Tuesday, March 29, 2011

FENDING OFF FOOT DROP (updated 3/31/11)

I'm always looking for things that keep me mobil. Right now I have two devices that help me deal with the foot drop that appeared a few years ago. For those of you who don't know what this is, it seems to have something to do with the nerves not firing the muscles that bend your foot upwards from the ankle. So your toes drag, catching on the carpet and anything else other than a slick bare floor.  And that's only provided you are wearing socks, because bare feet catch on a bare floor, surprise, surprise.                                                                                                                       
The first thing I got was an expensive, paid-for-by-insurance thing called an AFO that was molded to my very own foot and calf. It has a hinge at the ankle and heavy rubber straps that hold my foot up in a normal position so it doesn't drag. It was a huge relief when I first got it because I could stop swinging my leg out to the side to keep my foot up high enough to keep my foot safe. It costs over $800 but my part of it was about $80.
My shoe slips right over it once I take out the insole. It looks horrible here but it doesn't show under pants. If I'm really worried about that, I put another, thinner sock over the whole works before putting on my shoe.                                                                                                                                                                                                                                                          I do have to loosen the strap at the top of the calf in order to drive my car.  Not impossible, but annoying. 

 A cousin alerted me to a bungee-cord device that hooks into the eyelets of your shoes and pulls up the toes.  It had been invented by a fellow who was a runner and had developed foot drop.  A little hard to track down but I finally did and oh boy, that was so much better. It's called a Dorsiflexion Assist.  I believe it was about $80.                                                                                                                                                           


It has a soft pad inside which cushions completely, and it velcro's around your ankle. Three different length rubber bungees are included. You don't have to cris-cross when you attach--that's just for extra lift. 

I had d-ring eyelets installed on all my non-lace right shoes so I can wear this with anythingAgain, when I'm standing up, the pants cover the whole thing pretty well. I'm still tinkering with where to put the d-rings on non-lace shoes to get the maximum lift.  This is an example of d-rings that are too high on my foot.  The eyelets on the red boots are lower and that's noticeably more effective.
I've also looked into something called a Walk-Aide. 
 It velcros around your calf just under the knee and stimulates your muscles to lift your foot from the ankle. It does seem to work--though I don't know yet if you feel an electric shock of any kind.  Here's the link to a newscast:  
http://www.nbcconnecticut.com/on-air/as-seen-on/High-Tech_Device_Helps_Man_Do_MS_Walk_Hartford.html (sorry about the annoying ad,)         
and here's the link to the manufacturer:  http://www.walkaide.com
If you click on News, there are a number of videos to watch. Look for the links down in the body of the story.                                                                                                
I made a few phone calls and then let it go when I got an appointment for venoplasty for CCSVI.  Since that hasn't improved my foot drop, I am now pursuing the needed Rx so I can try this.  Getting it should be a piece of cake compared to obtaining a scrip for LDN or CCSVI treatment.  Some of you know all too well what I mean.                                                                                                                                                      
UPDATE 3/31/11.  A couple of online friends have emailed me about devices they use--so add these to the list.  I'm hoping to try both the electronic devices in the next 2 weeks:                                                                                                                                                                    
Foot Up:    Simple, elegant and relatively inexpensive. Note the strap that goes from the ankle cuff down under the tongue and laces. This is from the UK but if you google "foot drop devices" or "dorsiflection devices" you'll find similar products on your continent.
                                                                                                                                                                
Bioness:    another electronic stimulation device




Sunday, March 20, 2011

COURAGE & ENTERTAINMENT

Today I made it 9.6 miles to meet my daughter for lunch.  This may not seem like much of a deal and it wouldn't be if I were on my home turf but we're in a congested area in another state and Bill has been doing all the driving.    
One googlemap later, printed in very large font with a map on the reverse, and I was off.  No problems at all, unless you count that one tiny little turn into a cul de sac at what I thought was the SECOND light after exit 32B.      
                                                                                                                                             What is it about being mobility challenged that seeps over into the rest of your life? I can drive. I can definitely drive this rental car because I used to own one of them. I can read maps. I have a Garmin that talks to me. I have a nifty little bungee-cord device that helps my foot-drop and makes it easy to control that foot on the accelerator.  
                                                                                                                                             It's hard for me to admit even to myself that I sometimes avoid new places simply because I don't know how it will go when I get there. Where will I park?  How far will that be to walk? How many sets of eyes will watch my halting, teetering progress across the parking lot and entrance?                                                                                                                                                                             These are the things I think about.  I never think about the things that actually happen.  For example, the last time I had lunch with my daughter I dropped my sister's color chart down a drain in front of the restaurant and had to get down on my hands and knees, backside to the maitre d' and dining guests and fish around in the gutter.                                                                                                                        
Did I have on a short blouse that hiked up, revealing several inches of not-so-slim skin above my waistband?  Of course I did.  You would think I would have worried about that ahead of time!                                                                                                        
As you could have predicted: I did find the color chart; I did make it with a nod and grim smile past the straight-faced maitre d';   I most definitely did wash off the chart in its plastic sheath in the ladies room; and finally, I did have a great time at lunch that day, despite Fr's snorts of levity at the tale of how I had entertained the staff and patrons at the restaurant before she got there.                                                            
Then there was the time the airline baggage handlers incorrectly reinstalled the shaft for the seat on my mobility scooter, leaving it just a little too high and tippy. I kept thinking something was odd but couldn't quite get at it, until absolute clarity came to me at the exact moment my scooter and I toppled over sideways, skidding down a grassy embankment at a outdoor arts festival in Tucson.                                                                                                                                                              
The lawn was infused with dried grass clippings which flew to my clothes and attached themselves with dedication. Many stranger's hands trying to help me brush off was not quite what I had in mind for art and entertainment that day but, furry with desiccated vegetation, entertain I did!                                                                                                                                    
And hey, nothing like that happened today; I just had a good time with my daughter, both of us looking rather spiffy in a very nice establishment. It was worth the brief and useless angst I had earlier subdued.

