Defining Your Disorder: Quality of Life by the Numbers

“Ultimately the ability of a person to live a “normal” life may be impacted, and this tool is intended to better give a value to a “feeling” or sum of different conditions.”

ICPDDs affect the lives of patients according to its unique set of symptoms, and how those symptoms apply to each patient.  Pain may be a component, but also, so may fatigue, insomnia, mood alteration, memory, cognitive function, and more.  Ultimately the ability of a person to live a “normal” life may be impacted, and this tool is intended to better give a value to a “feeling” or sum of different conditions.  In my opinion, not enough attention is given to Quality of Life and Functional Capacity.  I’ve lived 11 years with the fallout of a severe neck injury, surgery, and IIH, and seen my ability to function vary from being able to almost be normal to barely being able to do laundry and shop for groceries.

This scale was developed to allow a patient to assign a 0-5 value to their impression of the sum of their Quality of Life and Functional Capacity.  Each of  these is described in the short instruction section below.  This Index is best used in a diary that 1) has regular entries 1 to 4 times a day (I use phone apps, of course), and 2) keeps track of a predetermined set of activities, medications, or condition that you notice or suspect to affect your specific condition, along with specific symptoms.  Note that you get to designate what you want to keep track of.  If you think the price of Bitcoin plays a role in your disorder, record it and chart it along with anything else you feel is important.  Better to start with a manageable number of things to record, usually no more than 5 well chosen factors that you know to be an issue in your particular condition, believe to be an issue based on research, or just want to keep track of.  Very important to record all of your factors in every entry so that any trends or connections associated with graphing your entries are noticeable and accurate.  Be prepared to invest at least two weeks before any hints of a connection are revealed, and a couple of months to confirm any possible relationships.

As an example: I routinely monitor my blood pressure, the barometric pressure, pain level (using an existing standardized scale such as found here), plus notes about any activity I feel is important, but it’s the numbers that make the connections: over time, plotting graphs of hard numbers may show relationships between symptoms and certain conditions.  In my case I was able to expose a direct relationship between barometric pressure and my symptoms of Intracranial Pressure, as well as some interesting trends in blood pressure metrics as well.  I’ve been at it since 2017 started, beginning with just checking the weather, adding barometric pressure, then blood pressure…it was a learning experience for me, and consequently took me a while before I saw any correlations.  In order to get you off to a quicker start, here are some recommendations for variables that you might begin with:

1)  Weight

2)  Blood Pressure/Pulse/MAP (Mean Arterial Pressure): I use and app called Blood Pressure Companion.  Enter your blood pressure and it calculates your MAP (average pressure in your arterial system during one heartbeat)

3)  Barometric Pressure: again, an app: Bar-O-Meter, uses a sensor in most smartphones to give the barometric pressure in your exact location.

4)  Ambient Temperature

5)  Pain Level according to the pain scale

6)  …and last but not least: the Quality of Life/Functional Capacity Index.

Other variables may be food such as caffeine, carbonated beverages, intake of certain medications – its up to you what you put in as long as you have the time to manage the diary well to make the effort bear as much information for you and your doctor as possible.  It is my sincere hope that this helps others better understand their disorder and to be able to communicate it as well as possible to their physicians.  Prayers for all, without further rambling, I give you the Official ShuntWhisperer Life Index:

 

QUALITY OF LIFE/FUNCTIONAL CAPACITY

COMFORT INDEX SCALE

ICPDD (Intracranial Pressure Dysregulation Disorder)

copyright 2018 ShuntWhisperer Media

 

 

Purpose of this Index: This index is intended to give a simple, standardized indication of any impact your disorder is having on your life.  A regular diary is kept recording vital signs and environmental factors, and this index is employed to give an indication of the your ability to perform the Basic and Necessary Activities your life requires or that you desire to perform.  Over time, it may become possible to determine factors that impact your disorder and make changes/improvements to your treatment approach.  It also helps physicians understand how your disorder is impacting you as an individual above and beyond the results of medical tests and examinations.  Ultimately the goal is that your data can be pooled with the data of other patients and used to guide improvements in the future treatment and management of your disorder.

“Quality of Life”: The single most important metric in a person’s life. Quality of Life varies between individuals and is defined as how good or bad you feel about how you are able to fulfill activities and ability to live out your life as independently as you desire.

