Thursday, July 30, 2009

Carnival of MS Bloggers #41

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Symptoms, Yoga, and Dignity


I get so frustrated with people telling me that my symptoms aren't real, that I just need to get over it or that they know someone with MS or TM and their symptoms were different than mine so I don't have it and it has to be something else. First of all MS/TM can affect each person differently so just because one person doesn't have pain in a certain area doesn't mean another person can't. Also, these illnesses are hard to diagnose and can take years. Lesions don't always appear on MRI's and results don't always appear with a spinal tap. Sometimes the diagnosis is based on ruling everything else out, the symptoms alone, and evidence that an "attack" has happened more than once.

I have found through my journey that people can either be really caring or on the other hand not care at all. I have found out who my true friends are, I have lost friends, and have been disappointed by friends who pretend to care but don't really show it. These illnesses don't just affect you physically but emotionally as well. It also affects the whole family and not just the person with the illness. I would give anything for this not to have happened to me. I miss the way I was. Mostly I miss being the wife and mother I was and pray that one day I can get that back.

The following I found on a blog of a woman who has MS and thought I would share. Even though I don't have a diagnosis of MS at this time I do have the majority of these symptoms and thought this would be a good way to share with others what it can feel like! I truly hope this well help some people understand what I am going through and realize that it is just all in my head, I am not being weak, and this isn't just something I can get over. [See MS Symptoms - What It Feels Like]





YaoW! It's hot! Here's a breathing technique you can use to cool your system.

Remember - NEVER STRAIN THE BREATH! You can easily cause yourself a panic attack by pushing to hard. Find a breath speed that's comfortable for you. Especially with MS- we want to soothe your system not aggravate it! Smooth Steadiness & Ease. Please honor your body!

So this technique- You wanna be cool not look cool :o)

Find your easy seat. Spine straight and tall, hands on knees or in your lap. Roll your tongue or pucker your lips like you're sipping through a straw. Inhale- tilt the head slightly looking up as you breathe in coolness at the lips. Exhale- tilt the head slightly looking downward with your tongue at the roof of your mouth breathing out through the nose. Gently tilt the chin up & down not causing any strain.

Practice this technique for 10 breaths or 5 minutes- whatever you've got time for - even doing just a few breaths should help cool you a bit. Hope this helps you Stay Cool! Rock Your Practice! Xo- Suz

PS- This breathing technique can be used to bring coolness to your system, to calm the nervous system and to quell hunger or thirst. :0)


Do I stay or do I go............... 
by Herrad in Amsterdam.

I visited Judi’s blog @ Life as a Hospice Patient last night and read her latest post where she says she is sick of being sick. I know so well what she means about being sick of being sick.

I am really sick of it! Everyone with MS or another degenerative disease is sick of it I think. It is 3 yrs since my MS diagnosis and I have gone from walking and independent to needing help 24/7 and to lying in bed 24/7.

What is very hard to take is that there is no prospect of getting better just progressively getting worse. Yet every now and then I still do a double take as I realise that even though I am doing my very, very best, I will never get better!

That is not how it is supposed to go; it is supposed to go like this: the doctor does the diagnosis and then prescribes a course of treatment which you follow and get better and better and can then resume your life.

Not with MS and certainly not with Primary Progressive MS, I gathered that from the first day that I knew what was wrong with me. Saw right a way on the internet that there would not be any treatment because there was no treatment for MS just a variety of drugs to slow down the progress of the disease.

I have known all along that there is no prospect of recovery only getting worse with the only relief that I can let my doctor know when I have had enough. Then the delightful Dr Wijngaarden will come by and administer a drug that will put me to sleep and then she applies the drug that stops my heart after some minutes.

It is not a pleasant prospect but better than lying here unable to talk, to type and to even see and swallow. I know about all of this, that is why I have chosen euthanasia but I just can not understand how it can get to me big time, time and again that I am so very upset that I will not get better.

Took me some time to work out that there was no hope of recovery, the big trick is to keep hope alive while knowing there is no hope of recovery. Maybe it is because we have grown up believing that the doctor will make you better and this time they can't do that.

Took me some time to work this out had not thought of this aspect but of course that is what I have found so disconcerting from the start when it became all too obvious that I/ we were on our own with the diagnosis. I wonder if you recognise that too?

I try to make the best of the good that is in my life like my darling Richie and friends and still being able to be here and now. As long as I can communicate, can talk, write and read and I can eat and drink, I can put up with the pain as I am still getting the what I need to live.

It is reassuring to know that in The Netherlands I can chose the moment when I have had enough, unlike people in England who can not say, this is enough now and who will be kept alive no matter what.

Even though it is not life as we have known it unless you think that not being able to talk, speak, see or swallow would qualify as life as you know it. I do not think that lying in bed not being able to participate in the life around me or in my community would qualify as life for me.

Don’t understand why there is so much negativity towards giving people the right to self determination over their own lives. In England the Moral Majority keep banging on about helpless people being forced to accept euthanasia and refusing to look at the real heart of the question which is people deciding when they have suffered enough and wanting to exit.

It is a question of a life of pain with no prospect of any improvement and not what they, the ‘Guardians’ like to pretend it is about; they like to propagate this myth that to pass a law allowing Euthanasia would put handicapped people at risk of being euthanised.

In England they practise Euthanasia by the back door, they will increase the dosages of pain relief such as morphine to such a level that you are kept in a sort of coma. Then steadily increase the dosage so the person slips from coma into death, this is what they call palliative care.

Anything but allow people the right to decide when they have had enough pain and do not wish to live totally dependent, hooked up to machines to keep you alive and totally incapable of taking part in life.

I personally can not think of a worse way to end my life then totally out of it on opiates attached to a machine that does my breathing for me and another that feeds me intravenously. That would not be what I would like to happen to me, everyone has the right to decide for themselves.

Shame that there is no real debate on the subject instead of just using the red herring of people being forced to request euthanasia. As far as I can see the current method of euthanasia is via the backdoor of palliative care.

‘’Euthanasia is popularly taken to mean any form of termination of life by a doctor. The definition under Dutch law, however, is narrower. It means the termination of life by a doctor at the express wish of a patient. The request to the doctor must be voluntary, explicit and carefully considered and it must have been made repeatedly.

Moreover, the patient's suffering must be unbearable and without any prospect of improvement. Pain relief administered by a doctor may shorten a patient's life. As is the case in other countries, this is seen as a normal medical decision in terminal care and not as euthanasia."

I am glad I live in The Netherlands where I have the choice to make use of the law on euthanasia.

Would it not be a more honest world if people could decide for themselves how long they wish to live with consuming pain, if they are suffering from a degenerative or terminal disease. Let us look behind the governmental smoke screen and demand a discussion and a change in the law now for a more people orientated approach.

