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