Thursday…back to LA, the egg diagnosis and a very long conversation with my mechanical cousin (who finally conceded there may be something to my note on the door approach after all). Before I’d completed my description of our first hairpin bend I could tell that Copperstate has all the elements needed to make it an annual family affair in future!!
Throughout this event, I met and enjoyed conversations with so many fantastic people, who came from virtually every state across the country. Arizona obviously claimed a high percentage, but places as far as Vermont, Nebraska, Alberta and Florida were all represented; and their cars also equally diverse. Extensive racing histories interspersed with engineering or design pedigrees, the need for speed being chased by armchair comfort and a solid 45 mph.
However, despite the variety, I have to point out that this type of event is a great leveler as all entrants share one common theme – proud custodian of a vintage car (or two, maybe more) that deserves only to be enjoyed and DRIVEN! We all understand that we’re just caretakers, and our shared appreciation ensures that no matter the differences (cultural, geographical or economic), there’s a wonderful camaraderie that cannot be manufactured. Whether being able to drive up the hill without the navigator pushing or just slipping into the jet stream of someone else’s acceleration, every evening consists of shared moments from that day.
And the Copperstate organizers not only share our enthusiasm, they encourage it – in the best way possible – by providing four gloriously crazy days that ensure each entrant leaves wanting more!
I headed over to TRE yesterday for an Egg update and to announce my next round of good news/bad news…
Although the final prognosis was still under discussion, the boys were confident that the Egg was marginally cracked, rather than fully scrambled. Clearly there’s an issue with the fuel, but as she was only intermittently misfiring and losing power, they wanted to keep her under observation for a few more days. So, we turned to my other issue:
Good news…I had a bloody brilliant time!!
Bad News….I’ve realised my driving needs improving
Good News….next stop Autocross (Jeremy is an instructor)
More good News…which can only lead to performance driving lessons (please see Dave c/o Porsche Owners Club)
So, clearly I’m going to be busy between now and April 2013~~!!
Wednesday morning, start of our final day. A more leisurely route, of just over 150 miles from Tucson back to Phoenix. Unfortunately the cracked egg scenario meant that before we could head off in any direction, final tow-truck arrangements needed to be confirmed. This discussion was being had in various other areas of the car park, as unfortunately even the best mechanical planning hadn’t been able to mitigate complete disaster across the merry band of entrants. Commiserations abounded, but in a very light-hearted way. After all, there isn’t much about the statement, “my car broke down on a vintage car rally” that really elicits more than a wide grin and details about exactly how fantastic the moments leading up to said break-down actually were.
My invisible award for “best prepared in the face of adversity” went to the unassuming gentleman whose big Healey faced early retirement. Although the Copperstate planned effectively, and were able to provide a number of loaner Lexus (or is more than one Lexus considered Lexi?) this particular driver decided to grab a more reliable option from home. Subsequently he completed the rest of the event in a fabulous burnt orange McLaren F1 Supercar….truly the modern epitome of sex on wheels!
By the time the Egg’s transport had been finalised, we were faced with two options…..follow the actual route, or just jump on the most direct option between Tucson and our next stop, the Bob Bondurant School of High Performance Driving. As a finale to the last three days of winding roads and sweeping curves, the organizers had come up with a very different experience….three hours of playing fast cars, at even faster speeds, under the watchful eye of Bob’s instructors. Go-carting, auto-cross & lead and follow on the track were all on the agenda. So, would you think me shallow if I admit that we just wanted to get there as quickly as possible??
It was odd, finding ourselves back in air-conditioned luxury again. I drive the Egg regularly in Los Angeles, but inevitably it’s a rather pedantic affair – simply because of the limited options and freeway environment. We’d been given the chance to push our driving and navigational abilities on this event in a variety of different ways, which had made the driving experience a more sentient one….….remembering to read the road, rather than just staring at the car in front and hoping they wouldn’t opt for text over turn signal. Back in the Lexus, it was hard not to slip into an automotive coma simply because modern cars are mostly designed to have the driver disengage from their surroundings. Despite that, as the temperature continued to climb towards triple digits, I was secretly relieved to be able to crank that AC just a little more!
