening l decided to attempt a circuit walk around the ward corridors and nursing station. Outside of structured daily physiotherapy sessions. Against the red tape supervision rules. I felt competent enough as long as I used a wheeled walker. I am not normally one to go against guidelines. I wanted to be proactive. I decided I would pay heed to the advice if questioned. Pushing my walker my hope was to progress from red to green tape. My aim was to complete ten laps. All exhausting work. Rolling past other inpatient rooms. People such as Mark, who was paraplegic from a diving accident and found it hard to face the day. Bed sheets pulled over his body and head. Thinking I'm not wheelchair dependent anymore as I was nearly two months before and now able to use a walker these last seven days. I self-recalled a road trip to Townsville Queensland. How fortunate Max the pilot and I were from the Tiger Moth joy flight forced landing on the then under construction Mackay Ring Road in 2018 with a broken crankshaft sustaining no injuries. Especially spinal injuries like Mark. Thinking of the inhouse gym physio sessions both Mark and I attended. He is in his wheelchair. Apparently, a potential fate I have now avoided twice within the space of twelve months. I rolled my walker past the longest inpatient resident. Leslie, a double amputee. One amputated foot and one amputated arm past the elbow. He wanted the rehab. facility to become his permanent home. Of course this is not allowed. I rolled past the recreation area with its chairs, television and a bookcase of overflowing books and assorted magazines. I rolled past the unattended nursing station and turned back toward the wards. Medical Prognosis Is Unable To Be Given Towards the end of my rehab two female physiotherapy staff were to take me to an adjoining building with a two storey stairwell. A formidable structure in my mind. Attempting the stairwell was very exhausting. I was supported all the while taking small steps and resting legs. Descending the stairs is more of a problem than struggling up to the top. Could have taken a cut lunch with the time it took. Still, it was something achieved. Physiotherapy staff were faultless guiding and physically supporting me on how to walk. They dealt with my strong safety concerns, poor expectations and inability to get a prognosis. Self-balance was still a major issue. Once every four weeks I received a 40g IVIG infusion of Privigen. The initial loading dosage was calculated by patient weight. All future dosages were unchanged even with weight variability. Taken daily, an Azathioprine (immunosuppressant) tablet. Given to counter progression of CIDP. Green Tape Approval All attending doctors were unable to provide a prognosis. Using my walker in rehabilitation, now authorised with green tape I asked a visiting neurologist if this is true. I garnered information from Google. Inquiring from my rehabilitation ward bed. One third of CIDP patients are wheelchair bound for life. One third recover to near their former self and one third are somewhere in between. CIDP by definition is often characterised by a relapsing – remitting course. The severity and duration is unknown. The neurologist nodded in agreement and replied I wasn't in a wheelchair anymore. I also now thought at least I could walk with a walking frame and green tape. Will this be the new normal? A walking stick wrapped with red or green tape is still far beyond my capability. Unease on Ability for Future Home Self Care In an adjacent ward a recovering stroke patient was due to be discharged in the next few days and suffered a lengthy seizure becoming unconscious. Drugs were administered to him to regain consciousness. Not exactly instilling in me the confidence of the rehab. centre’s assessment on my readiness for my imminent discharge. I was wondering how I will cope by myself at home? No at home Care Plan was planned or established by the medical profession. My thoughts were that future welfare dependency was inevitable. One of the facilities visitors was the minister of my local church. A coincidence chance meeting. With myself pushing a wheeled walking frame together we attended the adjoining palliative care facility to give thanks again to staff from two years ago. But the familiar staff I remembered had moved on. The Minister's comforting presence and support was greatly appreciated. I was visited only once in Ballarat Rehab. Day Pass Out Refused A longtime friend agreed to drive me home and back for a day on an upcoming weekend. This meant a return drive of three hours. However, on presentation to the main entry reception the facility person-in-charge refused me a pass out. I was judged too high a risk to be given a pass out due to the current summer heat wave conditions. With disappointment prevailing. I apologised to my driver for the wasted long drive. I would have liked a short one day break from the hospital environment. Now unable due to doctor's orders. I was approaching two months of unbroken hospital stays and still I cannot return home. Within another week I was discharged. Chronic Inflammatory Demyelinating Polyneuropathy Google searches in hospital and rehabilitation did allow me to flush out CDIP knowledge. Once discharged I began an arduous task gathering a list of questions to discuss with my neurologist on the next forthcoming appointment in Ballarat. This second appointment is still months away. CIDP is a rare neurological disorder and targets your body's nerves all of which interact with the muscles within the body. Symptoms vary widely among individuals. Characterised by progressive weakness and impaired sensory function in both legs, feet, arms