Saturday, February 28, 2009

Rare Disease Day 2009, Feb 28

Rare Disease Day 2009

Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.

Thus the aim of the day is to reinforce their importance as:

1. A Public Health Priority

2. A Need for Centres of Expertise

Other main objectives of Rare Disease Day are to:
  • Raise awareness on rare diseases
  • Strengthen one voice of patients
  • Give hope and information to patients
  • Bring stakeholders closer together
  • Coordinate policy actions in different countries
  • Inspire continued growth of the awareness of rare diseases
  • Get equity in access to care and treatment

Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.

Friday, February 27, 2009

The Dreaded PseudoExacerbation

Normally, I let the Carnival of MS Bloggers sit at the top of the page for at least two days. But today, I wanted to share something REALLY IMPORTANT.

Pseudoexacerbation brought on by Urinary Tract Infection.

If you read my post Tuesday about Comprehensive Rehabilitation, then you know I've been attending twice weekly physical therapy sessions. I have been gaining strength, endurance, and coordination. I was feeling good!!

That is until Wednesday. I woke up t.i.r.e.d and fatigued. It did not get any better throughout the day. I suffered through teaching my afternoon students, stopped for dinner, then canceled my final hour-long lesson of the day.

Thursday I woke up hoping to feel better. I tried really hard to WILL myself into feeling better. I even got my butt into PT only to be asked, "how are you today? what's your energy level?"

Of course, I had to be honest because my legs were HEAVY and WEAK. They were all numbly/tingly. I was walking kinda crooked and my toes were threatening to trip me up every other step.

My PT had me sit down, then she came over to take my blood pressure and asked me more about my symptoms. "Well, also my left foot has been vibrating for almost a week. I was just kinda ignoring it cause I felt good."

Are you coming down with anything? "Don't think so."

How's your bladder? "Well, actually my urine has been looking kinda dark, but it's hard to tell if that's not from the vitamins or meds."

You know that there's no way I'm going to let you work out today and leave what little energy you have here. Where's the positive experience in that?

Here's what I want you to do. Go get tested for a possible UTI (urinary tract infection.) If that's it, then you can start antibiotics and get to feeling better. If not, then you still have time to call Nurse Carol (my MS nurse) and get in tomorrow to see the neurologist. "I can do that."

So, that's what I did. I happened to walk into my PCP's office (which does not take walk-ins) asking if I could get a simple urine test for possible UTI. The receptionist said that I'd still have to see that doctor. "That's fine. Thanks."

Sure enough, there was blood in my urine (although it didn't look cloudy to me) and enough white blood cells to warrant a round of antibiotics. A culture has been sent off (probably just in case the antibiotics don't work, they know what it is).

I took a dose yesterday. Didn't feel any different, but continued to get a little worse. This morning I woke up early to relieve myself, went back to bed, and slept in a little.

After I got up and about, I noticed - "hey, I believe I do feel a bit better than yesterday."

Still not back to 100%, but thankful to not be in the neurologist's office getting a round of Solumedrol.

It was the enormous speed at which I felt so totally lousy and incapable of carrying out my normal activities which was utterly disturbing. I honestly felt as though the worse relapse yet had developed and I just hadn't seen it coming.

So here's my advice to you. If you suddenly do not feel well and have even the mildest hunch that it's a bladder infection developing, get yourself to the doctor and get treated.

If I had waited another day, I don't know how much worse it would have gotten. But I do know that I'd be one extremely unhappy camper.

Phew. Dodged an MS bullet this time.

Thursday, February 26, 2009

Carnival of MS Bloggers #30

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

Bizarre Symptoms, Mechanics, and Love

Stoopid MS Symptoms 
by Blindbeard

I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.

I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.

My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.

I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.

I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.

I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.

I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.

Positively Shocking 
by Shauna
I have seen a few picture galleries of close ups of electronic equipment and thought it would be neat to try some myself. They look like mini industrial cities or industrial parks. Of course I swiped, with permission, a dead motherboard from someone's laptop at work. Cool, eh?

I find the mechanical components quite fascinating, more so than the electronic parts for some reason. Perhaps because I seem to have a love/hate relationship with electricity and negative experiences with static (pun intended). Perhaps because I can never seem to remember Ohm's Law. Or perhaps because it's just one of those things I can't seem to wrap my mind around. Like time travel.

When I was first learning to drive, I was very frustrated because I just didn't "get" how cars work. And why did we only use one foot for two pedals instead of both feet?

Same thing with computers. Punch cards? Just one of those things out of place and I was destroyed for another 7 hours.

So anything more complex than a simple machine seems to be beyond my grasp. Give me a wheel, a pulley, an incline or a lever any day. They were good enough for Leonardo da Vinci. He came up with flying machines and submarines without knowledge of electricity or electronics.

Thank God that electrical things are of interest to other people and that wonderful things can come of that interest. Like lights in the night time. Radio. The internet.

Of course, electricity powers our bodies, though to a lesser degree. It is no less important. Without electricity in our bodies, we'd have no thoughts, heartbeats, or life as we know and enjoy it. For those of us with MS, we need stronger and more resistant insulation to cover the nerves that conduct that electricity.

Power companies have to spend money to maintain power lines, poles, transformers and the billions of other parts that keep us in the light. As MSers, we have to try to maintain our infrastructure as well, through diet, exercise, and mental stimulation. Some of us take medications that, like the power company linesmen, try to prevent power outages and maintain the system.

My dad is a retired electrical engineer. He understands all that electrical stuff that I don't. When I was five he took us for a drive to the construction site of a transformer to show us what he did for work. It wasn't until I was 16 or 17 that I finally understood what he did. I've been to a few of the other project sites that he worked on and while I found the experiences interesting, to be honest it was the mechanics of everything that I found most fascinating. Hydro-electric site? Never mind the electricity the water would generate, I wondered how the water tanks got full, how the dams opened and closed. Looking at the electrical plans for different buildings I wondered more about the blue ink used to print the plans or the different symbols on the paper. Sorry, Dad. I am amazed that human beings have figured out how to harness various sources and turn them into electricity; I just have a mental block when it comes to understanding how it works. I just know and trust that it does.

I also know and trust that there are people who understand the mechanics and electronics of the brain. They are the people we MSers are counting on to fix our power bumps.

Today would have been my grandfather's birthday. And though he's been dead a number of years, I think about him everyday - or at least every time I drive a car or open a locked door.

He was always free with advice and he often reminded his grandchildren to "not be a key turner."

My grandfather lived on the same street for most of the years I was growing up. He did his best to make sure I wasn't a key turner.

