A Crazy Dream
The other night I woke up from a dream. It took me a few moments to recognize that I was awake
because in the actual dream, I woke up with my wife on my left and a
tiger snuggling with me on the right. He followed me though the house
(Kate's family’s country house in upstate NY). He was very affectionate, and we were not afraid. Our reaction was, "Hmmm, this is odd, I guess we have a tiger."
I decided to look up interpretations of tiger dreams. This is the one that seemed most relevant: "Dreaming about a friendly tiger: If you dreamed about a tiger which acted friendly towards you or others, such dream might indicate some situation which puts an end to your fears."
I am in a clinical trial and on May 6th, I get randomized. Maybe, subconsciously, I really think that this new treatment will help me. I am considering the dream to be a very good omen.
No Tiger King jokes please! I never watched it and strongly believe that wild animals should not be kept as pets.
The Clinical Trial
Yes, I have been in the study for months and I am finally getting the treatment! This is probably one of the reasons that these studies have so much attrition. What you need to be in a clinical study is patience! In most cases, the process will be very long and require you to be very flexible with your schedule. It can be taxing spending 6 to 8 hours at a doctor’s office. You will need the support of family, friends, and coworkers as well as good sense of humor.
This Thursday, April 29th, will be my 6th visit to the study site. They have taken samples (blood and urine) and they will do so again this week. I took the Suicidal Ideation test, and I will have to take it again soon. If you have never taken this before, it is a testing instrument with about 30 questions, which are all some version of, "Do you want to kill yourself?” Apparently, this screening instrument is used in many clinical studies.
I have also been trained on how to use the pump which delivers the medication, and tested to see if I could do it correctly. I have been warned that I will be tested at least one additional time before receiving the medication. I have filled out multiple release forms and financial paperwork for reimbursement. To be honest, I cannot really recall all of the forms that I filled out and signed.
May 6 is the big day! I will either get the medication or the placebo. If I get the placebo, they will test the actual medication on me for 12 weeks after the study (open label phase). Either way, if the medication works for me, I will receive it along with the pump and all the necessary supplies for the next two years.
I am not thrilled about wearing a pump 24 hours a day (except for an hour or two to bathe and exercise) for the rest of my life, but anything is better than taking medication that does not work half the time. Some day in the future they may come up with a better treatment, or even a cure. I may not have to wear it forever.
You can watch the videos of patients who have used the pump here. To be clear, these patients are using a very different delivery method from the one that I will receive. They have had a surgery, in which a port was placed directly into their small intestine. The biggest problem with this delivery method, as you can probably imagine, is the risk of infection.
I will be receiving the medication sub-dermally (under the skin). So, while the videos of the patients at the link above seem very promising, bordering on miraculous, different delivery methods have been known to provide very different results. The results from phase 2 of this study have been very promising, and I remain hopeful.
I want to encourage People with Parkinson’s Disease to get involved in clinical trials (if you can). We cannot just wish for a better treatment or a cure, we have to work for it! Hope is a verb!
Thanks for reading,
John
