Friday, October 25, 2013

WHEN I WALK: Documentary Film Rakes In Acclaim

The New York Times just gave my online buddy Jason DaSilva's new documentary film about dealing with MS a great review and made it a NYT Critic's Pick.  All of us in the MS community feel such a strong link with each other that I know I can safely say he is my buddy, even though I've never met him.  Jason is getting nominations and awards all over the place but until I read the review, I didn't quite get the depth of his talent as a filmmaker. "Fueled by its maker's uncompromising intelligence and unrelenting candor," is my favorite line.

When you have a chronic illness, it's so easy to have your life taken over by it.  To be recognized for excellence as a professional in your field is one of the best things that can happen. Congratulations, Jason!

To read the whole review, click here:

Filmmaker Chronicles His Battle With Illness

‘When I Walk,’ a Struggle With Multiple Sclerosis

NYT Critics' Pick

Monday, January 14, 2013

TROUBLE WITH THE SCOOTER.....


Ever had a cat that disappears just when you're about to put him in the car and go to the vet for his shot?  or a kid whose miserable, aching tooth miraculously quits hurting just as she's called into the dentist's chair?  My scooter has a life of its own and has refused to do its squealing whenever I take it in for repair...lovely, eh?

Now I had a whole new rear wheel assembly and motor put on a year ago, so I'm hoping this video will do it for the service department and they'll be able to locate the problem. So this blog is for you,  Scott!

FOOTNOTE:  It turned out to be the brake. This probably happened in the belly of an airplane on a trip but it got worse over time until we could pinpoint the problem.  I got a new brake but eventually just got another scooter because the old one just wasn't very peppy and I want my 3-4 miles per hour!  I spent almost enough on the various repairs to buy a new one. Next time, I'll know better!

Friday, June 8, 2012

KNEE HYPER-EXTENSION - WHO KNEW!


Well for heaven's sake it wasn't the foot drop at all!  I got my referral to the orthotics place and hauled in all my devices:  that is, the AFO, the bungee cord Dorsiflexion Assist, the Bioness L300.  What I thought I wanted was the carbon fiber Allard device, possibly with the hyper-extension control that attaches to it, making it a combo device.

What I learned was that people with MS often progress into knee hyper-extension. Apparently it is a very stable position to have your knee locked like that, and we, being tippy and tippier as time goes on, just naturally want stability. Imagine that!

Sunday, May 27, 2012

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/ 
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.

Friday, December 23, 2011

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!                                                                                                                                

Monday, December 12, 2011

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.

Sunday, December 4, 2011

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 Bioness L300 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).

Monday, November 28, 2011

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.

Tuesday, September 27, 2011

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.        

Wednesday, September 7, 2011

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.                                                                                                                                

