Thursday, December 5, 2013

Carnival of MS Bloggers #150

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

From Life Well Lived


nest
As I am listening to The Black Swan, The Impact of the Highly Improbable  by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking.  I can not help it.   Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me.  As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.

One of his examples is the 1,001 days in the life of a turkey.  For the first 1,000 days of the Turkey’s life, the farmer is the good guy.  In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.
Unfortunately for the turkey on the 1,001st day, the farmer has come to begin the Thanksgiving celebration preparations.  The 1,001st day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed.  The farmer was not providing food because he wanted to make the turkey happy.  He was doing it to fatten him up.  Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”

One of the central points in the book involves one of my favorite topics, perspective.  In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making.  For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him.  It is the 1,001st day that shows how wrong he was.  If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey.  Instead, they should be mindful of the story of the 1,001st day.

I try to take this story to my MS treatments.  I have been on Tysabri for 7 years, and it has been a quality of life saver for me.  If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells.  I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection).  Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study?   I do not pretend to know all that may go wrong.  When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like patientslikeme.com.

What I know is like the turkey during the first 1,000 days, I am currently happy and thriving.  When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths.  Still, other treatments had failed to abate my increase in symptoms.  Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.”  Nobody is promised the 1,001st day.  For that matter, nobody is promised tomorrow.  In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”

Now, I as I listen to the rest of the book, I am keeping in mind two facts:

First, nobody should stay on Tysabri for 7 or more years simply because I have survived.  To do so would be to fall for one of Taleb’s unseen biases.  Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it).  So deciding based on my blog and others like it may be and probably is unwise.

The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life.  I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points.  I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller.  As one of my teachers said in high school, the victors write the histories.  However, even they do not always know the truth behind why they won.

Still, without stories, we are left with only statistics.  Ironically, pure math misses as many truths as relying solely on story telling.  I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.”  She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20.  I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people.  It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.

So with this in mind, I come back to Tysabri and the turkey.  I continue to take it because it makes my life now better.  Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers.  They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered.  I may have my 1,001st day in the life of a turkey, but it will be after having lived for the full 1,000 days.  I prefer this to the life of the turkey who chooses to live always hungry, always wanting.

I note Thanksgiving does not come at the 1,001st day of every Turkey’s life.  In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided.


This concludes the 150th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 2, 2014. 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, December 31, 2013.

Thursday, November 7, 2013

Carnival of MS Bloggers #149

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

by Alison of One Shot Two Shot Red Shot Blue Shot

I seriously do not know how parents who both work outside the home full time do it.

I "work" at home, and we still find it incredibly challenging to ensure that our nine-year-old keeps up with all the homework she's getting. Luckily, because she and Graham come home to me after school and not to after school care, I can encourage her to do some of it right away. This has actually happened on several occasions. But even if she doesn't get to it until after supper, because I'm home we are usually done with supper by 5:30 or 6:00 and there is still an hour before bed time rituals begin.

I know that some children are not even picked up from their caregivers until 5:30. Supper in homes where both parents have outside jobs may not even get onto the table until 6:30 or 7:00.

If my daughter is too tired to finish her homework after supper or, as on Tuesday evenings, has an outside activity to attend (Hip Hop Dance), she is lucky to have me here in the morning to make sure she sits down and completes what she didn't finish the night before. Quite often she breezes through homework in the morning that she was struggling with the evening before.


We are so lucky to have the luxury of time. Although it is not an ideal situation financially (!), the fact that my illness makes working full time outside the home a virtual impossibility and definitely a bad idea, may just be a blessing for our family. True, we only have one car and will probably never be able to afford a bigger house, but we have enough to live comfortably. I am here with a listening ear when the kids come home from school, and I walk them to school in the mornings.

My husband benefits from this situation as well. We don't have any childcare expenses which, even for after-school care, can be substantial, and he doesn't have to worry about taking time off when they are sick, because I'm here to look after them.

Although I'm sure there will be things that the kids will regret about the fact that they had a mom struggling with MS, at least it has given me the opportunity to be present for them in a way that a lot of my friends can't be. No doubt they will be sick of me by high school, but I will still be here, keeping an eye on them, checking on homework, making dumb jokes and cooking chicken nuggets for supper.

~ Alison


This concludes the 149th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 5, 2013. 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, December 3, 2013.


Thursday, September 19, 2013

Carnival of MS Bloggers #148

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

By Miss Chili's Hot Stuff

Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.

Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.

Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk want to participate in, and not just once but as often as there is space available.

Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it.


from Miranda's MS Blog

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

george Jelinek et al, breakfast OMS meetingSo in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?
a) I didn’t know it all… & I’ll share my new understandings here,                                b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!
for this, it helped having a little cell, with no TV or internet connection….

Prof Jelinek & his wife SandraSo, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

prof jelinek teaching UK retreatHere’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation
I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.


This concludes the 148th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 3, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 1, 2013.

Thursday, September 5, 2013

Carnival of MS Bloggers #147

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

By Jennifer Digman

Not so long ago, it really would puzzle me when someone would tell me what an inspiration I was. Generally, I would smile, say thanks and think to myself, “You really should strive to find inspiration in something a little higher than me and my Multiple Sclerosis.