A key turner is a person who knows how to jump in the car, turn the key and go. A key turner does not know what to do when the oil light flashes, how to fill a gas tank, change a tire or what transmission fluid smells like. A key turner would never look at the drippings in the driveway and conclude something might be leaking.

You can bet I knew a lot about what was under the hood of my car when I first began driving. I knew that turning a key was just a tiny part of the process of making a car go from one place to another. I knew that knowledge and maintenance contributes to successful driving.

That key-turning business applies to more then cars, of course.

It applies to all things mechanical. I knew how to oil my sewing machine and keep my bike running. He made sure I could do minor repairs and maintenance on the washer, dryer, dishwasher, stove and lawnmower

The key-turner philosophy also applies to a person individually. It is up to you to know as much about you as possible and become your best advocate.

Just like your driving habits may mean your car never gets the miles per hour promised on a sticker label , your multiple sclerosis may differ from your neigbhor's MS. You may never need a wheelchair, you might need one a year after you are diagnosed. You may be able to keep working when someone else can't. You might only read, not experience, the Lhermitte's Sign's flash of electricity along your back..

Remembering that "your mileage may vary" helps me speak up when a doctor tries to prescribe a drug I know won't chase an infection away even if "it works for everyone else."

Being everybody else never was a goal in my family.

Is He Going to Leave You?
by Screaming Richie
When it was diagnosed that Herrad had MS and as it became obvious it was going to be really shitty people started asking Herrad about me. “Is he going to leave you?”

Funny till that point it had not occurred to me that I could. I could not see why I should want to. Herrad and I are a partnership. MS was happening to us. At first I was a bit shocked. How dare people even think I would shit on the love of my life just because things get rough? I would expect Herrad to care for me in similar circumstances. My Dad didn’t get on his bike when my Mum got cancer. He nursed her through the painful last days of her life. He and I may not have always got on but that is something I love him for- he loved my Mum.

I started to read blogs and chat rooms about MS and then found the reason for the questions: lots of men run when it starts getting nasty.

I was a failed comedian with no job, house or visible means of support when we got together. I guess I didn’t fall into the “most eligible” category. Many of Herrad’s friends are middle class. Not every one thought Herrad was very wise to get involved with me. They have known men from their background who bottle it. Cut and run in the cruelest most selfish manner. “Good men”- lawyers, business men and the like. So OK it would not be too strange for a scruffy geezer like me to sneak off- I screwed most things up- why should this be different?

So I decided it was amusing when Herrad’s aunty Sigrid called from Canada every month and asked if I was leaving. She wanted to be re-assured because she had talked to people with experience of this disease and many of them were dumped by their partners.

I am going nowhere without my Herrad. Sigrid now thinks I am quite a guy. She sends me her love now and asks what I am cooking for dinner. If anyone else thinks I am not good enough for Herrad they can stick their opinion where the sun don’t shine. The rank is but the Guineas stamp, the mans the gold for all that.

It is not easy dealing with the hard stuff but I would not to hide. I chose right and I salute all you men and women who have made the same choice as me. Let love rule.

Let Love Rule!!! What a great philosophy.

This concludes the 30th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 12, 2009. 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 Monday, March 10, 2009.

Thank you.
Comments for this post.

Wednesday, February 25, 2009

COBRA Subsidies: Do You Qualify?

COBRA Subsidies: Do You Qualify? (by way of MS Maze)

From freelance writer Charlotte Huff:

I’m writing a quick turnaround article for AARP Bulletin, focusing on the recently passed COBRA subsidies and how they effect people in their readership (ages 50 to 64) who don’t yet qualify for Medicare.

Do you fall in that age group and qualify for COBRA subsidy due to a job layoff (yours or your spouse’s). If so, I’d be interested in interviewing you regardless of whether you’ve decided to sign up.

Please contact me as soon as possible at I have to wrap up interviews by week’s end.

Many thanks, Charlotte

Related Article: Sad Truth About COBRA

Tuesday, February 24, 2009

The Impact of Comprehensive Rehabilitation

With multiple sclerosis, the symptoms of the disease can negatively affect functions of daily living, general well-being, and Health-Related Quality of Life (HRQOL). Symptoms such as fatigue or weakness can lead to inactivity. Inactivity can lead to deconditioning and physical impairment. Physical impairment can lead to psychological impairment. Psychological impairment can lead to inactivity. As this cycle continues, inactivity worsens and daily activities may be avoided altogether, leading to further deconditioning and an even poorer HRQOL.

Comprehensive rehabilitation programs can break this vicious cycle.

After experiencing ongoing difficulties with gait and mobility, I requested that my neurologist prescribe an evaluation and exercise program from a physical therapist specially-trained in neurological disorders. What I thought would be some simple gait training and help with spasticity issues became much more. So, I began twice weekly physical therapy sessions in December to address issues of weakness, spasticity, gait problems, fatigue, and balance. See Free Falling and Other Silly Human Tricks. Valerie, my physical therapist, designed a program which addresses the physical deconditioning I had succumbed to.

When you begin any exercise program, it is best to consult with your medical professional first. An initial appointment would be used to assess your starting point, measuring weakness, spasticity, sensory dysfunctions, gait and balance. Even cognitive function could be considered, as information processing greatly affects a person’s ability to follow through with a program long-term.

Comprehensive rehabilitation addresses the patient as a whole and focuses on maximizing a person’s functional abilities and improving their self-image, psychological well-being, coping skills and adjustment to MS. It may combine aerobic exercise with strength training, gait training, balance exercises, stretching, heat and massage, occupational therapy, self-assessment of fatigue, and perceived benefit upon Quality of Life.

Rest this post in it entirety:

Quality of Life for MS Patients: The Impact of Comprehensive Rehabilitation

Monday, February 23, 2009

Mindfulness vs. Auto-Perception

I have recently discovered a new-to-me blog which isn't about MS, but Mindfulness and Psychotherapy written by Elisha Goldstein, Ph.D. An excerpt of today's post is included below:

Depressed? Break out of Auto-Perception

This weekend I went on a hike with some good friends and during the hike we kept hearing sounds of frogs, ‘croak, croak.’ We looked in the water, on the ground and all around us, but we could not find these frogs. They sounded like they were right next to us. For a few moments we slowed down and I chose to close my eyes, open my ears and just listen. As I began to feel more present and let go of the expectation that the frogs needed to be in a certain place, I opened my eyes again and was able to shift my perspective and see the frogs, they were camouflaged against the rocks. It was amazing. All along they were there but my mind and eyes were stuck and couldn’t perceive them. It made me think: How many things in this world are we literally not able to sense because our minds get stuck in automatic patterns of perceiving or auto-perception? How might this auto-pilot of perception contribute to our depression and anxiety, day to day?