and hands. Weakened respiratory muscles are a common symptom. CIDP prevalence is approximately 600 people in any one year in Australia of a population of 27 million. Not hereditary nor infectious. Not a psychiatric or nervous disorder. There is inflammation of nerves and nerve damage primarily to the insulating myelin sheaths around nerve fibres. Classified as an autoimmune disease. The disease may occur at any age. More so in older adults beyond fifty years old. There is no known cause of why the immune system attacks the nerves of otherwise healthy people. A positive diagnosis of CIDP is possible with evidence of damage to peripheral nerve myelin from nerve conduction tests and a lumbar puncture. Quadriplegia and or respiratory failure causing death has been cited in rare instances. Guillain-Barre Syndrome (GBS) is regarded as the acute form of the condition. Rapid onset of symptoms distinguishes GBS from CIDP. Symptoms remain chronic for CIDP. The attack on my health is now identified by name. I now was aware my symptoms meant a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy. Hospital Rehabilitation Discharge 😀 I required home help with housework and to be driven about. I was physically incapable of driving. A home help service was made available usually once per week for the following several months and was provided by local government providers. Prior to approval and following rehabilitation discharge, I needed to seek out and enquire if I met eligibility requirements for this health service. I was told I did meet eligibility. However, there was a monthly fee payable. Also, I qualified for long term podiatry services for a nominal fee. I was thankful for services provided even if it was at a personal cost. In the months after hospital discharge, I used a walking frame with just a walking stick on very brief occasions. My duration of home help care was uncertain. Home Self Care Struggle It was a big struggle to walk. Collect mail from my front yard letterbox. Feed Millie the cat, and 'Tag', a seven year old Fox Terrier dog in the backyard in the initial four months. These four months and many thereafter everything touched was literally like coarse sandpaper. All finger tips upon any contact conveyed a sensation like touching a continuous roll of rough sandpaper. Even to pat the dog and cat. Abnormal nerve activity that never abated. How inexplicable to me. It's quite debilitating to one's wellbeing when you can't enjoy a normal pat on the dog or cat. There was great difficulty twisting household taps and dressing daily. I enrolled in physiotherapy as an outpatient Also hydrotherapy. Unable to write in a legible manner. A little embarrassed about this I signed an X on the paperwork. Staff assured me considering my difficulty in grasping a pen that an x was acceptable. Staff were flexible on my course of physiotherapy and the program was tailored to my needs. My physiotherapy program was extended on multiple occasions. Walking severely restricted by weakened legs, peripheral neuropathy of both hands and feet, (paraesthesia) and CIDP induced severe tightness around the torso. Symmetrical left and right of the torso. Torso tightness may be described as banding, tapering to the spine. Local Hospital IVIG Infusions My local hospital provided monthly IVIG Privigen infusions in their Oncology centre. For people unfamiliar in the setting. A comfortable armchair style infusion chair is provided accompanied with an IV bag and solutions and an infusion pump monitor; this is a portable machine on a stand with its clickety-clack rhythmic beat set to an adjustable programmed flow rate by nursing staff. In due course the old iv pumps were replaced with new silent models. Oncology staff offer patients freshly cut sandwiches and a choice of cold or hot drinks such as juice, tea or coffee. Staff occasionally tempt people with scones and fresh cream. Initially during my first local infusion appointments I was just grateful to hold a hot beverage in two hands and open the lid of a small plastic sandwich pack. I remembered my repeated failed frustrating attempts just a few months previously. One infusion day coincided with my approaching birthday. No need to change dates. I viewed it as just another day. No cake or candles for me. All infusions are carried out in the same wards, with the same familiar nursing staff and the same infusion method my wife received for cancer chemo treatment. The same familiar medical equipment. Two years on. Here I am. Surrounded by everything I wanted to forget. In my mind cancer kills and CIDP cripples. Me, a distressed witness of prior circumstance. I was back in the same environment and building. I reminded myself it's all for the best and left it at that. Accepting the hard physical and mental health challenges that I knew lay ahead. Poor Ambulatory Function I was struggling with poor ambulatory function longer than seven months post diagnosis. For example, the assistance of three people was required to descend a vehicle dealership's long flight of stairs. Assistance was required from the front, back, side and guidance of the guard rail with frequent stops. As I lived alone and struggled daily with CIDP I considered applying for Meals On Wheels. I gathered I did not fit the age criteria for the service. On occasion a family friend, who was a prominent member of a local church, delivered a cooked meal. I greatly appreciated it. More than nine months passed and I was in-effect housebound and isolated. In the latter half of 2019 my mobility had improved and I was not entirely housebound anymore. Medical approval was given to drive a private motor vehicle subject to future review. On