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.



Saturday, April 9, 2011

FOOT DROP DEVICE UPDATE

OK, so now I've tried both of the electronic devices, the Walk-Aide and the Bioness L300.                                                                                                                                                     
Bioness L300
The Bioness rep met me and I was able to try on and use the L300 unit for an hour or so.  She took lots of time to get me tuned up right and I went away with an inner cuff marked for the correct placement of the electrodes.  The Bioness has a sensor that goes in the heel of your shoe, a device with the electrodes that straps under your knee and a hand control about the size of a ceiling fan control--pretty small.                                                                                                                                                 
This worked really well on me but I wanted to try the Walk-Aide too because you don't have to wear shoes, it's all self contained in one unit that velcros under your knee and it uses just regular batteries.
Walk-Aide
Next stop was at the prosthetic company that made my AFO.  Another wonderful PT spent a couple of hours with me so I could try the Walk-Aide, which unfortunately did not work as well for me, darn it!  It senses the angle of your lower leg and it may be that it is being deceived by  the subluxation of that knee due to missing cartiledge.                                                                                                                                                                                      
The Bioness, with its heel plate sensor is more reliable for me--detecting when my heel is off the ground and sending me the stimulation that tells the muscle on the front of the calf to pull up my foot. (I tried to look this up but Gray's Anatomy boggles me so hope my layman's explanation works for you.) If you have foot drop, you'll know what I mean.                                                                                                          
I know you are all wondering how zappy the zaps are.  Well, not bad...not really painful,  but startling at first.  I'm told you get used to it and I'm concentrating so hard when I walk anyway, that it almost doesn't matter.  I do have one online friend who uses a Bioness and she said she definitely did get used to it and is happy with hers.                                                                                                                                                                                                  
I'm still unbalanced, so I doubt I'll be able to get rid of my cane, but I think with some physical therapy help I'll be able to quit swinging my whole leg out to the side and walk more normally.                                                                                                                                   
Why swing my leg out to the side?  It's instinctive--if I keep my leg stiff, and swing it out, I can avoid catching my foot on the floor, therefore stumbling and possibly falling. It's exhausting, though, so any of the devices that are successful in keeping the foot up will reduce fatigue and increase mobility considerably.                                                                                                                      
Some insurance pays for these devices. Medicare does not. If you're in the no-insurance boat, ask about the cash up front price, financing plans, and if they have any rehabbed units for sale. Also check into the NMSS $500 assist, sometimes matched by the manufacturer for a total of $1,000 in financial aid.                                                                                                                                
More to be revealed when I get my device!