Saturday, March 31, 2012

Donate Your Brain for MS Research

As a person living with multiple sclerosis and rheumatoid arthritis, my options for organ and tissue donation are limited.  Earlier this week, I posted regarding organ donation in general and RA.  Many of the same rules which apply to RA patients also apply to MS patients.  In general, we cannot donate bone marrow or most tissues for transplantation.  The ultimate donate-ability of our organs would be determined after our death by the organ transplant team.

The donation of blood, organs, and tissue help to save and improve the lives of countless people each year.  However, the donation of brain and spinal cord tissue may hold the key to curing multiple sclerosis one day.  Persons living with MS, and their family members, may choose to donate their brain and spinal cord tissues, spinal fluid, other specimens to an MS-specific tissue bank.  Planning ahead is vital as brain tissue must be recovered and prepared within four hours after death to be suitable for use in research.

Read this post in its entirety:

Multiple Sclerosis Tissue Donation: Your Brain on Research

Thursday, March 29, 2012

Carnival of MS Bloggers #111

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

Coping, Cognitive Issues, and Social Security
by Maris Mohr

I think I woke up this morning,

or did I sleep at all? . . .

The mirror reflects empty space –

nothing to reveal my wondering gaze.

Even in a room full of occupied seats

I feel unconnected to everything

Drifting ~~~~ between what I think

I want, need

Ending misunderstood, rejected

Feeling dejected, facing a raging wall of

why it can't be

Giving in, my oblivion strengthless

Arguing on no longer in my core

Knowing there's no point in disrupting

MY equilibrium, OUR harmony

Neutral being the safest gear for my survival. . .

© Maris B. Mohr

by CJ of my MonSter stories

Unlike a bad dream, it doesn't come only when I'm sleeping, it doesn't go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I'm busy with the "stuff" of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real...even if you can't see them.  Unlike a common cold or minor injury, it doesn't happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you've ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating.

I'm thankful that, at least for now, I have the relapsing-remitting type, where the MonSter attacks and one or more areas of cognitive and/or pyhsical functioning is affected for a period of time, then gradually resolves, although often not completely, so that I'm left with some residual pain or loss of function.  Some of the symptoms I've had include vision problems and eye pain, vertigo and imbalance, difficulty walking, confusion, disorientation, difficulty processing information, slowed thinking, difficulty with speech,  memory loss, numbness/tingling/weakness, burning sensations, spasms, reduced fine motor skills such as writing, unexplainable indescribable fatigue that can strike and suddenly render me immobile, pain - including what I describe as extreme "lightning bolt" type pain that takes my breath away and can make me collapse onto the floor.

Please understand, although altering lifestyle and making some changes can help, these cannot cure MS.  Rest is not a cure.  Less stress is not a cure.  More vitamins or supplements is not a cure.  Better weather is not a cure.  Currently there is no cure.  There are several treatments being used that seem to slow down the progression of the disease and/or reduce the severity of the attacks.  In my opinion, most of the treatments that are being used are experimental at best.

It is my hope that by writing about my own personal experiences, readers will have a better understanding of MS, and some might also better understand me as a person and perhaps have just a little more tolerance and compassion.  I would not wish this MonSter on anyone, but MS is no respecter of persons; it could choose you or one of your loved ones next.

by CJ of my MonSter stories

Most folks in the "civilized" world are familiar with the objects in the above photograph. And most people would not find the objects the least bit intimidating or frightening. I've never had a problem with them...until yesterday. You see, yesterday I was feeling a little "off" from the time I awoke and got out of bed. I was a little unsteady on my feet, and I noticed I was having some difficulty keeping my thoughts together and I was having trouble making even the smallest decisions.

After taking much longer than usual to make my bed, put a load of laundry in the washer, eat breakfast, and wash dishes, I knew I needed to get a shower and get dressed. But I was a little leery of trying to stand long enough to finish my shower, so I decided it might be best if I just took a bath instead.

Well, everything was going along okay and it actually felt good to soak for a few minutes after bathing. The problem arose when I decided it was time for me to get out of the tub. I sat and stared in front of me at those shiny silvery objects that are shown in the seemed like it was for an hour, although it was perhaps only four or five minutes. As I sat and stared, I became a little frightened as well as frustrated...because I could not remember what I needed to do in order to drain the water from the tub.

No, I haven't suffered a traumatic brain, I don't have Alzheimer's disease (as far as I know), I didn't have a stroke, etc. I was having an acute attack of my brain "short-circuiting", something that happens to me fairly frequently as a result of having MS (multiple sclerosis). These particular episodes usually don't last very long, but I do have some permanent long-term as well as some short-term memory loss. The attacks can occur at any time, but tend to be more frequent if I am fatigued, emotionally, or mentally stressed, too hot, too cold, or have any type of illness going on. This is just one of the many symptoms I have with this cursed disease.

Why am I telling you this? Because I want to help you understand what is happening to me...why I am constantly keeping lists or a journal, why I sometimes seem to be staring blankly into space, why it sometimes takes me longer than you think it should to answer a question or complete a simple task, why I say "no" or "not now", or "I can't" a lot more often than I used to. On the outside I may look "fine", but on the inside I am often a "tangled mess of misfirings and disconnected electrical impulses".