the eve of the Covid-19 lockdowns of a five km radius from home. Bitter sweet timing as I have always been a driving enthusiast. Thankfully, driving a private vehicle was not permanently revoked such as all commercial and volunteer driving was. Covid-19 With Virtual Reality & Build A Website Initially during the first twelve months there were abnormal unpleasant foot sensations of crawling ants. Also on legs and sometimes arms to doubt one's sanity. I did not develop hand tremors, leg cramps or have noticeable foot drop. I confronted significant immobility struggles and home isolation in the twelve months preceding the COVID-19 pandemic. As I was immunocompromised COVID-19 vaccines were required. Four injections were completed. I was aware that in the most dire of Covid-19 hospital patients, a hyperactivated immune system triggers a cytokine storm in the lungs, a life-threatening condition. Twelve months of weekly outpatient physiotherapy sessions were COVID-19 interrupted and eventually stopped all together. I needed to think outside the box to address isolation, boredom and limited mobility during COVID-19 and frequent Victoria state wide lockdowns. I purchased Virtual Reality hardware and software for the home desktop pc. I watched 3d movies in a VR cinema. VR offered a very real feeling of freedom, experiences and escape from over twelve months of CIDP immobility. I navigated isolation issues of COVID-19 without infection. I told myself to keep busy for my mental health. Psychically and physically busy when possible. I continued developing my own road trips website. Self-taught through trial and error. A project essential to keep myself occupied in a quiet house. This was the only constructive activity on multiple days. Especially in the initial twelve months. Mental Health I was made aware of a free twelve month government counselling program made available for people to boost their mental health during Covid-19. Although I was fine. I thought this may be a good program for me to view as insurance. In the event I suffered a total CIDP relapse. So I signed up. The female counsellor was supportive and for one hour once every three weeks a local consulting clinic was attended. Home appointments were also approved. I used the service as an outlet to express CIDP concerns and to maintain a positive attitude. Although beneficial, I viewed it as irrelevant unless I had a total CIDP relapse back to square one. I viewed the program as my insurance backup. A positive strategy if the worst occurred again. Unfortunately, CIDP is always full of uncertainty for everybody. No prognosis can be assumed. Needless to say, maintaining a positive mindframe is very important. Difficult to achieve by yourself without some outside support. For those with faith or a willingness to accept. Religious and secular communities are there for reassurance, and practical help. To me this service was invaluable for the weeks and months I spent in hospital as previously mentioned. Don’t ignore support when an opportunity arises. CIDP Five Year Summary The National Library of Medicine (USA) has available scientific literature online of a small study detailing the long term prognosis of chronic inflammatory demyelinating polyneuropathy. A five year follow up of thirty-eight cases with no comorbidities. Source is from, Journal of Neurology, Neurosurgery & Psychiatry. An informative paper the layperson can largely understand. Following is a five year summary after my CIDP diagnosis and subsequent IVIG infusions. The ongoing purpose of infusions is to maintain patient ambulation while encouraging a healthy autoimmune response to the peripheral nervous system. Since late of 2021 no mobility aids or home assists were required. I have no comorbidities with CIDP. Chronic peripheral neuropathy is commonly associated with diabetes. I am not diabetic nor pre-diabetic. Nerve Pain 😨 No muscle atrophy developed. This is an encouraging sign. Although persistent daily neuropathic pain was experienced for three years in the torso and feet. No nerve pain medications were offered. Tempting to ask for but I didn’t want prescription addiction. This was not out of a sense of a noble thing to do. I know high dosage long-term pain prescriptions are decremental to health. With the benefit of hindsight some nerve pain medication should have been requested and taken. Nursing staff occasionally ask patients the level of pain felt on a scale of one to ten. Ten being unbearable and one no pain. I felt about six\seven or higher with my nerve damage. Is this an over exaggeration? Well, there were times lasting up to an hour or so that lying flat on the loungeroom couch at home and staying perfectly immobile was my only option. My own ad hoc positive strategy without prescription meds. Albeit with hindsight, not recommended. At times it seemed like the only option to keep daily flaring nerve pain at bay. Some may seek comfort in alcohol as a pain release. I viewed alcohol as a poison to the nerves. Creating more problems if abused. A few glasses is enough at most. Meds should have been requested. Prescription opioids, no thanks. I always tried to focus on pain misdirection instead. Do light activities for the mind and body to push invasive nerve pain aside. It’s surprising how effective this method can be when put to the test. Another major factor in the decision not to take nerve pain medications was the on-going ability to maintain uninterrupted nightly sleep. This was a great unexpected bonus. How was it possible? After random daily flaring of nerve pain. I don't have the answers. Nerve pain abated somewhat after three to four years. Yes, this is a lengthy time. At