FOOTDROP: Another Year, Another New Device?

ANOTHER New Device?

It's steel-grey outside, with lightening forcing me to run on battery and thunder interrupting my viewing of the famous Minnesota eagle: http://www.mnbound.com/live-eagle-cam/ 

and loon cams:  http://www.mnbound.com/live-loon-cam/

while buckets of rain are being dumped all around me.

I'm laughing away out here in my sun porch office where I'm supposed to be working but am instead cleaning up my email and reading the oh-so-entertaining posts of a few of my on-line buddies.

I've been absent.  Yes, I see that. It's not because I don't love you, It's not because I had writer's block. It isn't due to a lack of news. I was just taking a break from having MS.  You know what I mean. I was being a regular person--living my life, getting up in the morning and working and avoiding exercise and eating whatever I wanted. The human stuff. The longing to be just the-gal-around-the-corner and not that-woman-with-MS.  I just get sick of it, don't you?

So the last thing I wanted to think about was MS, assistive devices or anything of that ilk. As you read about the state of my decline, you are going to wonder how I could possibly pretend to not have MS, but we are, after all, exceedingly talented folks, are we not?

However, I do have news. I realized a couple of months ago that my BionessL300 unit was no longer working very well for me.  I was forced to hang on more and more to walls, husbands, whatever was handy, in order to stay upright and mobile. I could see the alarm in the eyes of passers-by as I wobbled and grabbed my way into places with my cane.

TIME FLIES!

Good grief!  I had no idea it had been so long since I've posted.  The only thing I have written during this time is a bit about my Free Cell addiction, which I may not ever make public. (But stand by, I have no shame if I can make people laugh.)

Just to have something to post, I found this fun way to map your travels on another blog.

http://douweosinga.com/projects/visited?region=usa

Here's my USA map: (not bad but I'd better get hustling.)

 

and here is my world map, such as it is. (Oh my, I'm getting credit for parts of Canada and the US I don't deserve.)

 

And Canada:  BC - Honeymooned on Victoria Island and visited Victoria on the mainland several times - beautiful!  

Manitoba--right above North Dakota, where I grew up. I won $3 on a horse at the racetrack thanks to advice from the border guard. Had to split it with my little sister as we had each put up 50 cents.

Saskatchewan--absolutely huge--made the North Dakota wheat fields look puny, no small feat; also visited the fabulous Riding Mountain National Park where I bought a really good First Nation soapstone carving which survived my kids growing up with only a few dents and one arm having to be glued back on. I remember that $89 was a lot of money to us in the 60's. I can just hear the folks at Antiques Roadshow clucking over the damage but the kids were worth it.

Ontario - crossing both from Detroit and at Niagara Falls. Brief, but they count, don't they? Plus, I spent a weekend in Toronto.

What a beautiful country and where I have imagined I'd flee if it gets too hot in Minnesota!

 
When we fly to warmer places from Minnesota for a bit in the winter, there are always lots of Canadians on the plane. I should ask them how they would feel about a bunch of US citizens finding refuge in their country if global warming gets any worse.

OK, I'll try to do better. We are in Tucson at the moment, and Minnesota has finally obliged us by having a little bit of snow and some blustery weather during our absence. 

I have nothing to report on the MS front, other than it's just lovely to be able to put my feet down on dry surfaces instead of ice and snow.  I am not knotting up my shoulders by holding my cane handle in a death grip. A little luxury in my rather teetery world.

