A Blood Test for MS

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CORRECTION:  This test is not in the oversight of FDA as I originally wrote on 12.6.17. The corrected version follows, with my correction in bold type face.  Apologies to everyone for my error.  – Laura   12.13.17

Do you have MS?  Then you most likely underwent all the necessary testing for your diagnosis.  The tests were pretty simple, right?

Clinical exam? Check.

Blood test?  Check.

Personal history? Check!

MRI’s?  Of course, check!

Lumbar puncture (aka spinal tap)? Unfortunately most of us had to check off that test as well and is the one MS test that is definitely not simple or stress free.  Just the name alone conjures up images of torture involving needles.

The LP is used to check of o-bands in the blood serum that indicate a demyelinating process stripping the myelin in our central nervous system.  And until now, it has been the only biological test used to support a diagnosis of MS.  Even with the LP and a positive reading, it was only 80% positive for MS

Now there is another way to get this important confirmation and although it still involves needles, they are much smaller and just used for a simple blood draw instead of a spinal tap.

A Small Company with Big Potential

iQuity, a young biotech company in Nashville, has FDA approval for a blood test that indicates MS.  It’s still pretty much unknown in the clinical world, but their work is so solid they secured a major funding grant from the National Institute of Health (NIH) this year. We would expect this test to be adopted quickly, to replace the LP, especially since it has been shown to be >92% accurate, compared to the 80% rate for testing the spinal fluid.  But that isn’t happening yet.

Payers, the insurance companies and even the federal insurers like Medicaid and TriCare, do not reimburse for this test, even though it is approved as a Laboratory Developed Test (LDT). LDTs are overseen by the Clinicial Laboratory Improvement Acts (CLIA), and are governed by the Centers for Medicare and Medicaid Services.

That’s discouraging to know something like this simple blood test that would be more patient friendly AND accurate than the lumbar puncture is not being widely used because of the cost.

Outreach to Bloggers

iQuity hosted a one-day conference in Nashville for key opinion leaders in the MS community, and I had the honor of attending along with some of the best names in the MS blogging world. Disclosure:  iQuity paid for our travel, hotel and incidental expenses, and spent the day sharing their access to MS experts with us.

Amazing group of MS Bloggers who were with me in Nashville

We heard about the importance of MS physical therapy from Jennifer Meyer, PT, DPT, NCS,Vanderbilt University Medical Center.  This reinforcement of why we need to do more physically, whatever that may look like for the individual, is always good.

Dr. Ram Sriram, Professor of Neurology and Immunology Head of the Neuroimmunology Division, also Vanderbilt, shared his latest studies  involving remyelination, which by the way seems to be helped by exercise.

The day concluded with Dr. Daniel Kantor sharing his tips on successful use of social media to disseminate information back to the people in our community.  The full day program was informative and insightful and as always, I learned new things.

IsolateMS one of Three  IQ Tests

But the most informative part of the program was being able to talk with Chase Spurlock, PhD, CEO of iQuity, and ask him questions about their IsolateMS test, and IQ Isolate autoimmune disease diagnostic tests. Dr. Spurlock is a young man in the research world, compared to the usual researchers who have spent decades in a laboratory.  He has his Ph.D., in Microbiology and Immunology from Vanderbilt University, Nashville, Tennessee and is a research instructor on their faculty.

I’ve come to know iQuity and the work being done by Chase and his co-researchers via the Accelerated Cure Project and iConquerMS. His laboratory benchwork used biological samples from ACP’s repository program. I first met Dr. Spurlock at an MS neurology conference two years ago, before IQ Isolate was approved by the FDA.

I won’t pretend that I understand all the science involved in this test that looks at our DNA and the RNA in our blood, and compares it to an algorithm that has been proven to demonstrate MS, and instead focus on his enthusiasm for this test and the 92% accuracy rate, Both of those are good markers to me that  IsolateMS is groundbreaking.

IQuity CEO Chase Spurlock, front right, with MS bloggers in Nashville. Photo by Caroline Craven, GirlWithMS.com

Out-of-Pocket Cost a Challenge

IsolateMS can possibly save months and even years of time for people who are ill but can’t get a sure answer that it’s MS through the diagnostic methods used now.  And we all know the faster a diagnosis can be made, the better the odds are that permanent disability can be delayed or even stopped through the use of disease modifying therapies.