Certainly, when a person is experiencing depression, the mind is often stuck in a cycle of rumination that not only interprets things from a negative lens, but expects negative things to happen and literally zeros in on the negative things that are there. Because of these prejudices and preconceptions about how things are, we can literally feel stuck in a box, unaware of new options that might support our mental health during this time. Doubts and self judgments about getting better run rampant, leading to the inevitable trifecta of depression “this is never going to get better, no one can help me, and I can’t help myself.”

Read the rest of Dr. Goldstein's post.

I have read through her previous posts and found them to be enlightening and uplifting. Perhaps you will also.

Sunday, February 22, 2009

Mon Voyage, Ma Chrysalide

Mon Voyage, Ma Chrysalide

"Be like water and keep flowing." - Chrysalis

A new blog has joined the MS blogging community. I have know the blogger (and so have some of you) in a previous blog life and I'm thrilled that she has returned, reincarnated.

For an introduction to her beautiful writing, please read My Journey, My Chrysalis. Fortunately for us, Chrysalis is also an amazing photographer and I look forward to seeing life through her eyes.

Please welcome Chrysalis to our MS community.

Saturday, February 21, 2009

New Bloggers: MS, Tysabri, Transverse Myelitis

Me, Myself, and Tysabri

My life has come to a stand still. Fact. It is at a point where changes need to occur or I will slowly wither away. All the things that define me as a person have been taken away from me. This blog will chart my attempt to regain a number of things that I feel MS has taken from me. My quest to regain my old self begins with starting on the Tysabri drug programme. This will give me the boost I need to focus on living life to the fullest with my beautiful partner. Let the journey begin......

Ramblings of Casey

I went to my neurologist to get the results of my lumbar puncture! All of the results were in except one. So far there is only one abnormality and it is the abnormality that the neurologist expected to be there. It basically says that there was/is an inflammation of my myelin sheath. So this confirms the diagnosis of transverse myelitis or multiple sclerosis. The test that would determine if it was multiple sclerosis is the one that is not back yet. No matter what the test comes back as I could still have multiple sclerosis (if it is early stages of ms sometimes it wont show up in the test) if the test is positive then I will be diagnosed with ms but if it comes back negative then I will be diagnosed with transverse myelitis unless I end up having a second attack. For both transverse myelitis or MS there is no cure just ways to manage the symptoms.

Friday, February 20, 2009

MS: Psychomatic, Neurologic, Mood Disorder, or Personaltiy?

In some cases of Multiple Sclerosis, there may be the potential of a misdiagnosis of Bipolar Disorder (or other mood disorder) instead of MS. This got me to thinking...

How many patients are diagnosed with a Mood Disorder or Mental Illness before they are later found to have multiple sclerosis?

In my case, I was diagnosed with depression years before developing optic neuritis and eventually diagnosed with multiple sclerosis. I find the following article abstract an exciting peak into the connection of cytokines (which help to regulate inflammation and immunity) and depressive symptoms. See Gold SM and Irwin MR. Depression and immunity: inflammation and depressive symptoms in multiple sclerosis. Neurologic Clinics. 2006 Aug; 24(3):507-19.

How many patients are diagnosed with a Psychosomatic Disorder or are told “It’s All In Your Head” when they experience neurological symptoms?

Meet Clare C. who is still yet-to-be-diagnosed with multiple sclerosis or other disease of the Central Nervous System. She is in what we refer to as Limboland having had periodic bouts of neurological symptoms, including Optic Neuritis, but no clear diagnosis.

“My first symptom came suddenly 6 months after the birth of my second Daughter in 2004. I woke up one day and my breakfast tasted like mould, my tea my toast. My sense of smell was affected too. It lasted six months and was fully normal after a year.”

Clare initially consulted with an Ear, Nose, Throat doctor, then later a neurologist who ordered MRIs which came back clear.

“In 2006 just a little while after my sense of smell had returned I started feeling numbness in my left eye, and left side of my face. Then I had started getting dizzy having vision problems, vertigo I felt like I was in a goldfish bowl looking out.”

It wasn’t until Clare began experiencing crippling headaches that she visited her doctor who referred her to a neurologist.

“The first appointment was pretty uneventful; although her first conclusion was that I probably had a trapped nerve in my neck and psychosomatic issues because I was in a foreign land (I am a British woman living in Germany). I took this at first with a pinch of salt and was pretty relieved that she hadn't spoken of serious illness.”

Read this post in its entirety:

Multiple Sclerosis: Psychosomatic, Neurologic, Mood Disorder, or Personality?

Wednesday, February 18, 2009

Psychoneuroimmunology, Multiple Sclerosis, Depression, Inflammation, Psychosomatic Disorders

Ok. So I'm working on this grand post which touches on the issue of psychosomatic disorders and how those with Multiple Sclerosis might be told "it's all in your head" before they even discover that "it truly is in your head."

There is quite a bit of reach which connects inflammation, stress-induced cortisol levels, etc and the physical and psychological manifestations in humans. BTW, did you know that not only are they same pro-inflammatory cytokines inflammatory proteins (ie Interleukin-2 and -6) involved in MS are also involved in depression and bi-polar disorder?

How many of you were directed to consult a psychiatrist or offered anti-depressants before the doctor's would consider your symptoms which you now know are caused by MS?

Also, there is research that does indicate that specific types of antidepressants may be helpful in protecting from neurological damage. The whole field of psychoneuroimmunology is new to me, so I am reading a lot about it.

If you have information you'd like to share which touches on any of the above, please feel free to do so in the comments.

Tuesday, February 17, 2009

The Role of Disease-Modifying Treatments and Quality of Life for MS Patients

In Part One, Quality of Life for MS Patients: Is it Health-Related?, we outlined four aspects to quality of life which include clinical health, role-performance, adaptability, and well-being. However, not one commenter mentioned disability in relation to Quality of Life. The overwhelming response was that we want to feel productive, to use our skills to pursue meaningful work, to enjoy simple pleasures, and to gain a satisfying sense of accomplishment. And as Sherry points out, we cannot beat “Father Time.”

In The Importance of Early Diagnosis of Multiple Sclerosis by James R. Miller, MD., found in the June 2004 Supplement to Journal of Managed Care Pharmacy (see pp. S4-S11), three significant trials are discussed in relationship to early treatment in MS.