So, if you can accept me as I am with all the changes that are now happening and doubtless will continue to take place (unless there is a miraculous cure), I welcome you into my life. If not...if it frightens you or it's too much for you to bother with or handle...then you will probably become suddenly silent, quickly disappear, walk out, or just slowly back away as many others have already done. Either way, I thank you for listening to me.

by Laura of Shine the Divine

On Tuesday I met the bogeyman

she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
I wonder
what’s her story?

Anger, frustration, sadness, grief, expressed through sarcasm, I admit this is where I am sometimes, sometimes lately. Sometimes it gets a little crowded, a little ugly and uncomfortable in my mind. I’m aware that this tumult is happening, arising from fear, from disappointment. I recognize these emotions for what they are and see what is inside, what is outside, what is changing, oh everything is always changing and that is a comfort. But still, I get lost in myself sometimes. I momentarily forget that it isn’t all about me, well of course not. Life is about US, and so much more. I know this, I do, and still some days, some days lately, I lose my way; tense, snarky, suffocating thoughts spin round and round and choke me, filling my throat with words I should NOT say, come out garbled anyway, until I finally remember; just exhale and listen. I hear my own agitation ricochet, a pinball ringing bells, lighting lights, through a maze of words, words, words, so much noise in this dark cave my mind can become, points I score are pointless, they only create more tension so that I must release the spring-loaded thoughts; just exhale. I inhale fully and then exhale again, a deep sigh of forgiveness. Compassion, love gratitude, rush in with a tide of tears. I’m only human. And only human is enough. It is all I know how to be. It is all that I am, that we are. And yes this is about US, a story told from my perspective on a particular day, but as I said, it isn’t all about me, not really; this is a story about life, it is about all of us, and so much more.

First timer at the Social Security office; my mind chasing its own tail, looking at all the other people in the waiting area, anger flashed “What am I doing HERE?” My husband went up and took a ticket. We sat listening to the numbers being called, a grayed—where is the hand sanitizer, I know it is in my purse somewhere—kind of space. The ticket made me think “bingo hall,” not that I’ve ever been in one, but I’d never been in a Social Security office either. Three rows of chairs lined up, linked together, no tables —was our number "A34" lucky??? And a large silent TV with S.S. info-mercials, alternating English/Spanish subtitles, a continuous "easy-listening" garageband music loop that I was certain was playing subliminal messages ("get out while you still can") or would put me in a coma from utter repetitive boredom ('irritating-listening" for me). All the while denial, that sleeping dragon stirred —“I don't belong here with these three pony tailed, war vets, these two mothers with runny nosed toddlers wrapped around their plump legginged legs —round eyed cuties playing peek-a-boo with the strange looking lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller), the old man who looks so tired and doesn't seem to understand what the annoyed woman in the cut-out window keeps repeating to him (repetition a common theme in the room), the twenty-something kid who couldn’t possibly have showered today or washed his jeans in at least a month if ever. It wasn't that crowded —and then one little girl forgot to be shy and started talking to her Mamma about her cell phone (her mother's, but she was pretending to be grown-up), and I heard my toddler voice. My MS impaired toddler voice thrown ventriloquist style escaping through her tiny rosebud lips. Maybe she was two and a half, three tops; she was easier to understand than me, the lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller) —and tears leaked out of my eyes, slid down my face, rained on my jeans, softening them so seeds of compassion could embed themselves in my soul-soil; tender blossoms of love at the ready, just below the surface.

I am every single one of these individuals. They are me; we are ONE. We are all living life, decaying hollowed hallowed tree trunk people, silvered, surviving through challenges we didn't expect. We are humans who need help. I am a human who needs help. I worked for as long as I could, except when my kids were really small. I can't any more. Not outside our home. I do what I can when my voice allows over the phone, I'm a good listener. I create meditation podcasts that I offer for free, because it is a struggle for all of us living with chronic illness first to be able to get to a class, second to be able to afford it, and if someone has a little extra to donate, that's great, I appreciate it but don't really expect it.

I paid into the system, pray into heaven right here, the Holy Essence residing in my heart. With our first child about to go to college in the fall, and the high cost of medical care, our family, needs income from me too. We are a multi-illness health insurance company’s worst nightmare family, and arch enemies apparently considering all the headachy “NO we still don’t have any other health insurance than yours. NO our 15 year old daughter doesn’t have her own top secret health insurance coverage beyond what we her parents provide through your company. What do you mean you will cover the injectable medication but not the syringe and we need a separate prescription for the syringe that you won’t pay for? How exactly am I supposed to give this medication to my wife that she was supposed to have last weekend but you didn’t send it until now-sans freakin’ syringe???” phone calls. These are just a few highlights from this past week’s health insurance shenanigans. I'm sure this is familiar to many of you too.

I hope that my Social Security Disability Insurance application won't be rejected. And I understand that it might be. That happens to a lot of SSDI applicants. People I know, and they have to drop their dignity again, go down to the dingy office in their city or town again, and sometimes a third time again; months and months and months of waiting to be judged "sick enough" and deserving of the money that they paid into this failing system. It has been three years since my official diagnosis; four years since I was last able to actually go to work. So for all of my family members and friends who have been telling me to go do this thing (“its so easy, they’ll help you, I’ll drive you, you are entitled”) I did it. I pulled together the courage, swallowed my pride and with my husband pushing my chariot rolled through the damn door. Ironically one of the blue electric handicap accessibility door buttons didn't work, so one of the vets opened the last door into the building for us. Was it a sign?? No, this happens all the time.

