Wednesday, September 29, 2010

Conflicting Research Regarding Statin Use in MS

For the past decade, small preliminary studies have suggested that statins may be helpful as a disease-modifying treatment or add-on therapy for patients living with MS or those who have experienced a first neurological event. Early results were promising and suggest that MS patients who also take statins have less nerve damage over time. Researchers found that “statins inhibited the formation of lymphocytes and monocytes, immune-system cells which cause inflammation by attacking the body’s nerve cells” in people with MS.

In a small study in 2008, the MS patients treated with atorvastatin (Lipitor) seemed to get worse. Ten of the 17 patients who received either 40 mg or 80 mg of atorvastatin had either a relapse or a new lesion on MRI as compared to only 1 of 9 patients taking placebo who experienced a relapse or had active lesions on MRI. The authors concluded that atorvastatin (40 mg or 80 mg) taken with interferon beta-1a (Rebif) worsened the MS. This was disappointing news.

Read this post in its entirety:

MS and Cholesterol: Will Statin Medications be Useful in Treating MS

Sunday, September 26, 2010

Weather changes, MS seminars, and Fighting a cold

Today is Sunday, September 26, 2010, it is almost noon, and I am technically still in bed.  I'm not sure when I first woke up due to the bladder knocking on my brain.  But I am sitting/laying here with my lap and attempting to catch up on blogs, emails, etc.  It is so cool that I'm able to do this.

The last few days have been extraordinarily busy.  Actually, when have I not been busy lately?  I'm not so sure.  It has been non-stop since the end of August, it seems.

So here's what's been going on in my world lately.

Last Friday (week ago), I went clothes shopping with my Mom.  I hate clothes shopping.  I'm used to nothing really looking good or fitting well.  With my continued weight-loss, it has been over 10-12 years since I've been at my current weight.

It was truly a guess at appropriate sizes for many items and the saleswomen was helpful to go get smaller sizes in several things I liked.  For goodness sakes, I actually walked away with shirts and jackets which are sized 16 or 1X.  What a mind trip that was, especially since I still FEEL very fat.  I even picked out two pairs of pants which accommodated my hefty thighs.  Since the pants were too long and the waists were too big, the store altered them for me (a service which is provided for full-price items purchased there).

I'll be wearing some of these new clothes during my trip to Philadelphia this week and on other trips scheduled this fall.  Such beautiful colors are in fashion in fall...seems to be a good time to gain a new wardrobe.

Last Tuesday, I went back to the store to go bra shopping.  My current bras were all completely stretched out and floppy, providing absolutely no shape or support.  Surprise, surprise...there are now more chooses for ladies like me who are amply endowed in the bosom area.  My size had not changed that much since I was last fitted; only the band size was smaller.  I was fortunate to find not just one bra which kinda fit, but had several beautiful bras from which to choose.  Decisions, decisions.

Thursday, a videographer came to the house to tape videos which will go live on MyRACentral some time in the future.  (I don't know when.)  I had written up "points" for 10 different topics ahead of time and included my personal notes of what were important things to cover.  Well, the camera guy helped to make sure that I mentioned all of the points because I had submitted them to HealthCentral ahead of time.  Next time, I should make it a bit easier for myself and try to be less thorough, LOL.

Saturday (yesterday), I attended the 15th Annual Fall MS Seminar put on primarily by health professionals from my neurologist's office.  Although I had called out to meet other online MSers in the area, I didn't connect with any bloggers.  However, I did get to meet-up with a newly-diagnosed MSer who happens to be a trumpet player.  I got to meet her trombone player husband who plays in the Navy Band in DC.  We know lots of people in common.  After the seminar, the three of us went out for a great lunch.  (Rob had wanted to come to the seminar but has developed a really nasty cold and stayed home.)

I read so many folks who complain that their neurologist doesn't give any credit to the idea that diet or alternative approaches can be helpful in treating MS.  My neurologist is not one of those doctors.  Of course, he does focus on getting patients started on drug therapy early on, but he will just as quickly suggest that you stop drug therapy if it is not working out for you.

The sessions went very well together.  Dr. Allen Bowling (author of several books focusing on alternative medicine and MS) talked about a 5-step approach to treating MS, combining traditional treatments with alternative or complementary treatments.  It was nice to hear a lecture from neurologist who obviously maintains an open mind in assessing what will best benefit the individual patient.