THE HOLIDAYS APPROACHETH

Here we are with the entire family - kids and grandkids - in a beautiful warm spot. The girls are living in their swimsuits in the pool and Bill and I are in charge while their parents are off doing last minute shopping.                                                                                                                 
Yesterday we wore ourselves out at the grocery store, getting food for a week for all these people, but it was worth it.  I of course, had the grocery store scooter to drive around, but Bill was on foot and may I just say I  do get a teeny bit gleeful when I wear him out on an excursion!                                                                                                                                  
Right now all 3 of the granddaughters are back in the steam shower washing pool chlorine out of their swimsuits and hair and giggling like maniacs. Grandpa and I are sitting in front of our daughter's ipad, poking tentatively at it and envisioning what it might do for us, should we decide to join the 21st century.                                                                                                      
I love having everyone together. I had a girl and a boy, 4 years apart in school and you know how little brothers love to bug their big sisters.  It is an understatement to say they were not close growing up and that makes their enjoyment of hanging out together at Christmas with their spouses a great sight for Mom and Dad to see.                                                                                                                                                        
Two of the granddaughters are almost teenagers now so we are entertained with their fashion discussions.  We haven't been allowed in on any of the "boy" talk yet but I'm hoping they'll forget we are here soon so we can find out what is really going on.                                                                                                                                                                   
Family means so much to me. The fact that I can still manage these get-togethers is a miracle, given my true disability level (which I ignore 99% of the time). Everyone is pitching in here, and it makes it all possible.                                                                                                                                  
Happy Holidays, everyone!

THE BIG SCREEN, THE BIG M

Warning...spiral thinking ahead....

  



Right up front I have to tell you that I am a fourth generation movie nut.  My great-grandmother was taking my mother to movies in the 30's and Dad's first date involved two dimes, a girl "friend" who was handed one of them, and a trip to the movie theater with each of them walking up the opposite side of the street, paying and entering alone, then meeting up inside...at least that's how Dad liked to tell it.

We were all indoctrinated at a pretty young age.  I remember peeking over the front seat at the drive-in where I was supposed to be sleeping with my sister, both in our pajamas. It was "buck night," so my parents didn't have to hire a sitter.  I don't suppose they ever went to anything really risque with us in the back, but I do remember Mom rising up in the front seat to block out a scene she didn't think we should take in.  She knew exactly how to loom up there so we couldn't see anything.

But I digress.  What I really meant to talk about was old men, old women, and movies. Tonight we saw Eastwood's J Edgar, and may I just say, "Oh, my!"  I grew up with the guy.  No kidding, his name was already a household word when I was born and by the time Dr King was assassinated it seemed to me that everyone I knew had lost all respect for him.  Hoover, not Eastwood.  Eastwood is another matter entirely. I'd say that in Eastwood's case, everyone I knew started out with no respect for him and changed their minds as he aged.

Around 1972 he started directing his own movies and eventually did a series of odd modern westerns, some with orangutans, and he always played the same silent fellow.  Who would ever have thought that we'd get films like Million Dollar Baby, Invictus, Gran Torino and now J Edgar out of a man we thought of as trailing around to cheap wild west shows where he threw knives at pale girlfriends spinning on circular boards. 

Yeah, yeah, I know I haven't mentioned "Dirty Harry" and that ilk but hey, it's my blog and I never did care if he said "Make my day" or not, though I admit I quoted it for the next decade.

So here we are and I'm in the odd position of thinking that whatever he makes, I need to see. And this gets me to my point.  Eastwood is one of those archetype old guys who become efficient in their directing and acting styles.  I've been around long enough to see more than one aging actor prove that less is way, way more:  Spencer Tracy, Ossie Davis, and on the female side, Ethel Waters, Vanessa Redgrave and Katharine Hepburn, (that's Ethel above on the left in Cabin In The Sky.)

They get, well -- still. They stop displaying everything on their faces.  They might only twitch but that flutter says more than all the arm waving, tear-shedding and eloquent speeches of their younger days.  Eastwood started out sparse and he's positively static now.  He lets DiCaprio huff around the screen as Hoover but the stillness is in the shots: holding on an image; keeping the camera steady on, forcing us to look so we don't miss that one tiny revealing motion.

There are women movie directors coming up the ranks now too.  I can hardly wait to see what an old woman will do.  Now this old woman has not gotten still yet, though she aspires to.  All my life I've been a motion machine--always going, always with some responsibility or other to keep me busy.  One thing MS will do for you is slow you down.  I have actually learned to leave early and allow extra time for getting parked and into a meeting.  Not that I know what to do with myself when I am early. Other than feel smug.  Which I do.

OK, so what I've been thinking lately is, (and this is where that spiral thinking shows up,) now that I'm arriving in plenty of time and making no more grand entrances, perhaps I could be just be a bit more still myself.  Maybe I can finally be one of those people who rarely talk, but when they do, everyone listens.  Maybe I could consider what I'm going to say carefully before I speak.  Maybe I could listen for a half hour or an hour to what others think before I offer any idea at all.  Maybe I.....  maybe I...... maybe.....................oh, heck, who am I kidding anyway? 