You see, I wanted to believe that I would get better, be able to drive, work again at a real job. For the past three years I really, really wanted to believe that, but remission for me is like the tree bark in the photo. Mostly I'm still standing, I even look good some days, but there are missing pieces in the myelin that is supposed to protect my nerves and carry messages from brain to muscles and vital organs, and I'm not going to be how I was. I think I lived through THOSE remission years already, and now there is too much damage to repair after new lesions form or old ones get bigger. So, Ok, I get it. It isn't going to happen. That part of my life is over. Done. Gone. This is how it is today. Tomorrow will be different. And so it goes.
On Tuesday I met the bogeyman
she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
I wonder
what’s her story?
I left heart broken with grief swirled into twisted relief. Not bitter, not sweet, metallic; perhaps that’s the taste of it? I don’t know how long we’ll wait, if I’m sick enough to qualify for benefits. What strange words to write in the same sentence, “sick enough" - "qualify" - "benefits.” But the first part of the deed is done.

We went out for Indian food at my favorite buffet to "celebrate" this big step toward fuller acceptance of our shared life. We were hungry and it is on the way home. The waitress gave me her chai recipe (I didn’t know until I complimented her on how much I love it, drinking my second cup, that she is the one who makes it); hers is the best in town. If only I could walk downstairs, I'd make myself another cup. I think we have the ingredients. Chai in Hebrew means Life.

I am ever so grateful for the beautiful souls surrounding me in that waiting room, softening my own soul-soil, planting seeds of love, grateful for the bogeyWOman who helped me release my fear through her kind demeanor (because that is what pride often is, fear hiding behind pretentiousness.) Here's to Chai, just as it is, Holy and torn through with gaping holes, difficult and suffused with kindness, imperfect and whole. This is our story.

This concludes the 111st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 12, 2012. 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, April 10, 2012.

Thank you.

Tuesday, March 27, 2012

Can I Donate My RA Organs?

Who can be an organ donor?

Anyone, regardless of age or medical history, can sign up to be a donor, however anyone younger than 18 must have the consent of a parent or guardian.  Do not assume that your age or medical history will exclude you from becoming a donor.

To be a living donor, you cannot have high blood pressure, diabetes, cancer, HIV, hepatitis, kidney disease, or heart disease.  Living donor candidates should be in good physical and mental health and at least 18 years old. 

For donation after death, a medical assessment will be conducted to determine which, if any, of your organs can be donated.  If you have HIV, actively spreading cancer, or evidence of a severe infection, your organs would be excluded from consideration.

Read this post in its entirety:

Organ Donation: Is an RA Patient Allowed to Donate?

Friday, March 23, 2012

"You Can't Be Sick"

... when I was diagnosed with multiple sclerosis, my mother didn’t hesitate to believe that something was wrong.  She was there for me and supported me through the process.  There was no instruction to use “mind over matter.”  I’m very fortunate in that those around me do not doubt when I say that I don’t feel well.

But not everybody has family members who truly try to understand their disease and accept reports of their experience at face value.  Unfortunately, my mother faced a lack of understanding, empathy, and support from family members when she was diagnosed with lupus.

Read this post in its entirety:

Mind Over Matter: When Family Members Do Not Believe You Are Sick

Monday, March 19, 2012

Tysabri-PML Cases as of March 1, 2012

I've been following the reported incidence of cases of progressive multifocal leukoencephalopathy (PML) in patients who use Tysabri over the years.  For many months, reports of new cases were found in news publications such as Bloomberg.  However, public reports have been released less and less frequently. 

Biogen Idec has released the latest figures for PML cases and deaths following Tysabri infusions for multiple sclerosis.  The total number of cases have reached 212 PML cases and 46 deaths in Tysabri MS patients as of March 1, 2012.

I have updated the chart on the right to reflect this recent report. This chart is under copyright. Please do not reproduce without permission.

As of March 1, 2012, there have been 212 PML cases, of which 122 have been in the European Economic Area (EU), 80 in the United States and 10 in rest of world (other). 46 of the 212 patients with PML have died.

In 54 natalizumab-treated MS patients who developed PML and in whom serum samples were available 6-187 months prior to the onset of PML, all 54 patients had anti-JCV antibodies detected.

Samples were available from 86 patients at the time of PML diagnosis and all 86 tested positive for anti-JCV antibodies.

In addition, one sample, collected from a patient at the time of PML diagnosis following a cycle of plasma exchange (PLEX) tested negative for anti-JCV antibodies. Because this sample was collected immediately following PLEX, and PLEX removes antibodies from the circulation, the information obtained from this sample is unreliable.

One patient tested anti-JCV antibody positive two months before PML diagnosis. Previously, the patient had tested anti-JCV antibody negative 15 months prior to PML diagnosis, indicating that they had been exposed to the JC virus at some point between the two tests.

Source: Biogen Idec (16/03/12) as shared by Multiple Sclerosis Resource Centre.

Friday, March 16, 2012

What's orange, green, purple and blue?

Eight years ago on the last Thursday of March, I visited my primary care doctor and complained that my “hands didn’t feel right.”  I was worried that I might be developing lupus like my mother.  He ran some blood tests.  Results: ANA was negative, RF was 5.3, TSH was 3.2, and SED rate was 31.  I was fine, he said.  Three years later, I would eventually be diagnosed with rheumatoid arthritis.

