chronic illness, parkinson's disease, Parkinson's Health

Update on the Role Technology Plays in PD: By Dr. De Leon

This past weekend I had the pleasure of attending the 200 years after Parkinson’s symposium hosted by HAPS. the staff did a superb job with nearly 400 attendants and a line of extraordinary speakers.

Over the next few blogs i will discuss some of the salient points that were brought up at this meeting. one of the most interesting of topics was the question of what, how, and when does technology help in the daily care and treatment of PD patients?

I know this was a big topic at the world Parkinson’s congress in Portland this past year and continues to plague the minds of both patients and clinicians as well as scientists-  how can we best use this technology already available to help us live better lives?

Although, we live in a rapidly growing technological world – not all people are technologically savvy or able to have access to these wearable devices and other technology. Secondly, even though this type of acquisition of data can lead to more robust numbers, we are not entirely sure how to use it. Moreover, the legal aspects have not been defined. Who owns the data? the doctor? the patient? the creator of the apps or technology? not so simple. But, there is a whole new field that could potentially emerge relating to this.

In my case, the legality is still a big hurtle to over come never mind how to store data so that is secure and get reimbursed for your time. Here in Texas, telemedicine was finally approved for use in various fields which opens up opportunities for people like me who have disabilities but are still cognitively able to be of service to society but navigating the pitfalls and uncertainties of how to provide care from home to a patient also at home is still not clearly defined by the laws. So I wait patiently for my time to be useful once more as a MDS.  especially since it is speculated that > 40% of those PD patients who have medicare DO NOT receive care from a neurologist. Thus increasing the morbidity, mortality and decreasing quality of life and independence.

In the meantime, we must find ways to make use of the technology available to fill in the gaps that currently exist in diagnosing and treating PD patients. We all know that although MDS can have a very high rate of accuracy in diagnosis is not 100 % proof. We do make mistakes and most usually come about from experience and knowledge base of individual making diagnosis. further, we all know that for what ever reason, happens to me all the time, mostly because of stress and anxiety which revs up the dopamine production; we tend to look much better at doctor’s office than at home. Thus, giving sometimes an erroneous picture of our illness. we may supplement our current tools through the use of TOMS- technology based objective measures.

There are 2 forms of TOMS:- (e.g. sleep studies, cardiac monitoring)

1.clinical tests conducted by physicians in standardized environments to objectively measure specific behaviors/ symptoms

2. Self- administered tests- using devices to detect and monitor specific functions or over all abilities in daily life.

We all have smartphones, watches, apps, table based tasks, other body sensors which can be used to acquire data.

However, it was discovered that 32% of users stop wearing wearable devices after 6 months and 50% after a year. Novelty wears off.

26% of apps are used only once, 74% ARE NOT USED MORE than 10 times.

plus, most of the devices only measure motor symptoms- leaving  still a huge problem in dealing with non- motor issues – which in my experience are the ones that cause the greatest interference in quality of life and lead to unfavorable life style changes.

Some on going initiatives to evaluate some of these toms are…

  1. At Baylor college of medicine under Dr. Jankovic direction, there is an ongoing study using a wrist wearable device (Parkinson’s kinetigraph (PKG)– to monitor medication response- you wear for 7 days and you are required to click a button when you take medication. this will generate a relevant report upon which actions can be made by doctor.
  2. Another one is the  EU project CUPID-  closed loop system  for personalized at home rehabilitation for PD patients. their objective is to develop clinical guidelines for developing individual customized rehabilitation programs using technology
  3.  Parkinson’s voice initiative for diagnosing PD – many of you probably have heard or participated in this already- where you simply call in and speak over the phone and make certain vocal sound weather you have pd or not… the crux is to enter enough data from all ages, pd and non pd, both men and women to develop an algorithm that would help detect the difference between a healthy person and one with pd.
  4. Also have the mPower smartphone App for PD ( introduced in 2015 by Apple) – ongoing  looking at tasks like motor initiation, balance and gait, hypohonia and memory. some data like tapping two fingers before and after are being evaluated in those in Sure PD3 ( study of urate elevation phase 3).
  5. another one that everyone can participate in from the comfort of their home is the Fox Insight- this is a questionnaire of virtual visits every 90 days – this is an online longitudinal observational clinical study to generate BIG data – however since findings are not objective the outcome is still uncertain – However- the tools and data within allow the participants to learn more about their illness and how to manage there care best.
  6. NPF Parkinson’s Central- can help provide information regarding disease and treatment and connect you to near by specialist.
  7. 9Zest Parkinson’s therapy app- once you input the required fields it will generate personalized exercise regimen with accompanying videos.
  8. Beats Medical- this app provides auditory cues to help with walking ( $300/year after 2 weeks free trial).
  9. Google glass– this was designed to help with gait and freezing via auditory and visual cues. however, when they put in the virtual reality mode patients did not do well getting patients CONFUSED!
  10. EMMA watch – help with writing via vibratory feedback

In order to be successful these devices first must be minimally intrusive in our lives. these have the potential to radically change the care of PD in the future but several hurtles still have to be over come such as standardizing these technologies, as well as assessing their true efficacy, and validity is not only imperative if they are to be of any value but also remains the biggest challenge to date; particularly as more and more devices and apps become available for patients to use.

