Sunday, September 14, 2014

Time to "Weigh In" on the MS Diet Discussion

The MS Connection Blog recently posted from 2014 Joint ACTRIMS-ECTRIMS conference about a lecture that certain diets have shown to make no difference when it comes to developing MS.  Go to their post at "Is diet a risk factor for MS

Now that an MS diet has risen to the attention of such a large collection of Multiple Sclerosis experts from all over the world, I decided to share my thoughts.

Over the years, I've listened to people insisting that there must be a diet (way of eating) for MS.  I have heard people claim that they've cured their MS or significantly reduced their symptoms (no longer need a wheelchair, can see again, tingling gone, e.g.) by adopting certain eating habits.  I find it interesting, but ignore most of it.  Here's why:

In 1986, before I was diagnosed with MS, I had an attack of severe vertigo and dizziness.  After about two months without changing my eating habits, I recovered.  An unfortunate side effect, though, was constant fatigue and a
tremor.  Someone that I trusted with a medical background told me that I must have chronic low-blood sugar (LBS), which is often triggered from trauma such as an extended illness.  Having no access to broader research sources (the internet was still developing and not yet in homes), I believed this person.

The LBS treatment was a high-protein, low-carbohydrate diet. Although low blood sugar was never diagnosed in me, I found a book by a man who explained how he cured his fatigue with this diet. He explained that doctors don't understand LBS and there's no good test for it. Being so tired and trying to work full-time, I grasped at anything.


So for years, I ate a snack every two hours composed of foods low in sugar, no added sugar, minimal bread products (low gluten), high protein, low carbs. Things seem to be okay, but I would get episodes of severe fatigue and insist that my blood sugar had dropped and I needed to get food.  The right food.  I'd feel fatigue wash over me at times, and criticize myself for not eating correctly. 

So I added high-doses of vitamin B-12 (under a physician's guidance).  Other people swore that it helped their fatigue, but it didn't help mine.  

I added exercise, long walks, ballroom dancing.  Other people swore that it helped their fatigue, but it didn't help mine.

In the following years, I experienced episodes of blindness, pins-and-needles from the waist down, severe muscle spasms.  All cleared up within two months.

Then I was diagnosed with MS.  

In hindsight, I now know that my fatigue episodes were not caused by eating the wrong foods. With improved testing, I now know that I do not have low blood sugar. Now I try to eat a healthy diet using the Mayo Clinic's guidelines, and manage fatigue with energy conservation techniques, mindfulness meditation, and naps. I exercise in small, energy-conserving chunks. I avoid energy vampires (people who suck the energy out of me) and noisy crowds.    
"Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS."
We each experience MS differently. Each person has different symptoms, reacts differently to the disease modifying drugs.  Relapses come and go in different ways.  Healthy diets come in all shapes and sizes (plate or pyramid). Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS.  But I am one person, and I react one way.  If a certain diet or pill works for you, stick with it.  But don't be surprised if it doesn't work the same for me.

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Read about my long road to diagnosis here

Friday, July 4, 2014

Happy Independence Day!


On this fourth of July, 2014, I'm sending up a flare of hope that we will soon declare independence from Multiple Sclerosis.  Be safe and well this holiday!

Sunday, June 15, 2014

And They're Off!

Fledgling Eastern Bluebird
The Eastern Bluebirds began leaving the nest box one-by-one this morning.  

It takes a lot of courage to leave the warmth and protection of the home where you were born, then to squeeze out of a tiny hole and leap into the brightness and hope instinct kicks in and you fly into the big world.  

We are still talking about the Bluebirds, right?  

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Saturday, June 14, 2014

Fledge Watch

Although I don't blog much (I'll probably post the reason why in the future), I still remember that some of you love the bird posts.  Status update:
Mama and Papa watching over the nest



We have five baby Eastern Bluebirds in our backyard nestbox about to fledge.  Just like any grandparent (or so I've been told), I love to show off baby pictures.  These photos were obtained carefully, using the protocols outlined in Cornell's Nestwatch Citizen Science Project, which is why they are a little fuzzy.  I didn't stay long enough to ensure focus or composition, just wanted to check the status of the birds as quickly as I could with little disturbance.

Beautiful eggs, May 23
New hatchlings June 1

Fuzzy, napping things on June 9




They should be ready to leave the nest in the next few days.

Of course once they leave, they never write, never call, never come back to visit, they just go out into the world without looking back.

Good for them!