Thursday, March 10, 2011

CURB CUTS? I'LL SEE YOUR CURB-CUTS & RAISE YOU 55 STAIRS!

One of my online friends has posted phenomenally entertaining videos containing, in part, the lack of curb cuts on New York City streets. His wry comments have made this site one of my favorite blogs to recommend, (wheelchairkamikaze.com).  But Marc, today we went like lambs to the slaughter at the Presidio in San Diego.                                                                                                                              
Sure, we check it out from the parking lot - no problem:  lovely, easy-grade walk up to the building.  See nice hedges; envision low-grade ramp behind them.
Haul Scooter out of trunk; put together; wheel at top speed of 4 mph across dangerous street where crosswalk is right on blind curve.  Bill stands up to full height to attract attention, should car come whizzing through.  Make it safely across; navigate over missing bricks on path. About halfway, notice steps.  Both stop. Put four eyeballs on situation.  "Probably a ramp from there," I state and keep rolling.                                                                                                                                  
Proceed to end of lovely path.  Hmmmmm...Lots of steps, no ramp!
Bill sprints up to scope out situation.  I say...no problem (and besides, trip to ladies room now of immediate importance.)  Park scooter at bottom, begin hauling self up steps using ever-loyal Leki cane.

First landing--Bill emerges from museum to cheer me on.  Disappears to inquire as to location of women's facilities.  
Oops.....More Steps.   
Reach landing at top of 2nd set of stairs.  Bill stomps back to me, waving hands--grumping, "No good, no good -- the restroom isn't working."                                                                                                                                                                            "Yikes, really?" I say--"I just saw someone come from the men's room down there."  Picture Bill standing guard for me outside men's room door. 
Bill tries door.  Locked.


"Nah, they told me none of the restrooms were working," says he. "And never mind anyway. Once you get to the end of this 100' walk, there are 15 more steps down into the museum."  
(Believe me, I could have made it if the plumbing had been working!)                                                                                                                                                             Bill takes quick look around at my insistence, while I hang out on very pretty, shaded landing.
me & my Leki
Bill takes wrong turn in museum and appears behind bars.  Definite photo-op
Bill finds way out; we then descend to Old Town and take in all the little shops and museum buildings. 
Thus endeth the Presidio adventure.                                                                                                                                                                 
What a lovely, warm day!  What a nice lunch in Old Town! What a wonderful working bathroom there!  What will I remember to check ahead on next time!

Thursday, March 3, 2011

CANNON SHOOTS & OTHER ASSORTED HAPPENINGS


The Californian

Bill took me along last Sunday on the Tall Ship Cannon Shoot he'd received as a birthday present. We spent three hours on the Californian, chasing around in the harbor with another tall sailing ship, Amazing Grace, both ships using black powder charges to set off fiery blasts at each other...no cannon balls installed, by the way.  All the crew were volunteers and three docents rode along to fill us in on the history of whatever we asked about. They knew pretty much everything about the acquisition or building of the replica ships,  including the ship used in the movie MASTER & COMMANDER. (here she is, the Surprise)
The Surprise
There were almost as many women handling the rigging as men and I got a shot of one of them way up at the top of the mast, untying the square sails  that top off the drama of these old boats.  Later, she had a turn in setting off a cannon blast, inspiring Bill to mutter, "Girls with guns!"

Turns out you owe the crew a round of drinks if you utter the word "cannon" on a ship as this particular piece of battle equipment becomes a "gun" once on board.

The Grace's guns were smaller (3 pounds) and she was also smaller and more maneuverable and faster--she pretty much sailed circles around the Californian while we blasted away with our 6 pounders.
firing a "gun" on the Californian
chased by the Amazing Grace
Here's the odd thing:  I knew Bill would enjoy this 
the birthday boy himself

but I had no idea I would have so much fun.  Unbelievably, I had a set of earplugs with me so I didn't have to plug my ears when the guns went off and could take pictures instead. I took over a dozen photos trying to catch the blast of fire but I never did get anything but a small pouf.