I mean, has anyone ever told you what an inspiration you are? An inspiration not because of your latest accomplishment but because you’re living with MS or some other illness.

Really, like you had a choice in that matter?

It wasn’t as though some great mystic force said, “How about living with a chronic illness for the rest of your life?” and your reply was, “Why, yes. That sounds good like a good plan.” And your inspirational life began.

But it was my amazing husband, Dan, who made me realize people are not inspired by my just having Multiple Sclerosis: it is how I live with the disease that inspires others. My choice to move forward optimistically and with purpose regardless of what the disease dishes out may inspire some. I don’t live hoping to be an inspiration, but what a nice side effect to the decisions I make.

Honestly, there are times when my positive attitude tank gets a little low, too. Fortunately I’ve realized that inspiration can be found all around us. For example, after finishing my graduate degree and unburying my nose from textbooks, I’ve rekindled my relationship with my neglected television and have found some great sources of inspiration.

The Sundance Channel program Push Girls follows the lives of five women who have been paralyzed by either illness or accident. The reality show chronicles the day-to-day challenges and triumphs that Angela, Tiphany, Mia, Auti and Chelsie each encounter. Since my becoming wheelchair dependent, I had never seen such honest, accurate depictions of life with a chair.

My beautiful niece Elizabeth joins me on my Standing Frame
My beautiful niece Elizabeth joins me on my standing frame.
These ladies are role models, inspirations and my peer group all at the same time. When Mia or Chelsie used a standing frame, they were strengthening their muscles—not thinking, “Hope this inspires someone.” But it did inspire someone – me. After buying my own used standing frame, I now stand 2 to 3 times a week for 30 minutes at a time. My circulation and breathing has gotten stronger. I feel more powerful and better about my abilities.


Just as the summer season ended for Push Girls, I slipped into Lifetime’s hit fashion show Project Runway another one of my other TV favorites! But never did I expect this program would introduce me to a designer who inspires me in my life with MS.

Justin is a 27-year-old fashion designer who is deaf. He is incredibly talented and lets his work speak for itself. As he has gotten closer to his fellow designers, Justin has taken the opportunity to gradually educate them about his deafness and the deaf culture. His opening up to others about his realities is the same way I aspire to help others understand MS and what it’s like to live with this chronic illness Dan and I share.

This is why he and I advocate, blog, speak and lead a self-help group. In addition to helping to better our lives, these activities also provide opportunities to help others move forward with theirs.

Like all five Push Girls and Justin, I don’t believe any of us are trying to be inspirational. We are just living our lives as best we can—much like so many of you who are inspiring so many others just by the way you live.

Do you ever think you are an inspiration to others? Whether or not you realize it, you are.

Every day.


This concludes the 147th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 17, 2013.

Thursday, August 22, 2013

Carnival of MS Bloggers #146

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

by Joan of A Short in the Cord

It has been over two months since I returned from my trip (aka my “heroic journey”) to Provence in southern France.  

I continue to process my feelings and experiences from that great adventure, but think it's time to share some things with you because people keep bugging me asking me, "was it a good trip?" :-)

Okay, so I brought back some things: postcards from the Chez Christine café in Saignon, bookmarks from an art gallery in Bonnieux, jams from a cherry festival in Casenuve, tapenades and placemats from a souvenir shop in  Fountain de Vaucluse.

I ate tender and tasty lamb wrapped in eggplant in St. Pantaleon les Vignes, and rabbit in Apt.  I tried goat cheese, sheep's cheese, French coffees and wines.  I marveled at the amazing geology of the mountains, explored the trees and plants, and tried to identify birds.  I hiked, I drank, and I sat by the pool having deep conversations with deep people.  I said "wow" and "yum" a lot!  It was exotic and exciting.

But I was exhausted for almost the entire trip.  I'm not complaining.  Really.

I'm reminded of the song "My Body" by Young the Giant, which goes "…my body tells me, 'no,' but I won't quit 'cause I want more." And I wanted more of the experience of France.

I had physically prepared for this trip by working out and increasing my time and distance on the treadmill.  But I also studied meditation and practiced awareness, and worked on living in each moment. 

I had no problem with the walking, the climbing, the carrying luggage.  But I did have a problem with fatigue from over- stimulation, communicating in another language, dealing with disruptions in routine.  By the third day, I wrote in my journal that I was scared, didn't think I could make it to the end of the week because I was just so tired, so overwhelmed.

But then my zen training took over and I told myself to live in the moment.  Just this moment.  Right now.  Only right now.  Don't worry about the rest of the week, worry about just this moment.  And I can get through this one moment.

I savored each moment.  Then another.  Then another.

As I mentioned earlier, I brought back a few souvenirs (and pictures).  But they really don’t matter.  What matters is that I brought back a desire to continue to have fresh experiences, a willingness to try new foods, and a renewed confidence that I can go out in the world again with multiple sclerosis and debilitating fatigue.  Even if it's just for one moment.

So, YES, it was a good trip!


Back to Home Page

PS - In case you missed it, here are links to my Heroic Journey:
Part 1 - The Call
Part 2 - After the Call Is Answered
Part 3 - What to Take on a Heroic Journey

This concludes the 146th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 17, 2013.

