How often do you see a doctor? Once a month? Every week? Don’t include therapists of any kind in the count. I decided to look at my calendar since the beginning of this year. In the past 7 months, I have had more than 20 doctor’s appointments. The various therapy appointments add at least 2 more appointments a week. That is a lot of time just going to the doctors. Add in daily exercise and other PD issues, there is not always a lot of time for doing things that we enjoy.
When I went to see my Movement Disorders Specialist this morning, she asked how I was doing with the kneu app that tracks my tremor, sleep, and lots of other things. My response: I just don’t have the time to do it every day. For various reasons, I had really cut back on compliance and did not do many of the tasks required. She reminded me that the app, which is on my Apple Watch, does most of the work and reporting for me. She then proceeded to show me the information that she got from my watch. Apparently, I don’t need to find the 20 minutes a day to do the prescribed tasks with my phone because she still gets the information that she needs. There were graphs of off-times, dyskinesia, sleep, medication compliance, and more. I wish I had taken some pictures to show you. Maybe next time.
Kneu turns smartphones into clinical-grade monitors for Parkinson’s and dementia
If you have not heard of the app, it is because it is only available at a few medical centers, including Cedars-Sinai, where I see my MDs. According to their website, KNEU is backed by over a decade of Oxford research and FDA clearance. Kneu turns smartphones into clinical-grade monitors for Parkinson’s and dementia—helping patients feel more confident, easing clinician workload, and lifting pressure from healthcare systems.
Overall, I am doing quite well with managing my Parkinson’s, considering that I have been living with it for over 17 years. My biggest complaints are fatigue, low blood pressure, and some issues with my eyes. I had recently started taking a statin for cholesterol, and a couple of days ago, I began taking a new medication for low blood pressure. Many people with Parkinson’s have low blood pressure, which can cause dizziness and fainting that lead to falls. The last thing I need is another fall. She tweaked the doses of a few other meds and sent me on my way.
Sunday Mornings with Twitchy Woman
This coming Sunday, August 23, we’ll be joined by John Dean, MA, CCC-SLP, a speech-language pathologist who has worked exclusively in Parkinson’s since 2007.
Rather than focusing on a single topic, this session will be an informal, wide-ranging conversation—something of an “Ask Me Anything” about Parkinson’s.
John’s clinical expertise includes communication, swallowing, and cognition, but his work extends into many other areas of Parkinson’s care. He is involved in Parkinson’s research, including an ongoing EU-funded initiative; works extensively with technology and digital health tools; and, together with his wife, physiotherapist Josefa Domingos, provides online exercise and educational programs for people living with Parkinson’s.
John will have a few slides ready, but the real goal is conversation.
Bring your questions and help determine where the discussion goes.
Sunday, August 23 | 10 AM PT / 1 PM ET
Learn more about John’s work: johnmdean.com.
Have a great week!