I got a huge kick out of watching everyone: one fellow had inveigled his way onto the Californian while it was being built in order to measure one of the cannons so he could go home and make a 1/4 scale replica -- which he did.  "For safety's sake, I didn't drill it so it won't fire," he said.   He had gotten the tickets to the shoot from his wife for his 77th birthday and was out there hauling on lines when they called for more hands to raise and later, lower, the many sails.

Then there was the woman whose son, a Marine, was stationed in Alabama. She got him on her cell phone so he could hear boom of the guns and their echos off all the downtown San Diego buildings.  She was there as a birthday present as well. Yup, there's a theme here.

It's an interesting sensation to be on the ship that all the other boats are gathering around to photograph.  Lots of pretty boats--some quite large--were around us much of the time and there were also quite a number of boats practicing in the harbor for an upcoming race. The Peninisula was one of them. 


Moving on through the week--I've had lunch with two friends from the old days. N. from Wisconsin was visiting her son here on her way home from a cruise. She came over on Monday and we had a great time talking and watching the ocean from a bench in the park.  

Yesterday Bill and I drove up to LA so I could see R. and that was just lovely. We talked for two hours and I wasn't ready to leave but rush hour was looming and we made it back to San Diego without any detours.  Usually we have to allow extra time for several wrong turns, missed exits and ignored advice from the Garmin,  ("Recalculating!")                                                                                                                                   
  I used to think myself a good navigator but I've sure missed a few this trip and Bill has been pretty darned great about being the driver.                                  

I know I have not yet talked about the piano recital, T's basketball game and G's volleyball tournament.  Wonderful to be here for all of it as I don't have to tell any of you grandparents.  Picking up the kids at school each Friday has been another bonus. I've got a thing about not posting photos of the kids online so just imagine our wall to wall grins at these events.                                                                                                      
Coming up:  cousins lunch on Monday!

MS AND ALTERNATIVES

Since I was diagnosed with MS in 2003, I've always looked at alternative treatments, accepting some, (LDN and diet,) and rejecting others, (bee-sting therapy, for one.)  Similarly, I initially tried prednisone and copaxone, two standard treatments,  and rejected others such as the depression-causing beta-interferons and now Tysabri and the like.                                                                                                                                                  
I'm optimistic about CCSVI (Chronic Cerebrospinal Venous Insufficiency) research and treatment and not just because it seems to be giving considerable relief to about 1/3 who have the procedure.   Although I am one who had only minor results from my CCSVI venoplasty,  I'm not discouraged and have been awaiting further developments before considering it again.  As one with PPMS, I may never duplicate the best success  but I'm confident that the research will eventually throw some light on my situation.
http://ccsvi.org/                                                                                                                                                                                                                                                        We need to find the people, medical and otherwise, who will partner with us in our search for healing.  I'm convinced that Norman Cousins had a handle on something really valuable when he advocated for daily laughter and I make sure I get plenty.           

LDN clearly worked for me right away. I still take it and I think I always will. The reduction in fatigue was immediate and dramatic.  A few years ago, I went out of town and forgot my LDN and oh, sister, could I tell what it had been doing for me.  It was research I don't need to repeat!
http://www.lowdosenaltrexone.org/                                                                                                              
Dr. Terry Wahls has much to say about a healing diet that's interesting and useful and she certainly has an amazing personal story to tell about healing her own MS.
http://www.terrywahls.org/                                                                                                                  
There are others with similar success - George Jelinek, for example:
http://www.overcomingmultiplesclerosis.org/                                                                                               
Yeah, I know, I know....diet is the worst, the absolute hardest thing to change. I get it. I had to first persuade myself to be open minded enough to read it, then argue myself into trying one tiny thing. All I can say is, if I get too much saturated fat in a day, I can tell by the way I walk the next day; when I eat lots of fruits and vegetables, after a few days I feel stronger and actually crave more of them.  It gets easier to make the food choices when you are getting results.                                                                                                                        
What's next for me?  The big bugaboo:  sugar!  I've gone years without it but not since  I was diagnosed. Now I've got 2 weeks under my belt.  Some days are, well ... aaarrrrrgggghhh! but mostly it's not that awful to bite down on each juicy section of a clementine instead.                                                                                                                                                     
My Mom was raised by the daughter of a country doctor; it was a considered a reflection on his medical skills if his family got sick, so, though they were always well-attended, they were encouraged to minimize their illness and not wallow in it. Mom did everything she could to make us laugh and lighten up if we were sick.  She started me on the track and other lessons I've learned along the way have set me up for being able to deal with MS.                                                                                                                                                                                    The fact that I use a scooter for walks longer than 100 feet does not prevent me from having an excellent quality of life situation.  I really believe that is because my attitude gives me hope for the future and lots of fun in the meantime.