Taking a tour?

We’ve not been touring much in the last 9 months, with Carole and The YesWeCan CamperVan both needing an overhaul!!!!

Yet we’re always talking to people about MG Awareness whenever we get the chance.

A couple of weeks ago we took our first trip out since last August.

Dexter in Clearlake March 2014

Arriving in Clearlake, northern California, it was already a hot day for mid March!

Dexter at 90F in March

the temperature gauge inside the campervan (put there by the first owner before Carole) showing a cool 90 degrees!

Stopping to get a cool drink at McDonalds, we were asked about our MG signs by a group of bikers who were out touring for the day.

Clearlake bikers

It was reassuring to get their interest and they said that if we organize an event to get attention for autoimmune diseases, there’d be plenty of bikers to ride along and add their support!. Grrrreat!

Then last weekend at the Unitarian Universalist Church in Walnut Creek, CA, a young man came over to look at the signs on our VW and asked “What does MG Mean?” … and then talked about his mother who has another, even lesser known, auto-immune disease, called Inclusion body myositis. There are far too many of these AI diseases nowadays, affecting 50 million people in America alone!!!

We hope that in 2014 others will join us in our drive to spread the word across the miles to help those with autoimmune diseases. They sure need all the support they can get. See VW4Causes for more information. THANKS!

 

I am so thankful

I was just thinking back to a few days before the end of my drive in California. Shown here is my trusty 1971 Volkswagen Westfalia in Carpinteria, just south of Santa Barbara. The night before taking this photograph, I’d stayed with VW friend, Judith, whom I’d met two years before in March 2010 on my first VW road trip.

The YesWeCan CamperVan in Carpinteria, California, towards the end of phase 2 of the MG Awareness drive; start date 20 October 2011 from Provincetown, MA, end date 15 May 2012 in Corona, CA, total distance 7853 miles

On that first trip I soon realized that my VW was my new friend who would introduce me to many more new friends. I also realized that my precious VW gave me the opportunity to start conversations with strangers, and the question quickly became what was it that I wanted to start a conversation about? Was there something important that I could talk about and that would be of interest or benefit to others, I wondered.

At the end of 2010, one year after the start of that first road trip, I was sure I’d found the topic, and another year on as I set off on my second cross country drive, I was pleased I’d chosen MG (Myasthenia Gravis). It would be the focus of my communications on auto-immune diseases and neuro-muscular ones in particular.

Seven months and over 7,500 miles later, at the end of my day in Carpinteria pictured above, I’d felt very fortunate that my VW had transported me safely on another momentous journey. On this trip, unlike the first, we’d had three major repairs before finally a new engine was built and fitted in Los Angeles. However every single time, help was on hand. It was miraculous how I was supported and helped along the way.

In the first instance, when the clutch started slipping and it was apparent it needed replacing, the Full Moon Bus Club’s South Carolina Coastal Group offered to fit a new clutch at their Thanksgivin’ Misgivin’ weekend campout just north of Charleston. Not only did they work on this repair all weekend for free, but Wolfsburg West stepped up and sent a new clutch free of charge and by overnight courier all the way from California to the VW campout’s organiser before we even arrived.

Two weeks later in Alabaster, Alabama, the accelerator cable broke in the middle of a busy traffic intersection as I was driving behind Staci (an MG patient who had been my wonderful host and helper) to accompany her in a Christmas Parade. On that occasion, Bill and Carol from Sylacauga had answered the distress message sent out on the VW network by my ‘support man’ Ken (back in Massachusetts) and they then drove one hour from home to meet me and fix my VW (after which they insisted I have my motor checked and hosted me for a few days while it was).

Two and a half weeks after that, as I was driving one early morning in a remote part of Texas, the fan belt shredded!!!! No sooner had I stopped on the side of the highway, we were joined by the nicest state trooper I’ve ever met. It was a very cold morning and I already had a sore throat and temperature, so he had me keep warm in his car, offered me his phone to call Hagerty for my breakdown service (my mobile had no signal) and stayed with me until my VW was on the tow truck an hour later.

It occurred to me at times such as those mentioned above that my VW bus is a perfect metaphor for a person with a chronic disease like MG. For example, all of us classic VW owners know (and mostly have come to accept) that our vehicles do not move as fast as high performance models, that they lose their balance around sharp bends, and that they often fight to get up hills. We also know that on a good day or when there’s far less resistance, the engine can run much stronger and livelier … and that during those times we can let out a loud sigh of relief or maybe we smile gently to ourselves, knowing that our faith has been restored and the struggle to keep going was definitely worth it.

We also know that during those ups, we might go a little crazy and do too many miles, and that, while it’s good while it lasts, chances are we’ll be pretty tired and plain old worn out later on.

As time goes by, we also learn that life in the slow lane can have its merits, like being far more appreciative of the good times and the fleeting moments of running free without bounds. Most of all we learn that living in the present moment is all there is, and with that, comes a joy all of its own.

So driving an old VW with it’s foibles and surprises, can really be a pretty good metaphor for what it’s like to have a chronic disease and to be steering one’s body through all the challenges that get thrown up along the way.  And the thing is, VWs just keep going and going if they are looked after and treated gently. Also one good example seen out and about on the road can be an inspiration to another, and waves and toots indicate that we share a common language.

For me, my VW has also been the friend who helped me find the very best of friends: those with whom I have a special understanding and with whom I can laugh and cry; those who have similar values and who give without expecting anything in return; and those who realize that trust and loyalty are the most precious of gems.

