Friday, October 5, 2012

Treatment Update

Today I had my treatments with Dr. Schwartz. As he was preparing the Botox, my husband and I asked him a bunch of questions about Dystonia. Bottom's a disease that's not going away any time in the near future. I asked Dr. Schwartz about articles that Ive read on how certain foods and vitamins may help Dystonia, and he just smiled. Im not going to lie, but my heart sank a little. I was hoping he would say, "Yes, take 4 tablespoons of coconut oil and you're Dystonia will disappear!" lol My change in diet and all the exercise I do is great for my overall health, so I'm going to continue what I've started.

I'll be back in his office in three months to do this allllllllllll over again! :)

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Unknown said...

I just stumbled upon your blog through Google Alerts. My name is Patrick and I'm currently on the Board of Directors for an organization whose sole purpose is to raise money for awareness and a cure to Dystonia (DYT1). The charity is named Tyler's Hope for a Dystonia Cure. Our website is and we have been around since 2005 when Tyler Staab was diagnosed with DYT1 Dystonia. His sister was diagnosed shortly after, but we've created a great network throught the Southeast and rest of the country. We work very closely with the University of Florida and Shands Hospital to create a world renowned research lab and clinical center (as part of the Movement Disorder Center at UF/Shands). I just wanted to reach out as I know the Staab family continues to battle Dystonia on a regular basis. Please take a look at our website.

Patrick (

Unknown said...

Take a look at this video. These are the doctors at UF who have worked with the Staab family regularly.

Dream Mom said...

My son is severely disabled and was born with a gene mutation that causes dystonia. I've been using Now Foods Organic Virgin Coconut Oil for a while now and also have him on a mostly organic blenderized diet (via the gtube) and his dystonia is markedly improved. He is 21 now and it's the best it's ever been. He can now move his arm and is able to relax and extend it to put his arm in his coat and is trying to move it on his own. The difference is remarkable. I have found there is a wide variance between brands of organic coconut oil. I think Now Foods is the best. I tried 365 Organic Coconut Oil and Nutiva Coconut Oil and I didn't think they worked at all. E-mail me if you want more information.

Anonymous said...

I credit my triumph over this condition to Allah (swt) the Lord of the Worlds. I am Muslim.

I was diagnosed with cervical dystonia 17 years ago. I'm now 58 years old. Alhamdulillah, my condition is no worse now than it was 17 years ago. I truly believe that had I listened only to "doctors" I would be a lot worse off while taking 12 or so meds. Initially, I was prescribed artane and klonopin along with an every 90 day cycle of botox injections. I didn't care for the artane and klonopin (anti Parkinson's medications)at all. I vowed to wean myself off both meds within a year. I accomplished this by finding a practitioner of Chinese medicine. He prescribed herbal concoctions that had to be boiled and drunk each day. He also administered acupuncture. As a result, the residual pain subsided and the severe and chronic pain never returned. Alhamdulillah.

Sadly, know one ever talks about the spiritual aspect of illness. As a Muslim, I believe this is a great oversight. (Or, perhaps it's self-delusion --pretending to be autonomous.) Muslims believe nothing befalls us without the decree of our Maker. And so, establishing and maintaining ongoing contact with Him is critical-- especially when ill, but preferably before. Muslims maintain this contact by making(a minimum) of 5 prayers each day. Reading Al Quran is also absolutely vital to restoring optimum health along with banning fowl language and unlawful food and drink from the tongue. Bathing (and tub soaks), walking outdoors in the sunshine and breezy weather is invigorating and therapeutic.

I've found that coconut oil does a lot for aches and pains in general and the neurology specifically. A good food based supplement can also be helpful. I can personally vouch for the Rainbow Light products. I've taken them for over 20 years now. Eating organic produce (as much as your budget will allow-- or grow your own--before it's outlawed) and limiting meat intake can also help.

Allah (swt) is the Author of all good. May He guide you as only He can.

*Alhamdulillah means all praise is for Allah.

dleake said...

I know it's been a while since you've commented on my blog...but I was just going through and reading some amazing helpful comments, and I stumbled across yours. Thanks for sharing...especially about spirituality and the coconut oil.