Bob Bondurant is the epitome of US racing history. His career started on two wheels racing Indian motorcycles and then moved across to race cars. He took part in both Formula One and Le Mans, winning for Carroll Shelby & Ferarri. Then to CanAm & the grueling off-road endurance of Baja 500.
From racing he switched to consulting….but not the fluffy suit & tie kind we have today. Racing consultant on Frankenheimer’s epic, “Grand Prix”; which required him to teach James Garner how to drive an F1 car for the race scenes.
His racing career ended at 150mph, when a car crash and subsequent flip resulted in terrible injuries to his leg, arm and back. Although the medical prognosis was dire, against all the doctors’ expectations he recovered fully and was able to walk. Turning away from the race world, he decided instead to expand aspects of his work on “Grand Prix”, and opened the school in 1968. Originally located in Orange County, it has called Phoenix home since the end of the 80’s.
And so we headed to the go-kart. Let me re-phrase that; we headed to “50 mph, tyre skidding, helmets on, get out of my way” karting. No sooner was I on the track than I found my inner Senna coming out. Looking ahead constantly, I was determined to keep the cart as far and as fast on the racing line; irrespective of the obstacle. To be honest, I have no idea who or if anyone actually won each group…but it was just the right amount of adrenalin to make up for no triple espresso that morning!!!
As I’d promised to meet the tow truck at our hotel to ensure that the Egg arrived safely, we didn’t stay for the rest of the options….but the feedback was a combination of smiling expletives, and a level of fear associated with the track speeds required in the lead and follow for me to confirm that if you’re ever given the chance to try all or any; just do it!!
Once back at the hotel, I checked the Egg’s whereabouts and then called TRE with the good news bad news. Good news, I had an incredible time. Bad news, slight egg-splosion en route. But nothing that can’t be resolved and it just means she’ll be even better for the next adventure!!
The plan every morning has been to start an hour earlier than everyone else, just to ensure that I have some feeling of distance (if not accomplishment) by the time the pack starts hurtling past. Although I’m driving a 356 Porsche with the larger 1600cc engine; in the company of the other 74 entrants I’m in the automotive equivalent of a lawnmower! However, please don’t think this is a complaint, because there really is a perverse kind of pleasure when a 911S, any number of Ferrari’s, Shelby Cobra…..and the list goes on…..roars past. The sound of engines against the relative silence of our surroundings is a automotive audiophile’s dream!
So, Tuesday’s driving consisted of a 300 mile loop from Tucson, south towards the Mexico border and then back again. Within 15 minutes of leaving our hotel, the roads were taking us through national parkland. The only proof of local residence was occasional lines of mailboxes in line on the roadside, and the terrain was a collection of mesquite trees and high desert scrub. I had assumed, wrongly, that Arizona would resemble California, so the varieties of different plants and colours have been a continued surprise throughout this trip.
Heading through a corner, we came to a sadly familiar sight; one vintage car, mechanics truck and collection of heads in a downward direction around an open bonnet (hood). This particular entrant was a 330 Ferrari…that was usually only spotted in the car park at either end of the day. Mark, the driver, waved us down; and in my typical English fashion I politely asked if there was anything we could do to help. With the collection brain trust around the car already, and my technical knowledge limited to being able to recognize the difference between a spark-plug and a distributor cap, this was probably a stretch…but the Copperstate engenders a sense of camaraderie and support that’s as much a part of the event as the road under rubber. Mark nodded, and then announced loudly, “we need your toolkit!!”
The remaining brain trust looked a little mystified, until I produced my treasure. Nods of appreciation, followed by assurances that “this will do” confirmed the words of wisdom I’d been given by the boys at TRE…I may not have the remotest idea what’s in my bag of tricks, but the professionals will, and we just received two thumbs up!
