Have you ever had one of those days where you just didn’t feel up to snuff? Even though you had taken your medication at the same time as usual, your stiffness and shakiness didn’t go away as quickly as you thought they should. Then, you had a good period with no stiffness and relatively few tremors. But, all too quickly, some new uncontrollable movements that you’ve recently developed started. It seems that ever since your doctor changed your medication, these new twisting movements have been happening all too often.

In the later stages of Parkinson disease, it’s not uncommon for people to have periods in which their medication doesn’t seem to be working properly - this is called “OFF time.” OFF time occurs when there is little or no effect of the drugs used to treat the symptoms of Parkinson disease. ON time happens when you have a good effect from antiparkinsonism drugs-you are able to move without stiffness and without too many tremors. A third phase within ON time is called ON time with dyskinesias. In Parkinson disease, dyskinesias are twisting or jerking movements that you can’t control.

This cycle from OFF to ON to ON with dyskinesia may happen many times during the day because the levels of the drugs in your body change. It is difficult to predict when these phases will change because each person’s body responds to drugs differently. This can make it difficult for you and your doctor to regulate your medication.

One way that doctors have developed to help you decrease your OFF time and your ON time with dyskinesias is for you to record your symptoms in a motor diary. This is a daily diary that you keep at home and, during an office visit, show your doctor how your symptoms change and cycle during a usual day. Doctors have developed a standard way for patients to record their symptoms in a motor diary. This is so that every patient records in the same way, making the results easier for doctors to interpret.

Once you and your doctor decide that you should keep a motor diary, you will keep track of your ON time, OFF time, and ON time with dyskinesias during the time that you are awake for an entire week. First thing when you wake up in the morning, you will record which of the three phases you are in. Every half hour after that, you will again record what phase you are in. During the night, mark down any times that you wake up, and make note of your phase at that time as well.

Keeping a motor diary might seem like a lot of work, and it may be tempting to just record every hour or two, but it is very important to record every 30 minutes from the time you wake up to the time you go to sleep. You will also record when you take your medication and any other thoughts that you have about how you are feeling at that time.

The goal of recording your motor diary is to decrease the time you spend in OFF time and ON time with dyskinesias. Another goal is to increase the time you spend in the ON phase.

For more information go to http://www.wemove.org/par/

Published by WE MOVE
Judith Blazer, Executive Director
Joy B. Leffler, Director of Education
Cate Murray and Richard Robinson, Medical Editors
Lori Neste, Administrative Coordinator
Copyright © 2008 WE MOVE. All rights reserved.
www.wemove.org . www.mdvu.org

Brain disease can be caused by factors such as alcoholism, accumulation of heavy metals in the brain, the genes you inherit, malnutrition, and even lifestyle factors. But a new discovery shows that UHT milk (also known as ‘Ultra Heat Treated’ milk or Long Life milk) is one of the biggest dietary causes of brain disease.

The genes you inherit and smoking are responsible for some brain disease, but the biggest cause by far relates to what you eat and drink.

We are talking about serious neurodegenerative diseases such as Parkinson’s, Alzheimer’s, Lou Gehrig’s and Huntington’s Disease. These diseases have one thing in common: they are all caused by damaged proteins.

What happens is that damaged proteins accumulate in the brain over time and cause brain disease. This is supported by virtually all the scientific research into this subject, and there are many published studies that support this view.

How does UHT milk come into this? Up until now few people realized that UHT milk is very high in damaged proteins. Even fewer people have ‘put two and two together’ to realize that as a consequence, UHT milk is one of the biggest dietary causes of brain disease.

This hasn’t been noticed before because it can take many years for brain disease to develop, and the big growth in UHT milk sales is a recent development.

UHT milk and regular pasteurized milk are two different products because of the way they are processed. UHT milk is pasteurized at about twice the temperature of regular milk (and 57 percent higher homogenization pressure). This changes the molecular structure of UHT milk, making it very high in damaged proteins.

In the USA, Canada, and the UK nearly 10 percent of all milk sold is UHT, but sales of UHT are growing rapidly. And about 80 percent of all organic milk sold in the USA and Canada is UHT. In many other countries such as Spain, France and Belgium over 95 percent of all types of milk are UHT.