Dr. Simsarian (my neurologist) discussed emerging therapies in the pipeline and the results of recently completed research studies.  Since it was very timely that Gilenya (FTY720) was just approved by the FDA this week, he discussed more about this new oral therapy.  Dr. Simsarian is a funny guy, probably the class clown in medical school.  He did explain that the first dose of Gilenya must be taken at the doctor's office and the patient observed for six hours for signs of serious reactions.

In a light-hearted way, he described patients coming together on a special day to all pop that first pill at 9AM sharp and begin their observation period.  Bring your own chairs to line the hallways.  Wait around for about 6.5 hours - "not much more than a normal visit, if you are one [a patient] who regularly comes to our clinic."  Ba-da-bump.

Next, a dietitian discussed good nutrition for overall health.  Then Michelle Smith, my nurse practitioner, discussed how to get the most out of your medical care.  She provided lots of practical advice which every patient should know from being prepared for your appointments with information and questions, to being completely open and honest with your doctors (and how the information which goes into your medical record is "sanitized" so you don't need to worry about it being in a permanent record), to the idea that if you are wondering whether to call the office about a new symptom or something, then you should certainly call the office.  All good things to hear on occasion.

The final session was led by a neuropsychologist who started by discussing Stress and MS.  She gave practical advice on the role stress plays in life for any of us, including methods to reduce that stress.  She discussed cognitive difficulties which can be caused by being stressed (and not necessarily by MS itself).  Not on the session description, but she discussed the stress which carepartners experience.  About half of her session was aimed at the carepartners and loved ones in the room.  Very nice!

Although the seminar has to be supported financially somehow, and it is the pharma companies which have the money to spend on patient support, the seminar itself was heavily geared at non-pharmaceutical ways of dealing with the challenges of MS.  I personally didn't really learn that much (ok, I learned about one new drug in the pipeline but that was about it).  But I did appreciate witnessing the importance which treating the overall person is the focus of my own healthcare professionals.

I was a tiny bit surprised that during any of the opportunity for questions that nobody attending the seminar asked about CCSVI.  Very interesting.

Tomorrow I am hopping a train to Philadelphia for a conference and today I am stocking up on excess vitamin C and vitamin D.  I started feeling as though I might be catching Rob's cold.  I certainly hope not, but I am going on the offensive with this one.  I even picked up some Zicam in the hopes that it too will help to keep things calmer than they might otherwise be.

OK, now I'm looking at the clock on my computer.  I've spent the past hour working on this post.  Sorry, I didn't give more detailed information on the seminar sessions.  The handouts and my notes are downstairs and I was too lazy to go get them.  :)   Time for lunch I think.

Take care of yourself.  Oh, btw, after a few lovely early fall days here in DC, it was in the 90s Thursday, Friday, and Saturday.  I see that it is now 64 degrees right now although I haven't opened a window nor gone outside.  All these extreme changes in temperature can't be helping me in avoiding this cold which is trying to take hold.  Yuck.

Friday, September 24, 2010

Carnival of MS Bloggers #72

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

The Power of Words and Inner Spirit

by Diana Neutze 
It must be the most consummate
burglar of them all.
At the beginning, the thefts were basic;
walking, dressing myself,
turning over in bed.
But later, it removed my ability
to feed myself, to sing in a choir
and play the piano.
It seems the thieving is systematic;
when I spasm, I either go rigid
like a corpse or curl into a fetal ball;
my very beginning
and my very end are intact;
it’s the life in between
that is being dismantled.

Some weeks ago I had friends around
to honour a young man’s death.
Shubert’s “Winterreise” was sung.
The room was full of beauty and pain;
the human need to give comfort
was expressed by my friends
holding one another in close embrace.

Entrenched in my wheelchair,
like an armadillo,
I sat watching.
I could neither give
nor receive comfort.
The M.S had stolen
my human connectedness.
I was left with only words,
but words were not appropriate.
It was a double grieving
and brought with it the fear
that one day, even my words
might be taken away.

from Pandora's Perspective
I trip

down a corridor darkly

wall-walking the length
and breadth and height
my fingers reach
(when feeling out of sight)
afraid for tomorrow
but searching for
the rest of my life

I may stumble
I may fall
but never will I stop
-- Pandora Deichert

by Laura of Shine the Divine

truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.

got used to it
this summer
as we celebrated my daughter's
bat mitzvah
and traveled to be
with family
and friends
so much joy.

but here I am
once again
peering through windows
foggy from a family's morning
of showers
as they prepare
and leave
for a day at school and work.

and truth be told
my legs are too tired
too weak this morning
to take me even out into the yard
to photograph a single leaf.

so I watch the sun bathing
the trees in gold
from my bed
shuffling downstairs with care
to discover
another pleasing view
through the kitchen window.

truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.

got used to it.

but like the filtered sun-glow
slowly shifting her spot light
from one stand of trees to another
I cannot expect a body, my body
besieged by an completely unpredictable disease
to remain the same from day to day
moment to moment
my physical health
like, everyone's really
is in a constant state of flux
my husband is busy
my children are busy
I am here at home
with the dog
the cats
the blessed internet
the season has changed
and with it my ability
to venture out more

truth be told
I pretend a lot.
at least it feels that way
when I am busy shooting emails to and fro
scheduling appointments and activities
for my family (a few for me)
filling up our calendar
filling in our story
I pretend that I will be able to attend
I imagine that I will go
that I will feel strong
on that day
I'll be there too
with everyone else
and truth be told
sometimes I will

but truth be told
the calendar details
a story that I watch unfold
most often from my bedroom
I have not driven a car in nearly two months
the last *pseudo-exacerbation
left behind myoclonis in my legs
there are days when it does not
there are days when every time I attempt to
stand and walk
my legs do a wild dance
all their own
but will not allow me to move forward
without assistance
will not support me
so I must slowly edge along a counter top
or simply wait
until the shaking
I cannot leave the house unless
someone comes to get me,
takes me

yesterday was spent sending
emails to several people who do not know
my story
they have no idea how exhausting it can be
for me to organize and arrange
schedule and check in with everyone
on the list
and that's as it should be
the not knowing
how could they
they are strangers

and I imagine those who do know
I have MS
simply don't realize
don't understand
that even though I "looked great"
the last time they saw me
dressed well and made-up
because I am still fairly
able to get things done
most days
with my computer
and healthy mind
they don't know
that I am pretending
acting as if
I can do
as though I have the energy
of a typical woman my age
with time on my hands
not working outside my home
how could they know?
I do my best not to make it obvious
I do it for them
for my family
for myself
because I still want to be a part of
not apart from
life beyond the boundaries
of my house.

sometimes I create the foggy window.
sometimes I discover clarity.

but there is sunlight
on my hands
across my chest
as I lay in bed
a rest that
cannot restore
the physical energy
that seems to flow right out my scarred
into my incredibly

truth be told
my mind and my computer
help me to
go out
join in
feel part of
life beyond the boundaries
of my house.
I'm getting used to it.

truth be told
last evening Gordon drove me
to a tai chi class
I sat through it
but moved
in fact it felt as though
I were dancing
as my arms reached out
soaring through space
though my hips and legs
remained bound to a

there were emotions like
annoyance each time the teacher
instructed us to slow down
my body only does slow
then gratitude
because slow is easy for me
an MS gift that brings awareness
to my movements
sadness and jealousy as I watched
the other women
walking across the floor with ease
but those feelings were fleeting
quickly turning to admiration
and joy
the energy in the room
with the grace of their movements
and my own

and tomorrow night my friend Viv
will come and stay over
she will take me to book-group
I'll be with women friends
join in
be part of
life beyond the boundaries
of my house.
20 months of practicing
home bound/gnome mound
I'm getting used to it.

another secret
to reveal
truth to be told
as much as I want
to go and do and be a part
of life beyond these walls
I am often hesitant to
leave the safety
of our house
to be seen
moving awkwardly
to be heard
on days when
the lilt of my
MS acquired
foreign accent
is not pleasantly exotic
because my mouth and tongue
are not receiving the information they need from my
to work together in a coordinated
and no one
not even
can understand my speech
on those days.

and the consequences of going
and doing
are a day or so of "losing ground"
as I float in my bed
exhausted from an excursion
like today.

this is not a page filled with
"woe is me" words,
please don't mistake it as such
this is simply what is.
a sharing of my experience
as I reflect upon my life
this morning
my goodness it's afternoon already.
my truth for today
with a small "t".
if my circumstances were different
I might not have time to write
to rest and see my story clearly
to listen to the stirrings of my
with it.

this is what is.
this is where I'm supposed to be in my life
right now
on this

I trust that this is

I am grateful for the quiet in the house
for this time of reflection
for the range of emotions
rising up and settling back down
like my belly
my chest
as I breathe.

what a gift it is to feel so much, to be able think and shift a view point, view the earth's beauty through my windows and capture a glimpse of it in photographs that can be shared instantly across the world via the internet.

truth be told
I feel blessed.

