26 April 2011

Alternative MS Treatments: NUCCA & CCSVI

After reading numerous posts all over the web regarding NUCCA & CCSVI - I started to do a bit of research & learned that many NUCCA chiropractors are comparing the NUCCA treatment to a 'non-surgical version of CCSVI' - so I thought - what the heck... I'll check this out.

I'm thinking I should have done a bit more research on the actual NUCCA process & treatment. I understood that it only focuses on the axis - to take pressure off the veins & allow proper blood flow. What I didn't look into is the actual process of the NUCCA adjustment.

Here's my experience -

I found a practicing NUCCA chiropractor & went in for an initial consultation. He did lots of tests - measuring my leg lengths, checked the temperature differences on either side of my neck, took measurements of hip alignment, and about 4 x-rays of my head/neck. Then he had me come back the next day to go over the xrays & for an initial adjustment. The adjustment was where I felt things go a bit 'off'. As he had me lay on the adjustment table (which was only about 4 inches off the floor) & he proceeded to 'adjust' my neck by placing his forearm at the base of my skull & I began to feel his ENTIRE body shake with what felt like tremors/seizure. My eyes flew open & I tried to see what he was doing. What I saw was his other arm making odd pulling motions - like he was somehow mentally 'willing' my neck to realign & visualizing pulling things back into place. I don't know about you - but I found this to be quite kooky.

Here's my thoughts -

Will I go back? Not likely. I felt absolutely nothing. I understand the thought process & idea behind the process - but feel I need to do a bit more research on the actual NUCCA process first to find out if I just happened upon a quack of a doc - or if this is actually the real thing. (On a side note - I have gone to traditional chiropractors since I was very young. I totally believe in the body's natural ability to heal oneself & that the bodys alignment is critical to this process. In addition to MS, I also have multiple scoliosis with more than 4 separate curvatures in my spine & no natural curvature in my neck. There are portions of my back - mainly the bra line area - that I have zero sensation in. So maybe this NUCCA process isn't going to be what I need or what I'm looking for.

Hmm... leaves a lot to be thought about.

What do you see when you look at the people around you? Or – maybe the question is better worded – what do you think when you hear someone’s name mentioned?

For example – when someone says Brett Favre – for 99% of people the thought that immediately comes to mind is football. I don’t see an image of the man anywhere other than on the football field – but surely there is so much more to him than that.

The same things can be said for people we see or talk to every day – whether online or in person. What do people see/think when they hear my name – or see my face?

I was ‘gifted’ a collapsible cane by someone I love dearly recently. I totally froze when it was handed to me. I know it was given out of the most sincere thought & with much love – but I have to say – that it has been bothering me… It really brought up a thought – I’ve been so totally open & honest about my life with MS… has that been a mistake? Does being so completely honest make others see MS before they see me? This is a thought I’m struggling with.

When someone thinks of me, I don’t know that I want ‘MS’ to be what first comes into their mind.

However - with that said, that doesn't mean that I will stop trying to raise awareness - or that I will stop doing what I can to help fundraise for research - or that I will stop fighting this war.

25 April 2011

I’m sorry that I haven’t updated this thing in a while. Seems life & work have decided to make a short excursion into hyper-drive! Work meetings, kids travelling, Walk MS preparations… yikes!

So much has been going on lately. My kiddos just went to spend a week with my parents in Oregon & had a great time. My youngest (not quite 5) made the trip for the first time… a big change for her – as this was the first time she was away from us for more than a day. She enjoyed time with grammy & poppy – but was ready to come home. My husband and I spent the week much like any other – working late, going to sleep early… learned we’re a pretty pathetic couple when it comes to going-out! By 9pm, we’re exhausted & ready to catch some z’s!

The walk is coming up on Saturday. I’m hoping that I can bank some energy this week & make it through the weekend. Goodness knows that I seem to be running on fumes yesterday & today… praying that isn’t a ‘sign’ that MS is about to rear its ugly head once again.