Wednesday, August 17, 2011

Absolutely Nothing to do with MS - Everything to do with Life

A few weeks ago we had our 12 year old granddaughter and her 13 year old cousin over for the week. They were taking part in a theatre camp and staying with us. The usual teen and pre-teen stuff occurred:  outlasting us at bed time, constant raids on the fridge and pantry, eating multi batches of whatever had lots of sugar in it--hard to find in this house but they did, shopping for hours with far less money to spend than the items they were browsing and finally--fighting, fighting, fighting. How successfully I had repressed that memory!                                                                                    
The entire week made me think of my own grandmother and the times my cousin Bill and I spent with her at her lake cottage.  He and I were born 19 days apart and we might as well have been brother and sister--I adored him, but we fought like siblings and got into various scrapes together. Here we are in a family picture at 3 or 4, looking a little shell-shocked but together as usual.
I emailed him towards the end of the camp week:  
Remember the time we were at the lake with Grandma and a storm was coming and we wanted to go out in the boat and she said, "all right, but don't go through the channel."  After promising, of course we bee-lined it right for the channel, went through into the next lake and promptly got caught in a big thunderstorm and the motor stalled out and wouldn't start again.                                                                                                                                                                                                                         We finally made it back, several hours later, and Grandma said, "You've taken 10 years off my life!"  Bill definitely remembered the 10 years thing.                                                                                                                                                             Subsequently, I was telling a friend the story and started speculating--
Let's see, if I was, say 13 or 14, that would have been (quick addition here) 1956 or 57.  Grandma was born in 1890 so that would make her.......oh my gosh, she was my age!                                                                                                                                                                                                                                                                                       Aack!  That really made me think because I have absolute clarity on how old Grandma was then. Really old. House dresses. Wirey, grey hair. Hearing aid. Old!                                                                                                                                  
Sudden vision of how my grandchildren see me. Oh my.
We really loved Grandma. She usually only had one of us grandchildren over at a time and showered attention on us. She didn't do anything big--we went on the bus with her to shop or walked a block up to the Hasty Tasty for a coke, or watched her mix up a batch of her chocolate cookies and ate as many as we could. We didn't get to eat TV dinners in their aluminum trays in front of the TV set at home but it was a break for Grandma, usually the best cook ever. She didn't tell our parents about the scare either. I really should call on her spirit when grandkids stay here now.                                                                                                                                                                                     
I thought I'd never forget how it felt to be 13: charged with sudden bursts of restlessness, frustrated and ambitious and time just crawled. It seemed forever before I would be able to get out of high school and go to college and be on my own. I was tired of clerks following me around department stores, acting as if I were about to shoplift. I wanted to go-go-go all the time but had no transportation other than a bike and what girl would be caught dead riding a bike to social places at 13? I wanted something all the time but I never knew what it was.                                                                                                       
Our family camped and my mother always preferred quiet campgrounds. She found the most remote, private spots in the whole quiet place for our tent. I wanted to go where there were lots of people and other kids and Saturday night dances for teens. The one time we did, I refused to go into the dance hall. I suppose I was afraid of making a fool of myself.                                                                                                                                                                                                 
What is this piece about, anyway? It's about families and being young and growing older and remembering and being sympathetic and enjoying what's in front of me. It's about the maybe couple of decades I have left and how I spend them. It's about what is important and what is not and how I choose to live. It's about who I am and who those 13 year olds will become and the wonderful and terrible times in front of them. Am I feeling nostalgic tonight?  Am I sentimental?  Am I going to actually post this?  Oh yeah!

Thursday, July 7, 2011

GETTING USED TO MY BIONESS L300

It's been almost a month since I started working with the Ness L300 device and I've just come through a doorway in the past week.  I really like this thing.  I'm walking more normally, I'm stronger and I'm getting better at it every week. It did take a while to adjust to it but now I put it on right away in the morning and wear it all day and into the evening.  This is true even when I'm working at home because it takes so much less energy to walk with it than without, that I want to have it available.  I do shut it off (not on standby) while I'm working at my desk to save the battery.                                                                                                            
I've had some physical therapy sessions and the PT is helping me break my old bad habit of swinging my leg from the hip and has given me some exercises to strengthen the muscles that help me lift my lower leg from the knee, and my lower back muscles as well.  I'm not very good at adhering to a regimen but I've really tried on this because I knew I had let myself get too weak as I relied more and more on the scooter for transportation.  Now I'm walking behind the grocery cart again, walking into appointments and the scooter is cooling its wheels more and more often.                                                                                                                                                                                                                                                                                    
It's really empowering to take charge of my situation like this!                                                              
I'll post videos as soon as the community theatre show is over--up to my neck in Wizard of Oz tickets right now!

Sunday, June 26, 2011

CHANGE!