Thursday, July 25, 2013

Carnival of MS Bloggers #145

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

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

This concludes the 145th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 22, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 20, 2013.

Thursday, June 27, 2013

Carnival of MS Bloggers #144

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

by Rex Parker of Biking MS

The reason I support the National MS Society is well-known to readers of this blog. There are so many other compelling stories from people I'm connected with that I wanted to start sharing them with you...

The more of these stories I hear, I realize that their stories are mine and mine is theirs - we're all connected. So many families struggle to cope with MS. So many of us have lost family members and close friends. I hope that many of you recognize your own struggles in these stories, and get the same sense of support and camaraderie that I do. And a sense of hope that we can all work together to realize a world free of MS.

First off here's my friend Megan Nettleton, Community Relations Specialist for the National MS Society here in Boise. Megan's story is well-known within the MS community here in Boise. Megan is married to Chris Nettleton, the sports director for KBOI Channel 2. Chris suffers from MS, and has been a vocal and active supporter of MS Society events here in town, often lending his talents to emcee events. 


Megan and Chris
Megan's story is interesting to me, as she has a unique personal and professional connection to the MS Society. Here's her story, in her words...

“Before working at the National MS Society, I managed a bank for six years. I was never one to believe that anyone could truly love their job, but I am a believer now. My husband has MS, so it is an amazing feeling going to work and ultimately helping my husband every day! Who else gets to say that they get to do that? And now, it is not just about him anymore, but I now work here for all the amazing people I have met along the way, people like Rex! People that give so much of themselves without a second thought. That is why I support the National MS Society…because they support me!”

Me and Megan at "Meet Me Monday"
Just think about what most people do when faced with an MS diagnosis in the family. Sure, there are phases of anger, denial, depression, etc. But Megan not only went about arming herself with the knowledge she'd need to help and support Chris - but she also went to work for the one organization that will give them the most support during this ongoing fight. Megan has the unenviable task of being a one-person shop here in Boise, and I appreciate the positive energy and dedication she brings to the job.


And, to give you more insight into what Chris and Megan have to deal with, I swiped the following post from Megan's Facebook page. This is something she wrote when raising funds for her Walk MS Boise team...

"I was thinking today that a lot of you probably don't know very much of my husband's story and his multiple sclerosis diagnosis. And here I am asking you for donations quite a bit lately, so I thought I would share a little bit about his journey:

In 2008 his feet went completely numb. His doctor thought it couldn't possibly be MS because it was in both feet equally - so he went through a lot of testing, including electro-shock therapy on his legs, and muscle tests that involved shoving a 3-inch needle into his calves and moving it around to see if his muscles were working properly. Crazy, I know. Then he had an MRI and based on those results, his neurologist told him that he either had a brain tumor or MS. It is weird to say this, but luckily, it was MS and not a brain tumor. 

Because my husband is an all-or-nothing kind of guy, he went on a therapy immediately, which entailed me ramming a 3-inch needle intramuscularly into his thigh. And any of you that know my husband - he is majorly phobic of needles, but this was something we did for the next 2 1/2 years. And then one day he went in for a generic check-up, and surprisingly his liver numbers were way elevated. They discovered that the therapy had started to damage his liver, so he had to immediately go off of it. His only other option at this point for therapy: a DAILY shot. Great. But, my husband bravely endured it for one month, even though he had a severe skin reaction that caused his body to be covered in red, itchy, sore welts that never seemed to go way. 

What other choice did he have? Remember...all or nothing! 

It was then that the first pill for people with MS was released...TRIUMPH! He has been on it ever since, and has done very well! And this is all thanks to research...which brings me to my conclusion: please donate to our Walk MS Boise team to help raise money for research so more therapies may one day be available!"

Of course, the funds we are raising for Bike MS contributes to the same research that helped provide new therapies for Chris.

Thanks for sharing that, Megan! Look for more "other voices" stories over the coming weeks...

This concludes the 144th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 11, 2013. 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, July 9, 2013.

Thursday, June 13, 2013

Carnival of MS Bloggers #143

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

by Annettia at My Life According to MS

I still have days where I forget about my new reality.  I guess sometimes it is quite easy for me to forget.  I mean, minus the bone-numbing fatigue and the almost peeing in my pants at least once a day and the excruciating nerve pain I really can forget that I have different abilities.
I mean, I guess that’s expected, right?  I am still considered a newbie…I think.
So, sometimes I forget about my ability status.

Until I am reminded…

Usually by that cold, hard, deep blue rear-view mirror placard I keep in my purse.
This recently happened to me.  I’ve been feeling quite “normal” whatever that means.  Then this week it was a tad humid and I’m kind of fighting a cold or allergies or something.  That always messes with my abilities.  Then it was a bit warm at work.  And I had to walk quickly.  And I started to feel off…

I always start to get a little bit scared and worried when that feeling happens.  You know, that feeling where my legs get a little weak.  And this isn’t the good weak like I just saw my crush walking toward me.  This is the weak where I may not be able to walk to my car after work.  Or the kind of weak where I may need my mom to wheel me out of Target in the shopping cart.  Or the kind of weak where I have to find a seat in the middle of a store and rest for a bit before I move on.

