I’m not tired, I have MG

Posted on 30 April, 2012 by Carole Brown

No dummy ….. I’m not tired, I have MG!!!!!

 

so says my educational hippo, MG, who illustrates the droopy eyelids of the neuromuscular disease, Myasthenia Gravis. He’s been with me in my VW bus the whole 6,500 miles and I use him to explain this symptom to members of the public.

I was inspired to show you a picture of him today after seeing JW’s post on an MG patient site on Facebook about the public’s reaction to seeing her young daughter ….

JW:
“I just need to vent – I apologize in advance! I am just SO SICK of having people come up to me and my daughter and say “oh she looks so tired – must be naptime” … no dummy that is just her disease. People feel so awkward when I correct them but I always correct them. It just gets so old. I wish we could just go out once without someone commenting on her eyes and how tired she looks. Yes she has droopy eyelids and some deviation occasionally… she also has a really bad red red red rash around her eyes… why can’t strangers just keep their mouths shut. I don’t let it effect me in public and I definitely don’t let Alli know I am upset but it gets to me every time. As if I don’t have enough constant reminders that she has this disease and others for life.”
JW posted on Facebook MG group at 1.00AM PST  30 Apr 2012

Perhaps we need a hippo T shirt?
What do you think would help educate the public about the symptoms of MG and help them be more compassionate?
Ideas needed please …. the comment box is below.
THANK YOU  ♥

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Another gal whose VW is a working vehicle …

Posted on 27 April, 2012 by Carole Brown

Julia, from Germany, is completing her MFA at San Jose State University and her Bus Stories are part of her final dissertation …………………

Here Carole can be seen meeting Julia during her exhibit of Mr Orange at the university in San Jose, California. They both enjoyed introducing their VW buses to each other, as you can see below. Both are 1971 Vintages – the buses not the gals!

Hi Mr Orange .... let me introduce Dexter aka The YesWeCan CamperVan!

If you’d like to correspond more with Julia or Carole about their work, or if you have ideas about how to use classic cars and buses as ‘vehicles for communicating important stories to others’, please add your comments in the reply box below.

 

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DRIVERS wanted

Posted on 25 April, 2012 by Carole Brown

Here is a wonderful example of how us VW drivers  get together to help burns victims …

… so I am hoping that some of you wonderful VW drivers out there would like to join me and my 1971 VW bus, so that together we can help patients with lesser known autoimmune diseases like MG.

When we have some volunteers and know your locations, then we can start to plan some events starting late October in California and Arizona. 

To lend your support as a VW owner, please join the YesWeCan Team by adding your name and VW description in the comment/reply box below. Below you can make suggestions as to what we need to do to make an event attractive enough to attend. We’d like some of you to help form a committee to organize the first event, so let us know if you can do that. And simply letting us know you’d love to attend is helpful feedback in itself.

We can’t do this alone, so if you can talk to your VW friends and if you know any clubs who’d like to help pass the message onto others, please add their contact information below.

It would brighten our day and mean so much to MG patients if you would like to join and help VW4Causes. 

AND remember to help the burns victims too on Memorial Day weekend if you are in their area.

CHEERS!

 

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Driving for MG; now we are two!

Posted on 20 April, 2012 by Carole Brown

Here’s a photo of Ryan Daley’s racing car as it was being prepped for tonight’s race …

  …… at Wake County Motor Speedway, in North Carolina.

Ryan sent the photo so we could see the two graphics related to MG: the far left is our enlarged bumper sticker (see The YesWeCan CamperVan?) and next to it is the MG ribbon. He’s racing about now in North Carolina, as I am writing this post in Northern California!

Ryan we hope you can hear us cheering from California ….. Go Ryan, GO … put MG on the map!!!!!

FOOTNOTE: 
Ryan is the nephew of Fran, who wrote one of the very first comments on this website. In fact it was very significant at the time, because Fran’s comment arrived only a couple of days before I set off on my coast to coast drive for MG awareness, when I was feeling very uncertain and needed a sign I was doing the right thing.