Four years ago on the third Tuesday of March, two of my beautiful cats, Musette and Pippin, were born in the home of one of my piano students.  However, I was busy fighting a major MS relapse which was taking away the strength in my legs.  I could not rise from a seated position without some serious pushing and pulling.  My thighs were simply spectators.  My SED rate was 20 and my C-reactive protein was the highest it’s ever been at 13.  I was definitely much too aware of my MS at that time.

Read this post in its entirety:

March Madness, MS Awareness, and Medical Anniversaries

Thursday, March 15, 2012

Carnival of MS Bloggers #110

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

Story Time

MS You're Never Gonna Win! by Madeline Adams-Gurowitz

Thanks, Amy! You're daughter totally rocks!!

by Annie of Mama Melee Society

I am new at this game. It’s been five months, one hundred and fifty one days to be exact, since I experienced my first MS symptom

To those who have struggled with MS for many years, five months may seem trivial, but to me, as a so-called beginner, it’s been a long five months. I feel like I’m just beginning to understand the changes in my life, I am just beginning to learn how to deal with these changes. In other words I feel like a MS preschooler.

Do you remember preschool? For most, it’s a happy time of life. MS and preschool are surprisingly similar!

ABCopaxone. Preschoolers learn their ABC’s. The first thing I did was learn about was the various drugs available for MS. I chose Copaxone and inject myself daily. Did this scare me to death at first? Yes, (I may have cried) but now that I’m experienced, it’s no big deal.

Nap Time. Do you remember rolling out a mat for your preschool nap? Turns out, a daily nap works great for MS too! At least that’s the excuse I keep giving myself.

Recess-it’s not just for kids! Possibly the best part of preschool was recess. I have very few memories of preschool, but I do remember sliding down a slide at recess time. In MS, “recess” is simple: Exercise daily! I walk on my treadmill when possible. Something as simple as stretching also helps me feel better. I have a beginner’s Yoga App on my iPad that I’m starting to love too. Do what works for you.

Arts & Crafts. Every month Copaxone shows up on my doorstep, packed in ice, in a Styrofoam cooler. The coolers are starting to pile up in our garage. My children happily used two of these coolers to make Valentine’s Day Mailboxes to take to their school Valentines parties. What other creative ways can you think of to use those coolers?

Dress Ups. Did you have dress ups in Preschool? A box of costumes that facilitated becoming someone or something else? These days I feel like I am constantly wearing a costume. My first MS symptom was numbness in my right hand. After a few weeks, the numbness escalated into outright pain. Not being able to use my hand interfered with my ability to blow dry and straight iron my hair. So I gave up the hair battle and have gone naturally curly, which is much, much easier. Do I like my curly hair? I’m trying to. I still feel like it’s not really me (ironically), hence the “costume,” but I’m trying my best to adjust.

Story Time. Where do we get our MS stories? From the Internet of course! There are many great online resources for MS. In the early days soon after my diagnosis, I spent time reading all kinds of information online. After a while though, it just got plain depressing. The uncertainties of MS can be scary for newbies, but it is important to be informed of all the good, the bad and the ugly. Knowledge brings power!

Field Trips. We get to take field trips too! Trips to your doctor’s office can be fun! Ok, maybe not fun, but at least helpful. And maybe if you’re lucky, you’ll get a sucker.
Play/Game time. Are you exercising your brain? I’d never played a Sudoku game in my life till a couple of months ago. Try it, your brain will thank you!

Wash your Hands. We learned in preschool how to wash our hands. This is more important than ever, keep those germs away, keep yourself healthy. Always remember to wash your hands before injections.

Graduation! I’m going to go out on a ledge here and assume you graduated from preschool with flying colors. I did too! This gives me hope that sooner or later, I will be a graduate of MS preschool. Wish me luck.

by Yvonne Sousa

It was Elmo that finally did me in.   Yes, Elmo, as in Tickle Me.  But maybe that is not fair.  While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street.  Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind.   The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

As I grew out of my toddler years her television concerns continued.   The Partridge Family was NOT ok.   The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country.  At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules.   I would watch Sesame Street with my four year old nephew and we enjoyed it immensely.    I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang “How I Miss my X” to a very sad looking X.   I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it?   Her ex is the letter X!   Isn’t that a riot?  And look, X misses her too.  They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day.   I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month.   After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called.  Much to her dismay as it was her lunch hour, I was an hour and ten minutes early.   No, I hadn’t bothered to check what time I was due there.  My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.”   It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me.    My mind continued to swirl with all that had piled up that month and of all the things I had to do.  But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not).  And so, with this round of paperwork done, I grabbed the thing closest to me to read.

It was a book from a Sesame Street series called Sesame Street Library.   In it, loveable Elmo ventures into the library looking for a Little Black Puppy.   As he searches he gets distracted from his important task by story hour.   I do that all the time.   Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission.  Betty Lou offers to help.   She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.  Poor Elmo has been misunderstood.  I can relate to that too.  More evidence our furry red friend might be afflicted with a myelin damaging illness.

He explains his plight again.  He is looking for an actual puppy that is missing and happens to be black and little.  Again, the kind Betty Lou wants to help.  Back to the card catalog they go and then to the stacks where she produces a book called “How to be a Detective.”