Then, the unthinkable happened.  I went to lunch with my work team to celebrate a coworkers baby.  My supervisor sat right next to me. 

Now, remember, I keep my handicap placard in my purse in case I’m ever not driving and I need it.

I am normally very aware of the bright blue placard in my purse and do a fabulous job at hiding it from people that do not yet know of its existence.
Until this day.

Oh yeah, I totally forgot that I was with an entire TEAM of people that are not yet aware of my ability status.  And I am not yet ready to inform this team of people.  And my supervisor was right next to me.

As I was shuffling through the contents of my purse looking for my wallet, my cold, hard, blue placard found its way to the top of my purse and poked its head out of the zipper.  I noticed my supervisor discreetly glance at my purse right at that moment.
I think I was found out.

But she didn’t say a word to me.
We are all therapists!  Come on.  What would she say?  “Why are you a cripple?”  Or, “You don’t look like you need that!”  I doubt any of those words would come out of her mouth.

But I still felt that fear.
I made it through the rest of the day without any other incidences involving my ability status and actually forgot about the entire scenario until I was driving home that evening. 
That’s when it hit me.
I have a disability.
I honestly, truly, 100% have a permanent disability.

What. The. Hell.
And cue the uncontrollable tears. 

How do I forget these things?  It’s not like MS is easy to forget.  Especially when it pervades every single fragment of my life.  It’s not as if MS is something that just fades into the distance and can easily be forgotten.  It’s not like I don’t wake up every single morning wondering if this will be the day when my next relapse hits or the day where my legs decide to not work again or the day my eyes decide to develop optic neuritis.

But the fact of the matter is…I often forget.
Until I am reminded by that cold, hard, blue truth.
I think I would forget more actually, without that placard.
Maybe I have a lesion on that part of my brain that should remember about my disability!

This concludes the 143rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 27, 2013. 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, June 25, 2013.

Thursday, May 30, 2013

Carnival of MS Bloggers #142

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

by Rex Parker of Biking MS

A lot of you know that I ride Bike MS in honor of my late brother, Rick. But only a few of my friends in Boise were fortunate enough to get to meet him. So I thought I'd write a bit more about Rick this week, so that everyone could get to know him a little better.

First off - I had three older brothers, and had a very different relationship with each one. Here's the line-up...before you start writing comments about my cardigan, I should tell you this picture is 25 years old.

From left to right: Russell, Robert, Rex (me), Rick
I am the youngest, Rick the oldest. Despite the age difference, he was my best friend. Russell was closest in age to me, so of course we fought all the time growing up - and there's still some tension there today. Robert helped raise me as my parents farmed and held down second jobs. My relationship with Rob was more parent-child growing up, so that was often adversarial as well. That changed as I got older - Robert and I grew very close in our adult lives.

Rick, however, was always my hero. I absolutely idolized Rick growing up. Being the oldest, he was in and out of the house when I was a kid. His visits from college were the highlights of my year. I'd count the days until he arrived for a visit, and I'd cry when he left. Many of my best childhood memories include Rick.
Rick Parker, HS Senior Photo, 1975
One of those many memories is when Rick took me to see an R-rated movie when I was 8 or 9 - the first "Alien" movie at the drive-in in Terry, Montana. My parents told him not to, but he knew I wanted to go and snuck me out of the house to see it. I spent a good part of the movie on the floor of the car, scared to death. But I loved it. If my parents read this post, this may be news to them.

Rick also taught me how to shoot a basketball. If you've ever seen me play basketball, you'll realize I'm not doing Rick any favors by telling you this.
Rick fostered my love of reading - and his gifts of books were a constant throughout my life, starting at age 7 with a science-fiction art book that I have to this day. Rick was not a casual gift-giver, either - nearly every book I got from Rick has a hand-written inscription inside. Rick was a gifted writer, and majored in journalism in college. I treasure those books.

When Rick was crippled by MS, he kept the gifts coming. He once wheeled himself downtown several miles to meet Steve Earle (one of my favorite music artists) before a concert, at a book signing for Steve's first book, "Doghouse Roses." And then he wheeled himself home in the dark. All for a gift - not a birthday gift, not a Christmas gift - just a random gift that he knew I'd love.

Rick and I often liked the same books. Rick once read a book called "West With The Night," an autobiography of the first person, Beryl Markham, to fly over the Atlantic from East to West - and he knew I'd love it. Rick had a very hard time leaving the house in those days, and had no use for computers (no internet shopping for him) - so for Christmas that year, he inscribed and gave me HIS copy of the book.

I could fill an entire blog post with nothing but stories about Rick's giving. If he had $10 to his name, he'd want to give you $20. And he always wanted to provide the best for his kids.

Back to the pre-MS days...

When I graduated high school in 1987, I left home immediately to go spend a year screwing around with Rick in Missoula, Montana. Rick had just met his future wife, Earlene, and would soon be starting a family. I was driving a 1966 Chevrolet Biscayne that was on its last legs, so I biked a lot that summer. Having no bike when I got to Missoula, Rick set me up with a sweet old Schwinn Le Tour.

