Tuesday, August 31, 2010

Last Day to Vote in PepsiRefreshChallenge!!

Last night I received an email from a woman asking that our MS community rally support behind the non-profit Hannah'sHopeFund which is fighting to fund a cure for Giant Axonal Neuropathy (GAN), a very rare neurological genetic disorder which develops in early childhood.

To receive a $250,000 grant from Pepsi, they must place 1st or 2nd with highest number of votes in the PepsiRefreshChallenge.  Hannah'sHopeFund is currently in 2nd place (at the time of this writing) and needs to maintain that position if not move up into 1st place by midnight, Tuesday, August 31, 2010.

Unlike MS which attacks only the central nervous system, GAN destroys both the peripheral and central nervous systems over time.  Researchers have identified the genetic mutation and funding is needed for clinical trials.  This would be an excellent way for Pepsi and Hannah'sHopeFund to help make that happen.

Supporters can vote a total of 3 times.
 
1.    Text 101885 to 73774
2.      Vote via the web: http://www.refresheverything.com/hannahshopefund (If it’s your first time voting on the web you’ll have to register on the site the first time you vote. After you register once, you will not have to register again).
3.      Vote via Facebook: (make sure FB isn’t open in another window)
·         go to the web http://www.refresheverything.com/hannahshopefund
·         Choose “Vote for this Idea”
·         When you get the sign in box there is an option in the upper left hand corner to “Log in using Facebook”
·        Log in with your Facebook user name and password and cast your vote!

Here is a recent story about our efforts:

Wendy 

Thursday, August 26, 2010

Carnival of MS Bloggers #70

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

On the Journey and Self-Identity

by Judy at Peace Be With You


My mind is open.
I will try anything once
if it shows promise.

Experimenting,
an avenue for testing
possibilities.

In my eagerness
for taking roads less traveled,
I expand my world.


Don't Be the Patient 
by Christie of The Lesion Journals
Be the friend. Be the colleague.
Be the partner, lover, and best friend.
Be the artist. Be the writer.
Be the surfer, swimmer, and diver.
Be the gardener. Be the cyclist.
Be the horn player, conductor, and flutist.
Be the bingo player. Be the deep sea fisher.
Be the cousin, sister, and daughter.
Be the baker. Be the photographer.
Be the wine connoisseur, cheese monger, and chef.
Be the person other than just the “Multiple Sclerosis” patient.

by Judy at Peace Be With You


Met some friends today.
We talked about a book.
It was like old times.

I felt myself soar.
My walker sat on the side
ignored by us all.

I got to pretend.
Briefly my world expanded.
I was fully me.


by Lisa Emrich at Brass and Ivory

When I read about chronic illness in discussions of public health policy, I note the following information is shared and sited repeatedly.
Chronic diseases – such as heart disease, stroke, cancer, diabetes, and arthritis – are among the most common, costly, and preventable of all health problems in the U.S.  Chronic diseases are the leading cause of death and disability in the U.S.  Four modifiable health risk behaviors—lack of physical activity, poor nutrition, tobacco use, and excessive alcohol consumption—are responsible for much of the illness, suffering, and early death related to chronic diseases.
- Centers for Disease Control and Prevention (CDC)
I live with chronic disease but I'm not represented in the top five diseases.  It is assumed that people could prevent their chronic illnesses if only they led a healthier lifestyle.  But you don't develop multiple sclerosis or rheumatoid arthritis because you ate poorly, drank alcohol or were physically inactive.  (Smoking, however, has been shown in studies to increase the likelihood of developing MS.)

For next week's “Patients For A Moment” edition, Leslie asks the following question:
What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?
What would I want people to know?  That's a tough one because I don't often think that non-chronically ill people would want to know more about my illness, honestly.  Not unless they had a direct connection to me personally.

Who are the non-chronically ill?
 In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.2
Let me use my own my own family (and that of Rob's) as an example.  There are three adults aged 60-75 and five adults aged 34-41.  Of those eight adults, four live with chronic disease.  Myself and our parents.  Our siblings are "healthy."  (So we do represent 1 out of 2 adults living with at least one chronic illness.)

What would I want the healthy siblings to know?  Let me think (type) out loud.

I don't enjoy having these diseases.  In fact, I despise them.  But they are a part of me now, so I can't comfortably despise them too much.  I don't want to hate myself just because I have illnesses.

Notice I didn't say that I am ill.  I'm not "sick."  If I have a cold or bronchitis, then I am sick.  But MS and RA are not sicknesses, they are diseases which are constantly working within my body.  They are always active whether we know it or not.

There is the underlying fear of waking up one day and finding that one of the diseases has decided to attack and flare such that it takes away another little part of me or my abilities.  That fear can become oppressive and in the quiet of the day, I am afraid. 

How do I deal with that fear?

Sometimes I cry.  Sometimes I look to the people who have been more affected by these diseases and observe how wonderfully they live their lives.  That gives me inspiration that no matter what, I will be okay.  I have already adapted to changing circumstances, I will continue to adapt as necessary.

That's what humans do so well.  We adapt.  We are flexible creatures who do not need generations to adapt to new circumstances.  We don't have generations, we only have our own life to live.

One life to live.

That's what I would want the non-chronic illness people to know.  We only have this one time through life.  It isn't a straight journey, but has many twists and turns.  True for all of us, non-chronically ill or chronically ill.

Now I'm highly adaptable (I have no choice) but I can't do this alone.  I need your help and support.  I don't need to be pitied or ignored.  I don't need to be coddled or stifled.

I do need your love and support.  Treat me as you would like to be treated if you were in my situation.  I am just like you, but traveling a slightly different path.  I may be "diseased" but I am still me.