The car was soon running again, and so we all headed on together towards our lunch break at Sonita. Heading towards Nogales, the presence of Border Patrol started in to noticeably increase. Initially there would be the occasional van parked on the side of the road, but as the ranch country expanded into even greater swathes of nothingness, we suddenly found ourselves being required to stop for a full scale border patrol check. Serious looking men with guns and dogs watched as we slowly crept through their checkpoint; and I had to hold back the overwhelming desire to confess to something, anything; simply because they were SO scary!
Unfortunately the dulcet tones of the Egg started to take on a slightly more “too much curry last night” tone as we drove towards Patagonia. Backfiring and burping, and then finally just gliding to an elegant stop. By this time Mark and the Ferrari had become Mark and the Lexus, as his car had also stopped again not to be easily revived; so he kindly collected us and the Egg continued the rest of her journey on the back of a tow truck.
Our afternoon took us through the barren wasteland that is Fort Huachuca. A fully functional fort, its also some of the most desolate scenery we had for the entire trip. The Fort’s history is varied, as it was the headquarters for the famed Buffalo Soldiers as well as the training base for U-2 pilots. For us it took a slightly more entertaining turn, when coming down a particularly windy road, we found the real-life equivalent of the wacky races. At the bottom of a t-junction we found the D-Type, GTO, one of the 911’s and Shelby GT350 all parked in different directions. Some were holding maps, the others waving smart phones helplessly begging the Googlemap gods to answer…everyone was lost! The fort seems to take stealth training very seriously as road signs are virtually non-existent, so in the end we opted for the low tech version of GPS – coin flip and people’s vote. Not technical, but eventually successful!
My day ended with a mechanical conflab. Again, these guys are all volunteers, and they are total rock stars. A combination of experience from Hot Rods to high end restoration, which ensures no car is too complicated to be dealt with. Chad assured me that they’d look over the Egg and do everything possible to have her ready to drive the next morning. Unfortunately the late night update wasn’t so good. A combination of aluminium (AL–OOO-MIN-EE-UM) on one of the plugs and arcing ignition wires suggested something a little more serious than the blocked oil filter or carb gasket problem I’d been wishing for. Once again, Copperstate to the rescue. Although it wasn’t part of my plan, they had a number of loaner cars that are available for participants; so we’d have a Lexus available to complete the last day and reach our return destination of Phoenix. My trusty Triple A card ensured that the Egg had a flatbed trip all the way back to our final location, which she shared with a rather handsome Italian, so she couldn’t really complain either!
As the route book points out, Arizona is a state full of contradictions….and today certainly proved that.
The morning started with our drivers meeting to discuss possible black ice and low temperatures in the morning, before heading off to the mountains and cactus before we finished the day in Tucson. Fortunately the sun decided to shine enough to chase away the worst of the ice, leaving just enough chill in the air for the Egg’s temperature to maintain happily at the halfway mark. She’s a trooper, and smiled sweetly as we were passed almost immediately by the big Bentley, D-Type and Pantera when we reached the open roads….but at least they all waved encouragingly as they left us in their rear-view mirrors!!
From Flagstaff we headed out to National Forest, and within ten miles found ourselves on a fabulous stretch known as Lake Mary Road. Snaking through the forest surrounded by pine trees and enjoying big sweeping curves, it was almost automotive heaven. Despite her 1600cc engine, the Egg isn’t fast like her 911 cousins, but she still loves this kind of driving, as every change down to third sticks her to the ground like glue. All weather tyres have certainly added an additional sense of security, and I’m happy to report that we more than held our own amongst the fir cones.
However, there was a slight blip on the horizon, when we found ourselves stuck behind a Camry. The combination of limited passing options, and the car travelling just those couple of miles fast enough to limit any slick maneuvering resulted in us staring at the back end for slightly longer than appreciated. When the opportunity finally presented itself, we were able to slide past and glance across at our conquest. A rather grumpy looking individual, who clearly didn’t appreciate the moves quite as much as us….but then, they were in a Camry whilst we were in the Egg; so no matter which side of their car we sat, they were going to be miserable!