In addition to IsolateMS, they also have Isolate IBD & IBS, and Isolate Fibromyalgia tests ready for the market.

Despite all these good things, don’t expect to see IQ Isolate tests in common use until insurance payers agree to cover the cost. The $1,000 cost for the test is often an expenditure many people can’t make. iQuity has worked out a payment plan through PayPal, trying to assist as best as they can. Now it’s a matter of getting the word out to doctors and patients that there is another option to the lumbar puncture.

 Wishing you well,

Laura

Drew the Short Straw

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This week is the annual ECTRIMS meetings. The European Committee for Treatment and Research in MS is the premiere research event for multiple sclerosis.  I talked about going but didn’t make much effort to find support to attend, even though it is being held in Paris. It would have been nice to stroll around that lovely city, but wasn’t meant to be.

It is also the week for the American Congress for Rehabilitation Medicine, a conference that was amazing to attend last year in Chicago.  This year they are meeting in Atlanta, and I had a hotel room booked for the last six months.  Our plans to have a panel presentation on iConquerMS at ACRM didn’t materialize, and I cancelled my travel plans for Atlanta.  I always like to visit the Peach state capital, but I had another option.

Several times a year the PCORnet principal investigators (PI) and co-PIs meet in Washington, and instead of Paris or Atlanta, I had a nice room and airline ticket for Washington DC. This would have been my time to hear from other PIs of the various networks that comprise PCORnet. The work of iConquerMS is ongoing and gathering with the other network representatives is useful in many ways.

But I’m not in DC, either.

Why not?  I wrenched my back somehow on Thursday, and I was unable to stand upright until my chiropractor fixed me late Friday. I’m still sore, and saw the doctor again today for another manipulation and realignment.  I’m feeling better, but am still quite sore and achy.  On the advice of the chiropractor, I did the responsible thing and stayed home from DC.

So I’m sitting at home, thankful that I wasn’t in Paris, Atlanta, or DC when my back problem struck. This could have been much worse if I were stranded somewhere and injured and unable to move about without pain. But I still can’t help but think I drew the short straw and have been left behind in Ohio.

On the plus side, I can use this quiet time to write  for my blog and other outlets, and plan my next trip. Hopefully that will come off better.

 

 

 

 

 

Pacing for the Cure and Multiple Sclerosis

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What does harness racing and multiple sclerosis have in common? Quite a lot if you are in the Columbus, Ohio, area on Saturday, July 15.  That’s when Pacing for the Cure (PFTC) visits the racetrack at Scioto Downs with a special event with the theme of harness racing. And before I forget to mention it, harness racing is a family event and children are always welcome at Scioto Downs or most other tracks around the country.  An added bonus is the food in the concession stands is always priced at family friendly prices (hotdogs at Scioto are $2 and a bratwurst is $2.50).

 

For a donation of $10 you can join others for a special walk for MS – you can go around the 5/8 mile  track by foot.  You can also meet the drivers and some of the horses as well as participate in a min-session on harness racing. The track area is normally off limits to spectators and the drivers almost always keep to themselves behind the scenes so this really is a special opportunity to be up close and personal.

Pacing for the Cure is also offering a $25 level, which gets you everything at the $10 level plus a $15 credit to use at the Patio for food (reservations strongly suggested).  The top donation of $40 gets all of the #10 benefits PLUS a $30 credit for food in the Clubhouse restaurant (reservations are required). The organizers will also have items to raffle/auction at the event, including a hotel stay and a signed jersey from Sergei Bobrovsky, goalie for the Columbus Bluejackets NHL team.

 

 

The is the 2nd year Scioto Downs has worked with PFTC and last year was also the organization’s second year during which they have quickly formed a network of tracks, owners, trainers and drivers to support multiple sclerosis.  PFTC is a registered non-profit organization, and money raised is split between research and helping individuals with MS medical costs or mobility equipment like scooters or wheelchairs.

The registration page is a bit awkward/difficult to find on their site, so here is a quick link to register – on this page  Scioto Downs Pacing for the Cure. select the DONATE button

 

To register click on the DONATE button you will find on the page http://www.pacingforthecure.org/donations/

Who is Pacing for the Cure?