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there.  Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search.   Elmo excitedly thanks her.   That’s when I lost it.  In the lobby of therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.
“Betty Lou that is NOT helpful!!!!!  What kind of friend are you?  I know you mean well but if you really want to help, start looking for the damn dog!   How long do you think it will take Elmo to read all those books before the search begins?   After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have.   Can’t you just help look in corners and yell ‘here Fido’ or something?  How bout you read the damn books and then get back to him?”
Poor Betty Lou.  Perhaps she didn’t deserve my wrath but she was not alone.  Elmo was next on my “need a good talking too” list.
“Elmo, don’t be a putz!  Tell Betty Lou what she can do with her freaking books and where to go.   Don’t stand there with that stupid smile expressing all kinds of false gratitude.   Throw the books at her and start looking for the dog.”
I suppose the moral of the story was that you can find anything in a library.   But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern.  She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure.  She asked me what I was looking for, therapeutically speaking.  Then she told me where I could research the answers to what I was looking for.  She recommended some books.  I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

Image: sheelamohan /

1. Dragon naturally speaking voice recognition program. Since I am no longer able to type, thanks to this goddamn Multiple Sclerosis, and I am paralyzed on my left side I am using the voice recognition program for my computer every day when I write. It has saved me from untold angst, frustration and exhaustion. Having MS makes everything exhausting so something as wonderful as this program makes it fun again to do what I love. Of course, it makes some serious errors and sometimes refuses to curse for me. But what the hell, it’s a small price to pay.

2. Ex N Flex. These machines are really great for people who need to exercise their arms and legs and they are recommended by the Multiple Sclerosis Society. I use them every day and without them I would be at a loss. They have my highest kudos and their customer service is bar none.

3. e-books. I read a lot and before e-books I had a hard time holding books properly and drop them often. Because I have to spend quite a lot of time in bed because of MS and read tons of books and I am so thankful for this wildly successful adventure.

4. e-reader. There are so many kinds of readers on the market. I am using the Samsung Galaxy tablet. It’s just the right size for me to read in bed and has Internet features and lots of apps so if I need to look up something while I’m reading, the information is right there in my hands.

5. Handy ride transportation system for people with disabilities. This wonderful program is based in Dallas, Texas and I don’t know what I would do without it. With my wheelchair I am no longer able to get in and out of our car and these wonderful handicapped accessible buses just lift me up or down the ramp and we’re off on another exciting adventure. Without it I would be stuck between a rock and a hard place.

6. Invacare alternating air electric mattress. About a year ago I was hospitalized for many months with a very serious bedsore. When I got home I bought an Invacare air mattress that is the same type that was used by Christopher Reeves. It automatically rotates my body from one side to the other every half an hour and I love it. No more sores.

7. Life Alert. Of all the good things that I’ve done to help myself, this is probably the greatest. It has saved me from countless injuries and the countless times that I have fallen I have had five or six gorgeous fireman pick me and put me back where I belong. This is the number one program you need to get if you find yourself in danger. Believe me you will thank me. It’s a wonderful system and could possibly save your life.

8. Certified home health care aide. Oh, happy day when my present home health care aide showed up at my door. It’s been a long and bumpy road to try and find someone who is kind, professional, and honest. I found her and I love her. If you need help start the process. It’s well worth it.

9. Catheters. Another stinky piece of business but what can you do. The catheter was invented by Benjamin Franklin when his brother was having trouble in the nether regions so we can thank our wonderful forefather for helping out. He would be proud to know what his grand invention has done for mankind. And I can attest to that fact.

10. Bedside commode. My bathroom is small and my wheelchair is cumbersome so I decided enough is enough. There were several times when I had to be rescued by Life Alert and one time I actually broke a rib trying to get onto the toilet. I need help to get on and off the commode but Multiple Sclerosis affords us very little privacy. Embarrassment and humiliation are synonyms for MS. The alternative was just too awful to concede.

These are all steps that I took one at a time over the course of years and looking back on it now I see that each one of these 10 things has added a little more independence to my life and I hope to yours.

This concludes the 110th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 29, 2012. 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, March 27, 2012.

Thank you.

Monday, March 12, 2012

MS Kills Connections > < Connection Kills MS

The National MS Society has created a new website/forum/social network/community called for people affected by multiple sclerosis.  The doors opened this weekend just in time for MS Awareness Week. 

You may remember that I've been advising the Society regarding their presence in the MS community online.  In 2009, I was the only MS patient invited to join the Social Online Advisory Group.  I have freely volunteered my advice and expressed the concerns we discuss frequently in our communities online.

One subject which was discussed at that time was the need for an MS community or forum which would be a safe place for MSers to go to connect with other MSers.  A place to access accurate and timely information and a place to help each other and find unconditional support.  Although other organizations have active forums, I believed that there was still room online for one more.

Last summer the Society enlarged our group and hosted an Online Community Summit for which they invited a number of MS patients representing other established MS communities online.  It was fabulous to sit in a meeting where half the attendees live with MS.  At that time, we again discussed the potential need for a new forum.

I had a chance to check out before the official launch.  I believe that it has huge potential.  It's flexible enough to be used in many different ways.  You can create and join groups.  Participate in discussions.  Create, read, and comment on "blogs."  And private message members.

