A Good Week

On Monday we spent a few hours with Zak & Caycee... playdough, puzzles, books, bubbles and lots of giggles. Then a bit of a visit with Justin & Dayna while I held and fed and adored Lynzee. No pics :(

We also saw Cooper FOUR days this week! And he's still here with his mom and his herd of elephants.

While he naps, Sarah and I have been sewing together. I could get used to that. What a pleasant way to spend the afternoon . . . sewing and talking. I love sharing this time with Sarah.

She's working on a Cooped Up original design and it turned out so very cute.

Quilting / Sewing progress this week included:

Two more blocks for On Point BOM

This quilt got loaded on the frame. I decided on gray thread and it looks really good so far - I think it was a good choice. I'm having trouble deciding what to do for the red squares. The rest is all over loopy and goes well with the design of the fabric.


I made the binding for this quilt.



Almost finished some curtains / drapes for a couple windows.

AND . . . MS has its ups and downs, its good days and bad days, and this week we enjoyed nearly FOUR pretty darn good days in a row!!! Just awesome!

A new perspective

I stumbled on an interesting website today called multiplesclerosis(acts like a vacuum cleaner). It's full of pages from the perspective of a person with MS and so much of it was familiar. But I particularly liked a page that talked about a kit that could be used to demonstrate to an individual in some small way what it's like to have MS.

As a side note - I don't agree with the author that those who just don't get it are jerks. They just don't get it. It's hard to get. I don't always get it. Maybe that's because I'm a jerk and don't know it!

Anyway, I thought the illustration was pretty good. He calls it the "MS Perspective Kit". It made me laugh out loud and it made me cry.

Busy week, part two: Walking with MS

Browsing the internet recently, Scott found something called a WalkAide. It is supposed to help people with "drop foot" walk. Drop foot is when the foot drags and causes a person to stumble or fall. We've recently learned that Scott may not have it but that the problem is likely in his hip or somewhere other than the foot. But he made an appointment to be evaluated just in case the device could help. He says he just wants to be able to keep up with the grandkids.


The WalkAide is two electrodes held on with a cuff that has a controller attached. When the leg is behind the perpendicular the power is on and a shock is sent to the muscle. The leg moves forward, the shocked muscle lifts the front of the foot, the leg is in front of the perpendicular and power is off. Repeat.


Before the test run they poked around Scott's leg with another shocking device looking for the best spot to place the electrodes. It was interesting to watch the reactions of his foot depending on where the shock went. Sometimes just a wiggle, sometimes a swing to the outside and sometimes a hugh 4 or 5 inch lift of the toes. Very interesting but apparently it hurts! Why didn't I think of that? Duh. Eventually they found the best spot, then attached the electrodes, cuff and controller, and had him walk down the hall. Amazing. His foot lifted right up, and he walked a bit faster too.


They timed a walk unaided and then a walk with the device working. The tech said he thought another device on the other leg might help. So back to poking around, then fitting the second device and off he went. It did make a difference. Each device can be fine tuned with the stimulation lasting longer or shorter, the intensity adjusted, the start position can vary, etc. So they spent some time experimenting with all that and of course walks down the hall to test it all. He was exhausted before they were done and he paid for it the rest of the day. Sometime during the next day things let up for him but the muscles still seem affected. The device seems like it can work wonders but then there is still the balance problem. And the shocks bring on the exhaustion which causes falls, which is one of the things the device is helping to avoid! Stop the merry-go-round, it's time to get off!

It really is an ingenious idea and must work wonders for some people. We'll see if it's a viable option for Scott.

"New MS treatment" or "What's the worst that could happen?"

There's been new research and promising results in the search for a cure for Multiple Sclerosis. Injecting a patient with their own stem cells seems to bring incredible results. This brings hope for many MS people.


http://www.cbsnews.com/stories/2009/02/10/earlyshow/main4789551.shtml


So that was the first promising trial. Next a bigger trial. Then to the FDA for approval. Oh, that sounds like a very long time. I'm not a patient person. I suggested to Scott that we research it on the internet . . . such a wonderful tool . . . and do it ourselves . . . . what's the worst that could happen?



Yes, I'm kidding.

Thursday is...

. . . shot reaction / recovery day. Sometimes good, sometimes not so good. "Everyday is an adventure" as the MS magazine says in an attempt to encourage MSers. Hah!

. . . garbage day - we're allowed two big bags. I buy the biggest I can - contracters 55 gal bags - and fill them. I don't know how we accumulate so much garbage even though we recycle. We're still (after nearly a year) sorting through stuff from our move and narrowing down what we really need /want. We tend to buy online which means packaging stuff, not all of which can be recylced - what to you do with styrofoam?! And then there's the diapers and dog food cans. On top of everyday stuff I guess that's how the bags get so full.

. . . an anything day. It's between two work days so usually there are no kids involved in the day (boo hoo). Usually no going to Decorative. So it's always something different. Sometimes a "road trip" to shop, or a project around the house, or do nothing "catch my breath, be lazy" day. Today I think we're going to try to put a carrier on the back of the van, we might head for a large grocery store, I'm going to try to get the last of the plants in the ground (scratch that - I am going to get the last of the plants in the ground (although I like Pat's thought that we spend money on cut flowers to enjoy and they only last a week - these have been around a lot longer!)), I'm going to the quilt shop to talk about taking care of their blog (I may have to buy some fabric while I'm there - it just calls out to me), and house cleaning should probably be a part of the day (but it won't be as big a part of the day as it should). So today Thursday will be full - a good day. Oh and I have some sewing to do, a package to send to Justin, a package to pick up, some stitches to pull out, some branches to clean up . . .