MS can slow me down but it can't make me a better person.

I guess I'm still in charge of that.

UPDATES ON FOOTDROP DEVICE & CCSVI TREATMENT

This post is about Footdrop and the latest thing I've tried to compensate for that oh-so-charming aspect of MS. At the very end there's a brief update on my one year anniversary of venoplasty for CCSVI.

After using the bungee cord device for almost a year, I got a Walk-Aide stim device. I've used it now since June and have gotten used to it.  I think it works the best of the 3 things I have tried (see previous posts on this subject by clicking on Foot-Drop in the right frame).

I do have to make sure I put a drop of water on the gel pads and spread it around before putting on the cuff every day; and it takes a certain amount of time for the pads to adhere and really allow it to "kick in" - and that gets longer as the gel pads get older. I had been using a set for a month but I may cut that back to three weeks or even two now that I realize the problems that older gel pads can cause.

I also find that the strength of the stim gets stronger as the day wears on.  For the first hour, I am tuning it up as high as it will go; by late afternoon, I am tuning it down as far as it will go.  

Does it hurt?  Nope. It does not.  When it's tuned up too strong I do feel it and hurry to tune it down, but it is not like an electrical shock.  It's more of a strong vibration or stimulation.

But now the most important thing:  do I walk better? Well, I don't have to swing my leg out from the hip so I look more normal and it's so much easier on my back to do it this way.  But....my balance is such that I really do not walk faster. I'm still very unbalanced. I definitely need a cane outside the house, though at home I have plenty of things to touch or hold on to so I don't use any aides inside.  I'm far worse with my eyes closed or in the dark so it's obvious to me that I have learned to orient myself with my eyes.

I think a major factor is that it wasn't just foot-drop that was getting in my way; it was also the fact that I struggle to lift my right leg, bending the knee as it comes up.  The muscles and/or nerves are only partially there.  I find that I lift with the small of my back if I'm not careful.  Yep--ouch!

So getting rid of the footdrop with the Walk-Aide does help--and it helps a lot--but it is only half the problem.  Still, I charge it up every night and strap it on every day. It keeps my foot from turning under and my toes from catching on the carpet and my back is in so much better shape now than 6 months ago.

You may well ask:  Have you really done the exercises the various PT's have assigned to you over the years?  Nah! Well....some.  Are you proud of that?  Are you kidding?  Do you think you would be stronger if you did?  Mmmhumm....

Everyone who has stuck to their physical therapy sings its praises.  I get it.  And I still have hopes for my redemption. And that's all I want to say about that right now. Really. And quit rolling your eyes!

Meanwhile, the CCSVI treatment seems to be holding. I'm just 2 weeks away from it being a year since I had the venoplasty on my lower left external jugular and my azygous. I still seem to be stable, with significant improvements in my cognitive ability, my neck and shoulder pain and facial and scalp numbness.  These past few months my toes don't seem to curl any more.

Feel free to ask any questions if you are considering this or any of the devices I've tried.

I'm off to a movie -- speaking of which, my next post will definitely be on that subject.

Hope you've all had a good weekend. We had a bunch of fluffy snow last night in Minnesota and I barely got the car up the driveway!

LITTLE, NOT BIG

Tiny things have come to make life worthwhile for me. I remember napping on a hillside during a break at a retreat. When I woke up, my cheek was imprinted by the grass and an acorn and overhead were the best kind of clouds hanging in a Montana-blue sky. All quite wonderful enough, yet it was the chipmunk four feet away that capped it for me. He froze when he saw my eyes open, but after just a few seconds, went on stuffing seeds into his mouth. Great creature I, had the wonder of a peek into his universe.

Once my husband and I found ourselves at an entirely different movie from what we had thought was playing. It was at an aging cinema house and a film history buff had pasted together dance scene clips from dozens of old films.  The dance community obviously knew about it because we were surrounded by hoofers of all ages in the long line outside the theater.  They were tapping on the sidewalk as the queue moved forward and they tapped sitting in their theater seats too.  Some of them got out in the aisle and danced with a scene as it went by. There was joy, joy everywhere in that theater that night and the pure serendipity of the encounter makes me recall it as one of the highlights of my life, though I'm no dancer and never have been.