Boy oh boy … when I look at my old VW campervan, I really do have a great deal to be thankful for, don’t I?  🙂

7853 miles

The YesWeCan CamperVan in Carpinteria, California, towards the end of phase 2 of the MG Awareness drive; start date 20 October 2011 from Provincetown, MA, end date 15 May 2012 in Corona, CA, total distance 7853 miles

 

FOR MORE INFORMATION SEE http://vw4causes.org/mga-route/

Remember to …

… check out why we’re driving for Vehicles Working for Causes and where we are now in our 1971 VW Westfalia

A heartflet PLEA for MG

Hello everyone. I slept last night in WalMart in Redlands, CA

The YesWeCan CamperVan parked overnight in WalMart, Redlands, CA, USA overnight Monday 5 March 2012

and somehow today has started very emotionally. I have been in tears this morning, because I want to do so much for patients with MG but sometimes I get overwhelmed with wanting to do so much and having just me to do it. I know you all have your own priorities and challenges, but today I really need your support.

Sunday I had the idea to plan a fun drive for MG Awareness in this area of CA from Orange County to San Bernadino county but right now I am feeling it’s all a pipe dream as there are a few more pressing issues that are getting me down today. I need a few things to happen first and foremost and maybe you can spread the word in your circles to get the word out about my MG awareness campaign (http://vw4causes.org/mg-awareness/) and read the web pages yourself to see why the patients need our support.

It’s not just the patients who feel forgotten and uncared for, it’s all those poor people (babies, children and adults) with symptoms who are being missed or mis-diagnosed whose bodies are being attacked by their overactive immune system. The longer they take to diagnosis the more likely they are to get so much worse and have treatment be less effective. There is so much work I want to do. And I implore you to read the Vehicles Working for Causes website to inform yourself.

Then we come down to the nitty gritty of what’s holding me back from campaigning more right now. Way back in December in Houston, TX, I spent $200 of my own money on stickers to sell to raise gas money for this trip. I have sold only a handful. I have sold less than a dozen T shirts. Not only do I need $ but I need some space to sleep in my VW without boxes & T shirts and heavy things to move around. My back is hurting again and my arthritic knees are throbbing.  Please visit http://vw4causes.org/support/items-for-sale/ and see if you can help by purchasing some stickers or a small item to help with the gas  money. Out here in CA it’s almost $4.50 per gallon. Also please ask your friends to look around the website to see why MG awareness is so very important.

THANK YOU 🙂

A glimpse of Buses by the Bridge 2012

For our VW Friends and enthusiasts: a short slide show of Buses by the Bridge XVI, 12-15 January, 2012 and a little glimpse of our view of the weekend.

Please click like below if you like this little slide show. Thanks!

Also please take a look at other videos on our VW4CAUSES youtube channel for more news of our drive for MG Awareness and insights into what the patients say.

Cheers 🙂

 

TODAY’S NEWS-HERALD video broadcast on havasunews.com

Our ‘MG Awareness Drive’ is one of the VW stories featured…

… in this video by Ben Pierson, filmed on location at the VW event “Buses By The Bridge XVI” at Lake Havasu City, Arizona, last Saturday, 14 January, 2012.

In this 5 minute video, Carole starts talking about vw4causes and MG at 3 minutes, 35 seconds! Yet it’s worth watching every minute! You’ll also get a first look at our new T shirt for Vehicles Working for Causes (vw4causes).

If you’d like to support our drive for MG and vw4causes through another 5,000 miles up to Oregon and then back to the east coast later this Spring, to continue our campaigning for MG Awareness, you can buy a T shirt.

Look out tomorrow for an announcement on pricing and a link to purchase on the web. Thank you and happy viewing 🙂

 

 

Ben Pierson of  can be contacted at http://www.ideafilmfactory.com

Christmas Wish

From ‘The YesWeCan CamperVan’

“I’m a VW bus parked in El Paso snow
Wondering how my friends are growing so slow,
We wanna reach one thousand by Christmas day
But at this slow rate we’re never gonna pay
The bonus we said we’d give to the best
… Who brought us ten friends and beat the rest,
So get going now and drum up some support
To help MG patients and be a good sport,
For this is the season for bringing good cheer
And not just for eating and drinking great beer!”

From Carole Brown
Friends, would you please help my VW: just post this link on your Wall and then tell your friends that going to his page and ‘liking’ him will be the best Christmas Gift of all!
The link is … http://www.facebook.com/pages/The-YesWeCan-CamperVan/203679777444

THANK YOU xox

MERRY CHRISTMAS from him and MERRY CHRISTMAS from me 🙂

 

Facebook updates

Later we’ll be updating the Thanks page at ‘Vehicles Working 4 Causes‘…………….. but before taking time to do that, here’s a quick update from Facebook for those of you who do not see posts there.

Yesterday, Laura Anne posted this photo she took of our two VW buses side by side, when we visited her early last week in her home town.

Lenny and Dexter (aka The YesWeCan CamperVan) in Aiken, South Carolina, on Monday 28 November, 2011

And then just a few minutes ago, The YesWeCan CamperVan posted this on his Facebook page  …

How am I going to reach 1000 Facebook friends to help me spread the word and PUT ‘MG’ ON THE MAP?

Let us know if you have any ideas by commenting in the reply box below.
THANK YOU 🙂

 

Special conversations for Thanksgiving

Please take a look here for an interesting conversation to be had at Thanksgiving …. http://thinkingleaders.wordpress.com/2011/11/23/engage-with-grace-this-thanksgiving-holiday/