The temperature continued to rise gradually through the morning to more comfortable mid to upper 70’s as we followed the trail through Devils Canyon and it’s “hoodoos”. According to the route master, they are the result of freezing and thawing of water, with differential resistance to erosion. At this point I have to confess that I’m not completely sure what that really means; but they are big, red, odd shaped rocks that resemble a kid’s idea of the terrain on Mars; and shouldn’t be missed!!!
The afternoon took us on towards Tucson through ranch country, copper mines and endless cactus (or would they be Cacti?). At this point I have to divert slightly and mention that Copperstate is a well oiled machine, and part of its success comes from the 100 plus volunteers supporting the entire event. This includes 8 motorcycle highway patrol officers, who come with their badges and bikes, and are only interested in ensuring that everyone is having a good time! Throughout the event they’ll ride past, or be positioned at various junctions to ensure our navigator isn’t holding the map upside down.
For safety, the local constabulary are also notified of our whereabouts; and the combination of fast cars, open roads and opportunity to enjoy both could easily become the speeding ticket equivalent of shooting fish in a barrel. So, every morning our trusty Captain (or maybe he’s a Sergeant), would also remind us of the varying speed limits throughout the route, to ensure our pocket money wasn’t unavoidably diverted to the local police collection bucket.
Back to the driving……………and as the terrain became more desolate, the sizes of towns diminished. With each new location I was expecting to see a sign informing us that population was no more than one person. Ironically, the names started to also become more familiar as we passed signs for Mammoth, Miami and Sherwood Forest (that scored a ten on the bizarre scale)!!
Although Miami has a sister in Arizona, they clearly weren’t twins. Other than a faded sign pointing to a downtown arts district, there was nothing else in common. Beaches have been replaced by desert sand, art deco replaced by stucco….you get the picture. However, no matter how small the location, there was always a gas station, and it clearly is a worthwhile business, because everyone is trying it. Proven absolutely as we tore through one particular almost ghost town when I spotted a bright red sign proclaiming “God’s Filling Station”.
Outskirts of Tucson, and the sun is starting to set. Almost three hundred miles under our belt today and the Egg seems to be stable. Will be checking the oil before we set out tomorrow, but for now it’s cocktail time!
Saturday…prep day, and I was ready to officially start my eggadventure!
A typically entertaining Southwest experience with our inhouse comedian Bob the flight attendant, was followed by a quick taxi ride to Tempe stadium. Cars had already started to be placed on the in-field, race decals were being fixed, and everyone was smiling. Joining the line of registrants, I waited to collect my goodies; race jacket, the route map and of course, my number!
The register came back with my bag, and a slightly peturbed look on his face. It seemed that for some reason, #23 had not made it to the check in. My heart sank, as the idea of driving naked was not something I’d anticipated, or was even sure would be allowed in the rule book. Fortunately, I was in the hands of professionals, and whilst ideas involving paper cut-outs and sharpies percolated my brain, an alternative was located…..and in less time than it takes to say “happy birthday”, I’d gone from 23 to 29. Still consideraby younger than my real age, so no complaintes here!
Once the Egg was dressed, we started to investigate the rest of the entrants, and by the end of the afternoon had met a great mix of newbies and rally regulars. It soon became apparent that I’d selected a more fun than furious option; as all the stories contained the same ingredients – good people, great roads, and the only requirement was to enjoy every moment. By the end of the afternoon, I’d also had a pretty good lesson in American geography, as the other drivers had come in from, literally, all four corners of the country.
My years of trawling auctions with Bud, or hanging out in garages and racetracks, have clearly served me well; as I came to realise that not only do I know the difference between Pininfarina and Bertone, I can completely appreciate the phrase ‘Zagato Jaguar'(and it is really is exquisite)!! However, the high spot of my day started when a total stranger walked up and said, “so I’m glad to see you haven’t cracked the egg”. He introduced himself as one of the Copperstate organisers, and let me know that he’d not only found the blog completely by accident…he was still reading it!!
Sunday..first rally day. Our route was to be 300 plus miles from Phoenix to Flagstaff, taking us through some beautiful countryside and on one the most fun roads I’ve driven, EVER…….! The morning started early, as the stadium opened at 8am to the general public; and by 9am we’d all assembled for the drivers meeting.