Rick's family from left to right: Travis, Rick, Earlene, Jeramy - around 1994
Rick was an avid road cyclist, and was starting to get more serious about it - he had just upgraded to a 1987 Schwinn Super Sport - which was a very expensive purchase, I'm sure, for a guy trying to finish college and working nights at a hotel. As many of you know, that Schwinn Super Sport is the bike that I rode in Bike MS Idaho last year (more on that bike later.) One of Rick's favorite events was TOSRV (Tour of the Swan River Valley) and he was also the top fund-raiser in the 1987 Montana Lung Association ride, where he won an early mountain bike - a Bianchi Grizzly. As I look back, many of the things I'm passionate about - craft beer, cycling, music, reading - are all things that Rick was passionate about as well. To say that Rick was influential in my life is an understatement.

Life moved on - I joined the Navy, then went to college (Go Bobcats!) Rick got on with his life as well - and seemed to ride less and less as he did all the things you do to start a new family - house purchase, raising kids, etc, etc. But cycling was never too far from his mind. As time went on, Rick and his family were a constant presence in my life. Many trips to Missoula, many concerts and other outings.

During my college years (1992 - 1997) there were some incidents that were, in hindsight, clear warning signs for MS. Rick would get awfully shaky sometimes after having a few beers, which I chalked up to age. Now that I'm the same age as he was at the time, I realize how ridiculous that was. Also, he would complain sometimes about his leg going numb while he was at work. For hours at a time. You'd think that would warrant a trip to the doctor, but Rick never went (to my knowledge) - and I don't think any of us were armed with the information we have now about MS, so I don't think anyone was pushing him to get it checked out.

After college, and a quick two-year stint in the Bay area, I moved to Boise. The proximity to Missoula (compared to San Francisco) was nice, and Rick and I got back to more regular visits, often around Montana State / Montana football games. One of those years (2002, I believe) Rick came down to Boise to spend the football game weekend with me. He seemed a bit off that weekend, and was particularly sick on Sunday. Then, after flying home Sunday night, he woke up Monday and found that he had completely lost vision in his right eye.

Things progressed swiftly at that point. The MS diagnosis came quickly - steroids cleared up his vision, and the fight began. It wasn't much of a fight, though. By the time he was diagnosed, the MS was pretty advanced. There were no significant remissions, and MS took him down steadily limb-by-limb. He went from a cane to a walker to a wheelchair within two years. Soon, it was hard to understand him, as MS took out his facial muscles. The eyesight would come and go.

There would be some brief respites, after steroid therapy, but they didn't last long. Rick would often schedule those right before a visit from my parents so they wouldn't see him at his worst. I think that the pain the disease caused his children and my parents affected him more than the disease did.

I should also note that we lost Robert to a tragic car accident in 1998 when he was only 37. My parents had already buried a child, and they were facing losing another. I will never be able to fully comprehend the grief this caused them. Rick understood this, though, and I'm sure it tore him up.

We lost Rick in August 2011. He was in a nursing home at that point, and had lost the ability to swallow on his own. He was getting serious infections, could no longer feed himself, and I think a breathing tube was on the horizon. Enough about that...

Maybe the worst effect that MS had on Rick was the depression that he fought. He spent some time on anti-depressants, but I don't think he liked them. Rick did not always take his degrading condition gracefully. The vast majority of the time, Rick was the same sweet, generous man he always was - but at times he could be very difficult to be around. I think he yelled a lifetime of profanities in those years. MS did that. MS took him from us, I think, long before he physically passed away.

I stayed in Missoula the week after Rick passed away, doing what I could to help Rick's kids with all the required arrangements. It helped to have tasks to focus on. At some point in the week, I noticed the Schwinn Super Sport hanging up in my nephew Jeramy's garage, and it appeared to be in great shape. It had been well cared-for all those years. The bike was just a bit too big for either of my nephews, so Jeramy asked me if I wanted it. I sure did.

Soon, I was riding that bike all over Boise, and having a blast on it. I hadn't ridden a road bike in years. For a long time, I was too fat to ride a road bike...but had recently cleaned up my act, was fit and raring to go. I don't remember where or how I first heard about the MS 150 bike ride, but the minute I heard about it - I knew that I wanted to ride it on Rick's bike. And I did. It was one of the most rewarding things I've ever done and I would give anything if Rick had been around to share the experience with.

Rick's Bike at Payette Lake, near downtown McCall, ID

Unfortunately, the old Le Tour and the Bianchi have not survived the years - but if I ever part with that '87 Super Sport it will have to be pried from my cold, dead legs. Thank you so much, Jeramy, for entrusting me with it.

I think often of Rick's and my last road trip together. I was fortunate to be able to take Rick to Glacier National Park in 2007. It was a great trip, but challenging, as I was an inexperienced caregiver. Rick was very patient with me that week. He was in his element in the Lake McDonald lodge - striking up conversations with everyone he could, joking and laughing as much as possible. In particular, I remember the night we ate dinner in the lodge. Rick had a very difficult time holding eating utensils at the time, and we were still trying to figure out how to make that easier for him. As a result, half of what was on his plate usually ended up on the floor. When our very eager, college-age waiter came over to serve us, Rick started laughing uncontrollably, and when he finally composed himself, said "This poor kid has no idea what he's in for tonight!"