I am still me.

by Judy at Peace Be With You


The quiet courage
so many MSers show
just leaves me in awe.

People have no clue
how much sadness lies hidden
behind a bright smile.

This challenge is tough.
We all make the best of it.
Sometimes it's too much.


This concludes the 70th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 9, 2010. 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, September 7, 2010.

Thank you.

Comments for this post.

Tuesday, August 24, 2010

Advocating for Yourself in College When Living with Disease and Disability

Whether just diagnosed with RA or having lived with the disease for years, it is during the college years that you will learn to become your own advocate.  Previously parents may have fulfilled this role (one which never really ends), but it is ultimately your responsibility to know where and how to request the services you need.  And if you are a parent reading this, it is good to know what your current or future college student’s options are.

Disabilities Services Office on Campus
Every college or university has a disabilities services office which is your starting point.  If you have already been living with disability when you are admitted to college, register with the disability services office prior to the beginning of the first academic semester (only if you need to request accommodations).  For first-year students, registering during the school’s orientation program helps to ensure that accommodations will be in place on the first day of the semester.  Keep in mind, however, that you still must be able to meet a program's admission, academic, and technical standards (i.e., all essential nonacademic admissions criteria) either with or without accommodation.

Read this post in its entirety:

RA and College: Academic Accommodations on Campus

A similar post geared at college students living with MS will be published tomorrow.

Sunday, August 22, 2010

I am still me.

When I read about chronic illness in discussions of public health policy, I note the following information is shared and sited repeatedly.
Chronic diseases – such as heart disease, stroke, cancer, diabetes, and arthritis – are among the most common, costly, and preventable of all health problems in the U.S.  Chronic diseases are the leading cause of death and disability in the U.S.  Four modifiable health risk behaviors—lack of physical activity, poor nutrition, tobacco use, and excessive alcohol consumption—are responsible for much of the illness, suffering, and early death related to chronic diseases.
- Centers for Disease Control and Prevention (CDC)
I live with chronic disease but I'm not represented in the top five diseases.  It is assumed that people could prevent their chronic illnesses if only they led a healthier lifestyle.  But you don't develop multiple sclerosis or rheumatoid arthritis because you ate poorly, drank alcohol or were physically inactive.  (Smoking, however, has been shown in studies to increase the likelihood of developing MS.)

For next week's “Patients For A Moment” edition, Leslie asks the following question:
What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?
What would I want people to know?  That's a tough one because I don't often think that non-chronically ill people would want to know more about my illness, honestly.  Not unless they had a direct connection to me personally.

Who are the non-chronically ill?
 In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.2
Let me use my own my own family (and that of Rob's) as an example.  There are three adults aged 60-75 and five adults aged 34-41.  Of those eight adults, four live with chronic disease.  Myself and our parents.  Our siblings are "healthy."  (So we do represent 1 out of 2 adults living with at least one chronic illness.)

What would I want the healthy siblings to know?  Let me think (type) out loud.

I don't enjoy having these diseases.  In fact, I despise them.  But they are a part of me now, so I can't comfortably despise them too much.  I don't want to hate myself just because I have illnesses.

Notice I didn't say that I am ill.  I'm not "sick."  If I have a cold or bronchitis, then I am sick.  But MS and RA are not sicknesses, they are diseases which are constantly working within my body.  They are always active whether we know it or not.

There is the underlying fear of waking up one day and finding that one of the diseases has decided to attack and flare such that it takes away another little part of me or my abilities.  That fear can become oppressive and in the quiet of the day, I am afraid. 

How do I deal with that fear?

Sometimes I cry.  Sometimes I look to the people who have been more affected by these diseases and observe how wonderfully they live their lives.  That gives me inspiration that no matter what, I will be okay.  I have already adapted to changing circumstances, I will continue to adapt as necessary.

That's what humans do so well.  We adapt.  We are flexible creatures who do not need generations to adapt to new circumstances.  We don't have generations, we only have our own life to live.

One life to live.

That's what I would want the non-chronic illness people to know.  We only have this one time through life.  It isn't a straight journey, but has many twists and turns.  True for all of us, non-chronically ill or chronically ill.

Now I'm highly adaptable (I have no choice) but I can't do this alone.  I need your help and support.  I don't need to be pitied or ignored.  I don't need to be coddled or stifled.

I do need your love and support.  Treat me as you would like to be treated if you were in my situation.  I am just like you, but traveling a slightly different path.  I may be "diseased" but I am still me.

I am still me.

Friday, August 20, 2010

Inspiration Afternoon

I felt like sharing something special today, but couldn't come up with my own topic upon which to write. One reason I believe I was drawn to music (or stayed connected to music) was that often no words are required. It's hard to believe but words do not come naturally to me. Sure I can conduct a brain-dump with the best of them, or research and share information in an educational way. But today none of that was coming to me.

Fortunately, I discovered this amazing horn player featured on one of my favorite horn-related blogs, Horn Matters. Then I proceeded to spend more than an hour listening to his work on YouTube. He is arranger, musician, and film maker. I hope you enjoy a few of his videos.

Tribute to John Williams for 12 Horns by Marc Papeghin



I couldn't embed it, but I recommend you watch French Horn Tribute to John Williams - Part V.

"Previously On...." A TV Theme French Horn Medley by Marc Papeghin


These are total fun and require no words. :)

Thursday, August 19, 2010

Myelin Repair Foundation: An Updated View

The Myelin Repair Foundation is unique. They are doing the validation work which large companies are not willing to do. In the past year, they have received a great deal of attention and recognition for the work they are doing. Here is a new video which explains a bit of their philosophy and work while introducing us to some of the individuals and scientists involved in finding the key to myelin repair.