least it happened. Perhaps down to a two or three on the pain threshold? No separate health issues. Twelve Months Post Diagnosis & Twelve Apostles In the summer months. Having gained driving approval I wanted to drive to the Gibson Steps. These are within sight of the world famous Twelve Apostles. The Twelve Apostles are one of the most visited sites in Australia. The most significant and sought after attraction along Victoria’s Great Ocean Road. There is a wide and relatively short flat walkway from the Twelve Apostles Visitor Centre to the viewing area. However, I wanted a greater challenge to test my leg strength after twelve months of gradual improvement. Perhaps driving to the coast is too much of a test. I was about to find out for myself. I drove solo to the Gibson Steps. A journey of under three hours. Ensuring I stopped for multiple roadside rest breaks. Gibson Steps The plan. Descend down the Gibson Steps cliffside walkway and return back to the top. These steps, meticulously carved into the rugged cliffside, provide visitors with a unique opportunity to descend to the pristine beach below, offering a close encounter with the raw beauty of the coastline. I am a little apprehensive not really knowing if I would require assistance on return to the top. I had been to these steps before I developed symptoms of CIDP. About eighteen months prior. When I was one hundred percent able-bodied. Leaving the cliffside carpark I walked to the top of the steps where a visitor's bench provided seating with expansive views over the beach below and out to sea. I took a moment to breathe in the salty air, feel the cool ocean breeze on skin and began my slow descent guided by the accompanying guide rail for support. As you navigate your way down the Gibson Steps from the clifftop carpark, numbering near the hundred, the sheer magnitude of the towering cliffs to one’s side and the vast expanse of the Southern Ocean stretching out before you create a truly awe-inspiring experience. My legs noticeably weakened every two dozen steps or so. Stoppage for a break. Then continuing downwards. The final oversize cut stone step onto the sandy beach offering the most trouble. Hesitating to go left or right. Stepping onto the hot sand with a sense of achievement. Resting at least thirty minutes. No help was required. I was contemplating the return. A few tourists wandered about the sandy beach. The rhythmic sound of turbulent waves breaking on the reef strewn foreshore some fifty metres away. Now I was confident I didn’t need assistance to return. On the return with multiple stoppages for resting legs, the climb back to the top although extremely exhausting was manageable. A huge personal achievement. Proving a ' have a go’ mindset is helpful in boosting mobility confidence. Three To Four Years Living With CIDP During the initial three years. The need to rest extremely fatigued legs and arms whilst attending appointments, in supermarket queues and public places. Three years of short daily showering and brief house tasks for the same reasons. This brought a forced change in personal presentation. Velcro strap running shoes with no laces. A sock puller for dressing. Trousers and shorts without zippers and buttons. Buttonless shirts. No zippered pullovers nor jackets. I was effectively forced into early labour force retirement. Three plus years to get to near normality. I've always enjoyed driving. Great to not feel significant under the ribcage wincing from torso tightness, (abdominal nerves inflammation?) over every minor highway jolt and bump. It's been more than three years and now I'm also able to walk up to 45 minutes. Initially 15 minutes then to 45. Will this be maintained! Or will I relapse? If not irreparably damaged. Self-nerve repair is possible. During 2022 I wanted to see for myself if my driving ability was up to standard and satisfactory at this time. I completed a thirty-minute driver experience on the Bend Motorsport Park racetrack in my road registered vehicle. A Mustang GT with a six-speed manual transmission. Tough on fatigued legs but safe. Fortunately, all went well and it was a great boost to driving confidence. The full thirty minutes was completed. People say you look well and move reasonably. Yeah well, looks are deceiving with CIDP. One busy long weekend after alighting from my performance car I received loud verbal abuse from an outside dining café patron for parking in a disabled parking bay. The displayed permit unseen. I replied, ‘I have CIDP. Look it up on Google. It 'll scare the hell out of you’. A war between nerves and invisible antibodies throughout most of your body remains unseen to all. Neurologist Appointments and Tests 👍 Undertaken not more than once every twelve months by a neurologist a nerve conduction study revealed improvements in lower limb nerve conduction and functionality. Small improvements greater than fifty months from diagnosis were still achievable. These improvements were not really felt in a practical sense. Indicating further improvements are possible after fifty months. If there is no active nerve demyelination. By way of an explanation. A nerve conduction study involves the combination of two electrodes placed on the skin of an arm or leg above a length of a nerve and electrical conduction is measured between the electrodes. Multiple nerves may be tested. The person quite often experiences a small amount of discomfort when the brief electrical shocks are applied. The shocks are low voltage and so are harmless to anyone. Support Group I considered joining an Inflammatory Neuropathy Support Group. A google search revealed one such group in the eastern suburbs of Melbourne. The