After we were all instructed (avoid speeding tickets, don’t panic if you break down, remember to stop for food), everyone headed back to the cars and waited, not all so patiently, to head out of the stadium to a combination of waving and cheering. Once out of Phoenix we turned off the freeway and headed out to driving country.
The routes are selected to give all the cars an opportunity to stretch their pushrods. No matter what the marque, the variety ensures that all the vehicles are able to be pushed to the limit of the driver. I’m happy to report that we did a fair amount of overtaking, and the Egg seemed more than happy to sing at 80 plus. However the piece de resistance of the day was our lunch bookend. Heading north on I-93, you’ll come to a right turn onto the 97 to Bagdad; and it’s sublime. A collection of gentle sweeps and slightly more aggressive switchbacks combined with dips that create a slight “rollecrcoaster sensation”. The road seems almost too good not to have been manufactured, except that the surrounding countryside is just as spectacular.
The afternoon took us on to Flagstaff. Clouds in the distance inevitably crept closer, and snow began to appear on the side of the road. Fortunately the 6 – 8 inches that fell last night hadn’t all remained, and I finally realised the value of all weather tyres. Sleet and rain interspersed, but the Egg continued unperturbed. In fact, I think she actually quite liked it…temperature gauge sat happily at mid range, and no sense of a slippy back-end.
Pulling into the final stop, I’m happy to report that although Porsches hadn’t fared too well today (three being worked on by the mechanics), mine wasn’t on that list. Most of the cars already parked for the night were at the bigger end of the engine scale, or had fancy Italian pedigrees..so I didn’t feel too bad with our performance! On to tomorrow………..
Less than 48 hours before I touch down in (hopefully) sunny Phoenix….and the excitement is definitely building. Not least because we’ve had thunder, lightning and torrential rain in the last couple of days here in Los Angeles. I know we NEED the rain, just wish it would adopt the more English approach of gentile drizzle for hours, instead of creating a rather unsettling wish that my daily driver came with water-wings or a pair of oars.
Biggest news of the day has to be the launch of a Copperstate 1000 app for both iPhone and, in my not so techno-cool case, Android. This will give my two avid followers (excluding Auntie Colleen & Maximus the Cat) an opportunity to follow the event. I am car #23, sitting more than a little comfortably between a ’65 Shelby Cobra & a very handsome ’59 Aston Martin DB2. Route information is limited, but we’ll be facing 300 plus miles on Sunday from Phoenix to Flagstaff. Fortunately I packed a cooler in the back of the Egg, so we’ll have enough water to make it across the arid desert, or crazy mountainous switchbacks (you’re right….all complete guesswork, I have absolutely NO idea what I’m geographically talking about) without fear of mirage spotting.
Mechanical cousin has taken the news of the app quite well, although he couldn’t help noticing that I’m as old as the car I’m driving. That’s the great thing about family members; they keep you real and have qualms about crossing those lines in the sand smarter friends know to simply step back from as quietly as possible. Still, if all goes well I’m hoping we’ll be able to come up with an equally excellent adventure to embark upon sometime in the future….although as he’s older than me, the window of time for that may be somewhat limited 😉
Before packing her onto the truck, I was lucky enough to add one rather fabulous addition to the Egg’s finery; thanks to the unexpected generosity of one of my dearest friends. A spectacular car emblem from an organization called “Automobile Club des Alpes”. Guaranteed to add at least 10 mph to her top speed, I’m sure!
A couple of brilliant last minute tips have come in from Steve Wheeler & Octane…..
Steve was happy to hear about the toolkit, and suggested that as finishing touch I should “please add a couple of those cheap wire coat hangers…. they make workable exhaust mountings, or other brackets, they’re soft enough to bend with your hands, but strong. I have even used one as a ‘jump lead’ in a desperate situation (don’t touch it gets hot!) I know someone who used one to get a set of keys out of a fuel tank!”