PTFC was started by Janine and Jeff, who both have close relatives with MS, Jeff’s dad, Bill G has been living with MS for 30 years and Janine’s sister  is more recently diagnosed.  Janine and Jeff both work in healthcare and are well familiar with MS and the strain it can put on family and resources.  They have always been a horse loving family and dabbled a bit in racing horses.

When Jeff saw an upcoming sale with a horse named Mr. Bill G. he knew immediately he wanted that horse.   “We have a good race horse, we don’t need a lot of them to have fun and one is enough.  He has a nice personality.  We’ve had a trainer look at him and we are starting training him now,” said Jeff about Mr. Bill G the horse, but I imagine they also say equally nice things about the first Mr. Bill G.

One thing led to another and Jeff and Janine thought the harness racing community might be supportive of MS causes, and they haven’t been disappointed.  Drivers across the country are donating $1 to PFTC each time they win a race, which can add up to a lot of money over the racing season. PFTC hosted a dinner gala at the Harrisburg yearling auction, and has held other events.  Breeders, owners and drivers are helping grow the PFTC network.  You can find out more about this organization on their website Pacing for the Cure.

This is their second walk for MS this year – the first was at the Meadowlands, East Rutherford, New Jersey, and had over 100 people walk the racetrack.  PFTC also plans to host midwest MS events at Red Mile, Lexington, Kentucky, and Hoosier Park, Anderson, Indiana. Jeff said they plan to go everywhere they can in the US to grow Pacing for the Cure. With the help of the entire harness racing community which is demonstrating real excitement toward being involved for MS, Jeff says PFTC “has already grown beyond belief and our expectations.”

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On a personal note, our daughter Kristin is very much into harness racing, and has started her own blog Pony Power Plus where she shares insights on the horses, drivers and handicapping a race. Be sure to check out her story on Pacing for the Cure and her other articles.  If you come to Scioto Downs on July 15, be sure to look for me around the registration area and introduce yourself.

HealtheVoices ’17: Together We’re Better

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Over 100 health advocates gathered recently in Chicago for HealtheVoices17, a conference sponsored by Janssen US, a division of Johnson and Johnson.  Through a competitive process, each of us submitted our application and a video or blog, talking about what we hoped to gain by being with this group.

The MS group, minus Nicole Lemelle.

It is worth noting that Janssen does not have a presence in the multiple sclerosis market, yet there were five MS bloggers in attendance and it’s always great to spend time with Lisa Dasis, Yvonne Desousa, Nicole Lemelle, and Dave Bexfield.  It was an open event, and although there were many people who benefit from the work of Janssen, there are a good number of us who didn’t have a direct connection to their pharmaceutical pipeline.

 

Why Attend?

For me it was quite simple – I live and write in the world of multiple sclerosis, and I know that many people who have MS also have other conditions, also known as comorbidities.  I hoped that I could learn more and discover ways to bridge our conversations to include these other health concerns. I was also hoping to find new ways to relay my message that might better resonate with others.

Who is Nicole Lemelle with now? It’s Yvonne Desousa and me!

HealtheVoices17 focused on giving us the tools to better connect our messages into our communities and beyond. There were professional presentations from YouTube, Facebook, and some big name health information websites, as well as talks from fellow advocates. I am pretty much stuck on my relationship with my computer keyboard and the ‘printed word’ of blogging, but I now know that many of you would prefer to see a video or animation to tell my story. I may give it a try, and have even bought a few little pieces of support equipment needed to do this easier, but I am still very much a fan of the written word.

There was plenty of time during meals and breaks to talk with others and learn more. High level executives from Janssen and J&J attended the sessions and meals, and appeared sincere in their questions about who we are and what we do. Janssen has a large presence in treating Types I and II diabetes, HIV, psoriasis and inflammatory bowel disease, so many of the people at HealtheVoices17 were representing those communities.

Johnson & Johnson is so committed to helping us with advocacy needs, a donation of $30,000 was made to the HealtheVoices Impact Fund, a newly formed foundation.  You don’t have to be a HeatheVoice participant to apply for these funds but you do have to be speedy because the deadline is coming up soon (June15).