It is a very pleasant afternoon here which I intend to enjoy hope you do too.


In the News: Biotech Bottleneck
from I'm an MS Activist

With a name like the Affordable Health Choices Act, you'd think the health-care reform bill that passed the Senate Health, Education, Labor and Pensions Committee this month would have made an effort to provide affordable health choices. But instead, the bill includes a provision that would create a 12-year market exclusivity period for brand-name biologic drugs. This would drive costs to consumers above even current levels, making the title little more than a mockery.

Biologic drugs, medical therapeutics derived through biotechnology techniques, are an important and ever-expanding field of prescription drug innovation... Prices for a single course of a brand-name biologic can soar into the tens of thousands of dollars, and this is not likely to change soon. Big pharmaceutical companies maintain that a lengthy exclusivity period in addition to the patent protection they already receive is necessary to drive continued innovation...

The Obama administration has favored a seven-year exclusivity period, characterized as a "generous compromise"...

There is still time for action. In the House, a pending amendment would offer a similar 12-year exclusion period, but there is an alternative: a bill put forth by Reps. Henry A. Waxman (D-Calif.) and Nathan Deal (R-Ga.) that would limit the exclusion period to five years. If Congress is serious about health-care reform, it must take another look at whether its legislation truly balances incentives for innovation against the need for price competition.
This is an excerpt from a July 28 editorial in The Washington Post. Read the full article here.


This concludes the 41st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 13, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 11, 2009.

Thank you.
Comments for this post.

Wednesday, July 29, 2009

"We Are All Patients," says Kim McAlister of Emergiblog

Continued from Part One, more discussion, prepared thoughts, and reactions from the bloggers in attendance at the event, "Putting Patients First" as hosted by Dr. Val, CEO of Better Health, LLC.

Dr. Wes posted his prepared opening comments of which these statements make me personally want to cheer - “The honest truth is, if I could help the uninsured, and unemployed and chronically ill while preserving my relationship with you – I would. If I could solve these problems while preserving my love for medicine – and the devotion of my colleagues, I would. Fortunately, I believe we can."

“But we can’t do that and continue to fund the gravy train. And that gravy train is the multi-billion dollar health insurance industry with executives who made over $24M annually in 2007, the $800B pharmaceutical industry with executive compensations of over 25 million dollars the same year, the over $24 billion spent in one year in our country on new hospital construction, the nearly half a billion dollars in political campaign contributions from health care special interests a single year (2008), and the 55-80% increase in malpractice insurance premiums that your doctors have paid over the past 5 years.”

...A final member of the Twitter Gallery was Kerri Morrone Sparling of "Six Until Me" whose round-up goes directly to the heart of the discussion: Government Health Care. Her readers provide excellent commentary on the issue, especially those who have lived in the US and elsewhere.

Kim of "Emergiblog", never shy to say she is definitely NOT for a single-player plan run by the government, ended her summary making an excellent point - “I’ll say one thing: no matter what we believe, why we believe it or what our role is in the health care system, it is a conversation rife with strong opinions and passionate debate. And, in the end, because we are all patients in one form or another at some point in our lives, the conversation is about us. So, when you hear the phrase ‘putting patients first,’ think of it as ‘putting me first.’ That may help you get a foothold in the morass of information that is the health care debate. It worked for me.”

Finally, from one Canadian I respect comes - “Yes America! I Like My Healthcare.”

Please read and consider answering the questions posed at the end of this article regarding your health care.

Read this post in its entirety:

Health Care Reform: Putting Patients First, Part Two

Patients for a Moment is Hosted at Everything Changes


Patients for a Moment #4 is ready for your reading enjoyment. This week is hosted by Kairol at Everything Changes.

My favorites from this week include The Albatross by Duncan Cross and I Went, They Scoped, Now Starbucks is History by Kim of Emergiblog. I'm honored to have my post Not Your Typical Patient featured.

"Lisa is my hero." - Kairol

Thanks Kairol. :)


Tuesday, July 28, 2009

"Ultimately Not About Health Care" says Congressman Paul Ryan

Health care reform is divisive dinner conversation here in the Nation’s Capitol. Ok, maybe not at everyone’s dinner table, but it is a very hot topic lately. On July 17, 2009, I attended an event hosted by Dr. Val Jones, CEO of Better Health, LLC, titled - “Healthcare Reform: Putting Patients First” - at the National Press Club in Washington, D.C.

As was noted in the larger medical blogosphere, there were no patient bloggers invited to participate on the medblogger panels. In response to the minor uproar, Dr. Val commented, “The spirit of the conference is about expressing the need to preserve the patients’ right to choose (along with their providers’ advice and input) the best path for their care. It was never my intention to exclude patients from the conference in any way – patients and physicians/nurses are each others best allies, and we need to stick together!

Ok, with that out of the way, let’s talk about what was discussed during the conference.

The keynote speaker was Congressman Paul Ryan (R-Wisconsin) who started with - “This event is a landmark in how we get discussion and debate going in the 21st century. We are communicating with the grass roots, with medical bloggers here in this room and across the country.

“Let me tell you this: I don’t want government interfering in the relationship between doctors and patients…and I don’t want insurance companies interfering either! I want a vibrant health care market that lets patients choose the health care options that are right for them and their loved ones. I want a free market democracy that puts patients first. We can have this, and I’ll say something more about that in a minute.”

The majority of Ryan’s speech (transcript available) was dedicated to demonizing the role of government in healthcare reform solutions and the Democratic bill recently introduced in the House and supported by President Obama. Ryan finally said this out loud, “The fact is, this is ultimately not about health care but about promoting an ideological objective.”

“Not About Health Care” - That’s a frightening admission, but spoken from someone who has access to excellent coverage and care. For more on Ryan’s speech, read Duncan Cross’ commentary.


Read this post in its entirety:

Healthcare Reform: Putting Patients First, Part One


Saturday, July 25, 2009

Smile!!

I'm having trouble smiling today after my visit at the neurology center yesterday. Bottom line is that I'm going on for MRIs tomorrow to look for changes from my last set of MRIs. Monday, I begin 3-days of Solumedrol infusions, with the benefit of not needing an oral taper this time. And depending upon the MRI results, we will talk about changing medications because 1-2 relapses (long ones at that) each year are too many.

However, the following performance makes me smile. The sound fills my heart and it is good horn playing indeed. Fun stuff!!



This arrangement of the overture to Ruslan and Ludmilla is found on The London Horn Sound recording.

Friday, July 24, 2009

Welcome New MS Bloggers to the Community

Healing Through Multiple Sclerosis by Cathy

Conversations regarding disease have always been colored by an ‘either-or’ mentality. Either we are healthy or we are sick. With the advent of numerous autoimmune illnesses having questionable causes and few count-on-able antidotes, we now have a significant part of our population living in the grey area; having a full life while managing the challenges of a high-maintainence body.