Of course this video is also a plea for financial support. Visit their website for more information regarding the Foundation and their work.

Wednesday, August 18, 2010

Got Nothin' Up Top...Still

Yesterday, I had a neuro appointment.  This was a follow-up from an appointment I had two weeks ago, during which time we discussed some symptoms I had been experiencing this summer.

I also told her about the week or so of new bowel issues in the spring and the two weeks in June when my left forearm felt like it was on fire and the slightest touch made me jump and recoil.  Previously this arm had simply been very numb (still is).  I wondered if I weren't feeling the effects of nerve repair, or more likely two nerves just sending cross signals.

She put me through all the normal neurological silly human tricks.  My balance was obviously more off than it had been previously.  I was more numb than before.  My hip muscles were weaker than usual.  And.....my face was becoming annoyingly numb.

I reported how I had felt really good MS-wise when I got a bonus dose of steroids with the Rituxan infusions.  Feeling that I had too many little things going on, she scheduled me for one day of solumedrol the same day as my appointment.  Basically just to see if I got a boost or any relief from the boost.  We also talked about doing some pulse steroids.

But first, I had to get a baseline bone density scan.  The following week was a new MRI scan.  I was curious and nervous to see if lesions had started growing amok since I stopped Copaxone last fall.  I also wanted to see if there had been any improvement since I started Rituxan. 

The results.  My bones are rather dense.  My scores are 1 and 1.5 standard deviations from the norm of a 30-year old healthy woman.  That's really good.  So I'm going to do another 1-day of steroids at the beginning of September.  We'll see if it makes a difference in how things are going.

The radiologist's report couldn't have been more boring or less exciting.  In fact, I think he must have been bored while studying my brain.  Absolutely nothing to see there.  I'm all clear up top.  I still do not have any brain lesions.  Whoohoo!

The one nasty cervical spine lesion which seems to cause me all the grief is still there, but didn't seem to have grown any.  In fact a smaller neighboring lesion which was seen in my neck back in 2008 was apparently no longer there.  Improvement!!

Like I said previously, I'm feeling pretty good.  My symptoms have flared up randomly during the past six months, often lasting for a week or more.  But the severity hasn't been anything to get excited about, meaning nothing to warrant a call to the office to get steroids.  If we call those mini relapses, and if this is representative of what my relapses will be like (having not much bite), I'm almost venturing to say that the Rituxan experiment is working for me.

During yesterday's appointment, I had improved in several of the neuro tests.  I actually completed the heel-toe walk without landing on the table.  I wobbled for sure but managed to save it and hold on.  Two weeks ago, legs lost position and I did practically land on the table.  Two weeks ago, my face was really acting up and I was very much fatigued.  Basically, I was in a mini relapse which has resolved now.  Whether it was the steroids or simply time that "fixed it" - who cares.

My hip muscles are still very weak (which would account for the difficulty I have walking sometimes).  My arms are still very numb, like completely boring with the pin-prick test, like please make me go ouch or I'm going to yawn here.  LOL.  My legs are only numb up to the knees now.  More improvement.

Basically all good news.  Now I need to give myself permission to feel good about it all.  Sure, I'll do the pulse steroids (if I want) over the next five months.  It's really up to me and how I feel.  Right now I think that I'll decide to feel good.  How's that?

Tuesday, August 17, 2010

Making Accommodations at School for Your Child Who Has MS

Learning to live with pediatric MS is not easy for your child; it’s not easy for you.  One of the most difficult parts of living with MS for a child may be a lack of understanding from friends and teachers about hidden symptoms.

Academic accommodations or modifications may be necessary to minimize the effect MS may have on the student’s learning and academic performance.  Although it is easier to respond to symptoms which are easy to see and understand (e.g., walking difficulties, balance problems, or tremor) than less obvious symptoms like fatigue and cognitive changes, all symptoms are equally important to recognize.

Specific physical and emotional stressors which students with MS may experience in school include:
  • Bladder or bowel symptoms which require frequent, urgent trips to the bathroom
  • Difficulty taking the stairs due to weakness, fatigue or poor balance
  • Change in academic placement due to cognitive changes
  • Visual changes which come and go and interfere with classroom functioning
  • Inconsistent level of empathy and support from school staff
  • Isolation
MS is unpredictable, so understanding its symptoms is key to providing an appropriate 504 or Individualized Education Plan (IEP).  Since a variety of MS symptoms can negatively effect your child’s ability to learn, he/she may qualify for Other Health Impaired (OHI) special education services.  Check with your school administration to see if this is an appropriate approach for your child.

Read this post in its entirety:

Pediatric MS: School Accommodations for Academic Excellence

Monday, August 16, 2010

When it's good to be able to pinch an inch...

Recently, I’ve noticed that I take a little more time looking at myself in the bathroom mirror.  It’s odd, as my weight is going down, I am beginning to feel physically fatter.  It doesn’t make sense, I know.

It is easier to grab handfuls of flesh and visualize the core body hiding beneath.  If it were possible to chop off this excess, I would feel almost pseudo-skinny (at least for me).  I even asked Rob the other day if we could just slice off the saddlebags which are becoming more defined.  He said no....bummer.

I know that the more important fat to lose is visceral fat.  This is the fat which lies deep within the abdominal cavity, padding the spaces between the abdominal organs.  Losing this internal fat is why I can feel a slimmer belly in me.  Visceral fat increases the risk for cardiovascular disease and type II diabetes.  It also produces inflammatory proteins which negatively affect rheumatoid arthritis.