I’ve been on Gilenya now for nearly 4 weeks. I have my follow up appointments scheduled for next week – though I may call the ophthalmologist & see if I can’t get in a bit early. My eyes have been killing me… hoping that means just a simple prescription change & not a bout of optic neuritis – as that would mean that I cannot continue on this medication… and that would be bad news.

Good news however is that the Folsom CA Walk MS event has surpassed its fundraising goal! That doesn't mean though that raising even more funds isn't important! So much research still needs to be done - and so many people still need vital help that the NMSS provides. You can even Donate by CC online. Every dollar makes a difference!

04 April 2011


This past weekend, my husband and I attended a ‘round-table’ discussion with the National MS Society… to have an open dialogue with the MS Society regarding what the MS Community felt was needed – and ideas on what could be done to help the community as a whole. What a good time we had!
Before we delved into the discussion, our facilitator shared a few things with the group.
First – he wanted everyone to realize that one person CAN make a difference. He shared the Free Hugs video with our group to underline this.
Second – he wanted to ensure that the entire group understood the difference between being actively involved – and actively committed to what we were doing.  He shared a story (that according to my husband is a very old one) and analogy about the ham & eggs breakfast…
the chicken is involved – but the pig was committed – giving its all for that meal.  Involvement is great – but commitment is essential.
With that – we launched into a few smaller groups to discuss what we felt was our top priorities as the  MS Community… here was our list:
1 – a CURE and remyelination! Let’s find a cure for this crappy disease & put the NMSS out of business!
2 – More Transparent Therapy Information… whether it is on alternative therapies, nutritional, exercise, holistic, sharps disposal, etc.
3 – More FAMILY recognition. Get events & support groups that can include the entire family. (In our area, none of the support groups allow children… not everyone can afford a sitter all the time – and who says this disease doesn’t impact the child(ren) of the MS patient?  Furthermore, there is not a lot of ‘caregiver’ support – emotional support or otherwise.
4 – AWARENESS & VISIBILITY. Huge.  One idea from our group was to talk the SF Giants into sponsoring/adopting the MS Society… their colors are already Orange & Black… a Perfect Fit! J
I’m likely forgetting something – but there you have it. What we want… What we’re willing to be involved in… Now – the question is – what are we willing to be committed to? And how will we achieve these wants?
Well – I’ll tell you – I’m working on and committed to #3.  My husband and I will be working with the NMSS office here in Sacramento to begin a new “support group” that is family friendly. It may be just one group in the Sacramento/Natomas area – or a second group that would meet in the Roseville area too.   You’ll know when things get moving in that direction!

01 April 2011

Gilenya, Saving, Meal Planning, and Cactus Chili... :)

Day two & three on Gilenya have been uneventful. :) That's a good thing!

I'm back at work - getting things done & planning away.

My husband is on a new kick - save, Save, SAVE... That's a good thing too! :) One way we're doing that is meal planning at home... trying new recipe ideas - so we aren't tempted (as much) to go out to eat. The other day, he made a Cactus Chili... different - but good! :) I know it is abnormal for me to share recipes here - but just this once, I figure it is okay...

Cactus Chili

• 2 – 5 lbs of pork butt or shoulder roast (this can vary - depending on how 'meaty' you want it. We used about 3 lbs.)

• 1 large can of green enchilada sauce

• 1 can of refried beans – (for thicker chili – you can use a larger can.)

• 1 jar of Nopales - Drained. (in Mexican food section of grocery store)

• 1 large sliced onion

• Salt & Pepper & Garlic to taste.

• Cumin – about 2 tsp.

Cut pork into bite size pieces & brown with salt & pepper. (Do not cook through… just brown lightly). Add pork, drippings, & all ingredients together in crockpot. Cook on low for several hours (we threw it together first thing in the morning & let it cook on low all day while we were at work.)

Serve over rice & with tortillas. Top with sour cream & chopped green onions… (If you like heat – you can also top with diced jalapenos.)

I will admit - I was extremely skeptical about this one... but it was wonderful & many in my office have enjoyed it as well. :) I hope you take a leap & try it out... you may find something new to add to your dinner menus at home too. :)