These postings are my way of beginning to de-pathologize disease. I was diagnosed with Multiple Sclerosis in 2000. I have been a working artist for 25 years. I graduated with a BFA from The Center For Creative Studies, College of Art and Design in Detroit, Michigan. I began working first as a textile designer creating hand-painted fabric for interior designers and also for the fashion industry in Boston. In 1987 I moved to Santa Fe, New Mexico and found home. I segued into oil painting on highly textured surfaces always inspired by the local landscape and exhibited my work successfully for many years. The diagnosis of MS was shocking as my body has always done what I wanted it to do: champion gymnast as a young girl, lots of Iyengar Yoga as an adult.

The images I use to complement the writing are drawn from my own work over the past 25 years. As my body becomes more constricted my heart seems to widen and want to reach out more than I have done in the past. This presence of both an opening of my soul and limited physical movement makes me wonder what the definition of ‘health’ really is? These writings are more of an invitation than anything else; to myself to come forward with a softness, strength and vulnerability, and to you as the reader to witness, perhaps be touched in some way and come along with me as we all decide what is REALLY essential to thrive in our changing world.

MS and Living! by Nick

My name is Nick, a 52 year old living on the Gulf Coast of Florida. I live with my lovely wife Carmela - daughter Amy (when she isn't at FSU) and son Zachary, while our daughter Ally is living her life outside our home with her husband Craig. I am living with Secondary Progressive MS - having first been diagnosed in 1998, while working/living in Waterloo, Belgium. I'm still mobile - combining my walker, scooter & hand controls and crane lift on the mini-van to get around. I get upset with the MS, though as is my nature, I turn each obstacle into a unique opportunity to grow and learn - and hopfully share in a way that all can relate to.

Another Day with MS by Mike

Primary Progressive Multiple Sclerosis Officially diagnosed on October 7, 1994 amazing how you never forget that day like an unwanted birthday it comes back to haunt you every year. I've been in a wheelchair for the past several years more than I care to remember and if it wasn't for my spouse well probably wouldn't be here.

Erin and MS (or More Sunshine)

I have a bachelor's in English Liberal Arts and a Minor in Creative Writing. In April of 2008, I was diagnosed with MS. I always said I wanted to write a book someday, and I try to journal, but I detest writing by hand. Typing is much faster, and thanks to a lot of solumedrol, I can type again. I think this will be cathartic for me and hope this will help other people living with MS.

Yoga Empowered Online 4 Multiple Sclerosis by Suzanne

Yoga can be done by anyone, in any shape, in any condition as long as you can breathe- YOU CAN do Yoga. Show up to the mat, assess your body & mind at that moment. Learn how to adapt YOUR practice to best suit YOU- the practitioner!

This site is to provide the knowledge and resources to help you discover for yourself how to use yoga tools to manage symptoms & live your life
more fully & mindfully!

MS Activist Network by Nick

Nick has been an MS advocate since 2000.

What is a multiple sclerosis advocate?_______________________________ An MS advocate has the courage to take action and do something about the many problems in the MS community. Taking action, whether we do it alone, with others in our community, or with support groups, is empowering. Those of us who have the power to fight must do so for those who are no longer able to fight for themselves.

Graymatter.org.uk by Josh

Ok, I’ve decided to make this my MS blog as it’s not really something I like talking about on facebook but I would like some kind of public space where I can rant about all this rubbish that’s on my mind.

I haven’t actually had a positive diagnosis yet but basically it looks like I have the condition. Although I think it’s probably been going on for a couple of years now, I didn’t actually realize until January of this year.

It’s literally as if I woke up one day with multiple sclerosis!

Dan and Jennifer Diggman

Movie writers would never dream up a fairytale of two people with multiple sclerosis falling in love and living happily ever after. But Jennifer and Dan have been living this truest of love stories as a married couple since 2005.

Combined, Dan and Jennifer have taken on this chronic illness for more than 20 years. Jennifer was diagnosed in 1997; Dan was diagnosed two years later. She has secondary-progressive MS, while his is relapsing-remitting.

They met at a special National MS Society program called “Finding Your Buried Treasure.” Jennifer was one of the small group leaders at this daylong program intended to help people with MS rediscover the goals and dreams they’d lost sight of in dealing with the rigors of everyday lives.


Thursday, July 23, 2009

Not a Typical Patient

"But, you're not the typical patient," said Valerie Tinley, NP who sat on the Primary Care Panel at the "Health Care Reform: Putting Patients First" discussion hosted by Dr. Val of Better Health.

When tossing around my impressions of the medical blogger/political event (although beforehand bloggers who expressed concerns about the rightwing tilt of the planned event were assured that it was not intended to be a political event), I keep coming back to Ms. Tinley's words. - "But, you're not the typical patient."

Ok, I admit that. Anybody who reads this blog is not likely to be the "typical" patient, unless you are from a PR company or think-tank who is monitoring what is said in the social networking world. But what exactly is typical?

The conversation I had with Ms. Tinley following the event stemmed from the question I asked the second panel. Now, I didn't take notes of my question but off the top of my head it went something like this.....
Hi. My name is Lisa Emrich and I am a patient blogger at Brass and Ivory. I am familiar with some of the medical bloggers who have spoken today (smiling hi). I have multiple sclerosis and rheumatoid arthritis. By the way, I want to say that I love my doctors and that they DO communicate with each other. In fact, they send reports to each other following appointments and know exactly what is going on with me and my care. (This being in response to a portion of the discussion which occured during the primary care panel.)

Just recently, I undertook an exercise to determine what exactly were the costs for routine care for me in one year - what my insurance paid, what I paid, and what was left unpaid. [Rounding the numbers], the total cost was $55,000 and some change. Insurance discounted $9,000 and paid almost $12,000. I paid almost $4,000 which left $30,000 unpaid for prescription costs. I did finally receive assistance for one medication, but in order to qualify, I have to earn less than 200% Federal Poverty Level which is roughly $21,000. I live here in the DC area where the median income is around $90,000 the last time I looked, so it's unrealistic to expect someone to life on $21,000.

I am self-employed and have an individual health insurance policy which has a $1500 limit on prescription coverage. My insurance is with Carefirst BCBS, probably the largest insurance company in the area. Kaiser Permanente also has the same limitation in their individual policies. Even the high-deductible plans offered by Carefirst on the individual market have the very same prescription limitation which is separate from the main deductible, so that wouldn't even work for me. And...the idea that I could get $1000 (or whatever amount) to spend on my own care would not come close. (This in response to a policy suggestion which Kim McAllister mentioned during the panel discussion. She then asks me: wouldn't you like it if insurance companies had to compete for your business?).

