The Patient Turned Scientist: Making my life-saving medication in my kitchen

Jasmine Sturr jasminesturr@gmail.com

Abstract

My name is Jasmine Sturr. I am 22 years old, and I have had Juvenile Onset Parkinson’s Disease since I was 14. My natural response to running out of options has been to hit the books. By 15, I was desperate to figure out why I was losing motor function. I started in the wrong places, googling my symptoms for hours. As I grew older my abilities to research grew with me. I found my passion for chemistry. It gave me something to hang on to, something to explain the world around me at a point in life when I was desperate for things to make sense. It also taught me how to read and find what I was looking for. Soon I went from google searches to scientific journals, developing a scientific and medical vocabulary one article at a time. When I was 18, my doctor and I decided it would be worth trying Levodopa.

At a point when I was severely disabled. Medication gave my body back the ability to move, to keep up with me again. Treatment did not last forever and by 20, Deep Brain Stimulation (DBS) surgery was my only option. While this surgery saved my life and with Ldopa is the only reason I can move well today, it could not stop my digestive tract paralysis, a complication of my PD. At the end of 2015 I had a feeding tube placed in my small intestine for meds, food, and water which I could no longer tolerate orally. Soon I was unable to tube feed because my peristalsis was so slow. I had a central line placed and began TPN, an IV form of nutrition which is a last resort and my only option to stay nourished.

Every four hours I crushed my medication and flushed it down my feeding tube. This is very painful for me. There is a treatment on the market where they put tubes in people and give them a continuous dose of Ldopa, which my insurance would not pay for it.

As usual, I hit the books. I wanted to know what was used to suspend the insoluble Ldopa into solution. I came up with the idea to use food ingredients. I decided to try out a natural phospholipid. A little math and a $15 bottle of lecithin later, I had an emulsified solution of 1000 mg Ldopa. I programmed my feeding tube pump to deliver my medication to me throughout the day. I saw a remarkable improvement in my symptoms from this treatment made in my kitchen.
My next challenge was knowing that when I declined again, which is inevitable with a progressive neurological disease, I was out of options. I was functioning well on the highest tolerable dose. Turning to the books once again, I read a paper about the use of nicotine on monkeys to control the Ldopa induced dyskinesia. Deciding I could use vapor to get a small and controlled dosage of nicotine. I have been able to inhale less than 6mg of nicotine a day and successfully stop my dyskinesias. With this treatment, I know I can increase my dose when the time comes.

By researching and experimenting I have secured my future, and have drastically improved my quality of life.
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