Sunday, June 26, 2011


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  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


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,'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 and April 9  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 .