That's the way it works for my mother's health insurance. She's a federal employee and as a civil servant she participates in the FEHBP where the insurance companies do compete for business. I would love to have the options in health insurance which my mother does, and its coverage.

So my question is: What is the answer or solution which would address MY situation in health care reform? My situation is repeated over and over, and I don't hear anything in the discussions of pre-existing conditions or universal coverage which address this type of problem.

Initially, there was silence and I got several blank stares. It seemed that nobody knew what to say or wanted to be the one to say it. Then, Dr. Wes chimed in. "Eliminate direct to consumer (DTC) advertising of drugs. No more commercials for the next blue pill...."

What about those DTC pharmaceutical ads? I could live without them and wouldn't feel any loss. But, more importantly, what about the actual price tag placed on our drugs? Who is trying to keep those costs down? Medicare and Medicaid can't because they are not allowed to negotiate drug prices and it certainly doesn't seem that our insurance companies are working hard to push back.

When I was diagnosed in October 2005, my neurologist prescribed Copaxone which is the drug I had told him I was interested in using. My insurance would not pay for it so I was referred to the National Organization for Rare Disorders (NORD) who administers the assistance program for Copaxone. I qualified for a 50% award, receiving six months of drug with a charge for shipping/handling. After unsuccessfully appealing for additional assistance, I had to purchase Copaxone at full cost (well, actually the rate my insurance company had "negotiated").

It turns out that only 3 years ago (summer 2006) the cost of Copaxone was $18,000 annually. When I wrote a post - "the value of health or the value of money, what do you see?" - the annual cost of Copaxone was $21,000. That was January 2008, a mere 18 months ago. Now the cost of Copaxone is listed at $32,000 at drugstore.com.

Jul 2006-Jan 2008: $18,000 + 16.7% increase = $21,000
Jan 2008-Jul 2009: $21,000 + 52.4% increase = $32,000
Jul 2006-Jul 2009: $18,000 + 77.8% increase = $32,000

There is no good reason that the cost of Copaxone or any of the MS drugs should have gone up almost 80% in three years. Absolutely no good reason.

But that's not what makes me a "not typical" patient. It is the fact that I actually know what my medical costs are in one year...and I care. Many of the complaints coming from the panelists stemmed from how patients are protected from knowing the cost of their medical care because "somebody else pays." This goes back to the "skin in the game" theory of health care reform.

Trust me - I've got skin in the game and it's getting burned.

When Ms. Tinley approached me after the "Putting Patients First" event, she suggested that I had misunderstood her when she discussed high-deductible health plans during her time sitting on the panel. I'm pretty sure that I didn't understand. She reminded me that, although the deductible would be higher, the premiums would be much lower.

Well, I never complained about my insurance premiums which are lower than they would be otherwise because I have an underwritten policy, meaning that I passed their "healthy" qualifications when I applied 9 years ago. What Ms. Tinley missed is that my prescriptions would STILL NOT be covered under the high-deductible policies currently available in my area. The reason is due to lack of regulations in the individual market serving the Washington DC area.

So frustrating that those who are making recommendations and supposedly are "putting patients first" do so without the detailed and specific knowledge which some of us "atypical" patients have. Doctors and patients work together as a team (most of the time). Without each other, this entire industry would not exist.

It is time that patient's concerns are heard loud and clear. If you have a blog, please write from your heart using concrete knowledge and examples. If you have an educated preference to the specific health care reform bills, and by this I mean one which hasn't been fed from propaganda websites, please contact your representatives and voice your opinion.

Personally, I want to see a public option available. I want to have the same protections which my civil servant relatives have. However, I don't want the same regulatory (lack of) oversight to continue which allows me to be without sufficient drug coverage. The same rules for everybody, standard minimum coverage including pharmaceuticals, whether the insurance is individual, group, self-insured, or public.

That's my opinion at this time. What's yours?

Wednesday, July 22, 2009

"Let's talk about sex, baby"

“Let's talk about sex, baby
Let's talk about you and me
Let's talk about all the good things
And the bad things that may be
Let's talk about sex”
- Lyrics by Salt ‘n’ Pepa

So we’ve been talking about sex, intimacy, sexual dysfunction, and multiple sclerosis at MS HealthCentral. For such a challenging topic, the response has been very positive. I highly recommend that you start with the first post, read through the series, and add your comments and suggestions. Thanks in advance.

In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.

For a discussion of sex toys and tools, read this post in its entirety:

Multiple Sclerosis: Sex Toys, Tips, and Tools

Monday, July 20, 2009

40 Years Ago - On the Moon





From the Boston Globe:
July 15, 2009

Remembering Apollo 11

40 years ago, three human beings - with the help of many thousands of others - left our planet on a successful journey to our Moon, setting foot on another world for the first time. Tomorrow marks the 40th anniversary of the July 16, 1969 launch of Apollo 11, with astronauts Neil A. Armstrong, Michael Collins and Edwin E. "Buzz" Aldrin Jr. aboard. The entire trip lasted only 8 days, the time spent on the surface was less than one day, the entire time spent walking on the moon, a mere 2 1/2 hours - but they were surely historic hours. Scientific experiments were deployed (at least one still in use today), samples were collected, and photographs were taken to document the entire journey. Collected here are 40 images from that journey four decades ago, when, in the words of astronaut Buzz Aldrin: "In this one moment, the world came together in peace for all mankind". (40 photos total)

Sunday, July 19, 2009

French Horn Player with MS organizes CT Benefit for NMSS

Bridgeport Symphony member orchestrates fight against MS
By National MS Society - CT Chapter
Jul 15, 2009 - 2:59 AM

Greater Bridgeport Symphony Orchestra member Sue Spaulding smiles as she clutches her beloved French horn. Spaulding, who was diagnosed with multiple sclerosis in 2005, is organizing the Connecticut French Horn Orchestra concert to benefit the National MS Society, Connecticut Chapter.

Sue Spaulding’s life is devoted to the French horn, whether it is playing the instrument for orchestras or teaching students how to play across the state. So when her ability to play was hampered, she knew something was wrong.

“I had a few episodes of falling and of losing feeling on my right side,” said Spaulding, describing the initial symptoms of multiple sclerosis. “I played several concerts without feeling the horn bell on my right hand. I spent those concerts wondering if I was drooling or something equally obnoxious.”

Spaulding’s symptoms, she was told, were considered typical for the unpredictable disease and she was diagnosed with MS in 2005. Four years later, Spaulding’s personal battle has dovetailed with her professional ambition.

The first Connecticut French Horn Orchestra concert to benefit the National MS Society, Connecticut Chapter will take place Saturday, Sept. 12, at 7:30 p.m. in North Haven at St. John’s Episcopal Church.