Rick on the Trail of the Cedars, Glacier National Park, 2007
If Rick could see me struggle to write this blog post, he'd probably have a good laugh as well - and call me a "buffoon" - one of his favorite words. I wish I were as eloquent a writer as Rick, but this will have to do. And I'll just close by saying I think about Rick every day and would give up anything I own to have one more conversation with him. I know that won't happen. But if, through sharing Rick's story, I can help make life a little better for someone else affected by MS - I know Rick would be very pleased. And that is why I ride Bike MS.

This concludes the 142nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 13, 2013. 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, June 11, 2013.

Thursday, May 16, 2013

Carnival of MS Bloggers #141

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

Life with My So-Called Chronic Disease
In my kingdom of the sick, the emperor has no clothes
by Jennifer Glen

With one obvious exception, the word chronic never refers to anything good. Someone is a chronic liar or a country is in a chronic state of civil war. Or someone has a chronic disease. Like me.

Four months into my multiple sclerosis diagnosis—and four years since the first symptoms that caused a neurologist to warn me that such a diagnosis might be coming—it still feels weird to acknowledge the fact that I am sick. I don’t feel sick. Unlike those diagnosed with other chronic diseases, like, say, rheumatoid arthritis or Chrohn’s disease, I endure no pain from my illness. My symptoms—some mild slurring, followed by numbness on half my face—have only impacted four weeks of the last four years and, while annoying, were neither debilitating nor readily detectable to anybody I was interacting with.

In fact, the entire infrastructure of the disease has been far more annoying and debilitating than any of the symptoms. Navigating the various doctors’ offices, insurance companies, drug companies, and pharmacies that comprise the US healthcare system experience for someone like me—that is, someone who is lucky enough to have good health insurance—is not an activity fit for someone who has just been diagnosed with a disease. You are flighty and distracted and can’t remember to ask your doctor important questions, but that is the exact moment when the execution of your own healthcare requires you to have the steely nerves of a crane operator combined with the determination of a blood hound. Even when you’ve charted a course through that labyrinth, any sense of victory is diminished by a nagging concern over what it would be like without your prized health insurance and the eight months still to go until the pre-existing conditions clause of Obama Care kicks in. (To put a number on that anxiety, consider that the latest MS treatment, a pill that has more or less been around for twenty years to treat psoriasis, was recently released at a wholesale price of $54,900 per patient per year.)

Faced with this you naturally wonder, as do people who should know better, like your husband and your shrink, if you should even bother taking medication for your mostly invisible disease. Surely you are about to wake from the absurdist dream you’ve been having where you, a needle phobic, are now supposed to shoot up a medicine every Thursday that makes you feel like you have the flu for sixteen hours in order to treat a disease that is currently presenting zero symptoms. But then the second opinion neurologist, the one who is a foremost expert in the field, tells you in her calm Texas drawl that, yes, you have to take the preventative medicine; that first neurologist you saw wasn’t just making that up. Your disease may feel like a fraud now, but MS has the astonishing potential to morph from an annoyance to, say, paralysis, an outcome you don’t want to dice with much.

In her recent book, In the Kingdom of the Sick, Laurie Edwards writes about her experience growing up of frequent doctor appointments to treat what was eventually diagnosed as a chronic and very rare lung disease. She notes that she never perceived her experience then in terms of a chronic illness. Rather she experienced each incident separately, in a reactionary mode, and only as an adult did she make the emotional adjustment to acknowledge the long-term nature of what she was dealing with. This, she says, “is the most daunting aspect of any chronic illness, whether you are the patient grappling with a diagnosis or a healthy person who hopes it never happens to you: It isn’t going to go away.”

And she is right, especially the part about the healthy people. This explains why most my friends never ask me much about my MS. I am a living, breathing incarnation of what they hope never happens to them, and they’d understandably rather not talk about it. Frankly, it is a preferable state of affairs to those who do ask me about it because, invariably, these types want to know if I am going to change my lifestyle. This, of course, is just a polite way of asking me if I am going to drink less wine. I am not, both because I like wine and because drinking wine does not cause MS (I asked my neurologist). But as I once was, these people are desperate to believe that there is something I (read: they) can do to control bad things, like MS, from happening. Deep down there is some little part of them desperate to believe that there must be a reason (read: something bad I did) I got MS.

I am neither surprised nor angered by this reaction, but that is probably because MS has not yet, and hopefully never will, made me very sick. Just the other day I heard a reasonably intelligent person imply that the rise in women’s cancers is due to women letting themselves get burnt out. On behalf of the three women in my life who have recently lost both their breasts to cancer, I wanted to ring this woman’s neck, or at least buy her a copy of Susan Sontag’s Illness as Metaphor. Thirty-five years have passed since Sontag pointed out the lunacy of using romanticized language to create an acceptable way to blame the victims of disease and, yet, it is still fairly commonplace to hear people imply stress or bottled emotions or some other similarly nebulous thing is to blame.

I, however, am not blameless when it comes to hiding behind language to deal with my disease. In my book, Americashire: A Field Guide to a Marriage, I write about renaming the permanent lesions on my brain—the main physiological manifestation of my MS:
In the absence of any answers from science I turned to the transformative power of language. Lesions were for lepers or people with venereal disease. They simply would not do. Therefore, I decided I had les ions, pronounced lā-ē-uh, with a trademark French grunt on the last syllable. It still sounded vaguely scientific, yet at the same time foreign and alluring. And best of all, it made me feel, just for a moment, like I was in control.