*I have 2 neurologists, both wonderful. I visited the first one in August after 48 hours of an increase in my symptoms and my wonky leg thing started. She saw no changes in the mri and told me it was just a "pseudo exacerbation". Don't worry, mri looks great. The other doctor who saw me five weeks after the first one and was privy to witnessing myoclonis in action when I stood up, said it was more likely an actual "exacerbation" that didn't show up on the mri because it occurred in old scars, but again not significant enough to change treatment plans at this point, because (thank God) the mri results look unchanged from 6 months ago. Tysabri seems to be working to slow the progression of disease.

This concludes the 72nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 7, 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, October 5, 2010.

Thank you.

Comments for this post.

Tuesday, September 21, 2010

New Drug and Pharma Promotional/Support Materials

Today is the day.  The FDA will approve FTY720, Fingolimod, Gilenia, or whatever the final brand name will be, as the first oral disease-modifying drug for relapsing-remitting multiple sclerosis.  Trials are still underway testing FTY720 in primary-progressive MS.  I say that the FDA will approve the drug because I can't imagine that they won't.  More information will be available later.

The New York Times has a good article about the FDA's approval of Gilenya.  Yep, that's the official new spelling.  Bloomberg has an article which discusses the approval and mentions the "race" with Merck's cladribine.  Actually all the articles I read (some obviously slapped together) mentions other anticipated oral drugs for MS.

So if all goes smoothly, Gilenya should be available within months...maybe even by the end of the year

Over the weekend, I read a PR blurb about a new exercise program, Fitness with Katrina, released by MS Active Source® and Biogen Idec and Elan Pharmaceuticals.  Biogen is the pharma company who produces Avonex, and Biogen and Elan co-produce Tysabri.

Earlier this year Biogen and Elan released a yoga program/DVD called MyMSYoga.  This program held four in-person classes with Baron Baptiste, the latest occurring in May.  It doesn't appear that any new information has been added to the website since then.

The idea of producing exercise or yoga videos to distribute to MS patients is not new.  In fact, I have a couple already.  However the distribution method is different.  Previous DVDs were included in drug information packages for newly-diagnosed patients, or they were available at at company's information table at MS-related seminars.

One thing I've been telling folks, when they ask, is that pharma companies should use some of their resources to support ALL MS patients regardless of whether they use that company's product or not.  I also have been saying that patients really need support and assistance in their in-person lives.

Maybe MS Active Source® (from makers of Tysabri) is establishing their niche by producing this material for wide distribution.  It is good marketing to be sure.

But is it a good service for patients?  I'd like to hear what you have to say.

Oh, and here's a little side story.  Back when the yoga video was released, I received an email from a PR person asking if I would like a copy.  The only reason I was sent this email is because I'm on some pitch-to-me healthcare blogger mailing list.  (I didn't really ask to be on any mailing list, some larger PR company put me on the "list.")

I didn't respond to the email but I did sign-up (as a regular patient) to receive the DVD.  Well, the DVD never came.  I waited and waited.  Finally I sent an email to the original PR person and said that I would indeed like to see a copy and that I had not received one through regular channels.  He apologized and sent me a package immediately.

Within that package was included a copy of several adaptations to yoga positions which could accommodate various levels of abilities.  I enjoyed the hand-out just as much (or more) than the DVD.

A couple of months later still, I did finally received the DVD through the regular route with great apologies that due to a glitch in the system some of these items had not been previously mailed.   There was no print-out or booklet containing additional yoga information included in that mailing.

If I found that extra information to be useful, wouldn't most other patients?  Wouldn't including the additional material be providing a service beyond their call of duty?  Perhaps this hand-out was provided at the four in-person classes led by Baron Baptiste.

It does make me, as a patient, feel a bit more appreciated as a person when companies demonstrate that they understand I am more than my disease or treatment of choice.  I am somebody who focuses on overall well-being (at least I should, lol).  So I signed up to receive this new exercise video.  Perhaps I will gain some motivation to move more.

That's good and worth it, right?

Monday, September 20, 2010

Updates and an Unedited Brain Dump

Hi folks.  Today there's not going to be any well thought out blog post.  Not even a link to a previously written blog post at HealthCentral.  Today I'm just going to do a brain dump.