“The diagnosis of MS was quite frightening but through counseling with my neurologist and information from the National MS Society, I found that I could certainly live with MS and go on with my life in any way I chose,” Spaulding said. “I have chosen to keep playing and I have more joy and satisfaction than I can even begin to describe.”

With her fight against MS as an inspiration, Spaulding created the concert as a way to bring the dozens of professional French horn players in the state together, something that has not been done in years.

“The response so far has been overwhelming and I’m looking forward to having at least 30 French horns playing at the concert,” she said. “It was very rewarding to me because when I asked my friends who play the horn, they were shocked because my diagnosis wasn’t something I shared. It wasn’t something I tried to hide, I just didn’t need to tell everybody.”

Spaulding explained that the outpouring of support has come from professional acquaintances who shared their experience of dealing with disease or knowing loved ones who live with MS.

St. John’s Episcopal Church agreed to host the inaugural event and Spaulding said the building’s acoustics are “perfect” for the French horn and should provide a memorable venue.

Matthew Lincoln, rector of St. John’s Episcopal Church, said that Spaulding, who is a member of the church, asked if the church could simply host the concert. But Lincoln and the church’s parishioners decided to get more involved.

“We could have just let her use the building but we find ourselves looking to support projects and do good in the community,” said Lincoln. “The people of St. John’s want to help people and that’s why we made an investment in this wonderful event. We’re very excited about it.”

Spaulding is the principal horn for the Greater Bridgeport Symphony Orchestra and is a member of the Hartford and New Haven Symphony Orchestras. She is also a teacher for the Hartt School of Music Community Division at the University of Hartford and teaches classes and lessons for the instrument individually and at Central Connecticut State University in New Britain.

The Connecticut French Horn Orchestra concert takes place Saturday, Sept. 12, at St. John’s Episcopal Church, located at 3 Trumbull Place in North Haven. Tickets are $20 and will be available at the church beginning Saturday, Aug. 15. Tickets will also be available at the door. Proceeds benefit the National MS Society, Connecticut Chapter.

More than 6,000 Connecticut residents, like Spaulding, are affected by multiple sclerosis, a potentially debilitating disease affecting the central nervous system. The cause is unknown and, as a result, there is currently no cure for MS. The progress, severity, and specific symptoms of MS in any one person cannot be predicted.

Funds raised for the National Multiple Sclerosis Society, Connecticut Chapter, through events, such as the Connecticut French Horn Orchestra concert, ensure ongoing scientific research to find better treatments and a cure, as well as to provide vital programs and services offered by the chapter to those in the state living with multiple sclerosis.

For more information on the concert or to purchase tickets, please contact St. John’s Episcopal Church at 203-239-0156, e-mail stjohnsmsbenefit@yahoo.com or visit www.stjohns-newhaven.org.

To learn more about multiple sclerosis, its effects, and programs and services offered by the chapter to those living with MS by visiting www.ctfightsMS.org.

© Copyright by StamfordPlus.com

Saturday, July 18, 2009

Lisa Goes To Washington

Well, for those who know where I live, this is not such a surprise. In fact, Washington, D.C., is only 7 miles down the road. Yesterday, I traveled down to the National Press Club to attend the "Health Care Reform: Putting Patients First" - a medblogger/politician conference hosted by Dr. Val of Better Health. As has been noted in the blogosphere, there were no patient bloggers on the panels. However, there were a few of us in the audience, including myself, Duncan Cross, and Kerri Morrone Sparling of Six Until Me.

First of all, it was great to meet some of the bloggers I read and admire in person. To have Dr. Wes come up to me enthusiastically afterwards, or even Duncan who came up quietly as soon as the forum officially ended to introduce himself. Very good to see Kim of Emergiblog who I had met in Florida last October when we both spoke about the blogging at the Johnson & Johnson communications convention.

There is still quite a bit of information I'd like to ponder which was presented or discussed during the forum, but here are just a few initial reactions. (Don't fret, I'll post more later.)

The keynote speaker was Congressman Paul Ryan (R-WI), co-author of the "Patients' Choice Act" who is "the Ranking Member of the House Budget Committee, where he works to bring fiscal discipline and accountability to the federal government. He also serves on the House Ways and Means Committee, which has jurisdiction over tax policy, Social Security, health care and trade laws. Paul has focused his recent legislative efforts on addressing our long-term fiscal crisis: the explosion of entitlement spending."

Ryan made it very clear that he is NOT in support of "America's Affordable Health Choices Act" which was introduced in the House on July 14, 2009. He said, "I don't want the government interfering with patients and doctors. I don't want insurance companies interfering also." His speech was very much anti-Obama and anti-democrat there is no denying. "It isn't honest competition when the government is referee and player. [...] We will be on the path to socialized medicine." He urged - "You must act right now [to] defeat this threat!!"

Very disappointing to me was that Congressman Ryan did not stay to listen and interact with the medical professionals and bloggers. This wasn't a true conversation which allowed politicians and doctors/nurses to listen and learn from each other. Disappointing. [Dr. Val has added a transcription of Ryan's address at Better Health.]

Another presenter was Robert Goldberg, Ph.D., Vice President and Director of Programs of Center of Medicine in the Public Interest which is "a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness."

He began his presentation with a video including negative commentary and remarks regarding the health care systems in UK and Canada. Admittedly, this did not help me to keep an open mind to hear what he had to say, but be open I tried to be. When looking back at my notes, I see that I didn't take many other than to check out the website handsoffmyhealth.org which is presented by CMPI Advance.

I mentioned near the top of this post that there were no patients on either of the panels. However, there was one patient blogger who spoke briefly and that person was ME!! At the very end of the forum, I was able to ask a question of the second panel. But ask a simple question, I did not. Instead I gave background information which led up to my question. The subject of my inquiry focused on the costs of routine care for one patient living with RA and MS.

Of course, there is no easy answer to my dilemma but something encouraging happened after the forum concluded.....several doctors, a couple of nurses, and Robert Goldberg approached me to let me know that they enjoyed and appreciated my question. Too often the patient's voice is not being heard, least of which the voice of a patient dealing with chronic illness not fitting into the top five categories (ie. heart disease, cancer, stroke, COPD, and diabetes).

Goldberg seemed surprised to learn the limitations on the patient assistance program of which I am a participant. He even offered to talk to somebody at TEVA....keep in mind that CMPI does have financial relationships with the pharmaceutical industry. We spoke quite a bit after the forum and Goldberg mentioned an interest in joining forces to write an article. He said, "I am serious." I believe that he plans to formulate his thoughts on the matter and get back to me.