Despite my wariness over the use of flowery language when it comes to illness, I am giving myself a pass on this one. I liken it to the same rule of the universe that makes it OK for me, but nobody else—especially my husband—to make fun of my immediate family. After all, MS is my disease, and I can call it anything I want.

This concludes the 141st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 30, 2013. 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, May 28, 2013.

Thursday, May 2, 2013

Carnival of MS Bloggers #140

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

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

This concludes the 140th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 16, 2013. 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, May 14, 2013.

Thursday, April 18, 2013

Carnial of MS Bloggers #139

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

from Sunshine at Needle Fatigue

"I look up, I look down..."

“I look up, I look down…”

There are many MS symptoms that will not respond well to medical treatment; in short, you’re pretty much stuck with them.  Dizziness — my #1 symptom — is one of them, and so is paresthesia (numbness in the hands, in my case) and other forms of dysthesia (distortion of the senses).  One of the oddest things I’ve dealt with is the latter, in particular a distortion of proprioception, which is basically how you know where you are in a given space.  Ask my husband how many times I bang into doorways, with my glasses on.  And this is also why I am almost never without my walking stick for any great distances; if the dizziness won’t get me, the Weirdness (as I refer to that sense that I’ve suddenly stepped into another, vaguely syrupy dimension) will.  But I will say something positive here: although most forms of dysthesia may be out of your control, if you have proprioceptive issues, it is totally worth looking into balance therapy.

Sometime after that summer 2011 relapse, the neurologist suggested I give balance therapy a try.  Why?  Because it wouldn’t hurt.  (It was a good thing I had good insurance.)  But I was surprised that I really did derive some good effects from it, and I’ve just reminded myself of this lately.  The exercises the therapist gave me, I will now share for free.

The first exercise is pretty odd.  But it works.  And it may also improve your ability to read in a moving vehicle!  Take a business card or anything of that size with at least three sizes of font on it.  Tape it to a blank wall.  Now, keeping your eyes focused on the largest font, move your head from side to side, reading that text, for 2 minutes.  (Your head moves but your eyes do not).  No more than 2 minutes, but no less.  Do this three times a day if you can, for a few days, then graduate to the smaller font.  After a week, tape that business card to a wall with some kind of pattern (I used a map, but wallpaper should work).  Do the same thing.  Keep this up for a couple weeks before you start the next exercise.

Exercise No. 2 seems a little more normal.  But not much.  Stand in a corner so that you are protected from a fall on both right and left sides.  (You can put your arms out to the sides to catch you just in case.  If you have someone living with you I would enlist their help too, at first…)  Put your right foot in front of your left one (heel to toe).  Close your eyes.  Stand there for 2 minutes.  You will feel like you’re definitely going to fall.  But the important thing about this exercise is it’s a test of will power.  Say to yourself “I am standing perfectly still; I am not moving and I am not going to fall over.”  You’ll feel your calf muscles go nuts with the strain of keeping you upright, and in the beginning you will catch yourself falling.  Your brain is convinced that you’re teetering on some precipice somewhere.  But you know better.  You say “No, brain, I’m perfectly graceful standing here looking like a Degas ballerina.  I refuse to fall.”  Or something like that.  (If you are a man, please forgive me; I have no idea what the masculine analog of a Degas ballerina might be.)  Now do the same thing with the left foot in front of the right.  You will fail miserably in the beginning.  But with time, you will have a smug smile on your face when the 2 minute timer goes off and you haven’t wavered in the slightest.

Exercise No. 3 always reminds me of Alfred Hitchcock’s Vertigo.  In your corner, keep your eyes open.  Cross your feet just as you did in the last exercise, but keep your eyes open.  Now look up.  Look down.  Look up.  Look down.  Now look to the right side.  Look to the left.  Look right.  Look left.  Follow with your eyes as you go.  Do this for 2 minutes.  And yes, according to my therapist, 2 minutes has been scientifically verified as both the minimum and the maximum length of time to do all of these exercises.

I hope these are helpful for my fellow meanderers and weavers.  If nothing else, I just saved you a few hundred bucks and several hours at the physical therapist’s!


This concludes the 139th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 2, 2013. 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 30, 2013.

Thursday, April 4, 2013

Carnival of MS Bloggers #138

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


Hi All.  As you may know, I'm a director on the Board of MS SoftServe (see video).  The goal of MS SoftServe which is to help people living with Multiple Sclerosis to learn on their own terms is very important to me.  We are very close to making this a reality.  I ask you to make a donation of any size to bring this site to the Internet.  Our goal to get the site up and running is $64k. Please join me in support at any level!" (link to donate)




by Laura of Shine the Divine


soft silver secret
swinging just within arms reach
what have you to teach?
Pussy willow wild and free the halo of your mane caught me by surprise, what joy! Your secret softness is safe with me; most folks drive this road so fast. I watch as cars speed by this passage between there and there forgetting the footpath here where immeasurable treasures await discovery, the silky silver sort, hidden between all the other twisted trees. Before I lost the gift of stride, then learned to walk again, I too passed you by completely unaware for years. To be honest, I’ve always been a seeker, yet it was the losing that downshifted me into the slow lane. And I choose to meander whenever I can, with intentional steps even on days I could move more swiftly, grateful for this life and the mysterious paths that guide me to everyday miracles like this pussy willow tree, unique among its companions, growing wild and free.