Read this post in its entirety:

Can Losing Weight Make You Feel Fatter?

I wrote the above post last week and I still find the contradiction to be, well, a contradiction.

Saturday, August 14, 2010

"Until medicine proves otherwise, technology is the cure" - Steve Saling


The Boston Globe
Fighting ALS, one gadget at a time
New center allows greater independence

By Kay Lazar, Globe Staff | August 14, 2010

CHELSEA — Steve Saling talks about being lucky and as happy as he has ever been, which might seem odd, given that Saling cannot speak, walk, or move his hands.

His “voice’’ is the monotone of a computer, activated by an infrared beam he moves with almost imperceptible twitches of his head.

The 41-year-old former landscape architect has Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, a progressive nerve disorder that slowly paralyzes patients while leaving their mind intact. They eventually lose the ability to even breathe, often within five years.

Saling was diagnosed four years ago, a month after the birth of his son. Instead of despairing, he went into overdrive, determined to use technology to stay one step ahead of the relentless and usually lethal disease. Now he is blazing a path for many others.

Through a chance encounter shortly after his diagnosis, he teamed up with Barry Berman, chief executive of the Chelsea Jewish Foundation, and helped to design the nation’s first residence for ALS patients needing nursing care. Using customized infrared technology, patients have far more independence than in a typical nursing home.

Saling, who once specialized in making public parks accessible for disabled people, is its first resident.

The Leonard Florence Center for Living’s Steve Saling Residence officially opened yesterday in Chelsea. Tiny infrared transmitters in the ceilings connect to a master computer in the basement. This allows its residents to use small computers on their wheelchairs to summon an elevator, open and close doors, turn lights, televisions, and DVDs on and off, control the heat and air conditioning, even order meals from the cafe downstairs.

“My whole life has perfectly prepared me to be right where I am today,’’ Saling wrote in an introduction for the opening of the 10-bedroom residence. “I was a very good landscape architect and I am proud of my professional achievements, but my most important work will be done after I got ALS.’’

With a mischievous smile, Saling recently demonstrated his masterpiece.

Using a teeny dot on his glasses that reflects an invisible infrared beam from a small sensor/transmitter on his wheelchair, he can control the “mouse’’ on his computer. He guides that mouse with subtle shakes of his head, and suddenly the shades come down in his bedroom, the lights go off, music comes on, and the door closes.

“I even have a remote-controlled bidet to wash and dry my bum, so that I maintain that independence,’’ he said, using the infrared beam to tap letters on the screen, telling his computer voice what to say.

Saling’s designs were used for a second high-tech residence in the same complex for patients with multiple sclerosis. It didn’t take long for residents in the ALS and MS homes, many in their 40s and 50s, to strike up fast friendships.

“We go out for a roll together, down to the marina at night,’’ said Bonnie Berthiaume, a 58-year-old former computer software saleswoman who transferred from a nursing home into the MS residence.

They’re also planning a skydiving outing, with Saling as the ringleader.

Surrounded by photos in his bedroom that capture his hardy, outdoors life before ALS, Saling, now a slight man with an ethereal glow, seems at peace.

His mother, Jean Saling, said that when he was diagnosed, he told his parents that the only thing that would make him sad is if they were unhappy about the news.

“He was always strong-willed,’’ Jean Saling said. “But the ALS has given him a purpose in life.’’

Still, it has not been easy. She said that her son had always wanted to be a father. Steve Saling later said in an e-mail that he yearns to hold his 4-year-old son Finn, who visits often but lives about 20 minutes away with Saling’s former girlfriend.

Finn “is a bitter-sweet reality,’’ Saling wrote. “I’m right now watching my brother canoe to shore with Finn in his lap. I wish that could be me. I get to see him often, but it’s not the father experience I hoped for.’’

While many ALS patients choose to forgo life-sustaining ventilation when the disease shuts down breathing, Saling intends to be fully mobile, living with a portable ventilator the size of a laptop computer, including batteries, that can hang off the back of his wheelchair.

The Chelsea project “will show everyone that a vented life can be a quality life,’’ Saling said. “It is the honor of a lifetime to be involved with this paradigm-shifting venture.’’

And if ALS halts his ability to control his computer through eye or head movements, Saling is prepared.

“There is promising technology that will allow the computer to be controlled by thought alone,’’ he said. “I am considering participating in a trial that hopes to make that a reality.’’

His indomitable drive is inspiring others. An estimated 30,000 people in the United States have ALS, and many end up in traditional nursing homes, spending long hours in bed because there has not been a place like the Leonard Florence Center, with specialized staffing and technology, advocates said.

With the Chelsea Jewish Foundation, Saling is developing 10 similar homes for ALS patients in at least four other states over the next five years. Yesterday, that goal got a boost when Chris Stevens, cofounder of Keurig, the Reading-based coffee company, donated $100,000 of his own money and another $100,000 from his parent company, Green Mountain Coffee.

Saling told the crowd of advocates who attended the opening that his son inspires him to keep going, hopefully for decades.

“Until medicine proves otherwise, technology is the cure,’’ Saling said. “Thanks, and remember, life is good.’’

Kay Lazar can be reached at klazar@globe.com.
© Copyright 2010 The New York Times Company

Thursday, August 12, 2010

Carnival of MS Bloggers #69

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

Summer Effects, Inspiration, and Determination

Every day, I embrace
by Dan Digmann

My days are numbered. Medical experts essentially tell me this all the time.

I heard it most recently when I attended an MS conference last weekend hosted by the University of Michigan Hospital in Ann Arbor.