I saw a feed on another blog: What Does MS Mean to You?  A banner kept rolling by: Invisible......Dreams Lost......Thief......(those just don't apply to me)....Change....that one did though, and thinking about it triggered these additions:                                                                                                                                                                                    
New Friends......Leave Extra Time to Get There! ......Keeping Up -- Research & Technology........Deciding What's Really Important.......                                                                                                                                                                                                  Each phrase I added is is a big plus to my life.  Who doesn't enjoy new friends? The MS Community is just amazing.  We run the gamut from fascinating to everyday, from brilliant to ordinary, and from passionate to patient. Interestingly, every single one of those traits is present in every single one of my new online friends. Just wait for it.                                                                                                                                                                                                                                                              I love it all.  I love to see a buddy's brain power running full out and I also respond to the everyday happenings of someone's life.  I could kiss them when they post a complicated medical report and make it easy to understand.  When someone has family problems or is just a little blue or a lot grumpy, I take comfort because -- well, me too.                                                                                                                                                                                                                                                                                         I would never claim to be a Techie, but with the online community so active, I've had to learn all the new stuff to keep up.  All right, all right, I'm still not texting but that's a social protest statement.  I mastered error messages in my Windows Updater, moving files from one drive to another and streaming movies via my Wii--now I think I can do anything.                                                                                                                             
Then there is Time:  I have screamed into appointments and meetings just under the wire all my life. I must have liked the adrenaline rush because this never improved at all until MS slowed me down.  It is amazing how much less stressful it is to give myself more time and what a great thing it is to arrive early.  Honestly, I had no idea how much better life is when you are not running frantic.                                                                                                                                                                              I check the number 9 - Very Good - for Quality of Life at CCSVI Tracking  www.ccsvi-tracking.com  only because it specifies that a 10 means "Perfect, no MS Symptoms," but I protest!  I really have an excellent life. My dragging foot and numb fingers are not any more troublesome than than my previous need for speed or how I sat in judgement on someone who didn't do things my way.                                                                                                                                            
 If you think walking with a cane is pesky--stand that next to a self-imposed requirement to be perfect all the time.  When I get irritated because someone is holding the door open for me when I'm still 100' away I try to remember what it felt like to never be able to accept help of any kind, ever!  I'd rather thump and wobble my way across a parking lot under the eyes of a stranger than be that isolated, ivory tower woman from my past.                                                                                                                                                                       
I used to sneer when someone recited the platitude, "a door never closes without a window opening somewhere," usually launching into a five minute riff about the mindless simps who blathered it.  It's a good thing I've learned to laugh at being wrong, because transport forward to 2011 ... Well dang it all, if it isn't true!

Friday, June 17, 2011

AND MAY I JUST SAY.........ACUPUNCTURE - YES!

How about this!  I've had really sore neck and shoulders for 2 or 3 years, off and on, and pain in my arm for 6 months, and I can't believe it, but acupuncture seems to be the cat's pajamas for this. I've only had six treatments so far.                                                                              
I had tried a bunch of stuff on the arm pain under the assumption that it was an odd form of carpal tunnel problems, but nothing touched it. I never did have any wrist or hand pain--it was all centered in the 6" above and 6" below my elbow. I guess it may never have been carpal tunnel.                                                                                                                                                  Venoplasty last December took most of the neck and shoulder pain away for a while, but it came back and has waxed and waned a bit ever since...nothing like it had been, but still--pesky.  I cannot believe what it feels like to have almost no pain at all.                                                                                                                                                                    Others told me it did improve their MS symptoms but they would come back if the acupuncture was discontinued.  I'll have to see about that.  While I was there, my great doctor of Acupuncture and Oriental Medicine told me he wanted to needle my legs for the MS symptoms too.  What the heck--why not?  I have nothing to report there, though..it's only been a couple of times and I don't even know what to look for.  I gathered he did not think he could improve my foot drop but he did not think my Ness L300 device would interfere with the acupuncture and seemed to indicate that it was a good idea for me.                                                                                                                                                      
I found a school for acupuncture. They have an MS clinic run by the interns or you can see a doctor/instructor if you prefer.  The students are supervised and it is incredibly inexpensive.  Just a thought for people to check out in their areas.  Oh, and does it hurt?  Not at all!

Thursday, June 9, 2011

I'M ZAPPED! .... Footdrop Device Progress

Well the NessL300 came and Tuesday was my first day of physical therapy. I've been hooked up, gelled, positioned, wired, unwired and generally made ready to go.  This is the device that sends an electrical stimulation from my calf down to my foot and makes it raise so I can walk (hopefully) more normally.   See my March 29 http://generalstatic.blogspot.com/2011/03/fending-off-foot-drop.html and April 9  http://generalstatic.blogspot.com/2011/04/foot-drop-device-update.html  posts for more on this.                                                                                                                                                                                  
Right now I look like a lopsided Frankenstein monster--one foot jerking up in the air at least twice as far as it needs to go and me saying "Yikes" at every third Zap.  I've got lousy flexibility in that foot now--probably from a combination of all the metal still in my ankle since 1985, my lack of walking and the wearing of my AFO.  I've got a wedge I've been standing on a few times a day, attempting to stretch out that ankle and give me more movement.                                                                                                     
The PT explained that not only do I need to learn to walk with this device, I also need to unlearn all my bad habits.  You know what they are--swinging my leg out at the hip to compensate for the dragging toes, stiffening my leg in order to do that, which has given my thigh muscles an unneeded vacation from lifting my leg at the knee.  Ack!  Is there anything I've been doing to get exercise for the past three years?  I always thought I was because just getting up from a chair and walking to the door wore me out.  Occasionally, I would nobly walk behind a cart at the grocery store instead of using their motorized cart.  So that should prove how much I exercised!  Doesn't it?  Ahem....well.......  
                                                                          