Or an eagle, yes a majestic eagle delighting (I imagine) in lunch, perhaps for his family waiting in a nest in an exquisitely tall tree, talons gripping “someone” on the river-side of the highway. We saw him early yesterday afternoon on our drive to my neurology appointment. This seemed a good talisman and indeed it was.

It has been a while since I’ve written about living with MS. The MRI I had last Friday evening shows no new changes in my brain. It is exactly the same as it was a year ago. A YEAR! This is the longest span between exacerbations since diagnosis in 2009. My doctor did point out some tiny black holes; yes my brain like the moon is made of Swiss cheese. Well perhaps a better metaphor would be the vast universe. Did you know scientists actually know more about the universe, even the theoretical multiverse, than they do about the human brain? She said the spaces are not new, however she’d never showed them to me before. *Aha, perfect segue. I just mentioned what I’m blogging about to my husband who informed me she had shown these to me before. I don’t remember, NOT at all.

So while there are no visible changes in my brain, my family and I are clearly noticing some cognitive shifts. I’m imagining the black holes swallowing the words that go missing, as well as events everyone swears I was in attendance for although I have no recollection of “said happenings” happening.

It is very strange 1. To be able to visualize an object or person, to be able to describe it or them perfectly and have absolutely no idea what it is called or what their name is. Sometimes the word or name will come to me later; other times if no one else understands what I'm talking about and can tell me, it is just gone. I mean, yeah, I know everyone has this experience from time to time, especially as we grow older, but this happens to me as though I am a LOT older than my body chronologically is. It’s weird. AND 2. Weirder still is to be told repeatedly, “But MOM you were there! What do you mean you don’t remember?”  Or, “Yeah hon, she showed them to you,” kindly softened by, “but you were probably too sick at that appointment to remember.” Swallowed whole, into those tiny black holes apparently. 

I have some cognitive testing scheduled next month and that’s good. Maybe there will be some helpful hints and coping strategies, although so far charades works for devoured words most of the time, and the edited/deleted events of my life calendar will just have to be an annoyance others live with. This wouldn’t particularly bother me since in my mind these events never happened anyway, but it is uncomfortable when my kids use accusatory or at the very least exasperated tones of voice when I’ve forgotten something that it appears had been important to them. ~Sigh. ~ Then again they are teenagers, so if I didn’t annoy, exasperate and inflame accusatory tones of voice through forgetfulness, there would be plenty (ha, ARE) plenty of other opportunities to stoke the flames. The word thing is frustrating. My loving husband’s example teaches me however that these irritations are chances to practice compassion toward my self, this amazing body with a Swiss cheese brain doing its very best in every moment. And truly, how awesome and miraculous is it that for the most part this broken body functions quite harmoniously?  That any human body mostly functions harmoniously? 

I am in remission, have been for a full year. I can walk and talk nearly every day, though by evening things start to get MS’y. I’m not complaining, just explaining the ever-changing landscape of one person’s experience with MS.

And this landscape includes awe and joy and gratitude, black holes and missing words and speech that gets mangled by dysarthria and legs that sometimes just won’t lift on their own and a majestic eagle touching down to hunt along a highway and memories gone missing and pussy willows emerging wild on a country road meandered down slowly on an afternoon when it was all systems go in this body with a Swiss cheese brain doing the very best it can moment by moment.


I met an older gentleman at the dentist office today, I’m guessing close to ninety. He was struggling to sit down. Looked me in the eyes and started to share his story even as I slipped my arms into my coat, the bum knees, his survival of kidney cancer. I said I was sorry for his troubles, told him I could understand the difficulty with a body giving out, that I live with multiple sclerosis. He asked a lot of questions, seemed surprised that I could drive, and was especially curious about treatments these days. Then he told me about his wife whose life was lost to breast cancer and his daughter's too to ovarian cancer. And I felt such deep compassion, could feel his need to connect. I didn't have to rush out the door so I stood there for quite some time listening. No one escapes loss. The losing teaches us to slow down, the losing teaches to pay attention, the losing teaches us compassion. And when you live past ripeness, like this man and many lines cross your face, you meander your way along your path. 

I can't say if he sought out a kind stranger to pause with full attention, by the way he settled heavily into the chair with a tired, audible sigh, or if it was me, the open seeker catching a glimpse of the silver halo shining from his still dense mane, remembering (yes some things I do remember) today's Omer teaching from Rav Yael: "...Moshia yishrei lev. The Mystery opens the path of the heart." ~Psalm 7:11 on this the 7th day of counting the Omer. Yesod she b'Chesed, the Indwelling Presence of Love... "Notice acts of kindness and generosity that are bestowed upon you. Notice the moments you respond to yourself and others with love." Either way, we did.



This concludes the 138th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 18, 2013. 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 16, 2013.

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