As my excursions with wire coat hangers haven’t advanced much past the classic Blue Peter Christmas decoration display, I am really hoping I won’t be faced with these particular situations; but truly appreciate the inventive and generous recommendation.
Octane (probably the best car magazine in the entire world) offered up a less complicated but just as valuable recommendation; “If you’re navigating, take half-a-dozen pens and put them in different places so you never lose them all!”
And then finally, as the now proud owner of a GoPro HD camera, I had wanted to impress the world with my test drive from last Sunday. Alas, it seems that the blog world, or possibly just this neophyte blogger, has limitations on the type of videos that can be uploaded. So, tonight’s list has increased to include “set up YouTube channel for random clips of old cars, so I can generously share the whole experience with Colleen and the cat”.
A week to D-DAY (Drive Day) and it’s been rather eventful in Catherine’s Copperstate prep world.
The first unfortunate hiccup involved my mechanical cousin. We’d been discussing driving strategies, practicing our left and right hand & mouth co-ordination, when disaster struck. Due to circumstances beyond his control, a conflict of business issues meant that he had no option but to politely decline the offer to co-drive (this year, at least!!!). Personally I felt a hand written note on the front door saying “On a car rally, back next week” should be an appropriate solution, but apparently that’s not the way it works in CEO land.
Disappointed, but realizing that no amount of bribery or cajoling could counter the problem; I resorted to finding an alternative. Amazingly, the opportunity to tear around the back roads of Phoenix is quite appealing, so within two phone calls and twenty minutes I found a suitable replacement that was not only keen, but available.
Reviewing the car, I decided that the odd looking amp living in the glove box really wasn’t necessary. I’d removed the radio some time ago, which meant that this particular example of seventies audio technology was just taking up valuable space for “stuff”. Fortunately, I choose my friends carefully, so was able to call on the assistance of a kind and car-inclined buddy called Brent, to come and help with this particular dilemma. He arrived, with tools in-hand and promised that this particular problem would be an easy fix. Before I could open the bonnet and pull out my toolkit, he was in the passenger seat, and tackling the screws…so far, so easy that even this gal could do it!
Unfortunately, before I could repeat “pass me another wrench, this one is too large”, there was a slight change in his overall tone as he turned upside down and disappeared into the seat well. The calm demeanor now replaced with a few technical terms related to reproduction and random comments about removing an entire something…not looking quite so good. I decided to take a more backseat approach to supervising at this point….actually not even back seat, more along the lines of standing behind the car and out of low flying spanner range.
Just when it looked like the amp was coming along for the ride after all, Brent had a Eureka moment, the glove box came out completely and we voted jointly for the hammer out a screw approach. So, after a slightly longer, more dirt on his jeans than promised amount of time we had the amp and assorted wiring lying on the ground & what do you know…. Porsche glove boxes are actually quite large! To be sure that our, sorry…HIS highly skillful Maguyvering was successful, I turned on the engine to check lights and ignition were all working. We seemed to be missing a brake light, but as that’s an easy fix, I put it on my list of weekend chores and waved an appreciative to my generous, although now slightly grubby, friend.
Sunday afternoon, and I removed the rear light lens with a view to ten minute bulb replacement. However, I had forgotten that I’d now moved into the danger zone of less than 48 hours before the Egg was due to be transported to Phoenix. Thanks to the barbaric concept of American vacation, the opportunity to plan a languishing pre-rally trip to deliver the car myself is not practical. Instead, she’s being shipped with another four or five CA entrants…arriving cool, calm and collected at the end of the week.
So, back to the blown bulb…removing the lens, I found myself confronted with an extremely rusty and corroded back plate, that seemed to have fused together with the bulb completely. Great, just what I needed on Easter Sunday when everything and everyone else was home enjoying chocolate bunny ears and egg hunts!
No other option than Monday morning & over to TRE. Jeremy reassured me that this is standard in the vintage car world, eleventh hour fixes are not only commonplace, they’re to be expected. Mechanics would fix it in a couple of hours, nothing to worry about. No sooner did I arrive at the office, than I had one of those “Good News, Bad News” calls!