Serendipity and sun have a lot to do with happy times for me. I can drive down the street on an ordinary day and see the the fall leaves illuminated, or look out my window and watch the sun tease a bunch of weeds in the wild area under the bird feeder and joy will arrive: unannounced, unanticipated, un-asked for and in my younger days, I would have added, undeserved.

But you won't hear me say that any more. The ability to feel happiness is both a gift and a learned skill. I myself was born happy and I lost it and had to find my way back. I've spent a lot of decades on that journey and nothing--not age, not misfortune, not MS--will ever again make me think I don't deserve joy or keep me from finding it.  I swear to you, all I had to do was look for little pleasures instead of great, dramatic events and it came back to me.

I was addicted to the Big much of my adult life: big dreams, big gatherings, big drama in relationships.  Everyday life was just boring, it was something to get through until the next xxxxxx came along. I lived for excitement and if a person doesn't care if it is positive or negative, just so it's significant ... well, as you can imagine, there is plenty of that to go around.

Of course I crashed eventually and then there was no Big, not even the hope of Big. There was only slogging through grey days and TV nights. The chipmunk was the beginning of the change. It was the first time in a long time that I had remembered Little. I was stopped for a weekend, there was no running, not even trudging, only being at that retreat and time for a nap on a hill.

I don't think I had to deserve it; I don't even think I had to work for it; I just think I had to want it and be willing to be open minded about what it might look like. I've paid my dues in the unhappy department so it's irrelevant to me that my happy days also encompass a chronic illness. Just lucky for me that life contains a million little wonders; they never run out.

9 Month Check-in - CCSVI

I had a venoplasty for CCSVI on December 15th of last year and though there were some minor improvements in the first 48 hours, by the time a month had gone by, I had decided that I was one of those 30 or 35 % of patients who get little or no benefit from the procedure.                                                                                 And yet, and yet....a month or so ago it suddenly occurred to me that, unlike every six-month period of my life since 2006, this time I was not looking back and realizing that I was worse physically than I had been a half-year earlier.        

I've never had an MS attack or relapse.  I've never remitted either; since I was diagnosed in 2003, the symptoms have just slowly, steadily crept up on me; it takes a stretch of time to notice something new, because it's all so gradual, so subtle.                                                                                                                                                    But this time, I am not worse; in fact, I'm definitely stronger. I could attribute this to getting more exercise due to my Ness L300 stim device or my own efforts but I'm still largely sedentary, working at a desk most of the day, so it's doubtful that would be enough to do it.                                           
                                                                                                        
It isn't so much that I've improved...it's more that I'm holding my own. Only once since diagnosis has this happened, and that was during the first couple of years that I was taking LDN (low dose naltrexone) and following the Swank Diet for MS pretty carefully. But for the last five to six years I've had to deal with a twice-a-year, stomach-jolting realization that I'm going downhill.                                                                                                                     
                   
So let me add it up:       
Immediately Better & Stayed Better:
Neck and shoulders - hardly painful at all any more - got a good start after venoplasty and finished that off with some acupuncture this past summer. A big deal to me as I really rely on my arms to stand up and walk and the pain before the CCSVI procedure was pretty terrible, despite loads of physical therapy.
Brain - has definitely been working much better since December, 2010. Right from the start I could read and understand more complicated medical reports and I notice I didn't just give up when it got a little tough to follow something; I stuck with it and ultimately grasped it. That is so much more like my old self.

Stayed the Same:
Energy/Fatigue - I get tired but after all, I'm no kid.  I can still keep going all day long. This hasn't changed much since the dramatic improvement when I started LDN in 2004.
Balance - I'm still as tippy as ever and it is still dangerous to walk in the dark because I rely a lot on visual orientation.
Numbness - I had much less 36-72 hours after venoplasty but it came back and stuck around.  No worse, though, and that's one thing that has always gotten steadily worse in the past.
Foot Drop -  Really, this is the same except that I am experiencing a typical response to the Bioness L300 unit I started using in June--that is, there is a residual memory and sometimes I can pick up the front of my foot and toes even when I'm not wearing the unit. This tends to go away as soon as I notice it, though. Yup, I get it--don't think too much!