nearest group to my home. It’s been over four years and I haven’t met anybody diagnosed with GBS or CIDP. Maybe it's about time I did. Legally I was cleared to drive. A drive to the far side of Melbourne and potentially heavy traffic in a city of five million left me with a feeling of trepidation. Travelling by train wasn’t practical. Upon enquiry, all meetings scheduled every few months always fell on an early Sunday afternoon. Solo and with no backup driver I decided to attend a two hour meeting. For me the drive was over Westgate Bridge and through the road tunnels on freeways to the eastern suburbs. Meetings are held in a room of a suburban library. Upon arrival all are greeted by the group organisers. Tables, chairs, light snacks and drinks are provided. Meetings are attended by perhaps fifteen to twenty-five people. I was by far the longest traveller in the group. A diverse gathering. Young adults to advanced age and all levels of physical disability. A few wheelchair equipped. All in attendance were introduced and name tags adhered on clothing. Every meeting has an invited guest speaker relevant to the field of rare neuropathy conditions. Fields such as nursing, rehabilitation and neurology specialists. Especially relating to GBS and CIDP. I was taken aback by meeting new people and not having to explain CIDP. Many share their individual stories. One man a little younger than me was on double crutches. He had a CIDP diagnosis and said he was amazed I drove so far to attend. I explained my recovery to the present time and his face lit up in hope. Realising he may be able to get back to driving. The benefits of attending such a support group should not be underestimated. People gain insight and encouragement. In a friendly environment. Living With CIDP On approaching five years of CIDP. These residual symptoms include: moderate symmetrical and ceaseless tingling felt underneath both feet. Mild tingling in the hands. Mild torso tightness and mild symmetrical weakness in legs. Normal touch sensitivity in hands and feet has long returned. Taking a daily tablet of Azathioprine has ceased. Obviously, no progression or relapse. Discontinuation of IVIG is unlikely? In my opinion, it is a medical specialist decision! Know one’s limitations. This is particularly good advice on physical disabilities such as CIDP. Be realistic. On the other hand, don't dismiss what life offers. If not permanently bedridden be grateful. The saying, 'There's always someone worse off than you’ is still relevant. Acknowledging this. The obvious answer is to endeavour to focus the mind forward not backward. Although it’s easier said than done. One Hand Coffee CIDP is not predisposed by any prior physical, mental health or lifestyle attributes. It is not hereditary or contagious. It's a rare condition. General Practitioners rarely see it, if at all. All of the above gives an insight into CIDP. At least as applicable to one individual's experience. Hopefully all the aforementioned addresses a lack of awareness and knowledge of Chronic Inflammatory Demyelinating Polyneuropathy. My IVIG Privigen infusion of 40g is administered once every eight weeks. It was initially every four for several years, then extended to six weeks then out to eight weeks. Treatments such as IVIG infusion, plasma exchange and corticosteroids are available to neurologists for consideration. In my opinion it is best to seek, evaluate and trust answers from specialists. During March 2026 a nerve conduction study showed marked improvement of motor nerves responsible for controlling muscle strength. These nerves in turn play a pivotal role in mobility. This latest study was completed by my neurologist of seven years. He candidly expressed his opinion of his thoughts. A frank candid admission referring to my initial hospitalisation in Melbourne of seven years previously. Admitting that back then he thought future daily wheelchair dependency was my likely CIDP pathway. I thought this myself at the time. Now in 2026 he is recommending a six month trial suspension of IVIG infusions. Infusions will not resume if all goes well. Although, he noted, tingling sensory nerves are unlikely to improve. Another nerve conduction study to be conducted in six months. Not the usual twelve month interval. Then perhaps all is finished. Seven years of regular infusions in an oncology centre is a long time. I estimate more than seventy IVIG infusions. Now I will be freed of the medical environment. Freedom from infusion schedules. My final IVIG infusion scheduling falls on the day before Good Friday. Infusions usually are of a three hour duration. More good news. In the days preceding Easter, medical notification was received there is to be no final infusion. Easter is a worldwide celebration in Christianity. I can celebrate the end of seven years of Oncology attendance. All things considered; full quality of life has returned. Time to reflect on my CIDP experience. From diagnosis to now. Once again, it’s great to feel the freedom of walking unassisted inside my own home. Walking freely in the front and backyard. Operate my lawnmower without multiple rest breaks. Enjoy long drives in the diverse Australian countryside. In Victoria, enjoy driving the Great Ocean Road. Be able to enjoy everyday pleasures we take for granted. Pleasures such as a daily morning coffee. A one hand coffee. I often smile while holding a hot coffee. Why? While the hot coffee may taste great. It’s even better to be able to hold the full mug in one hand. A CIDP diagnosis and pathway is full of uncertainty for all. Don't dwell on anything that may never happen or recur. I find it best to be honest and patient with