We’re More Alike Than Different

The labels of our diseases quickly fell to the side and we slipped into just being a group of dedicated healthcare advocates, as opposed to a person with MS, psoriasis, prostate cancer, mental health or any of the many other conditions represented. One theme that quickly became clear is these are passionate people who do this because they genuinely care and believe they can make a difference. I know I am passionate and would be disappointed to think that no one has been helped by my words.

Who else met Nicole? Why it’s ActiveMSer Dave Bexfield.

The idea of an ‘all expense paid’ trip to Chicago might sound glamorous, but it is physically demanding and means more time away from our homes and family.  We went because we care and we want to try harder and do better for the people we connect with regularly. Part of that requires us to not be content with what we are doing now, but to grow, and the HealtheVoices17 conference was the perfect atmosphere, supported by people who are on the same journey. Note: all of my expenses were paid by Janssen US, but all of the ideas and opinions here and elsewhere are always my own and at now time have they suggested any editorial content to write about.

Advocacy Challenges

I gained renewed enthusiasm and fresh ideas to put into practice for my ‘work’ in healthcare advocacy but making these new connections, sharing stories of our success and challenges, was the best pay out of all. In case you don’t already know this – being an advocate while dealing with our own personal health challenges is a tough task at times.  It is mentally demanding and often physically exhausting.  There is a great need for accurate information and shared experiences, and as advocates we work continuously to connect with our communities.  It is often a thankless task, there aren’t enough awards or recognition given for this devotion of service to others.  HealtheVoices17 was an acknowledgment and a small way to give back to my advocacy peers.

A composite view of 105 passionate advocates at opening session

 

I learned more about the sponsor – Johnson & Johnson has a long history in American healthcare.  I celebrated the success stories of the amazing advocates who were in attendance. And I came away with a renewed passion to speak up and reach out for my community. Gatherings like HealtheVoices17 that focus on empowering advocates with tools, resources and connections without asking for anything in return are rare, and I am truly honored to have been chosen to attend.

Be well,

Laura

 

PS – there have been some great things written about this conference, and I share just a few links here – I hope you will take the time to read about their experiences as well.

Dave BexfieldCollective Voices, Dropping the Mic

 Robert Oliver:   ATTENDING #HEALTHEVOICES2017: A CONFERENCE LIKE NO OTHER.

Luke EscombeNo-one wants to hear you talk about your chronic illness” – what I learned at HealthEvoices 2017

Howard Change: My Surprising Takeaways from the HealtheVoices Conference

Yvonne DeSousaHealthe Voice Abound

Smart Patients & iConquerMS™ Collaboration

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The people in the MS community are some of the smartest patients around – we read, we research, and we study multiple sclerosis.  And quite often we do something even more special – we share what we know and how our lives with MS are going to help others.

Finding a secure and safe place for sharing about our healthcare experiences and questions isn’t always easy or simple. For some of us, it might be in a local support group, or one-on-one conversations by phone or email.  But many of us want to connect with more people and that is why I am so excited to share
our new partnership
between Smart Patients and iConquerMS™.

Unlike so many other online forums, the Smart Patients Multiple Sclerosis Community is protected from the internet trolls who create chaos, and data mining is blocked with the most stringent methods. This means companies who are constantly researching MS in the background by gathering analytics in patient discussion groups cannot access our conversations. I love the Smart Patients model that ensures
the site is for patients and our loved ones. Period.  Researchers, clinicians and others won’t be members of our community and we can feel free to share what we want.  It is not possible for outsiders to come into the community and read our posts – you have to be a member to view the conversation and that function is closely controlled by our partners at SmartPatients.


Some of our best ideas come when we work through situations and problems with input from others.

 

Smart Patients is a secure, safe online community where people with common interests in multiple sclerosis are meeting up, having conversations, sharing ideas.  Peer support is powerful, and can give us the emotional strength to face the challenges of MS.

Aside from providing peer support, the online MS patient community can also discuss topics, trends and ideas for iConquerMS research. The patient journey is an important step in identifying ideas that improve care and quality of life for MS patients and their families. Roni Zeiger, Smart Patients founder and CEO says, “The magic happens when we put data in the context of conversations. This helps patients learn from each other and can help all of us learn what research questions matter the most.”