On 5 November, 2011, Fran wrote: ”Hey Bob, my son just got diagnosed in June with Ocular MG. He is 5 it took us 2 years to get a diagnosis. I totally agree with you. He was diagnosed with all kinds of other things but no one could tell me why a 3 year old had a droopy eye – it just didn’t fit. Now we are learning new things and just trying to navigate it all. Thanks for giving me hope.”

… and I (Carole Brown) replied on 6 November, 2011 

“Thank you Fran for your reply; your comment gives me hope, too – for this road trip to build awareness for MG. I wish your son the best of luck. My mother was diagnosed when she was 20, before I was born. That was way back in 1945 when treatments were not as effective and MG produced much greater weakness and muscle fatigue.”
“Nowadays with the internet and social media, I’m hoping we can all work together to raise visibility for MG and talk about what it is really like to live with this little known disease. My hope is that through others knowing the symptoms, we’ll shorten the time to correct diagnosis and treatment. Bob was diagnosed quickly and soon afterwards he had a thymectomy and an amazing result. I hope my efforts will help to spread the word. If you have any suggestions for me to be more effective, perhaps you can comment under the Support page? Thank you.” 

I wrote to Fran after that, and invited her to meet me and for her son, Jack, to meet my VW Bus, The YesWeCan CamperVan, on November 12th. We all ended up sitting together at the Annual Meeting of the MGFA’s Carolina’s chapter in Durham, NC on that Saturday. It was an important moment.

I think we’ve travelled a fair way since then: Fran in her understanding of MG and her confidence in getting help for Jack as she learns more and more from others with this little known neuromuscular disease; and me in terms of what a fine line it is to maintain my followers and friendships, as I seek to draw in more people to this cause and sometimes get over enthusiastic asking for others’ help and involvement.
When it’s the MGers themselves my requests can be too much on top of an already overwhelming load. This example of Fran (the mother) and Ryan (her nephew) helping five year old Jack and all the other MGers out there, illustrates both family support and a perfect partnership for vw4causes!!!!
Am I being greedy if I say “More please”? 

 

Posted in Community spirit, Disease, Driving, Health education, Raising MG Awareness | Tagged , , , , , , , , , , , | 5 Comments

Courage takes many forms

Posted on 17 April, 2012 by Carole Brown

I just saw this video and had to place it here right away for you to see.

Jade struggles to talk (an effect of MG) as she makes this video to show you what Myasthenia Gravis (MG) does and what she went through.

 

…. WHAT COURAGE!

The patients can say it more clearly than I can – even when they struggle like this, they can let you see what this disease is about.

Only one comment I can add – Jade says her brain does not send the right messages to her muscles. Actually it does send the messages and her nerves are okay, but the auto-immune disease is caused by the immune system attacking the neuro-muscular junction between the nerve ending and the specialised receptors on the muscle fibers. This results in not enough stimulation to make the muscles work as they should with only small amounts of stimulation and some muscle activity. Levels of weakness therefore vary from one moment to another in the same patient, depending on how much they use their muscles; the greater the use, the greater the fatigue and weakness.

See more information on Myasthenia Gravis at this link

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More photos coming here soon

Posted on 13 April, 2012 by Carole Brown

Hi, have you looked at the PIX page recently?

Jack meeting my VW at MGFA Carolinas Annual Meeting 12 Nov 2011

What kind of photos from our MG drive would you like to see?
We’ll post more, once we hear from you. You can comment to your heart’s content, below.

 

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Easter tales from Crystal Bay Farm

Posted on 7 April, 2012 by Carole Brown

Good morning from central coastal California, where I am truly blessed this Easter weekend to be hosted by Lori at Crystal Bay Farm. Lori and I met on Facebook after being introduced by MG patient, Antoinette, whom I am also hoping to meet this weekend. Before my arrival we’d exchanged only the briefest of messages on Facebook ….