Come find me and say a little howdy -

Friday, March 9, 2012

My Day on Capitol Hill: An MS Activist in Action

Wednesday was the big day! MS activists from around the country visited countless offices on Capitol Hill to voice their support of specific legislative issues needed to improve the lives of people affected by multiple sclerosis. Requests made to lawmakers this year on behalf of people with MS nationwide included:
  • Support the Lifespan Respite Care Program: 
    • reauthorize the program by passing H.R. 3266 and 
    • include $5 million in the FY2013 Labor-HHS-Education appropriations bill for the program.
  • Support MS Research: 
    • provide $32 billion in FY2013 for National Institutes of Health and
    • sign Dear Colleague Letter or make programmatic request for additional appropriations (money) for the MS Research Program (MSRP) under the Congressionally Directed Medical Research Program. Last year the MSRP received $3.8 million.
  • Join the Congressional MS Caucus: contact MS Caucus co-chairs Representatives Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3) and Senators Robert Casey (PA) and Orrin Hatch (UT).
  • Support MS Awareness Week Resolution: 
    • co-sponsor the MS Awareness Week Resolution (H. Res. 560) and
    • contact Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) to voice your support.
Todd Adams, Legislative Director to U.S. Representative James R. Langevin (RI-2) and the Society’s 2011 Congressional Staffer of the Year, made the following suggestions in preparation for our visits:
  • Regardless of whom you meet in the office, establish a connection. Tell them your story.
  • Make it known if you are a constituent.
  • Clearly present your “ask.” What do you want the congressman to do or support? Explain what it will mean down the road to you and others. Leave behind materials detailing your request.
  • Be mindful of time.
  • Exchange information so that the office can contact you.
  • FOLLOW UP!! Possible questions to ask: “Did you have an opportunity to look over our priorities? Did you have any questions? Did your boss sign off on our request? Was he OK with it?”
  • Most importantly, HAVE FUN!!
My day began as MS activists from Virginia loaded the first bus leaving the hotel. Dropped off in front of the Capitol Building, I went with Dana and Phil, fellow MS activists, to visit the office of James Moran (VA-8), our U.S. Representative. We met with Moran’s Legislative Assistant, Marcia Knutson. Tip: Allow at least one hour to enter the office buildings in the morning. 

Dana and Phil have an ongoing relationship with Ms. Knutson, and Rep. James Moran is generally supportive of healthcare issues, so not much time was spent discussing the requests. Knutson wanted to know the bill numbers and specific dollar amounts being requested, as she wrote in her notebook. From there, the conversation traveled between various topics and I picked up on a few additional details which may be important to keep in mind when contacting your own lawmaker’s office.
  • Although email communication is increasingly becoming more common, take the time to visit the office. An in-person visit to educate the Legislative Assistant on an issue, especially one with which he/she is unfamiliar, is highly preferable.
  • If you send a blanket form letter to 300+ offices, most of which do not house your personal representative or senator, don’t expect it to be taken as seriously.
  • Don’t just ask for “more money” in your request. Be prepared with specific dollar amounts.
  • Know your lawmaker’s deadlines for Budget Hearings. Rep. Moran’s deadline for submitting materials in preparation for a March 28th or 29th hearing is March 20. As the legislative assistant must prepare materials in advance of this deadline, groups meeting with Ms. Knutson with budget requests after March 13 will be left out of consideration.
  • Unfortunately, if you choose to send a letter to your Senator or Representative, it will face up to a 6-week delay because of the rigorous security screening process in place – email is preferable. And if you don’t hear back from the office after an email, call to be sure they received it – Spam filters in Congress sometimes divert email messages.
Before we left Rep. Moran’s office, I was able to jump into the conversation and express my personal concerns as a self-employed person who has an individual health insurance policy. As a “grandfathered” policy, it does not need to match the same requirements incorporated into new policies being offered by the same company. Ultimately I was asked if I could hold out until 2014 when health exchanges will be established in our area. I’m not positive that my concerns were entirely understood, which means that I need to follow up and continue the conversation. 

After going through this, I realized how easy it really was. A visit to a lawmaker’s office is just the beginning of a longer conversation. What you do afterward will determine how well your voice is heard and your concerns are understood. Each phone call is documented and emails are read. Every contact is important. Now is the time to keep MS-related issues at the frontline of Capitol Hill. 

Help keep the momentum going – follow the federal advocacy efforts on twitter at @MSActivist and after you’ve contacted your elected official or take some other action, tweet about it using hashtag #MSActivist.

Originally published on National MS Society blog.

Thursday, March 8, 2012

Interviews with Inspiring MS Advocates at NMSS Conference

Before the National MS Society Public Policy Conference was complete, I had an opportunity to interview more inspiring MS activists.  You can read their stories:

From the Sea to Capitol Hill: An Interview with MS Activist Donnie Horner
In his first two years stationed in San Diego, Donnie spent about 300 days at sea. His job required him to spend many hours on his feet. “When I was out to sea, I began to develop tingling in my legs in July and August 2009. Because I had spent so much time out to sea, I said to myself, ‘Man, this just must be sea legs or something like that.’ When we got back into port, I noticed my symptoms started to get worse. I went to a couple of my buddies and they said, ‘You really need to go see a doctor.’ So I did.”