If you are participating on any of these studies or have a device or app that you use regularly, i would love to hear from you. I am thinking of calling Dr. Jankovic about the wrist device and are already participating in Fox insight and have participated over the last couple of years in other similar endeavors of acquiring massive data longitudinally. Perhaps some true patterns can  be identified which can lead to new treatment modalities to improve the life of every individual living with PD.

 

@August2017 All Rights reserved Maria De Leon MD

 

 

 

 

 

chronic illness, parkinson's disease, Parkinson's Health

Role of Technology in PD Management – Hot topic #2 at wpc2016-by Dr. De Leon

In the last 2 and a half months, I have spent an inordinate amount of time visiting doctors to get my situation resolved and return to baseline. What I have realized is that symptoms and state fluctuate so much within a couple of days that unless we get seen immediately at time of “feeling bad” we as physicians can miss out on the correct diagnosis completely. This of course is true for issues that arise in the context of a chronic illness, where minor insults such as UTI’s (urine infections), cardiac arrhythmias, electrolyte abnormalities, and even problems induced by sleep deprivation or dehydration can cause sudden rapid changes and even return to normal state in some cases without treatment.

For instance in the course of my last 6 weeks or so, I had episodes where I felt like I was dying with all sorts of neurological and medical symptoms and by the time I was seen days or weeks down the road that particular symptom had subsided either permanently or temporarily usually due to some action I had taken to resolve matter. For all of us who live with Parkinson’s disease either as a patient or caregiver, this sort of yo-yo-ing can be very frustrating because it delays correct diagnosis. On the other hand it can be just as frustrating for the physician to hear one set of complaints and examine a person in a different state. Needless to say, this type of interaction diminishes the results and validity of the patient evaluation at that given time.Image result for wearable devices

Of course, I am at an advantage especially when it comes to neurological illness; due to a greater expertise then most on the subject thus can help the physicians reach accurate diagnosis and treatment faster. However when it comes to other issues like arrhythmia’s if they don’t catch the problem at the doctor’s visit or short monitoring then it may take that much longer to diagnose a cardiac etiology for instance leading to greater discomfort and frustration on the part of the one suffering things like dizziness, lightheadedness and so on.

This has resulted in me thinking about gadgets, apparatus, and other technology which might be available to aid physicians particularly neurologist to figure out with greater certainty what is going on with a Parkinson’s patient at any given time. First, both doctors and patients agree that the use of smartphone’s in the treatment and care of patients is of great benefit to both sides alike.

Over the years, Medical technology has evolved from introducing doctors to new equipment to connecting patients and doctors thousands of miles away through telemedicine. It is not uncommon in today’s modern world for patients to hold video conferences with physicians to save time and money or connect to a specialist whom otherwise would not be accessible were not for this means of communication.

With a growing number of physicians using medical technology like mobile devices, they can now have access to a greater array of information– from drug information, research studies and novel treatments, patient history or records, and more – within mere seconds.

As with most things in life there are always pros and cons and risk benefit must always be weighed carefully on an individual basis.

Nevertheless, I will mention here the pros for having and using certain medical technologies such as wearable devices that will not only allow us to understand a particular patient on a more personal level allowing for greater personalized treatment but also help us understand a particular disease such as Parkinson’s as a whole. Recently, MJFox foundation partnered with Intel to investigate such technology in the care of PD patients. This type of wearable device in the form of a wrist watch for instance can help gather information regarding patient’s symptoms like severity of tremor, gait difficulty, etc. this type of device would be of much benefit to many whom like myself have tremors very sporadically which in fact my neurologist has never been able to catch at a visit only seen through my recordings. Boy, I would have given anything to have a device to record an unusual tremor never had before and lasted only but a few seconds twice. It was so unusual that an expert like me could not define. It was a cross between a rubral a.k.a. Holmes tremor (wing flapping tremor with characteristics of rest, action and postural tremors arising from midbrain lesions) and an isometric tremor (tremors brought on by holding heavy objects- heavy objects) but only in the right hand. I was so intrigued by the phenomena that I decided to do a literature search – I found only one mention in the literature of such bizarre occurrence in which it was described in detail but no explanation given as to cause, treatment or relation to other movement disorders.  I am officially intrigued and will eventually get to the bottom of it. (*can read more on article below). As you can imagined if I was surprised, if it occurred to any one of you and you tried to describe as best you could I am certain you would be met with much skepticism and might be even labeled psychogenic perhaps. But, if we could wear devices that would not interfere with our daily activities and show bizarre symptoms such as this, it would not only enhance our care but advance the science at a greater speed than at present.

At present, there are already a few free iPhone apps which can greatly enhance the life of PD patients and this is PD LIFE which serves to track “on” and “off” episodes. There is also Lift Stride. We also have shoes with lasers to aid in ambulation.

I believe that the field is wide open and primed for medical technology to play an integral role in the care of PD particularly if we can combine multiple parameters of evaluation at the same time such as monitoring cardiac, respiratory functions with other motor symptoms. This would help us understand the Parkinson’s disease in its totality as well as help us gather greater insight into other Parkinson’s plus illnesses.

Thus, I kindly ask all those working on medical technology to please take into consideration the problems and barriers those of us who have chronic illnesses like PD have to overcome each day in getting care from our physicians who are often miles away sometimes in another state or even country making it impossible or at minimum down right challenging (as if living with PD was not trying enough) to resolve issues quickly and accurately to improve our quality of life and that of our loved ones. This includes making accessible and affordable technology that can aid in everyday life such as exoskeleton legs.

Image result for images of portable exoskeleton