yourself. Don't say why me! CIDP is a treatable condition. Amor Fātī Despite receiving a rare diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy I consider myself very fortunate. Fortunate for meaningful nerve repair to occur eventually and be confirmed by medical specialists. Gradual nerve self-repair is not a prognosis any doctor would give for CIDP. This is not expected with a condition all neurologists define as chronic. Characterised by a relapsing and remitting ambulatory function. I don't seek sympathy. In my experience empathy for rare hidden conditions is improbable outside of immediate family. I am aware neurological medical research is crucial to find new targeted treatments and cures. Awareness in the wider community of GBS and CIDP would be a boost to foster more research. We are living in an age where numerous illnesses are promoted through all types of media for awareness. All for good reason. The rarity of CIDP and GBS presents a challenge to be heard. All people, including you and l, don't get a choice to avoid potential future autoimmune or neurological disorders. These disorders cannot be prevented by lifestyle choices. It is our choice how we choose to respond and live our lives. If nothing else, my CIDP journey offers food for thought. There is a Latin phrase. Amor Fātī. Accept one's fate, find the elusive positives and move on. Amor Fati Wayne PREV CIDP NEXT HOMEPAGE

Birdsville, Queensland Birdsville has been called Australia's most isolated outback town. There are paved streets, housing, and infrastructure unlike some remote small towns. There are twelve named streets in Birdsville. The Birdsville Hotel is on the corner of Burt and Adelaide Streets. Opposite the hotel is Birdsville Airport. There is a manned police station, and a small primary school. There is a non-grassed sports oval and tennis courts, a hardware store on Billabong Boulevard, and a couple of cafes. Birdsville Tourist Park caters to campers, and the Birdsville Bakery off Jardine Street sells the famous curried camel pies. There are a few ruined buildings and restored buildings such as the old hospital. CAMEL PIE I was going to buy a curried camel pie for a late lunch; however, the bakery had sold out. Never mind, the next morning was to be breakfast at the bakery. So, of course, I ate a camel pie loaded with tomato sauce on top for breakfast. Others did not think it was a good idea to eat camel pie for breakfast. I enjoyed it and suffered no problems later. The pie was chunky, similar to a steak pie. Good taste. A little stringy. Still very good to eat. Standing in front of the Royal Hotel ruins, a ride-on lawn mower rounded the corner from Frew Street to Adelaide Street. The rider was intent on mowing one side of the grassed nature strip. I imagine it's a rare sight in Birdsville - mowing green grass. PELICAN POINT The Diamantina River flows on the edge of Birdsville township. A new bridge was built to replace the old Diamantina Crossing. Pelican Point is about one km from the bridge. Our Toyota Landcruiser was driving at walking pace on a track towards a large wetland area bordering the Diamantina River. None of us expecting to see any pelicans. Edging closer to an expanse of water dozens of pelicans could be seen sitting on the water sheltered by a divide in the river. On closer approach the pelicans were spooked by vehicle noise. All flew further upriver. Horse holding pens for the Birdsville Races were standing empty and scattered along the river's bank. Surrounded by green undergrowth waist high from recent rain. Traveldriven GOOGLE MAPS BIRDSVILLE CURRENT SEVEN DAY FORECAST FOR BIRDSVILLE BIRDSVILLE TOWNSHIP NIGHT LIFE IN BIRDSVILLE? WATER TOWER SUNRISE ON GRAHAM STREET BIRDSVILLE BAKERY ON JARDINE STREET FAMOUS CURRIED CAMEL PIE FOR BREAKFAST TOPPED WITH TOMATO SAUCE THOSE CURRIED CAMEL PIES AWAIT THE ROYAL HOTEL RUINS ROYAL HOTEL RUINS BUY FUEL AT THE SERVICE STATION & PLAY PIANO MESSAGE REWRITTEN BY TRAVELDRIVEN SEVERAL TIMES ANNOYED BY SWARMING FLIES BURKE & WILLS MOMUMENT, BIRDSVILLE AIRPORT BIRDSVILLE BIRDLIFE PREV PAGE NEXT

"It's a special place, my high perch, where I sit cross legged facing the setting sun. To the north and south of me, domes of windswept sand protrude like pimples over a ridge line, each one fired like a glowing poker, while below me, the shadow cast by the westerly dune inches its way across the inter-dunal flat, intent on destruction. Darkness Falls on Big Red. Bartell, Denis (1978) The Frozen Sea On the edge of the Simpson Desert is a section of the long parallel sand dune Nappanerica commonly referred to as Big Red. This sand dune is accessible to 4wd vehicles to climb and perhaps for 2wd to reach the base of the dune driving from Birdsville 35 km away to the west. Big Red Big Red is the first and highest of well over one thousand parallel dunes in the Simpson Desert, which run north-south for hundreds of kilometres. Big Red's summit is approximately 36.5m (120 ft) above sea level. Roughly 30 to 33m (98 -108 ft) above the surrounding plain. The world's remotest music festival the once a year Big Red Bash attracts thousands of music lovers and is held on the Birdsville side of Big Red on the flat and dry clay pan with Big Red as a backdrop. The annual last weekend in June event of 2024 was apparently a wet occasion. Weekend rain arrived. Turning the clay pan dust to a vast pan of mud, sticking to all and sundry for miles around. Authorities even closed the Birdsville Track for a few days. Driving Big Red is always prohibited for the duration of the festival. We in our Landcruiser were here with no restrictions as it was a normal time of year with no events in the Birdsville