In not so many words, they said that most people with Multiple Sclerosis live with the relapsing-remitting form of the disease for so long and eventually transition to the secondary-progressive form after they’ve had the disease for 10 years.

I hate it when I go to these kinds of things because they often provide a subtle yet very in-my-face reminder that I truly have a chronic, progressive disease. I don’t blame them for their pessimistic forecasts because I realize the medical facts don’t lie.

With a decade under my belt, I guess I’m living on borrowed time.

While I don’t consciously think about it, I wonder if I unconsciously realize this with every step I take. Every stair I climb. Every race I run. Every shoe I tie. Every workday I complete. Every book I read. Every sentence I write.

Everything I do.

Such a reality check has the potential to throw me off my game and into a woe-is-me abyss that could consume my life. But I won’t let this happen. Guided by the charge of Coach Jimmy Valvano who said, “Don’t give up. Don’t ever give up.”

With a decade under my belt I know I’m living on, regardless what form of Multiple Sclerosis I have.

I consciously realize this with every challenge I face. Every obstacle I overcome. Every frustration I feel. Every battle I lose. Every battle I win. Every moment I live to its fullest.

Every day, I embrace.


I WILL BEAT YOU DOWN IF YOU LET ME!!
This heat wave is no joke! If hell is hotter than what it has been for the past three months...I pray living my life by the Golden Rule is my ticket into heaven. :-)

Multiple Sclerosis and I have been battling during this heat wave. IT is getting upset with me because I have not allowed IT to take over. IT needs to know I am in control of my body! There was a time I allowed IT to control my body, but I did not like the way IT played. I use to go about my daily routine as if I was not living with MS (IT) during the summer months and would have to be injected with 3000 mg of Solu-Medrol two to three times during the summer because IT would affect my body in a negative way for days.

This is the first summer in years; I have not had to have an IV Infusion. I know that is because instead of allowing IT to control me, I took control of IT by LISTENING to MY BODY. I have learned to say NO, and still be productive in my LIFE and that is the greatest feeling ever. When I was forced to quit working in my dream job eight years ago, I thought my life was over. I like my new non-paying job better. I now utilized the skills I have learned over the years to help and be a voice for others and work with disadvantage children.

Yes, I have Multiple Sclerosis, but to me MS means I AM Mighty Strong!



Summer is almost over but yet we’re still feeling the heat. Although officially fall has arrived, the thermometer is not agreeing because we’re at our peak of temps here in Japan. To make things worse, we live in a big city where the asphalt and high rises seem to magnify the heat.

I’m sure most patients with Multiple Sclerosis dread this season because of the effects, increased fatigue and the like. The heat of summer exacerbates MS symptoms, (Uhthoff’s symptom,) arguably bringing them to their worst. We all have our ways of trying to cope, but often it’s difficult to find relief short of just staying home under the air conditioner. In an attempt to stay cool my first summer out of the hospital with MS, I carried around an ice-pack and traveled by cab as much as possible. But as time went on I realized that there is a way to lessen the effects of the heat.

I’m sure many of you have wondered why there are some days you’re relatively symptom-free, yet other days you feel absolutely miserable. Perhaps what you’re putting into your body each day is to thank or to blame for this.

For centuries the Chinese have viewed human beings as part of the natural environment. As such, our bodies are not always the same throughout the year: rather, they’re continually changing with the changes in season. To adjust to these changes, nature has provided what we need in the form of seasonal fruits and vegetables.

It’s easy to forget what fruits and veggies are actually in season, however, thanks to modern horticulture technology. As much as anyone, I appreciate that I can buy my favorite veggies any time of year, should I be in the mood. But by eating things out of season, we’re not in tune with the seasonality and can in turn get sick.

In general, any fruits or veggies are good for you. But there’s a reason that they’re ‘summer’ fruits and vegetables. To counteract the heat brought on by summer, fruits and vegetables that are in season at this time actually have a cooling effect on the body. Specifically, cucumbers, zucchini, asparagus, tomatoes, eggplant, water melons, and tropical fruits are good to cool us down. On the other hand, garlic, ginger, onions, and leeks could exacerbate symptoms because they warm the body, and so their use should be avoided or minimized in summer.

Throughout history, our ancestors have adjusted to the changes in nature by eating what was available seasonally in their environment. Of course, this wasn’t by conscious effort. It was just a matter of eating what they could find. But because nowadays many fruits and veggies are accessible year-round, and especially because we’re dealing with a difficult illness like MS, we need to take special care of what we put in our bodies so we can properly adjust with the seasonal changes.

Take care of yourselves and enjoy the effects of what nature has provided for us.


SoluMedrol and Home PT
by Maryann Rubin

First of all, I had a 3-day course of IV SoluMedrol last week because my MS was getting worse. It helped with my energy level and a little bit with leg weakness. The RN used something called a Mediball. It was the neatest thing. The solution is in a small ball, which is pressurized to deliver the medicine over a 1-hour period. The beauty is, you can stick it in your pocket and walk around--you are not attached to a pole IV set-up.

While the RN was here, she mentioned that I could get Physical Therapy through their company (Gentiva) to help me with my balance and walking. This morning, a physical therapist came out and gave me an assessment. She will be coming twice a week for four weeks, giving me tips and exercises to do on my own. Then, the company has something called Safe Strides. This is a program that works with your eyes, your ears and your body, to help you walk and stand better.

I have a good feeling about this. I've been falling more often, and running into walls and doorways. Of course, the tremors don't help my walking any.

I feel like a real mess!