So why doesn’t every MS patient take advantage of the DMDs to delay the accumulation of disability and thus protect their Quality of Life?

Disease-modifying agents provide great benefit to the MS patient but potentially come with undesirable side-effects such as fatigue, flu-like symptoms, depression, headaches, and injection site reactions. There may also be a lack of efficacy (no single DMD works for every patient) in which case the patient either tries another treatment or decides to go without.

The decision to use a DMD requires a balance of risk/reward. If the side-effects are so great that Quality of Life is negatively impacted, then you may decide to go without. I’ve known patients who made this decision and found themselves feeling much better without medication. Personally, I am seeing more benefit than risk in the use of my DMD of choice and plan to stick with the treatment plan for now.

Read this post in its entirety:

Quality of Life for MS Patients: The Role of Disease-Modifying Treatments (Part Two in Series)

Sunday, February 15, 2009

Do You Have MS? Do You Live Near Boston?

Announcing: The Boston Multiple Sclerosis Meetup Group (Boston, MA)

Welcome, Bostonians with MS!!

Meet other local people facing the challenges of MS. This group is primarily intended for people living with Multiple Sclerosis, while friends, family, and caregivers are also welcome.

The idea here is to get together (once or twice a month) with other people with MS to enjoy some low-key activities such as dinner, movies, etc.

This approach differs from that of the National MS Society and other official organizations in that the focus here is NOT on fundraising or support groups (ie. psychological counseling), but rather on building camaraderie and friendship and on working to create a sense of community among people with MS and their loved ones.

Anyone who might be interested in joining, should visit:

You have to join in order to join the group (which has been made private by the Organizer). It's 100% free and only takes a couple of minutes to sign-up.

The Organizer is someone whom I've known through blogging and I'm glad to help promote her new group. If you live in Boston, I hope you'll check it out. If you know somebody who lives near Boston and who might be interested, please pass on this information.


Saturday, February 14, 2009

Happy Valentine's Day

Just thought this was beautiful -

You and I
Have so much love,
That it
Burns like a fire,
In which we bake a lump of clay
Molded into a figure of you
And a figure of me.
Then we take both of them,
And break them into pieces,
And mix the pieces with water,
And mold again a figure of you,
And a figure of me.
I am in your clay.
You are in my clay.
In life we share a single quilt.
In death we will share one coffin.

KUAN TAO-SHÊNG (1262-1319)

Translation: Kenneth Rexroth

Friday, February 13, 2009

Health-Related Quality of Life for MS Patients

What do you think of when you consider “quality of life”? Do end-of-life issues come to mind? How about disability or an inability to enjoy life? Or, what about something as simple as holding your grandchild? This is the first post in a series of Quality of Life topics.

When I think of quality of life, I picture having the ability to do the things I wish to do. Maybe that’s enjoying a day going to the movies without getting fatigued, or being able to remain gainfully employed, or even just being able to contribute to the family’s needs. To do so, I choose to foster personal strengths, develop coping strategies, gain information and knowledge, while cultivating a positive outlook and the ability to choose joy. These things are not always easy, multiple sclerosis or not.

Consider Health-Related Quality of Life (HRQoL) which is important to patients and should be one of the primary objectives in the management of all chronic diseases, including MS. Regardless of the disease, the patient can cope and live a more productive life if HRQoL is maintained. For an excellent primer on HRQoL, see Measuring Health-Related Quality of Life in the Annals of Internal Medicine (15 April 1993, 118/8: 622-629).

HRQoL is a multidimensional concept that includes an individual’s perception of their general well-being and the level of role-fulfillment across a range of different physical, psychosocial, and symptom-related phenomenon. Four aspects to quality of life include clinical health, role-performance, adaptability, and well-being. The major factors contributing to quality of life for the patient are ability to perform daily activities, level of well-being, satisfaction with life, and the impact of disease-related symptoms.

Read this post in its entirety:

Quality of Life for MS Patients: Is it Health-Related?

Thursday, February 12, 2009

Carnival of MS Bloggers #29

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

New Symptoms, New Research, New MS Bloggers

Do you know how people say, "I was so shocked that I almost fell out of my chair!"

Well, I did. Fall out of my chair, that is. Not once, but twice and shock had nothing to do with it.

The first time was a couple weeks ago at Ken's house. It was a rolling desk chair and I was in the process of sitting down. It was kind of a slow motion thing that ended with my ass on the floor. I thought maybe his desk chair wheels were faster-moving than what I was used to or that he had recently waxed his hardwood floors. Uh-uh. Apparently, it was me. Ken was right there and, although he seemed surprised by my lack of grace, he didn't seem overly concerned with the cause. So, I decided to forget all about it.

Until it happened again.

A week or so later, I repeated the whole thing while sitting down at my desk chair at work. One minute, I was lowering myself into the chair. The next I was on the floor. I work at a very casual office and my office attire usually consists of jeans and a sweater or a blouse and a jacket. On this particular day, I decided to dress up a bit. I'm not sure why, perhaps to give my coworkers a show when I landed on the floor.

I had on a fitted chocolate brown sweater and a straight leather, knee length skirt with an earthtone patchwork design. Thank GOD I was wearing pretty thick, chocolate brown tights and tall boots. Nevertheless, I was rolling around on the floor, in a skirt, trying to get up when I heard my coworker in a nearby cube say, "OH MY GOD! What happened? Are you all right?"
It was kind of hard to blow it off in this setting. First of all, there was a carpeted floor and it was the same chair that I'd been sitting in since I started working there last April.

So, it seems that I have a new MS symptom to add to the list. Falls out of chairs. I'm imagining it's balance related. All I know is that it definitely left a mark--on my ass and my ego.

When I discussed the second fall with Ken, he reminded me about the first fall and I thought Uh-Oh. He also proceeded to give me chair-sitting instructions complete with chimed in advice from his 13-year old son. "You have to reach back with your hand and hold on to the chair, making sure you are looking at your seat before you attempt to sit down," they explained, as if I was a little slow or had recently suffered a head injury.

I found this all incredibly amusing since I have been sitting down on my own for quite some time, at least 42 out of my 44 years, I would imagine. I didn't know that there were rules to sitting and that, if I violated these rules, I might end up on my ass.

When I pointed out the humor in this advice, Ken clarified, saying that because I'm having eyesight and balance issues, there are new rules.

New rules? Why wasn't I notified? Where's my copy of these new rules? If I'm expected to obey the rules, shouldn't I have an opportunity to study them and challenge the rule makers?