Earlier during the forum, a question came from Nancy Hughes of the National Health Council who has the "Campaign To Put Patients First." In fact I was sitting next to Nancy, and after she asked her question, I leaned over to say that I'd like to talk to her after the program. Unfortunately she had to leave prematurely, but I certainly to plan to contact her as "the mission of the National Health Council is to provide a united voice for people with chronic diseases and disabilities."

Of course, I look above and realize that this short post, to be expanded upon later, has grown rather large. And I haven't even mentioned the doctors and nurses who spoke. There is so much to cover, so I will stop here and simply say that more is coming.

Here is an occasion where I'm very glad that I live within the Washington Beltway and was able to attend an event. Too often I am unaware of events when they occur, but thanks to the blogosphere I didn't miss this one. Yeah!!

Thursday, July 16, 2009

Carnival of MS Bloggers #40

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Perseverance, Compliance, and Supplements


I have been opening the waterworks to the strangest songs on the radio. This would not be a bad thing except I only listen to the radio while I am driving and it makes for a weird scene.

I am male, 6'3" tall, about 290 pounds and drive an F150 (pickup truck for you non truck types). A red one. As I have pointed out, in a comment posted on a great blog (Living Life With Sarcasm, Kids, and MS), I have been doing this and getting some strange stares at stop lights. I mention this because it is helpful to put an image in your head.

Ok, so I was listening to the radio when an Elton John song, Don't Let The Sun Go Down On Me, came on. Sure enough about 5 or 6 notes in the tears started rolling. As usual I felt more than a little embarrassed, because we all know real men don't cry (riiiiiight!), but then it hit me. BAM! Another car.... no, not really. I am being reminded of something I had forgotten.

My mom, may she rest in peace, was a huge influence on me and my musical choices. She taught me that all music had something to offer and was worth listening to. Even to the end we both agreed that rap was ok to not like but I have some on my iTunes account and my iTouch (Not to mention Spice Girls, Aqua, and Toni Basil but that's another post). I remember when I was in elementary school and getting ready in the mornings. Mom would fix us some oatmeal (or something that I remember being oatmeal but could have been boiled paper for all I know now) and have the stereo playing. It wasn't always Elton John but it is his music that stands out in my memory.

She seemed to smile more when she listened to him, hum a little and even sing softly to herself. It is this memory that really stands out in my mind and quite possibly why I have a particular affinity for anything done by Elton John. While so much of my childhood is lost in an ever expanding fog these memories stand out in sharp contrast. To be honest I could not swear to you they are real anymore than I can tell you a blackhole is real. To me it is real and that is all that really matters.

My mom died in 2006 after a very long struggle with cancer. The last 8 months of her life was spent confined to a bed set up in the living room so she could be at home living with us instead of relegated to a nursing home or stuck in a back room forgotten. The last 5 months or so she could not speak or move except for a forced smile, the faintest of nods, or the grip of a titan when I would hold her hand. My father and I, along with the angels from Hospice, took care of her. The one thing she loved, even then, was listening to the radio and I do know that when any Elton John tune came on she seemed to lose herself in the music. Perhaps she was remembering something like I did or maybe even a childhood memory of her own came to keep her company for those few minutes.

This is the first part of why I am crying so much lately. I miss her dearly and would give anything to see her one more time. The second part is my MS. I am only 7 months into my diagnosis (Though I believe I have been living with the disease for more than 6 years at this point) and I am having a little trouble coping with the future. The song in question is emotional to me because of the lyrics and they do mean a lot to me.

Lyrics copied from eltonography.com

I can't light no more of your darkness
All my pictures seem to fade to black and white
I'm growing tired and time stands still before me
Frozen here on the ladder of my life

Too late to save myself from falling
I took a chance and changed your way of life
But you misread my meaning when I met you
Closed the door and left me blinded by the light

Don't let the sun go down on me
Although I search myself, it's always someone else I see
I'd just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

I can't find, oh the right romantic line
But see me once and see the way I feel
Don't discard me just because you think I mean you harm
But these cuts I have they need love to help them heal

I guess it is true that each person takes away their own meaning from a song. This song especially reminds me of mom and the struggle I have to face with my MS. She fought her cancer to the very end. She never once said she would lose to it. Even when the meds made her loopy she fought. Regardless of the fact that the cancer was doing things to her she could not control she never gave up. She was a strong woman with a heart the size of the universe even down to that last day. I remember feeding her breakfast (A little bit of scrambled eggs, toast and orange juice). She could not talk but her eyes spoke volumes. There was a fire that burned in those eyes that I am reminded of when I hear songs she loved or would have loved. She lived to the very end.

That is why I am crying right now. I will not give up without a fight. I will not let her down; not now, now ever. MS may be doing things to me that I can not control I will not let MS control my life. I will still live each day as hard as I can and I will do it for myself, for my friends and family but most of all for the memory of my mom. To truly be alive you have to live no matter what your circumstance and to do anything less is giving up.

She didn't.

Why should I be any different?


by Webster

All these new drugs we now have for MS - Avonex, Betaseron, Copaxone, Rebif, Novantrone, Tysabri - the list goes on. Not one of them promises to make us feel better. As a matter of fact, many of them tell us to expect to feel worse (with flu-like symptoms)! But still we endure the injections, IM or SubQ, weekly, several times a week, or daily, or the monthly infusions which offer even graver possible side effects, some of which can kill you.

Still, most of us take one, either out of hope that it will slow our pregression as promised, or out of fear that if we do nothing we are surely screwed.

I held off for several years because I was doing well, and because I was on Medicare. I simply couldn't afford any of them. Also, I wasn't charmed by the meager benefit I felt they promised. Basically, they help one third of the people who take them slow their MS by about one third (of projected outcome). That sounds like a crap shoot to me. Still, I signed on.

I was prescribed Avonex first. I went on it for a year, then my insurance stopped covering it, so I went off for the next year, then it started covering it again, so I went back on it for another year. Guess what happened to me? Though I never had any side effects at all, my relapse rate went from about one every three years to three in one year! With residual loss of function. After sixteen years of being free of needing even a crutch, I became once again dependant on one. [For the sake of full disclosure, I now use one crutch in my house and a walker with a seat out in public; and a w/c for distances.]

So, now I refer to these DMDs as Drugs of Mass Destruction.

Still, out of both hope and fear I give myself an injection every day of Copaxone. Some shots leave a bruise, others a lump, and they all leave a sore spot which lasts for anywhere from 20 minutes to ten days! For me, the shots on the thighs are the worst. The ones on my belly or "muffin top" (heh) are the easiest.

I am back to having just one relapse every year or 18 months, and with IVSM, I recover from them completely. May my luck with that hold out, because my relapses affect my ability to walk the most. While I don't fear once again being wheelchair dependant as I was during my first 2 1/2 years with MS, I do fear the inaccessibility of my house. My bathroom door is only 19" wide! Hell, I can't even get my walker through it without folding it up a bit.