Because of stress and the hot weather we've been having, I had an MS flare and I was getting depressed--crying, feeling very sad, and getting angry. My PCP started me on Celexa, which actually is doing a very fine job leveling out my mood. The only side effect I've gotten is dry mouth, which is no big deal.


This concludes the 69th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 26, 2010. 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 24, 2010.

Thank you.

Comments for this post.

Wednesday, August 11, 2010

Pediatric MS: Resources for Kids, Teens, and Parents

Imagine that you are 8 years old, or maybe 15 years old, or the parent of a child who is 3 years old when he/she is diagnosed with multiple sclerosis.  Where do you turn for information and support?

As we discussed last week, the National MS Society helped to establish the national Pediatric MS Centers of Excellence which provide diagnostic, treatment, and support services to children with MS or other related neurological disorders and their parents.

Beyond the medical care which you receive from a neurologist and staff, you will need resources aimed specifically at your needs.  How do you know what your needs will be? You probably don’t.

Please visit the post for links to various resources, including the collection of stories posted in the Pediatric MS section of Multiple Sclerosis Resource Centre's website.

Read this post in its entirety:

Pediatric MS: Resources for Kids, Teens, and Parents

Tuesday, August 10, 2010

Laugh, Sing, and Eat Like a Pig: Empowered Patients and Participatory Medicine

Not long ago, I sat in the hair salon getting the gray 'removed' from my head.  I have more gray hairs than I used to, most likely due to age.  Some due to medication, I think.  It's one of those things which you just learn to live with, especially if you juggle chronic illness.

The book I was enjoying was written by a twitter friend and fellow empowered patient, Dave deBronkart, aka "e-patient Dave." Dave was diagnosed with Stage IV Kidney Cancer in January 2007 after an x-ray for a shoulder problem (which was fine) showed a spot on his lung. That spot turned out to be a metastatic tumor from kidney cancer which had spread to his organs, bones, and even muscles.

As you can see ePatientDave is alive and well.  He is proof that it just may be possible to turn cancer into a chronic illness.  But he made that happen with a lot of persistence, being highly engaged in his own care, connections who provided just the right information at the right time, an aggressive treatment trial, the support of many loved ones, and a proactive relationship with his medical team.

Dave had become an e-patient before he had ever heard the term.  In the past two years since, Dave has become the torch-bearer for the empowered patient and participatory medicine movement.  I have viewed footage of some of his speeches at various conferences, so I thought I knew his story.

In reading his book, I learned so much more.   
"Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)"


Here's my disclosure.  Dave was tweeting with some influential e-patients and activists, discussing when they would receive their review copies.  I sent Dave a note.
 
"I'm not a 'big name' blogger, but I'd love to review your book.  Also, look forward to meeting you at http://epatient2010.com"


Dave talked with his publisher and I received a copy ten days later.  Laugh, Sing, and Eat Like a Pig is available on Amazon for $17.95 and eligible for free-shipping.  My copy was free to me.

During Dave's journey, he kept in touch with family and friends through a website, CaringBridge, which somewhat resembles a private blog.  A journal to document, share, and keep people informed.  His online journal forms the foundation of the book.  However, it is not the entirety.

Dave's book is full of hope, empowerment, and engaging discussion of the power of the patient in healing health care through participatory medicine.  While I knew the topic going in, I came out relating in a way I had not expected.

Below is an excerpt [pp.96-97, reprinted with permission] which is so rich and honest that the topic transcends cancer, health, or medicine.  Dave's journey delves into the depth of realities, visible, known, acknowledged, and unknown.
Saturday, February 10, 2007 [6 weeks after the x-ray]

What do we name the tumor?

Okay, you know me: I'm a brat about just about everything.  I heard that some people name their cancer and talk to it.  So I've been (idly) wondering what to name this thing.  Nothing normal, that's for sure - nothing like "Frank."  I want it to be something really disrespectful, something that would make it curl up in shame and just get out of town.  What to call it... it's a kidney cancer; call it "Kid Can"?  Naaah.  "KC"?  Bleah.

Thursday I had dinner with daughter Lindsey and she got That Look in her eye.  She looked off to the side and came back with "How about Reeni?  For renal cell carcinoma?"  I kinda like it - it suggests a sneering "Neener neener neener, Reeni is a wiener."

Monday, February 19, 2007 10:30 PM

I'm going to stick my neck out here about how to relate to the cancer inside me.

About ten days ago I posted about coming up with an insulting name for the cancer, something to make it shrivel up and get out of town.

A few days later, Sister Suede raised a thought I've heard (rarely) from others, that there might be another way to look at it: that the cancer is actually part of me (which it is - homegrown by Yours Truly), and it's something to have a different sort of relationship with.

I've thought about it since then, and I want to explore this.  Please play along for a minute.
 *   *   *

All these tumor cells are actually part of me, from me, created by my body.

My rewording of Suede's observation is that there's no integrity in viewing it as something foreign.  It's a mistake, and will surely leave me with no power to be effective in relating to it.

So I'm looking for a way to acknowledge that this is actually part of me.  It's a part that may be working against me, and a part of me that I may not like; but if I don't grant what's so, or if I make it wrong for being what it is, I'll have no power (no effectiveness) in the matter.

In this point of view, the game would be to see what that part of me is incomplete about - what that part of me has been unable to express.  And while thinking about that, I caught a flash that it could be self-loathing about something.

So I'm looking at granting "being" to some sad or angry or disapproving part of me, acknowledging it, being in compassionate acceptance for the pain or fear that is incomplete in it.  I'll let it get complete.

Mind you, I'm not saying I intend to have a warm fuzzy-lovey relationship with self-destruction.  :)  But I have a friend who overcame an unbeatable case of hepatitis-C, and I remembered that he used an approach similar to this, among other things.