Will there be any other new rules coming my way? Should I give up sitting in chairs with wheels? Or, should I stop wearing skirts and start wearing a crash helmet?

I was reading Ladies Home Journal Magazine this week and they had a 3 page article on drinking Tea. They spoke of all the health benefits including increasing your bodies Interferon's. A Harvard study suggested that drinking 5 cups of black tea a day for two to three weeks increased production of a key immune protein, interferon. They said the reason was that L-theanine, an amino acid found in tea (and hardly anywhere else) can build up the bodies immune system and defenses against viruses and bacteria.

They also credited tea with sharpening your brain, boosting your powers of concentration, as well as relaxation. Drinking a cup of hot tea is relaxing. I will not quote the entire article, however, I do recommend giving it a read. I was intrigued, researched and found that Harvard did conclude the benefits in a 1998 study regarding Interferon's and L-theanine. It seems that all Teas may offer some benefit, however, only black tea was tested. You can also drink Green Tea, White Tea and Oolong Tea. The herbal teas, such as, Chamomile, Cinnamon, Ginger, Peppermint etc have their own health benefits as well, but were not included in the study.

This is a quote from the Harvard Study:
"Then, two weeks into the study, the researchers tested the blood of coffee and tea drinkers by exposing it to bacteria in the lab and comparing samples taken before the study to those taken two weeks later. "We found they [tea drinkers] made five times more interferon after they started drinking tea compared to before drinking tea," Bukowski says. The coffee drinkers showed no enhanced production of interferon."
So, I am going to start drinking 5 cups of decaf black tea five times a day and try to add it as part of my lifestyle. So maybe I can increase the Interferon's in my body without being on any Interferon shots. Hopefully, it will work or at least help. Can't hurt to test this theory. I'm tempted to see if my doctor has a way to measure my current interferon level and then again after a few weeks or a month. I'll have to investigate that.

Carla of Beyond It All says
"I am not drunk..."

Walking with an unstable gait, tripping, bumping into things, stumbling down the stairs, not being able to see clearly at times, fatigue, not being able to remember a specific word, name or phrase, not remembering what I’m doing, and so on are just some of the daily challenges I try to put in the back of my mind until it takes front and center stage as it did last night. As I was getting ready for bed in our bedroom, my legs decided to “give out” on me, but fortunately, I fell on the bed and not the floor. I decided to go to sleep right then and there. After chatting with a few people online who also have multiple sclerosis from the confinements of my bed via the Blackberry, I learned this is common with some people. This morning my doctor gave me a few suggestions including using a cane (!). I guess I wont be running anytime soon.

As I write this, it actually sounds worse than it really is but restrictions such as not being able to walk straight or worse, having increasingly poor cognitive skills are constant reminders of my limitations. Fear of falling down the stairs or worse are thoughts I try not to dwell on. Putting my pumps away in storage and searching for more ballerina flats online to replace my “cute and sexy” footwear is a minor lifestyle change that I do welcome in a way. Hey, its shopping!

Working at home on my website, blogging, conducting personal relationships, running errands, household chores, etc is difficult at times but manageable. The real challenge and sometimes shame and embarrassment happens at work. Awkward, clumsy, forgetful, distracted are just some of feelings I try to dismiss. The fear of someone noticing some of my challenges sometimes flash across my mind.

I’m sure I’m making too much of what others think but I did feel the need to tell my human resource manager last week about what I’m dealing with. I don’t remember my motive for telling him at the time, (it may have been fear) but I’m glad I did. Time off for doctors appointments and possible rest days were some of the things we discussed. When he gets back from his vacation next week, we will go over ADA policies, and my short and long-term disability benefits - if it comes to that. Hopefully, it wont.

Being disabled I use one of those electric carts to do my groceries. On Thursday, like many times before, a nice person offered to help me load the groceries in to my car in the parking lot. I guess she saw me with e-cart and trying to load the groceries in the back seat and wanted to help. Many times before, I would decline the offers for help. Then I realized that by refusing someones offer to help I was sort of being rude. Out of my own pride and suspicion from the jaded atmosphere of the Miami city scam world, I would say no. I felt that if I accepted I was being helpless. But recently I have found that people are trying to genuinely help, especially in this area, for now anyway, from the bottom of their hearts. So I have decided to accept those kind offers for help in reaching for something, putting the groceries on the cash register area, etc. anytime that a person offers their kind offer to help me. Needless to say it was a good feeling after I was helped the kind person chatted with me some small talk and went on their way. Like I said little things are always there that keep you going.

Tingly Feeling discusses
The Family Business

I’ve mentioned on Twitter and in a couple posts here, that my sister also has MS. She was diagnosed with relapsing/remitting MS in January 2000 at age 27.

Several years before her diagnosis, which was finally confirmed by an MRI, she’d been experiencing some symptoms and was given a spinal tap. It was 1994, I think. I was a sophomore in college, not living very far from home, but far enough that no one told me what was going on until it was over. They didn’t diagnose her then, so the topic was dropped and we all went about our business.

But in the following years, she’d still experience mild symptoms like facial numbness and ticks. She finally decided to see a doctor in 1999 after she noticed that she could only smile with half of her mouth and her eyelids were twitching uncontrollably.

Our family barely knew what multiple sclerosis was. I remember stumbling over my pronunciation of those words when she told me, double-checking to make sure I was saying it right.

So she’s been living with it–as long as she’s been aware–for nine years now. Her symptoms, which seem to be getting worse despite a lack of new lesions, are different from mine, but there’s some overlap. We can describe the myriad strange sensations caused by our symptoms and usually we understand each other because we speak the same language now.


Which is funny to me for several reasons, but mostly because we are such different people and our lives and the paths we’ve chosen have very little in common.

When we were growing up, we shared everything but a room and had sets of matching clothes and toys–one of each, in different colors so we could tell them apart. But we still had very different tastes. She painted her bedroom peach, I painted mine blue. She’s a little bit country, I’m a little bit rock ‘n’ roll. We don’t even look alike. She has red hair, I have brown hair. I’m tall, she’s short. And we think differently. She votes conservative (assuming she votes), I vote liberal (I like to exercise my right).

Now, we’re dusting off and strengthening our neglected sisterly bond because we both have MS. Some have said to me that it must be a blessing in disguise because it’s bringing my sister and me closer. I see their point, but I’m not quite on board with that. I do love my sister, but I’d much rather have something in common with her that didn’t suck so much.

Like a shared passion for breeding cockroaches.