I arrived late afternoon yesterday, Good Friday, and was stunned to find that this small ten acre farm overlooks the Pacific ocean and Monterey Bay. The same Monterey Bay that was the forerunner of my “Hitchcock tale” (1) of driving down coastal Route 1  just over two years ago in my same VW bus.

As I met Lori and her three dogs, I also met her aunt who’d come to pick lemons. She took out from her purse a large piece of solid quartz crystal which she had carved into a castle-looking fortress and balanced it on the palm of my hand. Whatever it was, it looked like a magic kingdom to me and it’s warm energy spread into my molecular make up. Then she proceeded to hand me a half-palm sized carved heart, which I held to my own, hoping that my ailing chest (of 4 weeks of bronchitis) would heal. Then Lori took me on her “nickel tour” of strawberry fields and cover crops of mustard, including a visit to her ‘secret’ picnic places amongst the tall cover crop telling me we could only enjoy them for a day or two before they would be mowed down. We sipped chianti from tiny crystal glasses and introduced ourselves to each other with stories of Italian heritage, grandparents long gone and fathers, brothers and husbands who had influenced our lives. Our love of the land and growing organically was one of our common bonds. Later we shared moments where God had intervened in our lives healing people and bringing them back to life in this strange world of ours …….

Excerpt from “Mysteries of journeying through a modern landscape” by Carole Brown

(1) see my blog The YesWeCan Journey and search for ‘Vertigo’, then click on the ‘Memories are made of this’ post.

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Shouting for a friend who can no more …

Posted on 5 April, 2012 by Carole Brown

Last December I went on a small detour in Louisiana to visit MG patient, Steven Taylor, in the even smaller town of Branch. I was so pleased I did, for Steven was a real character and a loving man, whose faith kept him going when MG had taken away almost all of his mobility and ability to do the things he liked to do. It hadn’t taken away his ability to hug his grandson though, or to make a huge effort to talk to me and give me his loving support for my drive for MG awareness. He touched my heart when I met him … so yesterday when I heard he’d passed away, I was shocked and grief stricken.

When I woke up in my VW bus this morning I thought of him immediately and was again filled with sadness … and then I felt an even stronger determination … to do more for MG Awareness. Steven would have said “Go shout about it!” So I am!!!!

After my morning McD’s coffee, and my jovial comment on Facebook, I drove to CalPoly (1) here in San Luis Obispo …. and strode into the student newspaper office and the radio station almost demanding that someone hear what I had to say about why I had driven 6000 miles across country! Then I proceeded to talk passionately (Steven, that’s the professional version of shouting, OK?) to two extraordinary young people.

While being interviewed by David Liebig of the Mustang Daily (2), I talked about MG symptoms, about why I am doing my drive, of the patients whom I’ve met, of my Mum’s diagnosis and how little has changed in the 70 years since then!!!

David asked me what result I’d like from today (great question) and I said I’d like the students to:

  • read the information on the website and learn about MG and other autoimmune diseases,
  • urge anyone they ever meet with the symptoms to get to a neurologist and demand tests for MG, and
  • spread the word on facebook and twitter ….

….. and I’d like everyone to join my VW bus page at The YesWeCan CamperVan and to invite at least one more friend to join too, so we can put MG firmly on the map.

When speaking to Pickles at the radio station, KCPR (2), I talked about how auto-immune diseases are more prevalent in the USA than cancer (YES did you know that!) and that 75% of all autoimmune disease cases occur in women! (8, 9). She is hoping to feature what I said about MG on “The Biba Pickles Variety Show”. I’m sure she will make that happen and hopefully we’ll have a copy of the recording on this website at a later date for you to share with others.

It’s so important that, if you enjoy reading this article, that you share it with others. Together we can show the patients we care and make people pay attention to this and other diseases that get little mention!