Because of that alone, I will continue taking my shots, and hope for the best. The worst is too painful to contemplate.

Announcement:


I wanted to announce that my new blog is set up and ready to go. It is my hope that you treat it as a resource when you are looking for information about vitamins, minerals, supplements, and diet.

Come back often for your curiosity. There will be anywhere from seven to twenty postings per month, as my time allows. They will be dated and numbered.

Although it is a blog for everyone, a lot of it is geared toward those of us with Multiple Sclerosis, Rheumatoid Arthritis, and/or Crohn's Disease - but only as far as vitamins, minerals, supplements, how to read blood test results, and diets.

All of the information on the Vitamin/Supplement blog can be utilized by anyone looking for anything from RDA (Recommended Daily Allowances) to Blood Test Ranges. So as you can see, it is quite a bit of information there.

Please don't let the overwhelming amount of information scare you away. I put a search bar on the blog that can only be used to search that blog. So, I suggest that you use the search bar when you are looking for a particular item or items.

So for example, if you are interested in Recommended Daily Allowance (RDA) of a certain supplement or vitamin, you would type in RDA. Or if you were interested in Lab Test Values or Lab Test Results, you would type that in. All of the postings with those keywords will come up on your screen.

I hope this will inspire you to go check out my new blog. Drop me a note there and let me know you stopped by. Also, if you have an interest in something that is NOT on that blog, please comment so I can research it and then blog about it.

Thank you for your continuing support.


This concludes the 40th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 30, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 28, 2009.

Thank you.
Comments for this post.

Tuesday, July 14, 2009

Sexuality, Intimacy, and MS

The physical changes experienced by people who have multiple sclerosis can alter their view of themselves as sexual beings, as well as their perception of the way others view them. The psychological and cultural context in which physical changes occur can adversely affect self-image, mood, sexual and intimate desire, and the ease or difficulty with which persons with MS communicate with their partners.

One of the notions about sexuality that prevails in Western culture is a “goal-oriented” approach to sex. In this approach, the sexual activity is done with the goal of having penile-vaginal intercourse, ultimately leading to orgasm. The sexual behaviors labeled as foreplay, such as erotic conversations, touching, kissing, and genital stimulation, are seen as steps that inevitably lead to intercourse rather than as physically and emotionally satisfying sexual activities in their own right.

This Western view of sexuality leads to spending a great deal of time and energy worrying about the MS-related barriers to intercourse and orgasm (“the goal”) rather than seizing the opportunity to explore physically and emotionally satisfying alternatives to intercourse. The capacity to discover new and fulfilling ways to compensate for sexual limitations requires that couples be able to let go of preconceived notions of what sex should be and focus instead on openly communicating their sexual needs and pleasures without fear of ridicule or embarrassment.

Read this post in its entirety:

Sexuality, Intimacy, and Multiple Sclerosis

Monday, July 13, 2009

The Cost of Chronic Illness

With the ongoing debate on ways to reform health care, I've been thinking about the routine medical care I receive in a typical year. However, living with multiple sclerosis and rheumatoid arthritis, it is not always easy to know if a particular year is going to be "typical" or not. So I examined exactly what health care services I used in one calendar year. Here is what I found:

I saw the rheumatologist three times during the year since I have routine visits scheduled every four months.
Total charge: $433 - insurance adjustment: $202 = $231
Insurance paid: $176
My copayments: $75

I saw the neurologist (or nurse practitioner) five times during the year. In addition to routine visits scheduled every three to four months, I had two extra visits related to a multiple sclerosis relapse.
Total charge: $1,269 - insurance adjustment: $780 = $489
Insurance paid: $354
My copayments: $125

Rest this post in its entirety:

The Annual Cost of My Chronic Illnesses

Saturday, July 11, 2009

Support Creating a National MS Registry

Ask your Senators and Representative to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273). The legislation, supported by our Congressional MS Caucus and the Bicameral Congressional Caucus on Parkinson's Disease, would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Take Action Today! Click here send an e-mail to your legislators

The National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273) calls for establishing separate, permanent, and coordinated MS and Parkinson's disease registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) using an incremental, science-based approach. The last national study on incidence and prevalence rates on MS was conducted in 1975 - a lot has changed in 34 years. These registries will help determine incidence and prevalence rates and lay a foundation for better evaluating and understanding MS issues such as geographic clusters, variance in gender ratio, changes in health care practices, and changes in disease burden.

The MS and Parkinson's disease registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and results could be used to provide consistency and coordination in addressing treatment of these and other neurological diseases.

(hattip I'm an MS Activist blog)

Friday, July 10, 2009

NMSS Strategic Response Survey

The National MS Society is looking for your input.

"We are in the process of gathering information that will help us understand what needs to happen - and change - to help people affected by MS keep moving their lives forward. This data will help guide the Society’s direction for the next five years."

As the NMSS is working to expand their outreach online, here is your opportunity to have your voice heard. Please consider letting them know what you envision.

www.nationalMSsociety.org/srsurvey

Thursday, July 9, 2009

The Nap Taker

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker

No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

"Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again."

Wednesday, July 8, 2009

Helpful Kitchen Tools

With the intent to improve my diet in recent months, I’ve been spending more time in the kitchen. Trust me, I’m no chef, but I can follow a recipe. I even own a Better Homes and Gardens Cookbook.

Even before my rheumatoid arthritis was diagnosed, I had started purchasing things for the kitchen which would prove to be quite useful. These items help when the hands are sore, swollen, and weak, since they require much less effort to hold and use. Even when the hands are feeling strong, they just make things easier to accomplish.

Read this post in its entirety:

Five Kitchen Tools to Make Cooking Easier

Tuesday, July 7, 2009

More MS-Related Financial Help Available

In my last MS HealthCentral post, I provided a list of places that may be able to help you with financial assistance for your MS medications. But these are not the only costs associated with MS. In addition to pharmaceutical assistance, there are programs available to address other needs as well. The primary organizations which offer assistance specific for MS-related needs include the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America.

Read this post in its entirety:

Financial Assistance for Other MS-Related Needs

Monday, July 6, 2009

A Swing and A Hit for Violinist





A Swing and A Hit for Violinist
Musician Plays Instrument Crafted From Baseball Bat

By Anne Midgette
Washington Post Staff Writer
Saturday, July 4, 2009


"I just decided, 'Well, let's see if I can make one,' " says Glenn Donnellan, a violinist with the National Symphony Orchestra. "I thought it would be cool to say to the kids, 'Hey, you can make your own.' "

The object in question is an electric violin made out of a baseball bat. And the answer is, Yes, he could.