Donnie described his legs as feeling weak and heavy, with the sensation of falling asleep. He would try to hit his legs in an attempt to wake them up. “My mind was going, but my legs weren’t able. And it hurt, the constant pressure of standing on the needles.” Coincidentally, Donnie had never experienced these symptoms until after he received required vaccinations – anthrax, tuberculosis, tetanus – in May/June 2009. “I’m not kidding. I received a dozen vaccinations the summer I was diagnosed.”
Increase Funding for MS Research: An Interview with Sarah Keitt
“I have been involved with the MS society since 2000 when I was first diagnosed. I’ve volunteered in one way or another. I have a background in public health and worked on clinical research issues [in my career], so I have a strong familiarity with study design, clinical research, and bioethics. Then an opportunity came up that fit my professional interests along with my personal interest in MS.”

“If you don’t get involved with advocacy, no one else is going to do it for you. It’s up to us, as people with MS, to make sure that the funding for research is there, that services for people with MS and other disabilities are there. It’s really critical that we get involved in any way that we can!”
Thanks to Donnie and Sarah for sharing their stories and becoming advocates for people living with MS nationwide.  I met so many wonderful individuals during the Conference that I wish it were possible to share all of their stories.  We have so many in the MS community who are tireless leaders and wonderful advocates.

Tuesday, March 6, 2012

Highlights from MS Public Policy Conference

Day One of the conference sped by so very quickly. Read about the opening afternoon sessions in my post - Washington from the Inside: The Political Climate and Multiple Sclerosis. Day Two is not yet complete, but you can catch up on a very important issue, the Lifespan Respite Care Act, in today's post - Family Caregivers, MS Research, and MS Champions. In just a few minutes, I'll head back down to the Ballroom to kick back and enjoy the comedy stylings of Brett Leake, a standup comic turned sit-down comic who lives with muscular dystrophy. My interviews with two inspiring MS activists will be posted tomorrow while we are all headed to The Hill.

MS Impacts Us All

Video Shared here at the NMSS Public Policy Conference

Monday, March 5, 2012

All the Little Voices

Lee Domenico, Lisa Emrich, Ted Thompson
Day One of the 21st Annual National MS Society Public Policy Conference has come to a close.  Lots of excitement as MS Activists from across the country have landed in DC.

I attended the opening sessions this afternoon and met up with Lee Domenico from Delaware.  Lee shared her story with me earlier and you can read her interview at All the Little Voices Working Together.

As more blog posts go up on the National MS Society's blog, I will let you know.  Tomorrow begins bright and early at 7:30am.  Until then, good night.

Sunday, March 4, 2012

Blogging from DC

I'll be blogging from the 21st Annual National MS Society Public Policy Conference in Washington, D.C.  I've been studying the agenda and am really exciting to be learning more about MS Research, the Caregiving and Lifespan Respite Act, and updates in healthcare reform which affect MS patients.

Read more at:

Demystifying Public Policy: MS Activists on the Frontline

In case you were thinking to yourself - Doesn't Lisa live near DC?
Yes, I do. However in the 13+ years I've lived here, I have not once visited my Representative's DC office downtown.  This will be a new experience.  Very excited!

Saturday, March 3, 2012

Multiple Sclerosis Advocacy on Capitol Hill

What does Advocacy and Activism mean to you?

MS Activists on the Frontline

In looking at the agenda of the 21st Annual National MS Society Public Policy Conference in Washington, D.C., the fiscal budget is one area in which MS Activist will take their voices to Capitol Hill to advocate, or lobby, for continued funding or increased funding for MS research.  Activists will also urge lawmakers to reauthorize programs which aim to assist MS patients and their families, such as the Lifespan Respite Care Act.

I am looking forward to learning more about the recent victories the National MS Society, together with other patient advocacy organizations, have won in recent years.  I am also eager to gain a better understanding of the lobbying process as I aim to demystify public policy. 

While I’m at the conference, is there anything specific that you would like to read about? 

One thing which is on my agenda is to bring you the information you need to become an MS advocate/activist from your own home.  Letters, emails, and phone calls to legislators really do make a difference.

Read this post in its entirety:

MS Advocacy and Public Policy on Capitol Hill

Thursday, March 1, 2012

Carnival of MS Bloggers #109

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

Staying Upright
by Laura of Shine the Divine

caught on wires barbed
vines twist in the cold
small hearts dangle
in a momentary breeze
or connected it all
for the fence offers
a place to grow
perspective it seems is
MS-behaving... A flare in symptoms began yesterday morning. I'm trying to look at this from a particular perspective... so much depends upon perspective! This has been the longest remission period I've had since 2009 ...almost three months of feeling pretty darn good with Gilenya. I am grateful for the reprieve. We'll see what the doctor says later today, I think she will want to see me and likely do an MRI. Maybe there won't be any new lesions, just an unexplainable reactivation of old ones. Life, I have learned, generally does not go as we plan, it is best to expect the unexpected, open to the possibility of blessings in every moment and wait for them to arrive. I watched the sunrise this morning, golden and glorious. An attitude of gratitude is amazingly healing! Also, the Michael Jackson Myoclonus MoonWalk thing my right leg does at times like this is propelling me forward, typically when this symptom starts up I can only move backward...I'm taking this as a good sign! (Honestly I do feel disappointed and frustrated too, but one can feel this, have a sense of humor and gratitude all at the same time. )

by Miss Chili's Hot Stuff

Yesterday, I fell. Outside. With help. Ow.
It was an hour or so away from my physical therapy appointment. Despite not having gone since, um, December ... after falling that time inside on their throw rug in front of the coat closet ... I sucked it up and decided that I was going to brave that evil throw rug, that it wasn't going to let me down again, ha HA!

