Life is all about quality Not quantity!
My husband’s first words to me upon arriving home this evening ‘was were you able to go see doctor?’ Before I had a chance to utter a word, he responded: ‘you canceled again did you not?’
I nodded, yes. ‘I was afraid of that. I was thinking all day about what the doctor had to say about your condition hoping you had been able to keep the appointment this time around’.
I am sure that this is a common scenario that gets played over and over again and again across the country and the world when living with a chronic illness; particularly if there is no one to help get you to the doctor’s office as it is my case. It is extremely frustrating to need to be evaluated by a healthcare provider yet being unable to get dressed or even show up because of physical impairments. I worry that I will not be given appointments again if I cancel more than I keep; after all other patients who CAN show up would most likely be given preference. As a doctor I know that that’s what I would do. Another concern, at least here in this country is being charged a fee in many specialists office if there is a cancellation less than 24 hours which I understand as a professional but as a patient with daily fluctuations this is hard to deal with adding yet another stressor.
I am beginning to value the idea of walking’s at the doctor’s office even more now; something I always made room for in my practice. Unfortunately, aside from primary care clinics this practice is extremely uncommon in specialty practices. In other countries the wait to see a specialist may take months making it more difficult to get care if you miss an appointment. Hence the urgent need for telemedicine to begin branching out to meet the needs of a growing population of chronically ill neurological patients who are also getting older. As I get older and sicker, I really think I should be moving closer to the city where I can have easy access to my doctors; plus in some cities here in the States they are beginning to introduce the service of UBERHEALTH for those patients who cannot otherwise get to their doctor.
Of course, this brought me to a realization that we need to improve our assessment of PD patients beyond the UPDRS (unified parkinson’s disease rating scale) and Hoehn & Yahr scales. Sure the motor symptoms are a big component of our disease and are ever present. However, the non -motor issues and the emotional burden placed on by our disease is something we as physicians do not really take much into account. For instance of medication, I might actually be considered normal on my UPDRS or stage 1 with H&Y scale making someone think there is no disability or need to change treatment. Yet, if you ask my friends and family what the impact of my disease is on my life I guarantee it won’t be trivial.
We don’t talk enough about how often we are missing things in our daily life!
We as physicians need to start asking open ended questions like in the past month have you not only missed work due to illness but did you miss out in other good things like spending time with friends, husband family? Were you able to do not only the things you are responsible for but what about the things that bring you joy like going shopping or to the movies, etc.?
I think perhaps is time we begin using Quality of life scales to personalize treatment and adjust treatment plan. I think getting people on right regimen makes a huge impact on quality of life to make living with Parkinson’s much more manageable
For instance, someone may say they only experience 1-2 hours off (counting only severe offs yet not able to do normal things like keeping appointments); this person would require different treatments than someone else who can do everything they want when they want except for those two hours. We need to realize that although motor symptoms can be extremely tough and an obvious problem to contend with, it is the emotional burden which runs deeper than imagined for most of us and can impact the quality of life to a greater extent than the motor symptoms. Many people with chronic illnesses like Parkinson’s disease become withdrawn, isolated and avoid social settings for fear of what might happen in if suddenly they go off, become dizzy, nauseated, off balanced, fall, faint, lose control of bladder etc.
So besides talking to our physicians about the REAL needs, fears and limitations. How often did we self medicate? How often did we canceled or missed out on social activities? Besides getting our medications adjusted to help with the causes of why we are missing out on things (i.e. side effects of medications, dyskenesias, non-motor symptoms, generalized fatigue, etc.) we should also ask for counseling or behavioral therapy to help us and our families deal with and cope with our complex life style which often takes back seat to having and dealing with PD in its multifaceted presentation.
Keep a diary of the things you missed or had to cancel because of PD to show your doctor so he/she can discuss treatment options to get you feeling better and enjoying life anew!!
all rights reserved By Maria De Leon MD