In conclusion, Julie asks -

Every now and then I have a major realization about my MS. This time it came from a very hopeful article about using our own stem cells to reverse the damage (including vision impairment) caused by MS. The part that kicked me in the butt, though, was the line where the author said that, after out 10-15 years of having relapsing and remitting MS, the disease progresses to secondary progressive. It was stated as a universal fact.

Is that true? Is it 10-15 years after the diagnosis or the onset? And, if you aren't sure when the disease came alive in you, how will you know when you're time is up? And, since this is an unpredictable disease how the heck to you prepare for it to get worse? If you build wheelchair ramps and you go blind, you are shit out of luck. How will learning Braille help if you lose all short term memory or bladder function?

When I was pregnant with Ruby, I had 40 weeks to prepare. I bought diapers, took an infant CPR class, saved up sick time for maternity leave, and decorated a nursery. I read a ton of baby books and, after she was born, I kept reading, trying to stay a month or two ahead of her latest development.

When Zane was born 12 weeks early, I obviously didn't have as much prep time, but it was ok. I had done it before. I knew how to breastfeed and change diapers, and, in the 8 weeks he was in the NICU, I had tons of time to learn from the nurses, read preemie books, etc.

How is that possible here? I've read a TON of books about MS but they all basically say the same thing. It's a crap shoot. Then, there's the conflicting information. Use disease modifying drugs. Use LDN. Reject all the drugs and just change your diet. Eat lots of protein and low fat. Fast. Rest. Exercise. Keep busy. Rest.

I've figured out how to live with the MS today. I try to digest all the advice, listen to my heart, find people I trust, and take what I like and leave the rest. I give myself 3 injections of Rebif each week; I pray and meditate; I try to keep to a low-fat, low sugar, dairy free, red meat and pork-free diet; I do yoga; I walk; I write; I try to not be my former freakishly strong macho self when I'm not being a "non-compliant patient," I get my monthly Solumedrol infusions; and I try to live one day at a time.

But how do I prepare for the future? Am I being Pollyanna or Annie, to just trust that if I play "the glad game," "the sun will come out tomorrow?" Should I be DOING something?

This concludes the 29th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 26, 2009. 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 Monday, February 23, 2009.

Thank you.
Comments for this post.

Wednesday, February 11, 2009

Consulting with a neurologist

Please note that when you are referred to a neurologist, it does not automatically mean that you will be diagnosed with MS as there are still many possibilities. The initial appointment with a new neurologist will be a long one. A large portion of the appointment will be comprised of The Precise Neurological Exam. (Follow this link for the most thorough explanation of the neurological exam designed as an educational tool for medical students at NYU.)

Also for that first appointment, come prepared to complete “new patient” forms including a detailed medical history. It would be wise to take with you information regarding past surgical procedures, other health issues, and those of your parents/grandparents (ie. history of heart disease, cancer, autoimmune disorders, etc.) You want to give the doctor as much pertinent information as possible.

Since my MRI had been conducted without gadolinium (a contrast agent injected into a vein halfway through the MRI procedure), the neurologist ordered a new series of MRI scans of the brain and cervical spine, with and without contrast. This is necessary so that active lesions will show up more clearly.

Other tests included a battery of Evoked Potentials to calculate the speed and response of electrical impulses over sets of nerves and a Lumbar Puncture to test for oligoclonal banding in the spinal fluid.

It is possible - even after finding a lesion or two on the cervical spine, testing positive for oligoclonal bands in the spinal fluid and positive for damage to an optic nerve during the evoked potentials - that you may not receive a diagnosis of definite MS There are very specific criteria involved in diagnosing MS. For an overview, read By What Criteria and Guideline Were You Diagnosed with Multiple Sclerosis.

Read this post in its entirety:

Beginner's Guide to MS: Consulting with a neurologist

Tuesday, February 10, 2009

Clinical Research Study: Teriflunomide

The following research study is enrolling. For information about the drug, see Spotlight on Teriflunomide (pdf) in The International MS Journal 2008; 15:62-68. is information found on regarding Teriflunomide.

A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis

Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.

The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.

The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit or call 1-866-565-0246 today to learn more about the study and see if you may qualify.

Monday, February 9, 2009

Marijuana Use Increases Testicular Cancer Risk, Study Reports

The following article (hattip): The Multiple Sclerosis Resource Centre (UK)

Cannabis - Testicular Cancer Link

Frequent or long-term marijuana use may raise a man's risk of testicular cancer, American research suggests.

The study of 369 men, published in the journal Cancer, found being a regular marijuana user doubled the risk compared to those who never smoked it.

The results suggest that it may be linked to the most aggressive form of the cancer.

A spokesman for Cancer Research UK said that no previous studies had found a link between marijuana and the disease.

Testicular cancer is one of the most common cancers in younger men, with approximately 2,000 new cases each year in the UK.

Incidence in Europe and North America is far higher than in some other parts of the world, and has been rising steadily for no apparent reason.

Known risk factors for the cancer include previous injuries to the testicles, a family history of the disease, or suffering from undescended testicles as a young child.

The study from scientists at the Fred Hutchinson Cancer Research Center in Seattle is the first to look specifically at marijuana use in relation to the disease.

They studied 369 men aged 18 to 44, who had been diagnosed with testicular cancer, and quizzed them about marijuana use.

Their replies were compared to those from almost 1,000 apparently healthy control subjects.

Even after adjusting the figures to take account of the other known risk factors, marijuana use remained a clear risk factor for testicular cancer.

Just being a marijuana smoker seemed to carry a 70% extra risk, while those who smoked it regularly, or had smoked from an early age, had twice the risk compared to those who had never smoked it.

A connection was made to nonseminoma, a fast-growing form of testicular cancer which accounts for approximately 40% of all cases, and tends to strike younger.

Puberty chance

Dr Janet Daling, one of the authors, said that puberty might be a "window of opportunity" during which boys were more vulnerable to environmental factors such as the chemicals in marijuana.

"This is consistent with the study's findings that the elevated risk of nonseminoma-type testicular cancer in particular was associated with marijuana use prior to 18," she said.

Another research, Dr Stephen Schwartz, said: "What young men should know is first, we know very little about the long-term health consequences of marijuana smoking, especially heavy marijuana smoking, and second, our study provides some evidence that testicular cancer could be one adverse consequence."

The next step, he said, would be to look more closely at cells in the testicles to see if any of them had receptors set up to respond to cannabis chemicals.

Henry Scowcroft, from Cancer Research UK, said: "As the researchers themselves point out, this is the first inkling that there is any association between chronic marijuana use and testicular cancer.