Smart Patients is an exclusive closed group, and you must either have MS, or be a family member or loved one affected by MS personally to join Smart Patients

You don’t have to be a member of iConquerMS to be part of the Smart Patients MS Community, but I hope you will want to be a part of both.

 

There are two ways to get to the Smart Patients MS community –

  1. Sign-up for Smart Patients MS community through iConquerMS .
  2. You can also get to this exciting new forum directly from the web via https://www.smartpatients.com/iconquerms

No matter how you get to the Smart Patients Multiple Sclerosis Community, you will find a vital  and growing community discussing  life with MS and ways we can make our lives better. I hope you’ll join me in deeper and richer conversation about life with MS at Smart Patients.

be well,

Laura

 

Your input needed for talk!

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Want to help envision the perfect world of MS Comprehensive Care and share that message with the largest gathering of MS clinicians in the US? The Consortium for MS Centers Annual meeting is coming in May and we have a unique opportunity to share our ideas about MS Care via one of the presenters.

Copy these questions, and send them with your reply to MSCenterCare@gmail.com.  That is an email address I set up to receive responses. I will not be sharing your personal information with the person giving the talk.

 

Your name (only first name will be use!)

Your state (or country)

Photo (if you are willing) – make sure it is a high quality resolution pic because when I say big screen, I mean BIG screen

Is your  MS doctor in a comprehensive clinic setting?

Doctor’s name if you are willing to share – this will NOT Be a part of the presentation

What would your ideal MS Comprehensive Center offer/In a perfect world, what would your MS clinic look like?

Are the services  you need available to you in your MS clinic  or do you have to travel to other places?

If parent of small children, how difficult is it to arrange childcare for your medical visits ?

Are support groups or other meetings held at your clinic?

Does your clinic have a way to find out what patients think, such as an advisory board? Would that be useful to your clinic?

Any other ideas you want to share….. bring it on!

 

This is our chance to be heard!!

be well,

Laura

 

Free iConquerMS™ T-Shirts!

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Want a free iConquerMS T-shirt?

It’s simple and easy….

If you join iConquerMS before Friday, April 14, we will send you an iConquerMS  t-shirt for free. We will even pay the postage to anywhere in the US.

iConquerMS™ is facing a deadline for enrolling people in our online registry of people affected by MS, (and their friends and family as controls)  and we need you to join us today.

You’ve already joined iConquerMS but still want a shirt? 

Recruit one other person to join iConquerMS and when they join….

We will send you and them an iConquerMS t-shirt! There is a spot in the registration where people can tell us how they heard about iConquerMS and they can put your name in that space to make sure you get your free t-shirt. This means we will pay the postage twice!

 

How can you get your own free iConquerMS t-shirt?

Go to  www.iconquerms.org and click on the button that says JOIN NOW and follow the prompts. 

You can learn more while there about who we are and how your health information will help advance MS research for the people who matter most – you and me!!

Claim your free iConquerMS t-shirt today and help us conquer MS!

Thanks,

Laura

PS – Be sure to share this link with others!

Karma and so much more

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It has been such a rough year and there have been way too few occasions to celebrate in 2016. We were quietly observing our wedding anniversary tonight and in the almost deserted mom and pop Italian restaurant there was eventually only two other diners, a young couple who were obviously beginning their own slow waltz. He had the look of a hard life already worn into him and it was hard to tell about her because she had her slouch hat pulled far down on her head and was seated with her back to us. We exchanged words and as the conversation unfolded he expectantly told us they were heading to NYC for the ball drop at New Year’s in Times Square and peppered my husband with questions about the drive to New York.  We eventually shared that we were celebrating our own anniversary of 43 years, compared to their one month celebration.

We also heard more about other details in his obviously hard life, most made by himself but others by the misfortune of poor luck and genetics. In the midst of his story was the revelation he had cared for both his mother and his sister who were in wheelchairs for years due to a degenerative genetic muscle wasting disease but were now deceased. There was no mention of our own questionable health in the conversation and our canes were well hidden under the table.