Also, please check out the links below for more information and ALSO go to the media tab on this website, contact your local newspaper and local radio station and send them the press release. As Steven would have said, if you can move, DO something.

References:

  1. Cal Poly - http://www.calpoly.edu/
  2. The Mustang News - http://mustangdaily.net/
  3. Radio KCPR - http://kcpr.org/
  4. Patient views on Living with MG - http://vw4causes.org/mg-awareness/living-with-mg/
  5. Photos of young people I’ve met - http://vw4causes.org/yeswecan/
  6. Why I am doing this drive for MG - http://vw4causes.org/mg-awareness/
  7. What is vw4causes – Vehicles Working FOR CAUSES - http://vw4causes.org/about-vw4causes/
  8. Facts on Auto-immune diseases: http://www.aarda.org/autoimmune_statistics.php
  9. List of Auto-immune diseases: http://www.aarda.org/research_display.php?ID=47

This article is dedicated to my friend Steven Taylor, who died on 4 April 2012 from complications of MG. Thank you for reading. You can comment below in the reply box if you wish.

Posted in Faith, Nature, VW community | Tagged , , , , , , , , , , , | 8 Comments

Alice in ‘MG’-land

Posted on 31 March, 2012 by Carole Brown

Simply stunning …

Alice White-Kaminski’s Facebook page on Life with Myasthenia Gravis

Posted in Health education, Raising MG Awareness | Tagged , | 1 Comment

March is …..

Posted on 20 March, 2012 by Carole Brown

It’s almost two-thirds way through March and I only just found out that March is National Autoimmune Diseases Awareness Month here in the USA.  This is another indication of the low visibility and lack of funds for promoting any messages relating to auto-immune diseases. 

Recently whenever I talk about MG, I also mention that autoimmune diseases are on the increase and, shockingly, that they are more prevalent than cancer, with one in five people suffering from one of the 100 or so auto-immune diseases.

The following is taken from the mission statement of  the American Autoimmune Related Diseases Association (AARDA):

The AARDA is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.

AARDA is the only national nonprofit health agency dedicated to bringing a national focus to autoimmunity, the major cause of serious chronic diseases. Approximately 50 million Americans, 20 percent of the population or one in five people, suffer from autoimmune diseases. Women are more likely than men to be affected; some estimates say that 75 percent of those affected–some 30 million people–are women. Still, with these statistics, autoimmunity is rarely discussed as a women’s health issue.

Autoimmunity is a result of a misdirected immune system that causes one’s own immune system to attack the self. There are over 100 known autoimmune diseases; and unlike the many forms of cancer which are recognized as being part of the general term “cancer,” autoimmune diseases are recognized singularly rather than in the overall category of autoimmunity. The public in general is unaware of the autoimmune nature of these diseases. When most people hear one of these diseases referred to as an autoimmune disease, they incorrectly confuse the term autoimmune with acquired immune deficiency syndrome (AIDS); or they think it is a form of cancer.

This lack of knowledge and collaborative effort results in untold suffering for persons with autoimmune diseases due to misdiagnosis and delayed diagnosis which may result in damage to vital organs. The need to bring a national focus to autoimmunity as the common factor in all autoimmune diseases is vital in order to bring a collaborative effort to research, funding, early detection, and eventually, prevention and cure for all autoimmune diseases.

[source: http://www.aarda.org/mission_statement.php]

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To learn more about the immune system, here’s a website where you can find an introduction to the subject  http://www.nobelprize.org/educational/medicine/immunity//immune-detail.html

source: http://www.nobelprize.org/educational/medicine/immunity//immune-detail.html

source http://www.nobelprize.org/educational/medicine/immunity//immune-detail.html

As in any system, when cells are replicated, errors can occur and cell production can go haywire. Aberrant antibody production by B cells is implicated in many autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus. There is still so much more we need to understand about the mechanisms and triggers that lead to errors and over activity of the immune system, that then give rise to the many and varied autoimmune diseases.

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