"But the researchers only interviewed a relatively small number of men.

"So before we can reach any firm conclusions about whether this is a cause-and-effect relationship, rather than a statistical blip, the result needs to be replicated in a much larger study."

Source: BBC News © British Broadcasting Corporation 2009 (09/02/09)

Sunday, February 8, 2009

Acorda Therapeutics seeking FDA-approval for Fampridine-SR

...Acorda Therapeutics, Inc. would like you to know that on January 30, 2009, they submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for Fampridine-SR, a novel therapy developed to “improve walking ability” in people with multiple sclerosis.

Fampridine-SR is a sustained-release tablet formulation of the investigational drug fampridine (4-aminopyridine or 4-AP). In laboratory studies, fampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged. Currently, 4-aminopyridine (4-AP) is only available through compounding pharmacies, while Fampridine’s patented release formulation has been developed to provide a more consistent level of medication.

For lists of published studies regarding 4-AP and Fampridine-SR, see What is 4-aminopyridine? and 4-AP, Fampridine-SR, and Multiple Sclerosis. I had taken an interest in Acorda and Fampridine last summer, the result being a series of posts outlining the research involved in bringing this product to market.

The first clinical study of 4-aminopyridine in MS patients was published in 1983 and focused primarily on visual symptoms. The Phase 2 and two Phase 3 studies conducted by Acorda, total enrollment 660, focused on walking speed and lower leg strength. Through extension trials, 463 patients (approx 70%) continue to take Fampridine-SR with treatment duration ranging from seven months to almost five years.

Read this post in its entirety:

Does the demyelination from multiple sclerosis affect your ability to walk?

Saturday, February 7, 2009

One Year Ago

The following is a post I shared last year, originally on Feb 5th with follow-ups through February 8, 2008. Tomorrow is the anniversary of his death. My dear friend, Joshua.

Today I am sad...

This is Joshua.

My dear old friend.

My companion.

He is 19 years old

and he is dying...

He stood by his water bowl today and meekly meowed...

He was sick Sunday night with massive diarrhea and today the vet says that his intestines, kidneys, and liver are shutting down.

I'm not he is receiving IV fluids, some glucose, and an appetite stimulant. Since his circulation has slowed down his thyroid meds (delivering transdermally on the ear) have not been absorbing well and puts more strain on his heart.

After a day in the kitty infusion center, he will come home with me. If the fluids and meds do not help at this time, it will time for me to let him go.

My friend who...

...entered my life before my senior year in college at the University of Oklahoma. named after an angel who touched the life of someone I once loved.

...dialed 911 (speed dial on a speaker phone), summoned the police, and scared my roommate.

...would like to ride on my shoulders while traveling to and from campus on weekends.

...learned how to travel 5.5 hrs in the car when I was at Baylor University.

...was lease-trained and loved to roam the courtyard at my apartment while being hooked to a post. He enjoyed the sun and grass so.

...was afraid of the clarinet after a fellow graduate student played in my apartment. However, he enjoyed listening to my horn until he got jealous of it and would sulk in the bedroom while I practiced in the livingroom. [It's hard to imagine now, but my rent in Waco in 1990-1992 was only $275 a month...about the same rate which my parents' mortgage payments were for the home they bought in 1979. I can only dream.......]

...loved to jump into the linen closet at my parents' house and play with the door. This was practically the first thing he would want whenever I visited my folks during school breaks. He would run down the hallway, stop in front of the linen closet until I opened the door, jump in and either play or curl up in the back on top of the towels and take a nap.

...didn't really like traveling to Bloomington, IN after I moved there to work on a doctorate in music at Indiana University. However, we did seem to work out a routine which alleviated his anxiety a bit on those 13-hours journeys.

...has flown on airplanes numerous times and took it in stride.

...learned to 'bark' like a dog after a neighbor moved in with a young dog. Joshua would go towards the door and make a meow/bark noise which was part 'hump' and part 'mmreow.'

...learned to climb the concrete trellis in front of my apartment door and go up to the second floor. But then he would meow loudly because he was stuck and needed for me to come rescue him.

...would not chase mice, drink milk, nor eat tunafish. But he likes to eat raisins, chew lettuce, and bite on rose petals. And I did witness him eating a cricket he had been playing with once.

...has now lived in three homes here in northern Virginia where he is always the king of the manor. He has us trained, especially me, to get up - go to his favorite spot in the livingroom - reach down to pet him while he rubs his head in a crinkly plastic bag. Aw, that's heaven.

...has been a part of my life longer than any other non-relative out there.

But for now, I have to give him a chance with fluids and care.

His spirit is strong though I am sad.

  1. Merelyme said,

    oh no...i am so sorry lisa. spend as much time as you can with joshua. this is such a difficult time when a pet is near their time to go. sweet kitty...i am just so sorry.

    on February 5, 2008 2:01 PM

  2. Shauna said,

    I'm so sorry to read about your angel. Give him lots of love to ease the transistion. And be extra nice to yourself too.

    on February 5, 2008 3:06 PM

  3. Jim said,

    This is sad. I remember when I had to put my dog to sleep.

    19 years is a long life.

    Hugs, Jim

    on February 5, 2008 6:13 PM

  4. LISA EMRICH said,

    Thank you each so much for your kind words and thoughts. Joshua's bloodwork surprised the vet yesterday as his kidneys had not shutdown yet (otherwise the plan was to euthanize) and he has an infection. I brought him home yesterday evening and have been simply spending some time. He doesn't seem to be in distress and he is responsive. He has shown thirst and will drink a little sugarwater, but he won't be tempted to eat. He seems to enjoy being gently stroked and held, but without eating he's not going to last long and I don't want him to suffer. This has happened SO FAST as he looked like he didn't feel well on Sunday, but he was eating on Sunday. I can hardly stop crying.

    on February 6, 2008 1:02 PM

  5. All of Me said,

    how is he doing this evening...i have been thinking about you all day.

    on February 6, 2008 8:21 PM

  6. Donna said,

    I wouldn't be able to stop crying, either. I have two cats that are only a couple years old... I can't imagine losing one of them at any future point in my life, I love them sooooo much, they have saved my life. DAMN now I'm crying!!!

    on February 6, 2008 11:44 PM

  7. Shirl & Lola said,

    Having been a cat owner & lover all my years, I feel for you both. Take care, take heart & store up sweet memories for the day that will surely come, now or later, Lisa.

