Saturday, January 31, 2009

Busy Bubbie

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I know I haven't posted in quite some time.

The Bubbie has been busy with a capital B.
I had company before Christmas, and then had all of Bubbie's babies here for the first 2 plus weeks of January. We all had a great time, and being the Bubbie that I am, I have hundreds of pictures to prove it.

Lucky for you I won't bore you with all the pictures of adorable grandchildren
I took.
In all of that fun and chaos, I managed to make and break a few New Year's resolutions. The one that I have kept was to continue painting . Last year I vowed to get off my whiney MS arse (with some prodding and encouragement from a friend or two) and get back in the game. It WAS my game for most of my life. I was a painter, I worked professionally. It was what I did, and to a degree, who I was.
Now after a year of painting with watercolor on paper, I vowed to continue, but this time to push the envelope a little farther and add another challenge. Now that I have had some of the confidence return that had left me flat after not working for 5 years, I am going to pursue painting oils on canvas again.

This is my first attempt. It's a local beach. I'm pretty happy with it for a first attempt. It was done with a palette knife and thick paint. I'm studying painting the "temperature" of color.

I have to say that getting back to what I enjoy doing has done more for me physically and mentally than any drug that I have tried for my Multiple Sclerosis. It keeps me occupied. It's a diversion from the focus I've had for too long on my disease and it's symptoms. I'm not saying that I don't have my challenges. Optic neuritis has been my biggest one lately. I'm learning to deal and compensate for the way I perceive color. Double vision, vision and a half, vision and a quarter...I hate it when that happens.
It might make for some pretty trippy paintings though.

Wednesday, January 7, 2009

In the Pipeline

There are many new drug therapies for Multiple Sclerosis in clinical trials. I read up on them when they have come across my Google Reader. I've given up on the ones that are already approved. They either didn't work for me or I found that my quality of life from the side effects was too much to trade for a promise of slowing my disease's progression.

I did begin two months ago on 4-AP. It appealed to me as it promises not to cure or slow disease progression, it works to help damaged nerves conduct better. It also is not in the hands of Big Pharma...yet. You have to get a compounding pharmacist to make it for you. I had to do some research. Lisa at Brass and Ivory helped quite a bit. Thanks Lisa.

Well, I have enough evidence of nerve damage. Walking has been my major challenge. I could walk with a cane on good days, and a walker/dog stroller (another story) on particularly (or peculiar) bad days. Walking was my major cause of exhaustion. Just how much does a human adult leg weigh anyway? It felt like I was dragging around one hundred pounds!

I have to admit I was skeptical that the 4-AP would do anything. I felt almost immediate results that I still was slow to give the drug credit for. I thought that maybe it was the cooler weather. The Florida temps dropped to a frigid 50 degrees a few nights. (sorry Seattle) Or I thought that maybe I just hit one of those elusive remittance periods that I have heard so much about in RRMS. But now over 2 months into it, I'm becoming convinced that it works. Even neighbors have commented on how well I have been walking. I still carry my cane, but rarely need it.

I read this in the MS Foundation newsletter today. Apparently Acorda Therapeutics has been doing trials on 4-AP that they have made in a slow release patentable formula.

Read the rest of the article and see what else is in the works. It gives me hope.

In the December 2008 National MS News :

• Walking speed improved significantly in a clinical trial of 240 people with all types of MS taking Fampridine-SR (MS-F204, Acorda Therapeutics, Inc.) compared with those taking inactive placebo. Fampridine-SR is a sustained-release formula of 4-aminopyridine, which temporarily enhances nerve signaling. The company is planning to file in 2009 for approval of this drug to treat mobility issues in MS.