area and the weather fine and dry. Driving Big Red to the Top The road out to Big Red goes over Little Red into the Simpson Desert. For a greater challenge Little Red is the first sand dune to cross over and reach Big Red from the steeper side of Nappanerica. From the Birdsville side we made a right-hand turn with Little Red out in front. There is no need to traverse Little Red before tackling and driving Big Red. The easiest access point to Big Red is before Little Red on the Birdsville side and to drive further along the base of Nappanerica along a very short flat track to the right. We three were in a V8 Toyota Landcruiser. A red flag on a pole was attached to the front of the Landcruiser before the climb. Regulations require a minimum height of 3.5 metres from the ground. The red flag for vehicle safety, to alert other drivers a vehicle is cresting sand dunes from the other direction. On our first attempt Howard the driver kept the vehicle in Hi range. Tyres were left at normal road pressures. With a run up head start, we reached the top in little more than a minute. Quite easily done. On the other side of Big Red as mentioned was a steeper short access track up to the top. We were the only vehicle and people there at this time of day. About midday. Outside of the vehicle flies were bothersome by the dozen. After a rest and a look around, we descended Big Red and drove past another 4wd parked with the driver deflating his tyres for the run up on the loose sandy track. On Top of Big Red Walking to the top dune crests of Big Red is a challenging experience, as the red sand resembles quicksand, making each step a struggle. The fine powdery sand seems determined to engulf anyone attempting to climb the peaks of the surrounding crests, with each footstep sand engulfing past the ankle and sand cascading past the wrists, when looking to gain traction to top the crests. Despite the daunting terrain, with perseverance and a crab-like movement, it is possible to reach the highest crest of the dunes. Fighting swarming flies away from your face. The shifting sand constantly threatens to pull you down. The panoramic view from the top, however, makes the effort worthwhile, offering a breathtaking vista of the vast red desert, low hardy bushes and small green spindly clumps of grass stretching out in all directions, a reminder of the raw beauty and harshness of nature. Traveldriven BIG RED AND THE SIMPSON DESERT AUDIO RECORDING HOWARD OF DESERT SKY TOURS DRIVING BIG RED ON TOP OF BIG RED BIG RED DUNE WALKING BIG RED THE STEEPER SIDE OF BIG RED HOWARD, ON BIG RED BIG RED IS SCAREY NAPPANERICA SAND DUNE, BIG RED PREV PAGE NEXT

Flight Into the Simpson Desert The Simpson Desert is Australia's fourth-largest desert and perhaps the most notorious. The Simpson is known for its parallel sand dunes, stretching for hundreds of kilometres. The desert is largely red sandy plains between the dunes and uninhabited, bordering the states of South Australia, Queensland, and the Northern Territory in Central Australia. Area: 176,500 km2 (68,100 sq mi) Waddi Trees Waddi Trees (Acacia peuce) grow in just a few places in Australia. They are a rare and ancient species, with spiky, needle-like leaves and thick bark. The trees grow only on dry, barren ground on the fringe of the Simpson Desert in Queensland and the Northern Territory. Waddi trees grow to about 9 metres and may live for as long as 1,000 years. They have yellow wood with a bright red core. The wood of the tree is of extreme hardness. Driving the Simpson A vehicle crossing of the parallel dunes will take four days at a minimum. West to east is usually the easier direction. Vehicles consume huge amounts of fuel to drive over the dunes, and becoming bogged in the loose sand is frequent. The Simpson Desert National Park is closed annually over the summer months, any vehicle breakdown and subsequent stranding while attempting a summer crossing will likely lead to life threatening situations from the constant extreme heat. Temperatures exceed fifty degrees daily. The Madigan Line The best route to follow is the Madigan Line. The route is not a track; it's more a series of GPS waypoints and involves traversing more than 1,300 sand dunes. The French Line The French Line is a track of some sort and is the shortest route across the Simpson Desert and may be the most demanding to traverse. There are no trees for shade. The French Line from Dalhousie Springs to Birdsville is a distance of 440 km, requiring a minimum of three days to complete. The average speed on the French Line for a 4WD vehicle is 32 km/hr. Often down to 15 km/hr. In the event of any vehicle breakdown, rescue may not be timely or practical in life threatening situations. Flying Into the Simpson Desert Early morning or pre-sunset scenic flights may be booked from the Birdsville Hotel. Upon arrival for the pre-flight briefing, we were informed our sunset flight would include four people, including two pilots. We were asked if we had flown in a light aircraft before. I explained that my last flight was in a Tiger Moth a few years ago in Mackay, Queensland. On that occasion, we didn't make it back to the airport and were forced to land on the ring road due to engine failure. The pilots reassured me Tiger Moths are sturdy planes, just like the one we were flying in today. I was hoping we wouldn't have to make a forced landing and be stranded and lost in the Simpson Desert overnight. Those things don't happen twice, right? Anyway, it was time to go. The two pilots and the two of us passengers strapped ourselves in and took off. The thirty minute flight was very interesting and incident-free. Feral camels, along with goannas, foxes, and dingoes, are frequently found in the deserts of Australia. The closest small towns to the edge of the Simpson Desert are Birdsville in Queensland and Oodnadatta in South Australia. Traveldriven WHAT CAN HAPPEN IN THE DESERT AUDIO RECORDING HOWARD OF DESERT SKY TOURS BIRDSVILLE AIRPORT OPPOSITE HOTEL BIRDSVILLE AVIATION SIGHT SEEING AIRCRAFT FLIGHT INTO THE SIMPSON DESERT STUCK IN THE DESERT SIMPSON DESERT RECOVERY VEHICLE ROYAL FLYING DOCTOR SERVICE, BIRDSVILLE SIMPSON DESERT WADDLE TREE OUTSIDE OF BIRDSVILLE PREV PAGE NEXT