Bad News….the back plate corrosion was so bad that it just crumbled when they took the whole thing apart
Good News….reproduction part available at Sierra Madre Collection in Pasadena
Bad News….not sure how to get it collected
Good News….Catherine can drive to Pasadena!
One round trip to Sierra Madre, suppliers of all things 356, and we seemed to be back on the road to Phoenix again. The Egg was ready and looking her usual charming self that evening, needing nothing more than a final wash and polish before the big day….today!
And so, at 11:00am this morning, I watched as she was loaded into a very large transporter, then waved her off knowing that the next time I see her, The Egg will be ready in all her resplendent glory with 74 of her newest best friends at the stadium in Tempe.
Copperstate 1000, 2012……..here we finally come!!!!!!!!!!!!!!!!!!
Just over a week before the Copperstate, so I’ll turn my attention to the other reason I’m taking part in this event; to raise awareness for a disease called ALS (Amyotrophic Lateral Sclerosis), or MND (Motor Neurone Disease).
Until 2002, MND was something I simply connected to Stephen Hawkings, without any real knowledge or understanding. By the end of March that year, not only had my depth of knowledge changed exponentially, I was unfortunately on the way to becoming somewhat of an expert by default. Following a visit to UCLA Stroke center with my mother, to try and resolve what seemed to be ongoing and ever-changing health problems for her; a terminal illness previously nothing more than a phrase only heard in passing on the news became a new, terrifying and unwelcome member of our family.
Motor Neurone Disease is rather like the bus joke…..you don’t know anyone who suffers from the disease, until it appears on the horizon at which point it’s almost immediately joined by numerous stories, none with good endings, of other patients. MND, or ALS as it’s referred to in America, is terminal, and hits the patient and their family like a tsunami. However, this wave doesn’t retreat as quickly as it reaches the beach; instead it just keeps coming……and every swell presents another aspect of the illness that is even more overwhelming than the previous one.
In layman’s terms, there are two types….top down or bottom up. The overall progression is the same, as the brain stops communicating with the body’s muscle structure; resulting in a gradual wasting away of the muscles through under use. However, “top down” is the more aggressive version; because speech, breathing and inevitably the heart are all impacted much sooner. As with all terminal illnesses, there is a desperate need for a cure to be found, but sadly the success rate to date with MND/ALS has been agonizingly slow. Unfortunately, this particular culprit is frighteningly smart…..possibly appearing initially as something benign, or imitating other symptoms; which just increases the complexity of diagnosis and reduces the time available to address or control the onset. To further compound the situation, there is a hereditary version but the diagnosis may also be completely random, selecting each victim for reasons that have yet to be identified by the medical community.
England is lucky enough to have the remarkable charitable organization, MNDA….the Motor Neurone Disease Association. They provide an extraordinary variety of support – from advocacy, social service intermediaries, equipment provision, general information, counseling…and the list goes on. There is no charge for the service, and every person involved with this organization is dedicated to minimizing the pain inflicted on anyone taking, or affected by, the MND journey.
From a personal perspective, the Motor Neurone Disease Association is a huge shard of light, rather than just a small glimmer of hope, on the horizon. There are so many aspects of this particular disease that make it more complicated than most to wrestle with, beyond just the symptoms and the progression. Having a team able to provide additional expertise and understanding; giving information about the help we were entitled to regarding a house retrofit, providing our mother with the best possible and least intrusive care; answering every question that my sister & I had with compassion; these were gifts that we didn’t fully appreciate until we started to look back at the last thirteen months of our mother’s life.
So…to honour the memory of a wonderful woman; my mother, mentor & friend…I’ll be driving like the clappers, enjoying the scenery, remembering to stop and smell the flowers and thanking her at every corner for teaching me to enjoy every single day of my life. I’ve also set up a charity page for donations that anyone may feel like giving to the Motor Neurone Disease Association. Until there is a cure, I hope that the opportunity for future sufferers to be supported as unequivocally & generously as we were, continues.