I'm not about to stop doing all the treatments I'm doing.  But I'm also getting a strong sense that it makes no sense that I'd have a self-destructive thing growing inside of me.

And as part of that I'll look for an additional name for it, a name that embodies the spirit in which I want to transform this thing.  The idea is that if the unexpressed can get complete, a new future and a new world of possibility can become available.

We shall see.
If you enjoyed that, please go read another excerpt from Laugh, Sing, and Eat Like a Pig which was published at KevinMD.com just yesterday.  Read Chapter 3: Facing Death-With Hope.

To learn more about the e-patient white paper and participatory medicine movement, please visit the following websites:
"An engaged patient plays an active role in his or her care. Or, as e-patients.net founder “Doc Tom” Ferguson said, “e-Patients are Empowered, Engaged, Equipped and Enabled.”
We who’ve become e-patients don’t wait for our providers to tell us everything; we get it in gear, we ask questions, we do what we can to help."
You and I who take an active role in our own health care and disease management are e-patients.  We are empowered.  We are engaged.  In our community, we are also empathetic.  Thank you for traveling this journey with me.

And if you wish to follow along, my RA friend Kelly Young is journaling her reading of the book.  Check out Kelly's website at Rheumatoid Arthritis Warrior.

Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)
©Richard Davies deBronkart, Jr.
Published by Changing Outlook Press, an imprint of
Changing Outlook LLC.
ISBN: 978-0-9816504-3-2

Postlogue:  Here is the review I left on Amazon for Dave's book.  I meant every word.
As someone living with two incurable chronic illnesses, I didn't think that I could relate to someone who 'beat' cancer.  Well, I was wrong.  We have more in common than I had allowed for in the artificial segregation of patient communities. 

"Laugh, Sing, and Eat Like A Pig" is more than a cancer survivor's story of facing down death.  It is the story of how one patient becomes empowered and engaged in his own health care, without which he may have simply become a statistic.  And not the successful treatment trial responder type statistic.

"ePatient Dave" became an e-patient before he had ever heard the term.  This saved his life and it will help so many other patients who learn from his experiences.  We can all become empowered patients, engaged in our healthcare, working WITH our doctors for better outcomes.

Dave's ongoing story has inspired me and it will you, too.  In other words, I give "Laugh, Sing, and Eat Like a Pig" two-thumbs-up.

Monday, August 9, 2010

Self-Advocacy, Phlebitis, and Infusions

"Ouch! Sorry I didn’t mean to jump like that.  The pain was unexpected."  The infusion nurse Kay (not her real name) said, “that’s okay, we don’t need to flush the rest of this saline.”  It was the end of an extremely long and stressful day.  Let’s start from the beginning.

There I sat in the chair, cheerfully ready to greet a long day.  Kay checks me in and hands me the lunch order form.  It is Rituxan infusion day and I’m ready to get some B-cells depleted.  Symptoms had begun to return after a lovely remission and I was anxious to get to that point again.

Kay got the supplies ready and prepared to get an IV started.  I had promised myself at home that I would not let her try to stick me again.  Her track record was 0/4.  And my previous visit took two nurses and six sticks to get an IV started.

“Who was the other nurse which the head nurse tried to call last time but wasn’t here?  Can we call her to get the IV started?”

“Oh, she’s really busy.  She wouldn’t be able to come down here for this,” says Kay.  Darn it if I let her try three times to get an IV started.  That’s 0/7 now; and yes, I’m keeping track

Read this post in its entirety:

Living with RA: Infusions, Phlebitis, and Self-Advocacy


I also discussed this situation three weeks ago on the blog in the post Phlebitis after Intravenous Treatment.  BTW, I'm on my 2nd round of antibiotics as the 1st round was not quite enough and the infection noticeably began to grow again.  I have three more days remaining and there shouldn't be any other little infections ANYWHERE in my body now.

Sunday, August 8, 2010

MS Information: In Real Life and Online

I've been a bit quiet lately.  My apologies.  So much going on.

First off, if you haven't opened it yet, turn to page 22 of Momentum magazine.  It is the cover story: "MS in the Information Age: Safe Travels through the Online World."  For the article, the author interviewed three bloggers including myself, the Wheelchair Kamikaze (Marc) and Trevis Gleason.

In reading our comments, suggestions, and quotes, we seem to echo each other on many topics.  One of the questions asked me during the interview was: "If a friend of yours were just diagnosed with MS, where would you send her for information?"

That's a good question and one for which I had an "it depends" type of answer.  Truly, we are so unique and our needs differ at various points along our journey.  Although the personal information which only fellow patients can offer, I admittedly did recommend the big MS organizations as being good sources.

The National MS Society offers a heckuva lot more information on their website than when I was diagnosed.  The educational material they had then had to be mailed to my house.  I probably still have those handouts in a file drawer somewhere.  And I just love the information provided by the MS Trust in the UK.  I especially love the Exercises for People with MS section.  The animated examples are great.

Now the question of what would you tell a friend who was just diagnosed with MS became reality recently.  She and I are both musicians and had several friends in common on Facebook.  I happened to see a comment she left for someone mentioning steroids and having MS.  Then I saw that she lives maybe 5-10 miles from me.  Hi Shannon!

I contacted her and we had lunch last Monday.  Actually I invited her to come with me to my neurology appointment last Monday.  The appointment was with the nurse practitioner who basically cares for me and my MS.  It was a typical appointment and I didn't alter anything of which needed to be shared, even briefly discussing some bowel issues which had come up.

