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.
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.