It was clear from his words that he was doing his best to turn the corner and his life around. A short while later as we were finishing our meal and the server had dropped our bill on our table, he got up and approached our table and put down two crumpled twenty dollar bills and stated they wanted to treat us to our anniversary dinner. We protested, but he said he wanted to make it a deposit on good karma for their own future. I had to tell him sorry, but he would need to take back his money and use it in Times Square to buy chestnuts, pretzels and a deli corned beef sandwich, and then made them promise to give each other a kiss at the stroke of midnight in our honor. Reluctantly he agreed to the money return, and we left wishing each other a happy new year.

As we paid our bill at the register, a quaint checkout custom of this particular spot, my husband and I looked at each other and immediately knew what to do – we put down a deposit on our own good karma and paid their bill in addition to our own, and then we walked out the door with a smile on our faces. May you all find someone to celebrate with as we move into this next year, and find ways to bring good karma to us all.

Life and MS- A Worthy Website

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Upfront I want to confess the internet can consume so much of my time when I start looking for ‘something’ and find lots of ‘somethings’ to view.  Often that time is just wasted but sometimes I come across a gem.  Today I found such a site that I’m excited to share because it has some content I have not found elsewhere.  I came across this site because I was looking for stretching exercises for my hip abductor muscles and they have a large number of exercises posted, all of which are much like what I have done in physical therapy. They have short videos and also photo illustrated exercises that are appropriate for those of us with MS.

It is not often that I find a website produced by a pharmaceutical company that makes me excited enough to share it with my readers, but http://www.lifeandms.com is different. It took me only a few moments to find and research the company behind this site – it is Almirall, the pharmaceutical company that markets Sativex, a compound made from cannabinoids, that is used to treat spasticity.  Sativex is widely available in Europe, Asia and elsewhere in the world, but is not licensed by the FDA for sale in the US.  As best as I can tell they are situated in Spain, but the website is in easy to understand English.

Sativex is found to be effective in relieving the symptoms of spasticity, and Almirall has dedicated much of their MS information on the website to this common symptom, which they say affects 82% of us but they add that in 50% of the people it is a mild symptom. Their site has a simulator to allow people to better understand what spasticity is and how it affects so many of us with multiple sclerosis, through the use of a simple drawing challenge where you can select the level of spasticity to affect your ability to complete the task.

Interestingly, there is no mention about their product Sativex, cannabinoids or medical marijuana anywhere on the website.  I don’t know if that is because advertising by pharma laws are different in  Europe, or if they just chose to be commercial free. Either way, there is just lots of very good, useful information about living with MS and simple exercises that most everyone could do even if you don’t have this disease.  I hope you will take some time to browse their pages and let me know if you find it useful

 

 

 

 

 

Post-Election Reflection

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Note – this is not my usual multiple sclerosis commentary blog but something even more important for me to weigh in on. Also, I have disabled comments on this page because I just need to get this out of my head and not turn it into a debate.

 

Leading up to election day I had a feeling this was going to turn out differently than I and so many others had hoped for.  Don’t paint me as just a bad loser. I have backed presidential losers before, starting with the first campaign I worked for before I was even old enough to cast my own vote.  I learned that standing in front of a polling place campaigning for George McGovern was a cold, lonely spot, but I never felt afraid or even hesitant to voice my support.  My yard sign for Kerry/Edwards still hangs in my garage and at least half of that duo would have been great in office.  I’ve always tried to listen to the views of others and have hoped the same would be offered to me.

Fast forward to now and I’m still processing – so much has happened this year, and all of it resonates as deeply personal. I’ve refrained from talking or writing much about our presidential election results.  Instead, I have been reading both the positive and negative reactions of others, some who are strangers and others are people I know well.  I’ve given the occasional thumbs up on Facebook or skipped commenting at all when I disagreed.  I have not ‘unfriended’ a singled person because I’m trying to make sense of it all, as I’m sure so many others are.  What I know that I already “don’t get’ is when it became acceptable to toss out civility and speak our minds in the most hatred and ugly ways, proclaiming it is a right under our constitution without understanding that this right also comes with the responsibility and accountability to the laws of a free nation.  When did we stop listening to others?