This fall is going to be extraordinarily busy.  The events are just about to begin happening almost non-stop.
  • I've been working on writing some outlines/scripts for some videos I will be shooting for HealthCentral on Thursday.  Preparing for 10 videos has taken alot of time and thought.
  • Saturday is the annual fall MS conference which is organized by people from the neurology clinic I attend.  Speakers are flying in from Colorado and elsewhere I believe.  (I'd have to look again to find the details.)
  • Back in April, I off-handedly submitted a proposal to speak at the upcoming ePatient Connections Conference in Philadelphia.  I was approached in July to give a PechaKucha talk at the conference.  This type of talk is structured with only 20 slides which are advanced at 20 second intervals.  It is timed and there's no room for dilly-dallying.  Slides were due at the beginning of September and it took me awhile to get those the way I want them. 
  • The ePatient Connections conference is next week!!  I need to practice my talk to get the timing right.  I also need to attempt to memorize some of my material so as to seem polished.
  • I've been losing weight.  44 pounds so far since January (as of this morning).  My clothes don't fit.  I haven't shopped for nice clothes really in years.  I went shopping on Friday night with my mom.  Although I hate clothes shopping, I was happy to find several items which look great on me.  I'm even having two pairs of pants altered for length and one taken up in the waist.  My mom was even more sweet to treat me to the clothes.  Whoo hoo!!
  • In October, I'm traveling to visit friends in New Jersey.  Then the following week I'm headed to Las Vegas for BlogWorldExpo2010 where I will participate on a patient panel.  Our discussion should be very interesting.  It questions disease awareness, patient advocates, and healthcare companies who approach them for projects or sponsorship.  Should be good and I will finally get to meet some of my blogging companions.
  • In November I will do the Rituxan infusions again.  This time at a different hospital and hopefully with a better experience than last time.  BTW, I did report the development of phlebitis to the nursing team at my previous hospital.  
  • Also in November, I will be going up to New Jersey for another conference.  This time we are speaking as "health activists."  It should be a good experience.  That time, I am planning to take the train up early in the morning, speak at the conference in the afternoon, and come home in one day.  Very exhausting I'm sure.
  • During all of this time, I am also fitting in regular teaching and writing, as well as monthly pulse steroid infusions.  I might skip the one in November since I'll already be getting steroids with the Rituxan infusions.  Something to consider.
  • And then before you know it, it will be Thanksgiving, December, and the Holiday season.  Phew!  I almost might as well be wintertime.  (Not really, lol.)
So anyways those are my thoughts today.  I should probably go eat some lunch before I start teaching in 45 minutes.  Tomorrow, I need to go shopping again and get a new bra.  The new clothes will look even better if I have undergarments which fit.  No more of this saggy stuff.  :)

I'll talk to ya'll later.

Saturday, September 18, 2010

Making Life Decisions

A link to the following "Dear Carolyn" column showed up in my Google Alerts this morning. I find the line of questioning of the submitter to be interesting. It is true that many people are afraid of chronic illness and people are definitely afraid of multiple sclerosis.  Heck, people who have MS are often fearful of the future too, but if we have the unconditional support of a loved one, the road will be less difficult.  This is true for any challenge which arises on this journey called life.

So what do you think of the question the submitter poses below?  In what extent should chronic illness factor in on the decision to spend your life with someone?

Friend is setting self up for difficult road ahead

Dear Carolyn:
          A friend of mine is getting married to a woman who has multiple sclerosis. His family is very upset by this fact (along with a few other issues they have with his bride-to-be). Should something like having a chronic illness even be a consideration when choosing the person to spend the rest of your life with? I wonder if my friend is setting himself up for a very difficult road ahead.

Carolyn: Of course he is. And, of course a chronic illness should be a serious consideration -- your friend would be doing this woman no favors if he didn't take her prognosis heavily into account -- but for many people it's not a make-or-break consideration.

The way you pose your question, I'm not sure whether the "difficult road" you anticipate is the multiple sclerosis, or the disapproving family. Either way, you're right. However, there are plenty of people who think the toughest road would be the one traveled without the person they love.

Now, it's not as if illness spins jerks into gold; if your friend's family has legitimate concerns about the fiancee's character, then I do hope they'll spell this out for him.

But if your friend feels, eyes open, that his fiancee is the one he wants at his side, and if his family's objection is to her illness (with the "few other issues" thrown out there as a fig leaf), then all I can say is, shame on them. Even though I utterly loathe that expression.

E-mail Carolyn Hax at or write to her care of The Washington Post, Style Plus, 1150 15th St. NW, Washington, D.C. 20071.

Friday, September 17, 2010

RA, Depression, and Suicide

How does suicide relate to living with rheumatoid arthritis?

We experience chronic pain at a higher rate than the general public.  We experience depression at a higher rate than the general public.  When the disease is active and chips away at our quality of life, we can begin to feel hopeless or anxious about the future.  Living with a chronic progressive, painful, and debilitating disease is not easy.

But it’s more than just saying that RA and depression go hand-in-hand.  In a 2000 study, researchers found that depression associated with progressive physical (neurological) illness may lead to suicidal ideation and rheumatoid arthritis is the most prevalent chronic inflammatory musculoskeletal disease.