    When you are ready, let us know how you both are, please.

    on February 8, 2008 5:15 PM

  8. LISA EMRICH said,

    Hello all,
    Joshua is a fighter with a strong will. He stopped eating (sunday) and drinking (wednesday morning). He refused to fall completely asleep for days and shortly after I would think he had, he would lift himself up and shift positions.

    It became apparent late yesterday that he wouldn't last long before nature took him. But wouldn't you know it that this morning he had found a way to go down the stairs and was sitting against the front door wanting to go outside. I honestly can't picture how he went down the stairs since he had become so terribly weak. His heart kept going strong while his paws became ice-cold this morning. I made several phone calls this morning and finally found a vet who could come to the house to put him down today. His veins had already collapsed so the vet injected his paracardium (the sac around the heart.) I held him as he very slowly slipped away, even then his heart didn't want to stop beating. Simply amazing.

    I've had four days of crying and four days of pure caring for him. He still had his cognitive wits about him and remained responsive to voice and touch while expressing his preference for long strokes on the head to long strokes down his body. His mind was still present.

    He is now buried in my front yard beneath a large blue spruce tree (looks like a massive christmas tree) where he had enjoyed lying in the sun. Thankfully the ground was soft and the weather was warm (not typical february). After 19 years, I'm sad to have to say goodbye but I am glad that he had picked me as his human servant, caretaker, and friend way back when I was 20. It will feel very lonely around here for some time.

    on February 8, 2008 6:28 PM

I am very glad to have my new baby kitties, well eleven month old kitties that is. Musette and Pippin are wonderful in the family. But I am still sad today. Tomorrow is the anniversary and it has hit me like a ton.

Friday, February 6, 2009

New MS Bloggers on the Block

Please welcome these bloggers who are living with multiple sclerosis. Some of the blogs are brand new (ie. tinglyfeeling), some I've been reading for a while but forgot to mention, and some I just recently stumbled upon.

Tingly Feeling - Adventures in Multiple Sclerosis

Just Call Me Grace - Anne

Beyond It All - Carla

The Adventures of Emma Lucille - Jenny (mother of a young one)

Caring and Sharing - Morton

The Wheel of Fortuna - Steve and BobRobert

Paul’s Quest for Brain Health

Stuff Could Always Be Worse - Kimberly

Latte Buddies - Kerri

My Weight Loss Journey - Katie
Fighting Multiple Sclerosis and the Monsters Within

Thank you readers for helping me to foster a welcoming MS Blogger Community for us all.

Thursday, February 5, 2009

Sharing MS with Your Children

Yesterday, Julie shared an excellent post, Telling my Kids, in which she describes discussing multiple sclerosis with her children.

“It was shortly after that when I started talking very openly in front of my kids about having MS. It was on my mind a lot so I brought it up a lot. Instead of waiting for the questions, I integrated talk about MS into my conversation. It wasn't in a complaining way. Instead, I welcomed it into our household instead of holding it at bay. If I didn't feel like making dinner, I didn't think twice about saying "Looks like peanut butter and jelly sandwiches on your own tonight." If I was struggling to understand a rapid-fire, meandering conversation among family members, I would speak up and tell them to slow down.”

The National MS Society (NMSS) has created an interactive resource, Keep S’myelin, designed especially for kids (5-12) and their parents to learn about MS in a fun and positive way. New issues are published quarterly. I was having fun the other day just browsing through the available issues online. Good stuff!!

Rest this post in its entirety:

Beginner's Guide to MS: The Impact of MS on Your Children

Wednesday, February 4, 2009

So...My fingers are numb, should I call the doctor?

You’ve developed a strange little numbness and tingling in the fingers of your left hand. It doesn’t really hurt, but it’s just.... odd. Maybe the tingling goes away on its own and you don’t think about it again. Or maybe it sticks around and even starts to slowly grow so that now your forearm is numb, too.

Do you call the doctor? For some tingling fingers....

There are many possible causes of numb fingers. Let’s assume that you didn’t just break your fingers; because if you had, you’d be in the emergency room seeking medical attention.

The numbness could be caused by (but less frequently) by frostbite, leprosy, or rare genetic disorders, such as Haim-Munk syndrome or hereditary neuropathy with liability to pressure palsies.

Do you have diabetes? Pernicious anemia? Hypothyroidism? Peripheral vascular disease? Lupus? Raynaud’s syndrome? Guillaine-Barre syndrome? Cervical spondylosis (aka osteoarthritis)? Carpal tunnel syndrome? Or a pinched nerve?

Maybe you do have a demyelinating disease such as multiple sclerosis (MS) which affects the central nervous system or chronic inflammatory demyelinating polyneuropathy (CIDP) which affects the peripheral nervous system.

Read this post in its entirety:

Beginner's Guide to MS: My fingers are numb, should I call the doctor?

Monday, February 2, 2009

The HealthCentral - Wellsphere Acquisition

A number of MS Bloggers were approached by Dr. Georg Rutledge and Wellsphere to join their network of Health Bloggers and did so. By now, those of you who did join the Wellsphere Health Blogger Network have already received the Open Letter.

An Open Letter...

January 26, 2009

Dear Wellsphere Community Members, Health Mavens, and Health Bloggers,

Earlier today HealthCentral, a leading publisher of over 35 websites for individuals facing specific health challenges, announced that it has acquired Wellsphere.

This is an incredibly exciting moment for every contributor to HealthCentral’s and Wellsphere’s communities, and for the 10 million health consumers who, each month, seek and find powerful information and invaluable support from each of you. Our communities offer unparalleled insight, practical advice, and inspiration for people who want to live better and fuller lives.

Read the entire letter.

Read the Press Release: HealthCentral acquires Wellsphere.

Most important are the questions bloggers and experts may have regarding the acquisition:

Questions about HealthCentral and the Wellsphere Acquisition

Sunday, February 1, 2009

Blog Amnesty Day and a Little Linky Love

A unique Internet tradition and its great holiday is celebrated on February 3, Blogroll Amnesty Day, a day when we salute smaller blogs. Blogroll Amnesty Day, or B.A.D., was not always such a happy day. In fact, the first Blogroll Amnesty Day, way back in ought seven, was one of the darkest days in the blogosphere. Read here about that once terrible day which has been turned into a celebration and an annual tradition.

Celebrating Blogroll Amnesty Day is easy. I've started with the MS Blogger Blogroll. What you can do is copy/paste this post (including the links!!!) and post it on your own blog. If you do something special to celebrate, like ZenComix who has drawn a cartoon, please let me know. You can also let the originator of the tradition know what you are doing to celebrate by emailing Jon or Skippy.

Thank you for celebrating with me spreading some Linky Love!!