Participant testimonial: Interview with Joseph Hammes
How did you hear about the study?
I received an invitation to join the study by post one day addressed to me. I thought this was a little unusual, so I opened the letter, read the first page of the invitation and got the basic understanding that it was a sleep disorder study. I found it to be quite interesting because for several years I have been having some unusual sleep patterns, such as very lively dreams, verbal outbursts, forceful kicking and even grabbing things (like my wife's hair!).
It became even more interesting when I answered ‘yes’ to the overwhelming majority of questions, some of which addressed other issues from which I suffered, such as a complete loss of the ability to smell. I completed the questionnaire online and sent it back, not really expecting any thing to happen, other than perhaps a brief phone call.
How was your experience at the sleep lab?
The sleep lab was quite the experience! First, they brought into my room a small box with many plug-in ports. I did not think they would use all the ports, but I was mistaken. It must have taken them 45 minutes to connect all the wires and sensors and the entire time I wondered how I would be able to sleep with all of this. However, once they were finished attaching everything, it was actually not that difficult to sleep.
I began to wonder if I would be able to provide the doctors with some valuable information, maybe some animated dreams or verbal outbursts. But, true to form, I had a couple of good outbursts and even woke myself up in the process.
How did the result of the polysomnography impact your life?
The test itself really did not make an impact on my life, but the larger picture of potential, future health-related issues along with the possibility that I could eventually develop Parkinson's disease most definitely drove me to seek the advice of the RBD study team and to make myself available for further studies.
Have you contacted a doctor to get treatment after the polysomnography result?
Yes, absolutely! After learning more about Parkinson's and the RBD study, I contacted the study centre at once and made an appointment for further consultation. It was explained to me that I possessed the unique set of characteristics that doctors and scientists have determined could likely lead to Parkinson's disease. Because I do not exhibit any outward signs of the disease, I decided to participate in studies that the doctors and scientists need to further understand the process and progress of the disease.
How is the treatment going?
Although I have yet to show any signs Parkinson's per se, I did seek treatment for what has been a year-long sleep disorder. This disorder was manifested through highly animated dreams, vocal outbursts during sleep, kicking, grabbing, and occasionally, falling out of bed while acting out my dreams. All of these things affected my ability to get a good night's sleep.
I raised this issue with my doctor, and he prescribed a very light medication to see if it might help. The results were astonishing! Since then, I have been having fewer outbursts and at least 7 hours of sleep every night. It is an amazing difference!