Audio snippets available
Name: Sharon
She is one of the Nurses that speaks to patients with Parkinson’s and answer any questions they may have. I was unable to get her contact number, however I do have the helpline number which I called during the interview: 1-800-473-4636
Transcript
Question 1: “So just a quick background on what my class project entails: We have to come up with some technology, either software or hardware that aims to allow for more inclusion for a specific salient identity. That could be age, gender, physical ability, or even class. I decided to pursue physical ability and specifically, those that have movement disorders. From the research I've done, I’ve come to understand that it is common for patients with Parkinson’s to have tremors while in a resting position. So before I ask you about inclusiveness, can you shed more light on common symptoms and the different extents that may appear?”
Link to audio:
https://drive.google.com/open?id=10eaaWyd61Ch_CStXX_coQfHi9uKbN5JG
Answer: “My name is Sharon, and I am one of the nurses on the helpline. There are very many Parkinson's symptoms. So tremor can be one for some people. I think that approximately 60% of people with Parkinson’s have tremor. It’s not necessarily in the hand because they can also have tremor in the head, neck, leg, feet. But hand tremor is one of the most disabling for obvious reasons.”
Question 2: “In your experience in dealing with patients that have Parkinson's or other movement disorders, what challenges have you noticed in these patients when they have to interact with technology? This can be a phone, computer, or even a vacuum cleaner. Anything that would involve the hands really.”
Link to audio:
https://drive.google.com/open?id=1-n9svb-PNLTodV-O53Mp2zCRsLowgIM9
Answer: “I can tell you that the people with Parkinson’s that call us on this Parkinson's helpline. I think the thing that bothers people with disabling… So many people have tremors and the medication improves the tremors enough that they’re able to function alright. The people that I think we described as ‘most disabling’ are people that have difficulty eating. That’s like probably their biggest concern. They have trouble getting food off the plate and into their mouths without spilling it. It literally affects their nutrition, and it's also socially a terrible stigma. We have had phone calls from people who have trouble pushing the buttons on a telephone. So in those instances they are looking for voice assistance or bigger buttons. We also have people who have trouble typing and look for assistive software for typing or bigger keyboards. And maybe even more than keyboards people have talked about finding the right mouse it difficult.”
Question 3: "To address some of these problems that you have mentioned, I was considering technology that would essentially remove the need for hands to take in user input, specifically for mobile devices. To accommodate for the percentage of Parkinson's patients that also have slurred speech in addition to the tremors, or other people with diseases that cause immobility of the mouth, I was thinking of having eye tracking mechanisms attached to the phones. Can you give me more details on eye functionality of patients with Parkinson's because I haven't come across anything in my research."
Link to audio:
https://drive.google.com/open?id=1k6CQgkt8mVUQhPxwaV_5lFKFK75ehvUg
Answer: "This is not as common a problem as tremor. But some people with Parkinson's also have trouble with eye movement. Sometimes the Parkinson's can affect the muscles of their eyes. Now it's not as common, if tremor is 60 to 65%, ocular problems may be more like 10%. I've also been reading recently that ocular and optical problems for people with Parkinson's are probably under diagnosed and underappreciated."