Tom Kruse MBE Birdsville Mailman The legendary Tom Kruse took over the mail contract paying 396 pounds per year to operate the Birdsville - Marree Mail Run from January 1948 to 1963. Tom held the mail run for 15 years, delivering goods and mail to Birdsville and outposts along the track through floods, drought, and drifting sand dunes. Driving a Leyland Badger built in the UK in 1936, his exploits resulted in the documentary: Last Mail from Birdsville - The Story of Tom Kruse. (2000) 54 minutes Driving Down the Birdsville Track The track had reopened a few days before allowing our Toyota Landcruiser to drive down the Birdsville Track. It had been closed due to recent heavy rain. The Track is a distance of 517 km of dirt road. A few patches were encountered over the track of drifting sand perhaps fifty metres or so pulling the Landcruiser to one side a little. A few water crossings here and there. More like large shallow puddles almost the width of the track and all with a firm base. The Mungeranie to Marree section of road was in much better shape being a well-formed double road. Perhaps in the future this will be sealed? The section is 205 km in length. A two-wheel drive car could easily drive this length of road. Whilst the track was closed, a 4WD vehicle had driven up the track from Marree, making it all the way to Birdsville. The track was still very much water-affected from recent heavy rainfall. Because of this foolhardy individual, his vehicle had left deep wheel ruts the length of the two-way track. Most had now dried out, leaving behind very rough wheel ruts to navigate. Much of the driving needed to be done on the wrong side of the road to avoid the churned-up ruts in the road. Luckily, there are very few travellers along the track. Traveldriven Lyrics of the Song Rain On The Track Rain On The Track You won't get up to Birdsville mate. The inside tracks a lake; The Diamantina's running strong For that's the way droughts break. And if you drive from Clifton Hills Across the swollen creeks And take the outside, why mate, You'll be out for weeks. Refrain For there's rain on the track and there may be more. The grass will come as it did before, And even the cattle are water logged, There's rain on the track and the mailman's bogged. There's a glint on the plain where the creek-beds lie The dingoes whine 'cos they can't keep dry, So move on mate, for beyond that hill- Birdsville!! The country there is wide and lean, The gibbers look like blood; And when it's dry the sand is mean, And when it's wet there's mud. You won't get up to Birdsville mate, Or else you'll need some luck; You're down, and to the axle too- Well mate, I'd say your stuck. There's bitumen in Birdsville, mate A great artesian bore. It's in the beef and sugar State- You've not been there before? The brolgas dance at sunset mate, And street lamps light the town. It makes a kind of music When the Diamantina's down. And so you've got to Birdsville now Although you're two weeks late, You've left a tyre and pints of sweat, You're dug up half the State. Your car's a muddy juggernaut, Such roads you've never met. You'd better rest in Birdsville, mate, You have to drive back yet! .... by Max Fatchen DRIVE BIRDSVILLE TO MARREE BIRDSVILLE TRACK SIGNAGE RAIN ON THE TRACK SONG & VIDEO WILD DINGO ON THE BIRDSVILLE TRACK BIRDSVILLE TRACK TOM KRUSE FAMOUS BIRDSVILLE MAILMAN TOM KRUSE PLAQUE, IN BIRDSVILLE PREV PAGE NEXT

Not far from Marree, beside the Birdsville Track, are sandstone ruins of yesteryear. A well-formed fireplace still remains intact. Remains of a chimney sits above. If firewood could be gathered in the sparse landscape, a strong, warm fire could soon be made. Stone windowless frameworks can be examined, and the wind whistles through the few stunted trees, surrounded by desolate countryside. Clayton Wetlands Campsite, Birdsville Track A roadside stop along the Birdsville Track. Offers; hot showers toilets hot artesian bath a place to camp overnight Located amidst the rugged beauty of the Australian outback, the Clayton Wetlands Campsite offers a unique opportunity to immerse oneself in the tranquility of nature. Nestled in the heart of the wilderness, this campsite provides a peaceful retreat for weary travellers along the dusty Birdsville Track. Visitors can indulge in the simple pleasures of life at the campsite, enjoying the convenience of hot showers and clean toilets after a long day of exploration. For those seeking relaxation, the campsite boasts a rejuvenating hot artesian bath, perfect for unwinding under the vast outback sky. As the sun sets over the horizon, travellers can set up their vans and settle in for a night under the stars. The Clayton Wetlands Campsite is not just a desolate stopover; it is an experience to be cherished, a moment of respite in the midst of the rugged Australian landscape. Traveldriven WARNING REMOTE AREAS AHEAD SIGNAGE CLAYTON WETLANDS ROADSIDE SIGNAGE CLAYTON WETLANDS CAMPSITE BIRDSVILLE TRACK WAYSIDE STOP RUINS OFF OF THE BIRDSVILLE TRACK RUINS NORTH OF MARREE NORTHERN FLINDERS RANGES SIGN OUT ON THE WIDE OPEN PLAIN STANDING ABOUT LARGE FIREPLACE PREV PAGE NEXT