So, I got dressed, covering up anything that might need to be covered in this Denmark cold. Brrrr... Did I say, 'Brrrr' already? It bears repeating, as it's f*€&ing cold here.

Once downstairs and out at the street -- which took some time, having to walk from our apartment building past a few more to get to the street -- I rang for a taxi. It didn't take long until one showed up, and the driver jumped out to assess -- maybe that needs a few more 'ass'es in it, and you'll see why -- the situation.

When he arrived, I'd been sitting on the seat of my wheeled walker thing, brakes on and all. I stood up and arranged myself, made sure my hat was on, double-checked that my mittens were still in the pouch attached to my wheelie thingie, and took off the brakes of the wheelie (well, if I have to call it anything, I suppose this will do ... just as long as I don't name it, as then you know that I'm toddling down the road to Crazy Town) so that I could cross over to the taxi, which was parked maybe three metres away.

The driver came over to help me, or at least I thought he did, and maybe he thought he did, too. He put his hands on my wheelie and started pulling and pushing it, faster than my feet could keep up. I wrestled it from his grip once, gathered myself and forged on ... only to have him put his hands on it again, to push it faster than I could keep up with. Almost to the edge of the first sidewalk, I figured that I had to keep on with it.

Between the first and the second sidewalks, there's gravel and dirt and such. I was trying to walk over it, and the driver was pulling me onwards, when ... I don't know exactly what happened, but I tripped or something, and I grabbed furiously for something to keep me upright, but ... it wasn't there, and I fell, partly on the wheelie, partly on the gravel.

There I was, the wheelie partly overturned and partly beneath me, and the taxi driver holding onto it still, saying something about how I needed to stand up straight. Fuck, if I could stand up straight to begin with, I wouldn't have to use this thing to help me walk!

I remember trying to stand, but something happened, I don't know what, but I went ass over teakettle to the ground, hitting my head and shoulder and hip and ...

( ( ( had to stop writing for a while now, just to catch my breath and not cry and such ) ) )

The driver asked me whether I needed an ambulance and, when I shook my head (mistake, as that only made me dizzier) and said that I didn't, asked me whether I was going to keep on going.

This was one of those times I count as lucky and fortunate that the company that Per works for is on the same street as we live, as a man came over to where I was sitting on the ground and said that he'd seen everything and wanted to know whether I needed help. Luckily, he was heading to the very company where Per works (and which used to employ me before all this MS shit kicked me in the head!), so I gave him Per's name.

The taxi driver left before Per could get there, possibly as he was afraid of getting his arse kicked. Yes, he left me sitting on the ground, which I considered to be a well sight safer than anywhere else at the moment.

In the end, Per walked me home, gave me pills to ward off the pain that I knew was coming, made sure I had plenty of whatever I needed, kissed me and rubbed his cheek to mine, and headed back to work.

It's been a long while since I fell outside, but now, I guess, it's a much shorter while. Here's hoping that the whiles get longer and longer between...


N.B. In the midst of all this MS stuff, I'm also having hot flashes. Thence, the fact that, despite the brrrr factor of the weather here in Denmark, my mittens were off.

by Living with MS? Me too, Let's Talk

I am by nature an upbeat person-but in the 23 years I've lived with MS, I have found that this illness can really have an effect on my dignity. Before MS progressed to the point where it was causing obvious balance, cognitive issues etc. I was an executive and presented myself in a professional manner at all times. As time has passed, I have had to learn that shoes and bags don't "have to match", caftans have replaced my business attire, and I can no longer style my hair or apply make-up as well as I once did...these issues of course, aren't "life altering things" but were always important to me. But, more importantly, MS has made it necessary for me to "re-define" my style.

At first, it truly effected my self-esteem, as I hardly ever felt well "put together anymore". And, during conversations, I can't find words to finish a sentence. I wear a high brace on my weak leg, and it requires not so pretty shoes. Can you imagine putting on a cocktail dress with a pair of sport shoes, haha. I don't think so...

Even though my husband is wonderful and has taken over the household cleaning, laundry etc. I still after all this time, feel so guilty because I don't feel as though I pull my weight, as the old saying goes.

When I use to still drive and would do the grocery shopping, I would be bringing the bags in and before I could finish I would completely wet all over myself. I'd have to go in and shower before I could even think about putting the groceries away.

So, I ask-where is the dignity in that? Darn MS...One of the synonyms for dignity is poise-well, believe me, you can't have much poise when you'er walking with a brace and using a cane-and praying-Dear God, please keep me on my feet...And, as the girl in the graphic, I "do" hold onto walls in the house when necessary.

Well, MS can and has taken quite a bit of my dignity, but it will never take away any of my spirit. I love and appreciate each new day. So, I'll wear my caftans, brace and ugly shoes, but I'll always hold my head high because God has given me this life to live, and I above all else, I want to please him and have him tell me at the end-my daughter you have run the good race...

This concludes the 109th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 15, 2012. 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, March 13, 2012.

Thank you.