Slightly better:
Walking - I take on longer distances now, (again note that I started Bioness L300 unit in June).
Strength - I felt stronger by the end of February but more recent improvements may be due to the L300.
Speed - I pulled these numbers off my personal charts at CCSVI-Tracking.  During the first 4 months after my venoplasty, it took 21-24 seconds to stand, walk 3 meters around something, come back and sit down.  In the 5th - 7th months, that suddenly dropped to 16 or 17 seconds. at 8 months, I was down to 14 seconds. Not dramatic, but heartening for me and that first jump at 5 months couldn't have been related to the L300 because I didn't start that until June 7th and I really hadn't been doing anything else that might have made a difference either.                                                                                                                                              
So as you can see, it all adds up to not much improvement but definitely not backsliding. I'm sure I don't need to tell any of you that If I thought the procedure had just halted progression, I'd be extremely happy!

Revolution? Patients in Charge…

Revolution? Patients in Charge…

I was talking with a friend with autoimmune liver disease the other day, agreeing that we have to be our own diagnosticians and researchers and keep up with the information in our field, We both keep connected to others with our own disease and think it is mandatory to just be in charge in general.                                                                                                                                 

The subject of the resistance of some doctors when it comes to this concept came up and I mentioned that "of course, now the patients are in revolt and that's all about to end."  To my surprise, she really wasn't aware of what has been happening in the MS world in this regard.                                                                                                                                                                

When the CCSVI information came to light, (that's Chronic Cerebrospinal Venous Insufficiency)  all kinds of patients looking for access to screening and treatment started posting and trading information about which docs were doing what and where. The Canadians have lead the way on this and I admire and just plain love the energy they have spread all over the globe as a side effect from the battles they must wage for access to treatment.                                                                                                                                                                      

How many CCSVI blogs are there anyway?  I've picked my few favorites because I can't keep up with them all. Have a question?  I can put it out there in any number of places and have an answer in a few hours, usually from a patient or caregiver and sometimes from a physician.  


We often have the new information before the doctors do. It is posted on various websites and blogs within a few hours of its becoming known. Many who write blogs specifically to keep the community up on the events are quite aware of the symposiums and papers that are about to arrive well before the due date, and are waiting to "grab" the information and get it posted.                                                                                                                   
I sometimes watch long videos uploaded by a blogger who has MP3d an entire two day symposium and spent hours editing and uploading it for the rest of us. I usually get some new information and I always "get" the camaraderie between the pioneer patients and the pioneer physicians.  It is clear that, pesky though we may be, they care about us and consider us partners in the effort to nail down what will be effective treatment for MS.                                                                                                                                                       
It isn't just CCSVI; I also read about nutrition from Swank to Paleo, about new Lyme's Disease tests and treatments, about exercise, about drugs in trial and new releases. Sure, you run into a few kooks but I don't act on anything immediately anyway. I often read and follow for months, even a year, before I decide to try something new.                                                                                                                                                                                                                                                                                                                                                                   

Those of us with so-called autoimmune illnesses are far more apt to read, ask questions and challenge the conventional wisdom than those with better-understood maladies. We have to; otherwise it feels as if we are swinging out there on a vine by ourselves.                                                                                                                                                                                                   Early on I walked out of my neurologist's office forever on the day she told me that diet had absolutely nothing to do with MS.  She had never heard of Dr. Swank or any of his successors. She also assured me that I was Norwegian and that was a major risk factor for MS.  When I protested that I knew every ancestor back to 1650 and that none at all were Nordic, she told me I just didn't know it, but I had a Norwegian relative back there somewhere. 

You can imagine how entertaining it was at the time, though of course it was not a good strategy to take with this particular patient. I have continued to draw my own conclusions ever since and it was the best thing she could have done to prepare me for MS.                                                                                                                                                                   
I like feeling good about what I've discovered and decided. I like being connected to an infinite amount of information, however mind-boggling it may be on some days.  Who would have thought the insanely absurd would have such a profoundly liberating effect, but then, laughter has always been highly rated with me.   

If being radicalized is what it takes to make changes to patient access to information and treatment, then so be it!