“Functional Capacity” – the ability to perform activities and tasks, Basic or Pleasure, without assistance

“Basic Activities” – activities related to fulfilling your basic needs to live and maintain your living space.  These include but are not limited to: obtaining food/shopping; obtaining/maintaining clothing including washing, folding, and storing clothes, regular personal hygiene, and any other activity related to keeping yourself healthy, properly nourished, neatly clothed, clean, a sense of organization, and ability to maintain your living area (meet financial obligations, perform or pay for residence maintenance such as trash disposal, yardwork, housekeeping, and similar), and ability to avail yourself of ancillary services such as medical appointments for general health, dental, vision, and other similar services.  Basic Activities fall within a relatively common set of obligations, varying primarily by your individual living area (house vs. apartment vs. farm), your obligation towards any dependents (children, animals, gardening), and other factors of your personal lifestyle.

Pleasure Activites:  Activities that bring you enjoyment, pleasure, and relaxation and give you a sense of fulfillment, activities that your perform after you have completed your Basic Activities.  Pleasure Activities can include any of this very limited list of examples: physical activity and exercise (tai chi, workout at the gym, sexual activity), pursuit of a desired goal (writing a book, coding/programming) mechanical/artistic activity, visiting friends, taking vacations.  Pleasure activities are wide and varied and primarily depend on your own personal interests and desires – “The things that make you tick.”

 

Index Scale Description

0)  You feel no symptoms or affects that you relate to your disorder. You have your complete Functional Capacity, able to perform basic activities ranging from Necessary chores to pleasure activities; your Quality of Life is not affected or reduced.

1)  You begin to become aware of the symptoms that you relate to your disorder, but there is minimal to no impact on your Functional Capacity; Quality of life is not significantly affected.

2)  Your symptoms require intervention. Intervention may be in the form of medication, momentary periods of rest, or time taken to perform a therapeutic procedure.  Your Functional Capacity is impacted to a minimal degree; your Quality of Life is still very good but you begin to have to make choices about which activities, Necessary or Pleasure, are reduced or eliminated.

3)  Symptoms require both intervention along with periods of rest. Functional Capacity is reduced up to 25% of normal; Pleasure activities begin to be sacrificed in favor of therapeutic procedures and/or rest periods required to cope with symptoms.

4)  Symptoms require intervention along with significant periods of rest or bed rest in addition to therapeutic procedures. Functional activity is reduced by up to 50%; all pleasure activities are sacrificed due to lack of energy, physical limitations, and/or lack of interest.

5)  Symptoms require all possible interventions and bedrest.  Functional Capacity is reduced up to 100%.  Basic activities are significantly impacted and if improvement in Functional Capacity is not possible without prolonged periods of rest, advanced Intervention (may include doctor’s appointment or Emergency Department visit).

Note: in addition to recording a number from the list below in your diary, add a “+” if you feel your symptoms are related to high intracranial pressure, ““ if you feel the symptoms are related to low intracranial pressure (CSF overdrainage or cerebral underperfusion)*.  Symptoms of low ICP include lightheaded/emptyheaded feeling, a headache that is worse when standing and gets better when lying down, possibly sleepiness and lethargy.  Symptoms of high ICP include sensation of pressure inside the skull, increased vision disturbance, gait disturbance (difficulty walking).

*”overdrainage and underperfusion” are based on the Cerebrovascular Edema/Venous Outflow Insufficiency Theory of Intracranial Hypertension.  Underperfusion refers to a condition where blood flow to the brain is not sufficient to allow adequate Cerebrospinal Fluid (CSF) to keep up with normal absorption by the body and the additional losses through an unnatural CSF leak (this includes a shunt or leak from a lumbar puncture; CSF flow through the shunt is minimal.   Overdrainage  is excessive leakage  through a shunt pathway due to Cerebrovascular Edema as a result of Venous Outflow Insufficiency.   As brain tissue swells due to undrained blood backing up in brain vessels, areas containing CSF become pressurized, This includes the subarachnoid space and ventricles of the brain.  As CSF becomes pressurized by expanding brain tissue, it begins to flow heavily from a shunt system and may be very noticeable.  Either condition causes lower than necessary levels of CSF in the brain along with associated symptoms of lethargy/sleepiness/cognitive reduction.

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