Their studies indicated that overall almost 11 percent of RA patients experience suicidal ideation.  However, of those patients reporting depression, 30 percent experience suicidal ideation.  See “Suicidal ideation in patients with rheumatoid arthritis: Research may help identify patients at high risk.”

In another study, researchers found that comorbid depressive disorders preceded suicides in 90 percent of the female RA patients.  Before their suicide, 50 percent of the female RA patients (vs 11 percent of the male RA patients) had experienced at least one suicide attempt and the method of suicide was violent in 90 percent of the RA females.  See “Suicides in persons suffering from rheumatoid arthritis.”

Read this post in its entirety:
Rheumatoid Arthritis, Depression, and Suicide Prevention

Thursday, September 16, 2010

National Cholesterol Education Month

High blood cholesterol affects over 65 million Americans and I am one of those people, as are each of my parents.  Often genetic, high cholesterol is a serious condition that increases one’s risk for heart disease. The higher the cholesterol level, the greater the risk.

The scary thing with cholesterol is that it can be high and you may not even know it. Lowering cholesterol levels that are too high lessens your risk for developing heart disease and reduces the chance of having a heart attack or dying of heart disease.

September is designated National Cholesterol Education Month by the National Heart, Lung and Blood Institute (NHLBI).  It is a good time to learn about cholesterol and lipid profiles, to get your blood cholesterol checked, to take steps to lowering it if it is high, and to learn about food and lifestyle choices that can help you reach your personal cholesterol goals.

Read this point in its entirety:
MS and Cholesterol: The Basics

Tuesday, September 14, 2010

Revisiting My Weight Loss Journey

I’m laughing at myself this morning after stepping on the scale an extra time.  I find it ironic that my weight almost always drops from Sunday morning to Monday morning.  Why is that? 

Probably has more to do with what I ate on Saturday than anything else.  And this past Saturday, I had a great meal of grilled grouper, cauliflower mash, and asparagus.  To top off the meal, I splurged by sharing a deep dish apple pecan pie with ice cream.  Hey, it was in honor of my birthday which occurred this past week.

The difference in numbers on the scale this morning make it so very tempting to use the lower weight.  But if I did that, then I would be straying from the pattern I had set-up to use a consistent day/time each week as a measurement of changes over time.

It’s a good idea, but honestly, part of this is my mild OCD talking.  “We” must keep things the same and abide by the record-keeping “rules.”  But really, it’s just my self-imposed rules which are in effect here.  So with that, this week’s weight is 232.1 pounds instead of Monday’s 228.4 pounds.

Is 3.7 lbs such a big deal?  Heck, yah!!  It’s significant, not only because that’s a big different in poundage, but the lower number is clearly over the 15% loss line on my graphic chart.  Actually, it represents a 16% weight loss since January 2010!!

Read this post in its entirety:

Obesity and Weight Loss: How are you doing it?

Monday, September 13, 2010

Calling all MS Patients and MS Bloggers in Virginia, Maryland, and DC

Do you live in Virginia, Maryland, or Washington, D.C.?  
Do you have MS or want to learn more about MS?
Come to the 15th Annual Fall MS Seminar 2010 in McLean, VA

Also, I would love to meet any MS bloggers who live in the area as I will be attending.  Afterward the seminar, we could plan to eat lunch.  Definitely, introduce yourself!!

Multiple Sclerosis: A New Decade
Presented by
The Neurologic Disease Foundation
Saturday, September 25, 2010
8:30 am - 12:30 pm

7801 Leesburg Pike
Falls Church VA 22043

Alternative Medicine, Complementary Medicine and MS
Denver, CO

MS Medications in the Next Decade
Fairfax, VA

Focus on Nutritional Health
Mary L. Hunt, MS, RD
Fairfax, VA

Maximizing Your Medical Care
Fairfax, VA

The Stresses of Coping With MS
Fairfax, VA

Register by September 17
call Frank at 703-876-0836
or email

Please leave your name, address, phone number, email address and the number of people (including yourself) who are attending.

Check-in Starts at 7:45 am
Continential Breakfast, Beverages

Dr. James Simsarian and D. Michelle Smith are members of my neurology team.  They are associated with the Neurology Center of Fairfax (NCF), but this seminar is NOT limited to patients of NCF.  It is open to ALL who wish to attend. 

New contact information registration is included above. 