You would think that exercise and movement would hang out in the pocket of a Type-A personality but I am proof that the popular definition for Occam's Razor doesn't always hold true. I wasn't dubbed the Queen of Expediency for nothing; Economy of Motion is more my style.                                                                                                                                                                                                                                 So here goes--working up from 20 minutes a day, I've got to convert some of the energy in my head to motion in my body to get this done.  But if my PT is correct, in a month I'll be able to wear it all day long and leave my scooter behind much of the time.


Saturday, June 4, 2011

THE GREAT TRAIN RIDE...if you can get up the steps!

Last weekend four of us took an hour and a half train ride from Osceola, Wisconsin over to Marine on St. Croix, Minnesota and back.  Great time--fun old train and gorgeous green sights of steep cliffs and the St Croix River along the way.           
But that was later.  Getting me on board was either a fiasco or spectacularly funny, depending on your angle.  The steps were far steeper than I remember as a kid--and with my bad knee being on my "good" left leg, and clinging to the handrails straining my wrecked right shoulder--well, you get the picture.                                                                                                                       
B. was behind me pressing upwards with his hand in the small of my back, while I strained in slow motion up every step.  The queue watching me grew longer.  I remember thinking how glad I was that he had his hand on my back and not lower, though that might have been more effective and I'm sure it would have been more entertaining!  I'm torn between wishing there was a photo to show you and being relieved that there isn't.                                                                                                                                                                                                        Once on board, though, there was comfortable seating at the tables that had been put in to accommodate the periodic dinner train runs this nonprofit sponsors.  
I decided to not risk my poor balance on a moving train, but the rest of our party walked up to see the mail car with its mailbag and long hook standing by. There were also a couple of fully restored cars with reclining seats and plush upholstery.  There were lots and lots of volunteers on board--all in their own railroad costumes, and the female conductor with her ticket puncher was a big hit.                                                                                                                                                                                                                                                                               Railroaders--they're everywhere.  We went to the Railroad Museum in Balboa Park in San Diego this past February and it too had a hoarde of volunteers.  They ran the model trains and talked to people about the exhibits and trained the young kids who were going to be taking over in 20 years.  I guess if you love trains, volunteering on Memorial Day weekend is a pretty good way to get a ride.                                                                                                                                                                                                                                                                   
The stories started as the train pulled in.  One fellow talked about taking the train from Pennsylvania to St Louis at Christmas. They had sleeping berths and his older brother got the top, but he was too little to climb up there, so he slept on the bottom with his mother. The porter came along and closed up the curtains for each berth and he fell asleep to the rhythm of the train in motion. He remembers waking up when the train would stop; he'd lift the window shade to peek out and see people walking on the platform--women in fur coats and the snow falling and there he was, all cozy and warm in the lower berth.                                                                                                                                                                  I suddenly remembered taking the Empire Builder from Fargo to Seattle in 1962 on a choir tour and sitting up all night in coach.  When you're 19, and there are plenty of hormones riding with you, sitting up all night is not necessarily a bad thing.                                                                                                                                        
In 1967 I took a train from Chicago to Fargo to see my folks. When we got to the Mississippi at St Paul, the train slowed dramatically and a peek outside showed me water almost up to the railroad ties. It wasn't the worst Mississippi flood I've ever seen, though. Two years later the big river flooded all the way to the Gulf.  I could hear the history lessons going on all up and down the car; at every table, memories were pushing their way out.                                                                                                                    
Who would ever have thought we'd see the death of trains in our lifetime?  Then we looked forward to high speed rail systems and sleek, streamlined engines.. How could a train that according to the American Association of Railroads gets 436 miles to the gallon be replaced by trucks that get 12?  And why would we ever imagine that a train ticket would be almost as expensive as flying?                                                                                                                                                      
There are many things other than MS to think about .