Just in time for the Fourth of July, Donnellan posted to YouTube a video of himself playing the national anthem on his electric baseball-bat-violin. He didn't necessarily mean the clip for wide circulation. He put it up because a friend with contacts in the Washington Nationals front office wanted to show it to his bosses and ask about having Donnellan play the national anthem for a game. But there are no secrets on YouTube. By Friday, the video had racked up a respectable 1,600-plus views, and some enthusiastic comments. "Totally bat-ass!" one viewer wrote.

Donnellan made his bat-violin when the orchestra was preparing to go to Arkansas this spring for the 19th of its annual American residencies, which offer concerts and outreach programs in areas of the country that may not be well served with classical music. He was looking for an instrument to use in a children's concert; he had done the same program in D.C. with more standard electric fiddles, but he had only borrowed those instruments and couldn't take them on tour.

Not everyone might have come up with his solution, which required hours backstage at the Kennedy Center, using the stagehands' drill press to make holes in a baseball bat. "It's tricky to drill a hole in the handle," he observes. "If you use a small enough bit, it wants to drift." He adds, "You'll see how [the bat-violin] is kind of crude at the bottom."

On the contrary, the video is downright elegant -- both for the instrument, narrow and compact, and for the playing, executed with cool aplomb. It's certainly not your typical classical-music approach to the national anthem. There are overtones of Jimi Hendrix in the reverberant electronic sound, though the arrangement is actually Donnellan's own. (The video appears on YouTube as a "video response" to Hendrix, but Donnellan says that was an accident; new to the site, he randomly clicked a lot of different links when his post first went up.)

Donnellan has been with the NSO since 1997; his violinist wife, Jan Chung, frequently plays with the orchestra, too. (They have two children: Adrian, 8, and Katherine, 6.) On his own time, Donnellan tries his hand at fiddling and experimenting with jazz. "Jamming with a guitarist on 'Hotel California' at the California Congressional offices on the Hill, and with kids playing the Blues in Mississippi were some of the most fun and memorable musical experiences I've had," he writes in a follow-up e-mail. "In terms of playing outside the classical box, I think that if you can feel it, you can play it."

The instrument had immediate resonance in Arkansas. Iván Fischer, the NSO's principal conductor, happened to see Donnellan playing it backstage and immediately had to try it out. Now, Fischer wants one of his own. "I just haven't had time to make one," says Donnellan.

Sunday, July 5, 2009

Welcome to the MS Blogging Community

Chris: My Journey with MS by Christina
For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.

DA's MS Mumblings by Dabble
I'm a nurse, writer, painter, vaguely creative soul, former pet owner and optimist. I'm also a person with MS. There are a lot of us out there. Coping with Multiple Sclerosis is never easy - this is my cheery account of how MS has given me a wonderful gift....or alternatively, how MS has #%@^!%%!'d up my life.

The Danielle English Mix by Danielle
In 2002, I was diagnosed with MS at the age of 17. The disease and I finished high school together, earned a Bachelor's degree and we're working toward a master's. I have multiple sclerosis. But what does that mean in the age of Web 2.0? That's what I'm trying to figure out. Welcome to the Danielle English Mix.

Healing Through Multiple Sclerosis by Cathy
The most power is held at the edge of things; as day moves into evening, the seemingly instantaneous arrival of an idea, the moment of conception or the delivery of a diagnosis of Multiple Sclerosis. What was before can never be reclaimed and the road ahead is a mystery. There is the scent of dread as well as adventure. The territory is far from static and infused with the specter of grief and the anticipation of a miracle. How can one not be interested in this landscape?

Playing the MS Card by Jenny
I don't feel good. I was driving home from work last night and this wave of exhaustion came over me where I could barely hold my head up. I'm not exaggerating. It took everything I had to make it home from work. This is the first time I have actually contemplated pulling over and calling my husband to come get me. I can't stand feeling like this. It puts me in such a funk. Has this ever happened to anybody else? Whenever I am this tired for any length of time I seem to get sad or depressed. I don't deal with it very well. I have to work on this. It's awful!

Standup4MS: a story of mobility rehabilitation by Laurence
This might not be glossy but I hope it will enrich some experiences... In January this year, I was pleased with what I had achieved even if I had been told that I would have to use a wheelchair for the rest of my life and that nothing could be done. I was also repeatedly advised not to try standing on my own. I had to try this to see if I was getting any stronger. Standing helped keep my spirits up! I had been given a list of exercises, which I modified to fit with the care assistance I received.

This is my life and all that goes with it by Mike
This is for when I have something to say but nobody to say it to. I suffer from MS and Diabetes as well as an insane addiction to coffee. I am who I am and nothing more. I hope you find something here that interests you and if not then let me know what does and I will see what I can do.

Thoughts from my Broken Brain by lunafemme
What I am experiencing is transitory, simply a moment in time. I do not accept this moment as permanent.

Utterly Bloggered by Grace
My thoughts on life, living with Multiple Sclerosis and everything else. Dive in, take what you like and ignore the rest.



Other links of interest:
A Voice for MS

Medicare vs. Medicaid Hell

MS Research Seeks Help

No Time For MS (which has moved from Blogger to Wordpress)

Vitamins, Minerals, Supplements, Diets - Oh My!!!

Thursday, July 2, 2009

Carnival of MS Bloggers #39

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Honesty, Vision, and Perspective


Here is one of my favorite orange shots. I took it in 2007. it was one of my first macro shots that captured what my eyes and brain were seeing.

I loved the powder laying there, the pollen, ready to perpetuate the species.

I have always been fond of bright colors. Orange is one of those colors that I can not wear – it makes me look jaundice, as do browns, and yellows.

Noticing the little things, the small details that many pass by, comes naturally to me. I miss being able to hike somewhere and find the little hidden gems. Colorful moss on a rock, rusty old nails along a shore where a town used to thrive, and birds resting after flight.

Sometimes it really pisses me off when other bloggers with MS write about all the cool things they are doing. I get jealous. Then again the MS Societies pamphlets, videos, etc. usually show young, good looking people that relay a positive outtake – good PR? Trying to keep us positive?

I am not so positive about my vision doing wonky things. I hope sometime this summer my eyes will be clear and my balance and legs muscles will allow me to get out and snap some shots. My camera has the fully automatic mode but it just kills me to dumb down and use it.

I had a dream the other night were the orange flowers were turning into the orange logo’s of MS. I woke up thinking how crappy that was. There I was hiking up a hill and every time my lens was focused on the poppies they turned into out of focus MS logos! How suck-o is that??


Finding the Muse
by Nadja

I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--

I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.

It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine

Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.

I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes

Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.

I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--


Choosing Our Perspective 
by Michael of Perspective is Everything

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.


This concludes the 39th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 16, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 14, 2009.

Thank you.
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