Saturday, September 11, 2010

Kitty on the Loose

Oh boy, it seems like the days have been filled with so much going on.  The studio is completely painted (has been for a few days), but I haven't put things up on the walls just yet.  Furniture is all in place and I took the opportunity to rearrange some items.  I like it.  I promise pictures sometime in the future.

On a more somber note, last Saturday evening, my cat Oscar sneaked out of a window in the studio.  I have a portable air-conditioner which must be vented out a window.  Well, my windows are not of the normal double-hang type.  Instead, they swing open and the screen is on the inside.  I made a hole in the screen ages ago, but it has gotten larger and larger over the years (with some help from some felines I believe).

Well, I came upstairs for a break and dinner and failed to close the window.  Oscar was on the couch when I came upstairs, but when it was suppertime for the kitties, he was nowhere to be found.  It's possible that we did see him on the driveway under a car, but the cat ran off before anybody could lure him out.

I thought that Oscar would hang around and be peeking in on us during our painting sessions on Sunday.  Unfortunately, he has not been spotted.  We put out food which 'somebody' ate Sunday night.  Put out food on Monday night and missed spotting our visitor.

Tuesday night, I sat on the porch with a can of food, took a long time (and with much great noise) to open the can and let the aroma spread., then noisily put food on the plate.  Waited and waited, but no Oscar showed.  I finally came inside and left the plate on the porch, thinking that I would hear the plate scooting around if he came to eat dinner.  A cat was spotted, but it wasn't Oscar and this other guy cautiously scadattled as soon as he noticed two cats and two humans spying at him from inside the glass storm door.

We've visited the local park several times.  Might have spotted him at 1am Friday morning, but on the opposite side of a creek which goes through the neighborhood.  This cat had runoff before I got a chance to get closer to him on the right side of the creek.  Last night, I spotted a different cat, but it was definitely not Oscar because I saw a black stripe around that guy's neck.

Part of the neighborhood has been canvased door-to-door (yes, I found the strength to do this).  And posters have been placed on telephone poles and stop signs.  Local shelters have been alerted and nobody has a little guy fitting his description.

Oscar is the kitty who came to us as an abandoned stray 15 months ago.  He had already been neutered and was obviously a family cat when we brought him in.  So he's lived on the streets before.  He's a smart cat and certainly knows where he was two other kitties whom he likes to play with, three humans who give him lots of love, and plenty of regular meals.  As long as another animal or a cat hasn't got him, he's doing ok, I'm sure.

But he sure is missed around here.

Thursday, September 9, 2010

Carnival of MS Bloggers #71

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

Take Time in Life with or without MS

by Laura of Shine the Divine

Heart shaped stones we found walking along the Ashtabula River.

SLOW DOWN! scream my neurons. And what choice do my limbs, my voice really have? None. My mind has a choice to make however; be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.
We are back from our last bit of traveling for the summer. In my opinion, Northeast Ohio is the epitome of slow living.
Rosie driving great-grandpa's 'ol Case tractor with Gordon's guidance
Lily Pond @ my brother-in-law's house
Gazing at the Ashtabula river from one of many covered bridges in Ashtabula County, OH

Friendly clipeared/hornless goat at the County Fair, Jefferson, OH.
So it was sort of ok that my MS decided to kick it up a notch and say "hello, ummm, you know you still have a chronic illness, right?" before we left last week and on and off throughout our visit.
On our way home we stopped at Niagara Falls and enjoyed the majesty of the rushing water.
Gazing at the falls is a timeless experience.

Yet another reminder that sometimes it's best to slow down and witness the beauty we miss when we are rushing.

Driving home from Ohio through New York and Massachusetts gave me plenty of time to appreciate the country side and the skies (it's a 12 hour trip, we brake up into two days.)

Of course I wish that now that we are home again my MS symptoms would kindly knock it off already!

And with this thought I must gently remind myself about my choices: be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.

Sitting peacefully seems like a pretty good idea. I'm feeling deep gratitude as I write this, because truth be told, I am still getting out a bit with a commitment to rest in between. (Haircut yesterday and shiva call for a friend.) Mostly I tell people I'm feeling well when they ask, because who wants to hear "Well actually I feel like crap, but here I am anyway:)" and honestly, overall, I DO feel well much of the time...So I don't think this is another exacerbation in progress, or maybe just really minor one? Because despite the difficulty with speech and walking on and off (can't access words, or make my mouth form them and release them, plus the accent is back and shaky legs that don't want to support me or lift up and move and then just as mysteriously my neurons "come back online" again) Most likely just MS being MS with surprising ups and downs. I know my doctor says this is NOT supposed to happen on Tysabri, except for heat or exertion creating pseudo exacerbations, but I dunno, I've been doing my best to stay cool in our air conditioned bedroom and except for one day when I walked 2 miles a few weeks ago (that was amazing!), I don't think I'm exerting myself. Unless of course hanging out with my teenage daughters, visiting relatives, being pushed in my wheelchair when it's too hot to walk and sitting in a car for hours on end counts as exertion? Maybe. I'm trying hard to figure out the balance of rest and moving through my life. So we'll see. I have an MRI scheduled for Friday evening. (Needed one anyway because of being on Tysabri, so the timing is good).