Thursday, May 26, 2011

FIVE MONTH UPDATE ON CCSVI




MONTHS!


Thank goodness for the postings of a number of bloggers who talked about having had no results from their venoplasty for CCSVI.  Because of them, I went to my procedure with eyes wide open and with the attitude that I would be OK with it however it came out. I just had to know. The money was spent the minute I made that decision and I really had nothing to lose from that point on.                                                                                                                       
It can certainly be disheartening to have no results; mine have been minor enough to cause me to wonder if they are just my imagination. I have no regrets, however and I feel like a pioneer, having been part of the early research. It's a lot of money, yes, but I was spending it to make sure I hadn't just ignored something that I would regret the rest of my life. I might still get some back from insurance and that would definitely be a good thing.                                                                                                                           
Because I am now five months past the procedure, I'm going to use this post to update you, and myself, on what has happened.                                                                                                                                                            
Within 36 hours of the procedure, I realized that 95% of the pretty awful shoulder and neck pain I had been fighting for over two years was gone.  I could feel carpet under my feet. My face and scalp were far less numb.                                                                                
Within a week, most of those symptoms had returned except the neck and shoulder pain  - not a great result, but within a month, I was realizing that I could read difficult reports and understand them again. I never thought I had brain fog, but I have to admit that I would just throw my hands up in defeat over those reports and quit--not a good idea for someone with MS who is trying to keep up with various treatments and alternatives!                                                                                                                                                                                                         
At the five month mark, I can still read the reports, I still have much-reduced shoulder and neck pain and I've actually bettered my walking time a fraction on the CCSVI-Tracker site. I now can stand, walk around an object 3 meters away, return and sit in 17 seconds.  Just 3 months ago that was 24+ seconds.  I thought it was a fluke but it happened again this month. Some of the uninitiated will pause at my pride over a 7 second improvement but hey, that's almost 30% better!                                                                                                                                                                                             
I do feel stronger. I can't measure that, but I seem to last longer, feel sharper and more confident in my walking. At the moment my face is again less numb but it does come and go. Nothing else has changed. I still have foot drop, I still have numb toes, I still walk with a cane and use a scooter frequently, but about the venoplasty?  I still have absolutely no regrets. 

Monday, May 23, 2011

That "I've Gotta Do Something" Feeling

Every once in a while I wake up feeling "I'm getting worse and I better do something--fast."  Oddly, not once has it actually been true that I'm far worse than I was the day before, though I know that definitely can happen, especially with relapsing-remitting MS (RRMS). I probably have the PPMS (primary-progressive) form, so I've never noticed day-to-day changes; I can only see them looking back over six months or a year.                                                                                                                                                                                
Sometimes when I panic, it's because I've edged over a hump of sorts that makes me just feel as if I'm screaming downhill, though probably the changes have really been happening for years.                                                                                    
So what do I do?  (I love lists, so here it comes:)
1.  Figuratively take a deep breath and literally will my heartbeat to quit flirting with the stratosphere.       
2.  Tell myself that in the morning I'll figure out what all my options are. Yep, you guessed it--it's usually in the middle of the night that I panic.  
3.  Surround myself with a golden light, think of something happy and go back to sleep. I admit it can take a while
4.  In the morning, if I panic again, or if I have a sense that it's time to face something, that's when I think it through and start searching on the internet. I can always find someone talking about my particular bugaboo.
5.  Plan it, do it, get it or forget it.
                                                                                                                 
