IHow Parkinson’s Progresses
I’ve seen three different neurologists so far including one stated to be the most knowledgeable about Parkinson’s in this area. All told me I have stage 1 and now stage 2 Parkinson’s. What does that mean? It means they were out of date by more than 40 years because they were referencing the Hoehn and Yahr scale that was published in 1967 and is still widely used even though supplanted by the ADL and UPDRS scales many years ago.
There are three main measuring tools: the old Hoehn and Yahr which assigns stages to PD and is still used by many doctors because they only have to observe you for a few minutes to administer it, the Schwab and England Activities of Daily Living (ADL) which is a scale that focuses on how well you perform daily tasks, and the modified Unified Parkinson Disease Rating Scale (MDS-UPDRS) which is administered by interview and is the most widely accepted because it is the most comprehensive and evaluates both motor and non motor aspects of PD including emotional health, mental sharpness, and physical ability.
I pay no attention to the scales in judging how advanced or bad my PD is. Their value is that they lay out a “typical” progression to the disease which allows me to see what I don’t look forward to and prepare for it. What is important is are you able to take care of yourself and how you feel. Are you getting out of bed in the morning, can you manage by yourself, are you socially, intellectually, and physically engaged, are you happy.
Scale 1. Hoehn and Yahr defines five stages of PD and was later modified to add two more stages. It is intended to reflect the degree of motor impairment and disability and progression of the disease. It measures only the observable physical symptoms of PD and tries to show how PD progresses.
Stage 1. Mild non disabling symptoms on one side of body only.
Stage 2. Symptoms on both sides of body. Minimum disability. Posture and gait affected.
Stage 3. Noticeable slowing of body movements. Problems with balance while walking or standing.
Stage 4. Severe symptoms, limited ability to walk, rigidity, cannot live alone.
Stage 5. Requires constant nursing care. Cannot stand or walk or care for self.
Problems with H&Y and the following ADL scale are that PD affects everyone differently, lack of balance may appear before bilateral symptoms, not everyone gets all the symptoms and both tools look at only the physical aspects of PD. Neither takes into account a person’s mental or emotional state.
Scale 2. The Schwab and England Activities of Daily Living (ADL) focuses on a person’s functionality and on their ability to perform the necessary daily tasks of caring for themselves. Does not examine the emotional or cognitive effects of PD. It is administered by interview and observation of the patient and like H&Y is based on how PD progresses.
There are six basic ADLs: eating, bathing, dressing, toileting, walking and continence.
SCHWAB AND ENGLAND ACTIVITIES OF DAILY LIVING SCALE
100% = Completely independent. Able to do all chores without slowness, difficulty or impairment. Essentially normal. Unaware of any difficulty.
90% = Completely independent. Able to do all chores with some degree of slowness, difficulty and impairment. Might take twice as long. Beginning to be aware of difficulty.
80% = Completely independent in most chores. Takes twice as long. Conscious of difficulty and slowness.
70% = Not completely independent. More difficulty with some chores. Three to four times as long in some. Must spend a large part of the day with chores.
60% = Some dependency. Can do most chores, but exceedingly slowly and with much effort.
50% = More dependent. Help with half, slower. Difficulty with everything.
40% = Very dependent. Can assist with all chores, but few alone.
30% = With effort, now and then does a few chores alone or begins alone. Much help needed.
20% = Nothing alone. Can be help slightly with some chores. Severe invalid.
10% = Totally dependent, helpless. Complete invalid.
0% = Vegetative. Swallowing, bladder and bowel functions are not functioning. Bedridden.
Scale 3. MDS-UPDRS is the most comprehensive and includes aspects of Hoehn and Yahr stages and Schwab and England and fully recognizes that PD affects people emotionally and mentally as well as physically. It is administered with the active participation of the PWP.
The United Parkinson’s Disease Rating Scale (UPDRS) was considered the gold standard of PD assessment until it was updated by the Movement Disorder Society UPDRS (MDS-UPDRS) in 2007 which took into account a better scientific understanding of PD and input from PWP and caregivers. The test is devised so it can be self administered and is available on line but permission is needed to reproduce it so I haven’t. It is worth taking. I took it on my own and learned from it. Answering the questions gave me insight into my PD even without scoring the answers. A problem with both the UPDRS and ADL is that they are not specific to Parkinson’s and do not differentiate between PD and normal aging. An elderly friend who doesn’t have PD took them and scored almost as high as I did. I do recommend taking it though. We often aren’t completely honest when talking to doctors. I was more accurate and honest when I self administered it at home.
Then there is the widely used PDQ-39 which addresses quality of life issues not how Parkinson’s progresses. The 39 questions are used to determine such areas as mobility, activities of daily living, emotional well being, stigma, social support, cognitive impairment, communication, and body discomfort. Like the other tests, the PDQ-39 is available on the web.
A last caution. There are many PD rating tools. These are the three most commonly used. Another big problem with all the tests is how to get an accurate reading because the medicines we take mask symptoms, affect our mood and distort our functional ability. None of the tests include information as to how quickly your PD is progressing so the thing to do is take a snapshot of a test every six months and compare the changes. You are not a test so do not take the tests too seriously. You know where you are at. Happy testing.
