How Parkinson’s motor symptoms respond to dopaminergic medication changes over time. Although everyone is different the following stages can help you understand the role of medicines and expectations for their benefit:
Early Stage: Early in the disease, dopaminergic medications are effective and their effect on movement continues from one dose to the next. This results in a seamless control of motor symptoms and no clear fluctuation in response to each dose. In fact, many people do not notice that their next dose is due and must make the effort to take their medication on the schedule as directed by their healthcare provider. Of course people with Parkinson’s can still have ‘good’ and ‘bad’ days or find that their symptoms change in different situations such as stress, fatigue or illness.
Mid Stage: Over time, movement control with dopaminergic medical treatment can become more difficult as time progresses. The effects of each medication dose does not last from one dose to the next. However, medication doses continue to improve movement symptoms such as tremor, rigidity and slowed movement. Yet this improvement does not last from one dose to the next requiring medication change – these problems first appear as motor fluctuations often referred to as on and off periods.
- On – Off periods describe the change throughout the day in response to medication.
- On is when the medicine improves symptoms
- Off is when the medicine effect is worn off or is no longer working and symptoms worsen or return. It is first described prior to the next dose of medicine called end of dose wearing off.
- Dyskinesia or involuntary (unintentional) movements or jerky motions is a side effect of dopaminergic medication and usually occurs after it “peaks” in your system.
Advanced Disease Progression: Certain symptoms become less responsive to dopaminergic medicines and can increase in severity as the disease progresses. These motor symptoms include balance, freezing of gait, speech and swallowing. These symptoms do improve with rehabilitation therapy even if they do not improve with medication. It is important to review these problems with your healthcare provider so they can refer you to these specialists.
Talk with your healthcare provider to better understand how your symptoms are responding to medicine.
Rehabilitation therapy includes any of the following
Physical therapy- especially effective for gait, balance and mobility
Occupational therapy- especially helpful for daily activities, chores and hobbies
Speech and Swallowing therapy- focuses on speech and swallowing.
See Take Charge! Build your Team and print a copy of the Comprehensive care worksheet posted on NWPF wellncess site for more information on how these therapies can help you
Preference for bedding and type of mattress differs from one person to the next. An old mattress can be uncomfortable, lose its support and contribute to back pain or sleeping problems. However, certain Parkinson’s related problems will influence what type is best for you. The following considerations can help you chose your mattress/bedding
- Avoid high bed frames/mattress sets as these may be harder to get in and out of bed
- A firmer mattress will make it easier to turn in bed. ‘Memory foam’ that molds to your body can make it harder to roll over and turn in bed.
- An adjustable bed that allows the head of bed to be elevated can help with getting out of bed, finding a comfortable position
- An adjustable bed that allows the foot of bed to be elevated can reduce leg swelling by elevating your feet
- Try silk or sateen sheets or bed-clothes to help reduce friction and improve movement such as the ease of turning over
- Ask for a referral to occupational therapy if you are having trouble getting in and out of bed or moving and turning in bed to see if there are aids that can make this easier for you
Let us know what type of mattress has worked for you.
Parkinson’s disease is not a condition transmitted by blood so having PD does not exclude a person from giving blood. According to the American Red Cross, donors must be at least 18 years old and 100 pounds. There may be other reasons or issues that influence whether a person with PD should give blood. A few of these reasons include:
- Symptoms of lightheadedness due to low blood pressure
- In some cases, weakness and sedation
Giving blood is an important opportunity to support others in need. It is important to check with your doctor if you have questions before giving blood.
Levodopa (carbidopa/levodopa or Sinemet) is an effective treatment for motor symptoms. Yet levodopa is associated with motor complications such as:
- Motor fluctuations – wearing off of medication effect between doses leading to re-emergence of movement symptoms
- Dyskinesia – uncontrolled involuntary movement
The risk of developing levodopa related motor complications increases in part with severity of the disease, type of Parkinson’s (greater risk in young onset individuals), duration of use and total levodopa daily dose. For this reason other dopaminergic medicines such as dopaminergic agonists or MAO inhibitors can be used first with the addition of levodopa when needed. Levodopa is the most effective medicine for movement with one of the lowest dopaminergic side effect profiles (nausea, lightheadedness, sedation, cognitive changes, hallucinations). For people who are at risk for these side effects (ie. elderly) levodopa is often considered the best choice.
So the decision on when to start levodopa depends on a person’s risk of side effects and the risk of developing motor complications. In general younger individuals are at greater risk of motor complications and a lower risk of side effect but this is not always the case. Which medication is best for you and when is a discussion each patient should have with their doctor.