Plan It, Do It, Get It:  When I decided I was seriously losing mobility, (funny how you can stumble along for months not noticing that you can't walk very well, isn't it?) that's definitely a big hump, so I looked around for all the possibilities that would help keep me mobile - foot drop devices, scooters, rolling desk chair on a hard mat.... I love the wind in my hair when I let my little three-wheeler out to its full 4 mph and race ahead. I didn't know how much I had missed being able to hurry!                                                                                                                                              
Forget It:  When I wake up thinking that I should be doing something--I spend time on it. However, when I wake up straining to remember what I should be worrying about--well heck, I recognize that particular brand of insanity.                                                                               
When I can't do a thing; when my nose is flattened against a wall; when there are no options I haven't tried, then I take charge of accepting the situation. Of course that's the hardest thing--of course it is, but I know how to do it and when I get it done it always brings me some peace. I've been thinking about how to describe my process for this but I don't have it in hand yet. That'll have to be for a later post.                                                                                                                                              
There is one good thing about any of these moving-into-a-new-stage episodes: I reevaluate my time and activities and quit doing quite so much of what I don't really enjoy any more. I try to do plenty of things I love.                                                                
A couple of examples: I have reconnected with reading again, ever since I got a Kindle. Being able to blow up the print was instant relief for my eyes. I can stream an episode of All Creatures Great and Small via Netflix and my Wii. I never fail to get a # of good  laughs and I always feel happy when it ends. I know I bang this drum too often but laughing is just imperative for me.                                                                                                                                                                    Whether to take or not take the drugs is so individual--no one can tell us what to do. I think I make my decisions by educated instinct. I have ruled out some drugs for myself but not others--I do spend quite a few hours each week reading and keeping up with developments at CCSVI sites like http://ccsvi.org and ccsvi-ms.ning.com. I'm often at MSCured@Yahoogroups.com and Patients Like Me as well, not to mention favorite bloggers. All this keeps me feeling a part of life and in charge.                                                                                                                            
I think we just have to make the best decisions we can as the need arises.  It's smarter for me to get some fun every day than it is to fuss if I've made a wrong decision and have to do a turnaround. I tried Copaxone for a year and steroid IV's for a week and they didn't work at all but I don't have any regrets; I just won't do that again. On the other hand,  LDN (low-dose naltrexone) and low-saturated fat diets clearly do help me.                                                                                                         
I'm also waiting until they get the CCSVI thing figured out better and I was really getting impatient for a while. I contemplated a second venoplasty procedure, asking,"the next time, should I go to a place where they pay more attention to the valves, perhaps letting them 'damage' these gatekeepers," as one doc described in a well known internet video?  Will there be any long-term bad effects from that?  We just don't know.                                                                                          
I can only tell you that right now I have a "wait for it" feeling so I'm holding for a while longer, zipping around on my scooter and looking for new ways to get laughs.

Friday, May 13, 2011

WARNING--CHEERFUL THOUGHTS AHEAD!


My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically.
Dr Stephen Hawking

That reply says a lot and I think that [last] sentence says it all for me. I found the whole story very inspirational. When I think of Stephen Hawking, I think quantum physics before I think ALS.
an online MS friend                                                                                                                                                                           
There have been times in my life when I was physically in good shape but so negative, so mentally distressed, that a cloud of gloom surrounded me wherever I went, like Joe Btfsplk in the old L'il Abner cartoons. I always had something critical to say and there was almost no enjoyment, no happiness for me anywhere. I did function: I worked, I raised kids, I had friends; I was just one sad puppy.

It took a couple of years but slowly, slowly I dragged myself towards being more positive. I remember that I could look back every 6 months or a year and say, "hmm...now I'm only negative 50% of the time;" or "wow, this time last year I was so much worse."  It was a big deal to me when I realized I was upbeat about 80% of the time.

It was a hard won change and I keep an eye on myself all the time now, to keep from slipping back. If I'd have to pick--not that I think I should have to--but if I did, I'd pick losing function physically to losing the fun and joy.  What good is running and jumping if I'm miserable all the time anyway.

Someone once pointed out that negativity bounces off positive people but sticks to negative people. She said that if someone makes a negative statement in a room full of positive people, it bounces around and comes right back to the originator, making her even worse.  I have to admit, it was no good being around cheerful people in those days; the more I grumbled the worse I felt--probably because they weren't taking any of it on and it was glomming right back onto me every time I opened my mouth to gripe.