Friday, May 30, 2014

Thank You, Healthline, For Selecting Mine as One of the Best MS Blogs for 2014

The Best MS Blogs of 2014
Healthline

Thank you, Healthline.com, for selecting A Short in the Cord as one of the Best MS Blogs of 2014.  

I'm flattered by the description:
"Joan Wheeler is the woman behind A Short in the Cord. She was diagnosed with MS 27 years ago, and her blog chronicles her experiences with relapsing-remitting MS. Wheeler recognizes the challenges that come with living with MS, but also maintains that staying active and aware is key to health.
Wheeler is a disability awareness advocate, and she’s captain of the MS Walk Team Wheeler’s Wobblers. Their tagline is “Wheelers wobble but don’t fall down, thanks to your support.” Wheeler has contributed to the MS community for a long time, and her posts are worth a read."
 There are a lot of good options, and I'm honored that my blog was one of the chosen. This year, they have selected more blogs, many from new bloggers, and they are all worth a look. Be sure to check out these other great blogs at http://www.healthline.com/health-slideshow/best-multiple-sclerosis-blogs

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Wednesday, May 21, 2014

Final Results from Wheeler's Wobblers MS Walks

Anne raised over $500!

The results are in:  Between two walks, one in Wilmington and one in Newark, the 2014 Wheeler's Wobblers MS Walk Team raised $12, 247.63! Way to wobble!

For our sixth year, we had 40 walkers, 3 babies, 3 children, and 1 dog.  We had teammates from Delaware, Pennsylvania, and Maryland, including Pittsburgh and Baltimore.

The Pittsburgh Connection - Sonia's family
The Baltimore Connection - Tedd's family (my step-daughters)



Some walked...
...some rolled
...some were pushed


... and some slept.

Rev. Andrew with 3-week old Micah
Susan and Ginger

We had three teammates with MS, one with ataxia, one minister still on paternity leave, and

politicians who are working in government to make our lives better.
Teammate Congressman Earl Jacques, Joan, and US Senator Chris Coons.  I'm glad I voted for these guys!
With Congressman Paul Baumbach



In Newark, we had our own neighborhood cheering section...
Newark neighborhood

Sophie cheering us on.












...and one fighting Blue Hen mascot.  
Newark Team with YoUDee 

Thank you to everyone who came out, who donated, and who cheered.  We don't fall down thanks to your support!  And now for our official team photos:

Wilmington Team

Newark Team


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Wednesday, April 30, 2014

A Wobblers' Encore This Saturday, May 3, in Newark, Delaware

The MS Walk in Wilmington (Delaware) a few weeks ago was so much fun, some of us decided to do it again in Newark this Saturday, 3 May.  You are invited to join us for a leisurely stroll through some of Newark's neighborhoods and parks for a good cause during the Newark MS Walk.

Start: Buffalo Wild Wings
100 South College Avenue (previously known as Elkton Road)
Registration begins inside Buffalo Wild Wings at 9:00
Walk starts at 10:00 am 

Because we are a smaller group (last year's team photo is shown on the right), the Wobblers won't have a big sign, tent, or registration table like we did in Wilmington.  Go to the normal registration area to check in, and be sure your registration form says you are with the Wheeler's Wobblers.  And don't forget your team t-shirt.

To register or donate, go to our team's Newark walk page:
http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?team_id=392648&pg=team&fr_id=23384

Wobble on!

Saturday, April 19, 2014

We Don't Fall Down Because of Your Support

Wheeler's Wobblers MS Walk Team report from the MS Walk Wilmington, 12 April 2014:

The weather was beautiful for a stroll along the Wilmington Riverfront, and there were lots of smiling people.  The Wheeler's Wobblers team had about 30 walkers, and raised a new team high of $10,437!



Our team motto is "Wheeler's Wobble but we don't fall down, thanks to your support," and this year we had a lot of support from people like you.  THANK YOU!

This money goes toward important research for finding a reason for the disease (and then a cure), improved disease modifying therapies, and programs to help people with the disease.  I look forward to the day when these fundraising walks will no longer be necessary.  But in the meantime, we will continue to wobble on.

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Monday, March 24, 2014

Want to Wish Me a Very Happy Birthday?

In honor of my upcoming 55th birthday
(Thursday), please consider making a donation to my Multiple Sclerosis fundraising efforts.  For the fifth year in a row, the Wheeler's Wobblers MS Walk Team will participate in the Wilmington, DE, MS Walk (April 12th) to raise money for research and programs.  Our team's fundraising goal is $5,000.  Ah, the power of five.  I wonder if we can get 5 people to donate $55?