Thank you everyone for your thoughtful comments, prayers and well wishes. Although I've been horrid about responding, know that I read everything you write and feel immense gratitude for your support.

gentle steps,

by Maryann

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

A new website/blog for the MS community.  "These are stories by MS patients for others with MS, their caregivers, friends, and family. This blog will tell the stories of what it's like to have MS--whether they are happy, sad, courageous, or ordinary stories. Become a participant and join in the story telling by contacting Ann at
This concludes the 71st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 23, 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 21, 2010.

Thank you.

Comments for this post.

Thursday, September 2, 2010

Exhausted, Sweaty, and Excited

I've been scarce around here lately.  My apologies.  It's been crazy busy around my music studio.  Since I take off a few weeks from mid-August to after Labor Day for a break from lessons, this is the time of year to try to get things done if desired.  One of those things is painting my studio.

We've been in this house for 10 years and not once have I repainted the studio which is actually an add-on to the side of the house.  The current color is beyond yucky to me now (pale pink) and it just seems dirty and drab.  Well, we're gonna change all that.


It is requiring a lot of preparatory work to even get to where paint can go on the walls or ceiling.  Last week, I spent a couple of days deciding for sure what color I wanted and where for it to go.  I have 5 little cans of sample paint which helped in making that decision.

Next task.  Clear the rooms of enough stuff so that the big stuff can be moved into the middle of the rooms and away from the walls.  (My music studio consists of two adjacent rooms with an open doorway between.)  
  • File copious amounts of music which have been left out for a year.  Empty contents of one bookcase and remove from area for safe keeping.  Remove pictures and posters from walls. - Done! 
  • Vacuum rugs, floors, and shelves.  Roll up and remove one area rug. - Done!
  • Remove most chairs, tables, and lamps.  Remove curtains from windows for cleaning. - Done!
  • Move big furniture, including grand piano, to the middle of the rooms. - Done! 
  • Vacuum newly-exposed areas. Then vacuum walls and ceiling. - Done!
  • Clean around window frames and sills. - Done!.
  • Access water damage to ceiling. - Done!
  • Patch joints in ceiling and repair any damage which is revealed. Allow time for joint compound to dry (24 hours) between applications. - To Do
  • Mop floors around walls and thoroughly clean crude from floorboards. Figure out what repair, if necessary, must be done to damaged floorboards. - To Do
  • Order new area rugs.  Design already chosen. - To Do
  • Tape off floor for painting. - To Do
  • Cut in ceiling paint, let dry, and tape off for colored wall paint. - To Do
  • Frame oil painting which has been rolled up for some time.  Music-themed and wonderfully colorful. - To Do.
  • Shop for mounted canvas upon which to paint something abstract to put in waiting room.  Can be anything with the huge selection of paints I have sitting in the "paint closet." Time to get rid of the posters I have had since high school/college. - To Do  
  • Go get paint for walls.  Paint walls with at least two coats for rich color. - To Do
  • Tape off walls (after thoroughly dry) to prepare to paint the ceiling. - To Do
  • When all done with repairs and paint, move furniture back where it belongs. - To Do
  • Attempt to remove old, flood-damaged rug from beneath piano and replace with new area rug.  Hopefully this will go smoothly with some additional muscle helping. - To Do
  • Replace belongings in rooms and make it look nice and tidy. - To Do
  • Go shopping for new light fixture/fan for piano room.  These eyes are getting old. - To Do Later
  • Figure out what to do about the strips of exposed concrete floor where tile was removed when the sump-pump was installed a few years ago. - To Do Later
  • Order new outside door and have installed. - To Do Later
Basically, I'm going crazy and I'm exhausted in the process.  I went for pulse steroids this morning and will probably be up late tonight.  Maybe I'll actually get to come around and read everybody's blogs.  Then I really need to write some articles for HealthCentral; I'm behind.  :)

So, I'll see y'all on the other side.  And if I don't talk to ya sooner, I'm turning 42 on Tuesday.  Happy Birthday to me!