Speaking of Dr. Hawking, wouldn't it be interesting if all this turns out to have something to do with physics and has a real scientific basis. Positive and negative particles finding their natural path or black holes that act according to the set of our minds on any given day. And Hawking is just the uniquely qualified guy to spot it.                                                                                                                                    
here's a link to the entire article on Hawking
http://www.nytimes.com/2011/05/10/science/10hawking.html?_r=1&WT.mc_id=GN-D-I-NYT-MOD-MOD-M201-ROS-0511-HDR&WT.mc_ev=click                                                                      

Saturday, April 30, 2011

OLDER WHEN DX'd

I was almost 60 years old when I was diagnosed with MS and I'm wondering how many of us there are. Everyone I meet with it who is around my age seems to have had the disease for years and years. I'd really like to compare notes on some unique things about being this old at diagnosis.                                                                                                                                                                                           THE  GOOD STUFF:
1.  Who cares if I can't wear high heels now..I didn't want to anyway!                                                                 
2.  My spouse is just happy to have company in his older age--doesn't need any dancing, partying ball of fire.  This is good because I retired from the fast lane a long time ago, having nothing to do with MS.                                                                                                        
3.  I had already been attributing some of the MS symptoms to my age so they didn't seem particularly limiting after diagnosis. Everyone nearing sixty starts to joke about being forgetful and losing words, keys and their place in a conversation. Ditto a few limiting arthritic joints and I even see that Whoopi is now being paid to advertise bladder issues to the general public.                                                                                                                                                                       
4.  My life previously had plenty of ups and downs which I had learned to handle so it was easier to fall right into the adapting mode.                                                                                                                                                
I guess this comes under THE BAD STUFF:      
I've read about "The MS Personality" in four or five books. Can we really all be the crabby, emotionally volatile folks that are described?  Wait, wait, no asking our spouses, or our siblings, for that matter....   

Tact has not been my strong suit. For a good 30 years I worked hard on this--running through any number of disciplines and organizations that foster self-awareness and growth, among them, Association for Research and Enlightenment study groups, Spiritual Frontiers Fellowship study groups, 12 step study groups, the Course in Miracles, Re-evaluation Counseling, Transcendental Meditation.  There came a time when I actually did have a reputation for diplomacy.                                                                                                                        
I was diagnosed with MS in 2003.  For months and months prior to that I had been asking myself, "What's the matter with you?  When did you get so sharp and impatient?"  I was exhausted all the time, the five steps between levels on my four-level house looked insurmountable most days, and it felt as if everything was deteriorating around me.  I think that's when I let all that hard work go down the drain. Fatigue will do that to you.  I've found three solutions:
1.  to not let myself get so tired, (yeah, right.)
2.  to take on less that requires physical exertion, (bummer!)
3.  to remember to meditate. (This actually works.)        
                                                                                                
THE WEIRD STUFF:
1.  When you've already had the cartilage in your knee reamed out and trimmed up, having that same leg go numb and become your "bad leg" is not necessarily a great idea.                                                                                                                                                                    
2. Because the world wasn't spinning, it never occurred to me that I was unbalanced; I thought I just had weak ankles. That doesn't seem so smart in retrospect but it worked for me for a few years...even through stumbling on the edge of a sidewalk and falling directly into the corner of a brick wall, breaking my foot and leaving a giant goose egg on my forehead.                                                                                                                                            
I had to sprain my foot and ankle twice and break that foot one more time before I made the connection.  Ohhhh...and that time we went ice skating for my first time in 40 years and I spent the entire night shuffling around the rink holding on to the wall?  Hey, I bet that was MS too.                                                                                    
Those were the days I was writing grants for my community theatre; I appeared at the question and answer session for one application on crutches and with a black eye after that first spill. It got a big laugh from the panel when I said that my husband had refused to come with me.                                                                                                              
3.  After I had my CCSVI screening and subsequent venoplasty, I went to what turned out to be one of the only places in the world that would take someone over 65 and was both doing the procedure and collecting data for research under an IRB approval. (Institutional Review Board). This really creeped me out; what if they hadn't taken me!

4. My 50th high school reunion is coming up. My scooter and I will fit right in with all the walkers and canes that proliferate at this sort of thing. But guess what--they're mostly all retired and I'm the one who is still working!  I hear they're pretty much white-haired and I'm not, thanks to my salon and a conviction that it's simply not fair to be older and have MS AND have grey hair. What can I tell you, we control what we can. 

I see that the good and weirdly entertaining stuff has taken up most of the room in this piece and that I've given short shrift to the dark side. I don't think that was intentional.  I've heard some pretty compelling, entertaining and even laughable stories about the bad stuff from MS compatriots. If there's one thing we in the City of Shredded Myelin know how to do--it's laugh at the bad stuff.