So what would I tell a friend....?  The real response is I would listen.  Simply listen.  And that's exactly what I did last Monday.  Shannon and I just talked.  No emphasis on information online besides saying that I'm kinda involved with writing about MS, which is an understatement.)

It's the person-to-person connection and exchange of information which is so very important.  That's what we do all the time on our blogs and in our communities.  It is what I did last Monday.  And Shannon did the same for me.  Thank you!

Next developments.  As Shannon witnessed my balance stinks.  Feet together, arms out in front, close eyes.  Ha!  It's not a wobble, it's a falling straight backwards while the nurse grabs your arms to keep you upright.  (Do wish that I could see what it looks like)

My numbness has grown from my feet to my bra.  My left foot and back have been buzzing and tingling for over a month now.  (It's only the right side which had done that previously.)  My eyes get blurry and slightly bouncy.  And in the past few days, my face has gone into novocaine mode.

Last Monday I went back to the office after a great lunch and did one gram of Solumedrol (one day only).  Thursday, I got a bone scan.  This Tuesday, I'm getting my annual eye exam.  And next Thursday, I'm getting a set of MRIs done on the Tesla3 machine.

Depending upon the outcome of all these tests, I may be starting pulse steroids soon.  I do have mixed feelings about that.  On one hand, it is undeniable that my MS keeps slowly progressing.  On the other hand, I actually do feel better than I have in quite awhile.  Surely it's due to putting my RA into remission with the Rituxan and probably from the continued weight loss.

Finally, I learned that losing the weight and changing what I eat has not lowered my cholesterol levels.  In fact my numbers are higher than they were six months ago.  Boo!  So my rheumatologist put me on a statin to try to get those down.

Afterwards I learned that both my parents have high cholesterol so I come by it naturally.  Geez, this makes me feel old for some reason.  Maybe it's all those TV commercials connecting high cholesterol with heart disease and aimed at the generation just above me.  Where are the examples of young people (yes I still mentally feel in my 30s) who need to use a statin?  I know I must not be alone.

And now I get to find out exactly what I would do if newly diagnosed with a condition.  Where do I start?

Friday, August 6, 2010

Where to go for Pediatric MS Treatment

As recently as 20 years ago, it was believed that children did not get MS.  We didn’t know then what is known now about pediatric-onset multiple sclerosis.  Even children under the age of 2 have been diagnosed with MS!

But MS is not the only central nervous system demyelinating disease which is seen in children.  In fact, other diagnoses usually come first, just as adults with MS are often given a diagnosis of clinically isolated syndrome before definite MS.

It can be frightening if your child has unexplained symptoms and the local doctors are unsure how to diagnose or treat your child for his/her condition.  If that disease is suspected of being a demyelinating disease such as multiple sclerosis, acute disseminated encephalomyelitis, or other related diseases, then there is good news.

Read this post in it entirety:

Pediatric MS Centers of Excellence

Thursday, August 5, 2010

Insurance Increases

Today I received my annual doom letter from the health insurance company announcing the premium increase for the coming year.  In recent years the increase has been substantial, as much as a 31% last year alone.  This year the increase is only 8%.

Earlier in the summer, I received a survey letter from my insurance company which basically wanted to know if I had any other health coverage from any other sources.  Sorry, nope.

Within the letter below, you may notice that CareFirst offers to discuss other product options which may better fit my financial needs.  Not too tempted.

Although premiums will now cost me $5604 for the coming year, CareFirst is finally covering my medical needs.  I'm not ready to rock the boat just now.  I'm a financial loss for them with Rituxan infusions alone costing $45,000.  Office visit, MRIs, etc on top of that add up.  My apologies.

My out-of-pocket limit is $2500 of which the drug company is covering a large portion.  My deductible is negligible.  Office visit copays are $25 for primary care and specialists.  My coinsurance is only 10%.  Major medical coverage is good.

So after I have become an expensive client and premiums continue to rise, CareFirst offers to discuss other options.  Since none of these other options available carry more than $1500 annual coverage for prescription drugs, I'm satisfied to stay with what I have.  I don't need any surprises.

Like I said - I'm not ready to rock the boat just now.  I've finally experienced what it is like to have health insurance coverage which covers.  I want to enjoy it for a bit longer, even if it costs me.

Dear Member,

The purpose of this letter is to inform you of your premium rate for the upcoming year.  Please take a moment to review this important information.

Your current monthly premium is $431.00.  Beginning 10-01-2010, your monthly premium will change to $467.00.

As a non-profit organization, we seek to provide you coverage at the lowest possible cost and with the least profit margin.  CareFirst expects to earn less than one penny from each dollar of premium revenue we generate in 2010 and this goes into our reserve for your protection.

We value your membership and recognize the financial challenges health insurance premiums pose to you and other subscribers.  Should you be interested, we welcome the opportunity to explore with you other CareFirst products and options that may help reduce your annual premium and better fit within your budget.

.....

Sincerely,



Sunday, August 1, 2010

In Transition

We are getting new spiffy URL's for the blog which will be http://www.brassandivory.org/ for the main Brass and Ivory and http://www.msbloggers.com/ for the Carnival of MS Bloggers.

The transfer is in  transition and you might not be able to get to the blog directly from this post if you are reading in a feedreader.  Manually change the ".org" to ".blogspot.com" and it will work for Brass and Ivory.  Likewise, make a similar change for the Carnival to go to the old address.

Soon this won't be a problem I hope.  However, I do notice that I've lost my "followers" on the sidebar.  I'm not sure how to fix that at the moment, and maybe it will fix itself when the transition is complete.  I don't know.

Please stay tuned and I hope to see you on the other side.  Thanks for reading!!