I’ll make no apologies that I did not and would not vote for the man who has now been named our next president.  His and his representatives’ words of hate fired toward minorities, women, non-Christians, LGTBQ community members and so many more,  turned me off from whatever message he might have had about being different and draining the swamp. The fact that these were not occasional missiles fired to provoke his followers into action but a constant barrage that began much earlier this year, should not and cannot be glossed over by his promise of reconciliation.

I don’t understand the people who voted for him when they know that I and so many others  including their own family are members of the disability community he felt necessary to mock, they have family members  who are bi-racial, or those with grandchildren who have a parent from those other countries which we will now build a wall to protect ourselves from.  Nor do I get it when I look at the fathers and mothers of adolescent girls and think it is ok to make a man who claims the privilege of being able to grope and belittle women, their president. I don’t understand how a candidate can select a running mate who not only wants to live out his own extreme evangelical religious beliefs, but has proclaimed that his religion is the one that must be the rule of our land.  When we vote, not only is it our vote we cast for the present,  but we are also doing it for the future of this country, and to have overlooked these flaws is a serious shortsightedness that cannot be corrected regardless of what lenses we might view this through.

I understand this country is hurting and struggling – we have trillions of debt to figure out mainly thanks to waging wars started over a decade ago that seem improbable to win against enemies that are constantly shifting their shape.  We have a crisis at home with the people who have fled here from other countries, escaping conditions that few of us can imagine whether they come from war torn countries across the ocean or the poverty just south of us in Central and South America. Perhaps I don’t get angry when I think about these people wanting to be here because I deeply appreciate the good fortune and luck of having been born an American. Who can blame them for wanting to be a part of this country which proudly proclaims to the world our unique concept of liberty and has always welcomed the huddled masses.

I also recognize the genetic pool that had me come from my mother’s womb as a white person determines my life opportunities much differently than had one or both of my parents been a person of color. The argument that we all have the same opportunities is blatantly false, and is quickly proven with a few moments of research if you genuinely wish to know more and understand the inherent racism we live with.  I was hoping we were making progress toward equality, but too many events over this past year or so show we are still so far from that goal we might not even be able to view the end zone.

Just because I am white does not mean that my way is the best way or the only way, but it appears the person who will have the most influence on our next president does believe that, as evidenced by his publications which support and allows white supremacist views to go unchallenged.  I am sickened by the thought that the head of the KKK is applauding this appointment, but even more horrified that this is acceptable to the people who voted for this next president.  If you exercised your vote to elect this man, you can also exercise your voice to say this is not what you thought you voted for and speak up now.  Hold our next president accountable to a higher standard.

The White House on Pennsylvania Avenue has been good enough for everyone since president #2 and is equipped to handle all contingencies and is conveniently located to meet with members of the legislative bodies.  Personally I would be delighted to live in the White House year round and I hope the next president chooses that as well because if he sticks with his idea to jet back and forth to his NYC penthouse, the gridlock on the streets and in the air in both cities will become unbearable and costly. All joking aside, it would probably be cheaper to remodel the White House and gild every throne in gold than have a president who has just a part-time residence in Washington DC. The tab for providing staff and security appropriate for the leader of the free world will rise each time he transfers locations and his campaign promise to reduce tax spending should start with his own living choices.

An acquaintance in the MS community is an award winning photographer of wildlife and spends hours in the bushes waiting for just the right shot of her beloved shore birds.  Her work is stunning and beautiful, and requires inordinate amounts of patience, but the hatred toward the losing candidate that she continues to spew through her FB posts tarnishes all that she does and is what finally moved me to write this today, one week post-election. For whatever reason, she can’t turn off the public display and hasn’t even tried to tone down her words.  Moving forward is impossible it we continue to hold onto the past as she continues to do.  I’m hoping that whatever candidate you voted for, you will find a way to move forward to improve the snapshot of today and not indulge in hate.   Our country deserves better.  We deserve better for each other and especially for our children and our grandchildren.

Yes, I know this is a simplistic view but it is at least a start for me to try to wrap my head around all the contradictions of this election where people who I know are good people made a choice I strongly disagree with.  I wish I could turn back the clock to a more innocent time of standing on the corner inviting people to vote for McGovern – maybe we could get it right if we had a second go at it.

Peace,

Laura