Tuesday, October 11, 2011

Duchenne website

Here is a website that I recently discovered that has a lot of information regarding Duchenne.

Check it out! http://duchenneinfo.com/

Friday, October 7, 2011

Protandim



There is a supplement that I have heard about off and on since we started our DMD journey. It is called Protandim. From what I understand (which isn't much), Protandim is a supplement that you can take alongside the other vitamins and supplements we already take. It is supposed to reduce oxidative stress or neutralize the free-radicals that our bodies produce every day.

From www.Protandim.com:

Protandim provides you with thousands of times more antioxidant power than any food or conventional supplement.* In fact, you would need to consume the antioxidants found in 375 oranges or 87 glasses of red wine or about 120 vitamin C tablets (500mg) a day to neutralize the amount of free radicals your body produces every single day.

Antioxidants are something we should be consuming anyway, they are found in berries, beans and some other foods that are good for us. We cannot consume enough of these foods to get the same benefits as Protandim.

I have heard several testimonies regarding Protandim and Duchenne Muscular Dystrophy. If it can't hurt, and will possibly help, I am DEFINITELY going to give it a try. I ordered a one month supply and will be journaling what I observe in Ben's abilities.

His current abilities:
  1. He can walk, but gets tired;
  2. he can run, more of a waddle run
  3. gets sleepy in the early evenings and will sometimes take a nap
  4. scoots down the steps of our home
  5. walks up our steps on all four's
  6. walks up the 2 steps outside into our house holding his thigh
Just a few observations. Our shipment should be here next Tuesday, so his first dose will be Wednesday (clinic day!)
I am eager to get Dr. Flanigan's thoughts on this.

And just for fun...(and because he is so cute)

Thursday, October 6, 2011

CaringBridge

We have a CaringBridge page now. Will try to post updates more regularly both here and there too. We have clinic next week and will have an update for sure then. Right now things are the same, only noticing very small changes like scooting down the steps and his hands are beginning to 'claw'. At Occupational Therapy last week, Miss Francis suggested stretching his hands to prevent problems with this. She also said that maybe we could do more of his schoolwork on the computer instead of his workbooks. All in all, he is doing well :)

You can check out his CaringBridge page here.