To make a tax-deductible contribution via credit card, go to MY WALK PAGE and select "Donate to Joan."  Let me know if you prefer to donate by check, and I'll send you a self-addressed stamped envelope.

Any donation of any amount will be greatly appreciated. Even small donations make a difference.

Thank you and Wobble on!


Wheeler's Wobble but we don't fall down thanks to YOUR support!
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Thursday, March 6, 2014

Why I Walk

Recently, the MS Society asked me about my motivation for participation in the yearly MS Walk fundraisers.  They asked for a quote about “Why I Walk.”

At first, I struggled to answer because it was a high-fatigue day and I was barely able to get around the house and I wanted to be left alone.  I didn't have the energy to think about forming a team, doing fundraising, or recruiting walkers.  So really, why DO I organize a team and participate in the MS Walk, especially when every year in post-walk exhaustion I mutter "I'm not doing this again"?

Then I looked at the Wheeler’s Wobblers T-shirt, and the long list of sponsors
on the back.  I remembered how much fun it was when businesses asked me how they can help.  I looked at the pictures of our past teams, and remembered how people still speak about the fun they had at the last walk.  I remembered that these walks gave me the opportunity to meet my local Congressman (Earl Jaques (D-Glasgow) who is now on my team) and people from all over northern Delaware, people I would not have met otherwise.

So I wrote this:
"As a person with MS, it is easy to feel isolated.  Participating in the MS Walks gives me an opportunity to connect with others while doing something fun, and create lasting relationships in the process."  
I thought it sounded good at the time and would satisfy the request for a quote, then I’d go back to hibernating.

But this week, I realized how very, very, very true that statement is.  For a recent MS Awareness Week fundraiser for my walk team, I reserved a table at Ruby Tuesday, then put out the word that I would be there so come join me.  I was thrilled that eight people took me up on that offer.  As people from various parts of my life (church, book group, MS society, physical therapy) were talking to each other, I looked around and noticed that everyone was getting along and engaging in interesting conversations.  We might not have raised a huge bucket of money that night, but we had fun while creating lasting relationships. 

And that is why I walk.

If you want to join Wheeler’s Wobblers MS Walk team in Wilmington, Delaware, on April 12th, OR if you would like to support us with a tax-deductible donation, just click here:


 Our team motto is 
“Wheelers wobble but we don’t fall down thanks to YOUR support!”

Tuesday, March 4, 2014

Happy MS Awareness Week




Just in case you didn't know, this is MS Awareness Week.  There, now you are aware!

The Delaware Chapter has a week of fundraisers at local restaurants, and today is Ruby Tuesday's day.  If you go anytime today, to any of the Delaware Ruby Tuesday restaurants, and give your server this coupon, RT will donate 20% of your check to the MS cause.  And the Wheeler's Wobblers MS Walk Team gets the credit.

I reserved a table at the Bear, Delaware, Ruby Tuesday for 6:00 pm, and you are welcome to join me.  Hope to see you soon. Wobble On!

http://www.nationalmssociety.org/NationalMSSociety/media/Delaware/ruby-tues-flyer.pdf


Thursday, January 16, 2014

Martin Luther King Jr. Day of Service: MSAA Shares Ways to Show Support This Monday




Martin Luther King, Jr. Day of Service - January 20th, 2014
Ways to Give Visit mymsaa.org Tweet This Donate
What are your plans for this Monday?Join us for MLK Day of Service this 1/20/14
In 1994, Congress declared the Martin Luther King Jr. holiday as a day of service.  Twenty years later, Americans all across the country still honor King's memory by engaging in acts of service that benefit their fellow community members. 
Rather than taking the day off this Monday, January 20th, we're encouraging others to use this day to help improve lives for the multiple sclerosis community in the spirit of service.
Learn more about how you can help improve lives
Short on time or money?Join us
You'll find many different ways to help, and not all of them require a big budget or even a flexible schedule. In fact, even with minimal time or money, you can truly make a difference and help improve someone's life.
Ways to volunteer or serve:
5. Consciously send positive, healing thoughts to someone
6. Perform random acts of kindness - this can be as simple as brightening the day for an elderly person you know

Join us for Martin Luther King Jr. Day of Service

In what ways, big or small, do you plan to serve or volunteer this Monday?
Tell us on Facebook or learn more about ways you can help. 


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