What changes will occur during the progression of Parkinson's disease? How to deal with it?

Author: Wang Yichun, Peking Union Medical College Hospital

Xu Dan, attending physician at Peking Union Medical College Hospital

Reviewer: Wang Han, Chief Physician, Peking Union Medical College Hospital

During the progression of Parkinson's disease, the patient's symptoms become increasingly complex. In addition to the original tremor, stiffness, and slow movements, motor complications may occur, and the response to medication may no longer be stable. In addition, the progression stage is also accompanied by many non-motor symptoms, such as sleep disorders, cognitive impairment, and mood swings, which further affect the patient's quality of life. Identifying and observing changes in the condition at this stage will not only help develop more effective management plans, but also help patients and their families better cope with the problems caused by the disease.

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1. Symptom changes during the progression of Parkinson's disease

Changes in symptoms can take many forms, involving multiple aspects of motor and non-motor symptoms.

(1) Limb spanning: refers to the increase in the number of affected limbs and the change in the distribution of symptoms, such as development from one upper limb to the lower limb → the opposite upper limb → the opposite lower limb.

(2) Changes in the form and degree of movement: For example, initially there was only tremor, but later the same limb becomes stiff, the amplitude of the original tremor increases, and gait disorders such as panic, dragging, lunging, and freezing appear.

(3) Nighttime symptoms: The patient's daytime symptoms are mild, but his sleep deteriorates significantly at night, he has difficulty turning over, his tremors worsen, and he has to go to the bathroom frequently, indicating that the short-acting drugs used during the day are no longer able to meet the long-term symptom control needs at night.

(4) Urinary and bowel disorders: For example, constipation, which used to be treated by dietary adjustments, now requires frequent use of laxatives.

(5) Emotional cognition and mental symptoms: Many patients have depression before the onset of motor symptoms, which gradually worsens in the later stages. In addition, the decline in motor ability will add additional psychological burden to the patients, causing emotional fluctuations. Cognitive problems can manifest as memory loss. In severe cases, patients cannot find their way home. Hallucinations manifest as seeing non-existent people, insects, snakes in the house, and strong fear.

(6) Dizziness: Especially in the summer, the effects of medications and the disease itself can easily lead to a drop in blood pressure. Even patients with hypertension may have normal or low blood pressure without medication. Therefore, monitoring must be strengthened.

(7) Fatigue: Feeling weak and unable to recover no matter how much sleep you take may indicate that the disease is progressing or that the medication is not effective enough.

(8) Pain: It may also be a feeling of soreness and numbness, which may be restless legs syndrome, or may be related to concurrent osteoarthritis or peripheral neuropathy.

(9) Speech and swallowing: Manifestations include slower speech, lower voice, stuttering, slow eating, and choking. Sometimes the patient wolfs down a mouthful of food but does not know how to swallow it.

II. Changes in drug efficacy during Parkinson's disease progression

Changes related to drug efficacy can be divided into the following categories.

(1) End-of-dose phenomenon or end-of-dose fluctuation: Early patients usually take the drug three times a day, and the dosage is relatively small, so they feel that it is effective and there is little change throughout the day. However, as the disease progresses, symptoms often worsen at the end of the last medication and about 1 hour before the next medication, which is the end-of-dose phenomenon (for example, if you take the drug at 7 am and 12 pm respectively, then symptoms are likely to worsen between 11 and 12 pm), and the symptoms improve again after taking the next dose. This is a predictable symptom fluctuation.

(2) Switching phenomenon: There is also an unpredictable fluctuation of symptoms. The patient suddenly becomes unable to move in daily life, and then gets better on his own after a few minutes or more than 10 minutes, just like a power switch. Therefore, it is called the "switching phenomenon."

(3) Abnormal movements: Mild symptoms include shaking, while severe symptoms include restlessness, inability to stand, and twisting while lying down, sometimes accompanied by pain. There is no need to worry or be afraid of this situation. As long as it does not have a significant impact on the quality of life, no special treatment is required. In severe cases, the medication can be adjusted as appropriate.

(4) Dystonia: It manifests as abnormal posture, such as the big toe curling up or digging the ground, sometimes accompanied by pain, which often occurs in the morning.

(5) Delayed onset or no onset after medication: The effect of medication has become significantly worse, which is a very clear signal that the patient has entered the progressive stage. Some studies believe that if the off-set time during the daytime is more than 2 hours while awake, or if the patient feels very painful movements for more than 1 hour, it indicates that the disease has entered the progressive stage.

3. What can patients with progressive Parkinson’s disease do in cooperation with doctors?

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First of all, the most important thing is the learning of the patients themselves and their caregivers. For example, the above content can be reviewed repeatedly. After mastering it, you can develop a daily observation habit and know what situations need attention and what needs to be reported to the doctor. It is recommended to use some recording methods: such as a diary to record the time, medication status and subsequent reactions; or mobile phone recording. Intuitive videos are especially suitable for recording movement status, such as helping doctors determine whether the tremor is aggravated or abnormal movement, gait status, etc. In addition, the development of new smart programs and wearable devices will assist in medication management and video recording, allowing patients to participate in disease management.

Secondly, regular follow-up is also very important. It is generally recommended to follow up every 3 to 6 months during the progression period. During the follow-up, we will use some scales, such as the UPDRS scale, to assess the severity of the disease and objectively reflect the dynamic changes of the patient's condition. Many of these scales can be self-assessed or assessed with the assistance of family members.

Finally, let's summarize the above content with a mind map. The fluctuation of progressive symptoms includes both motor and non-motor symptoms. The two most important phenomena - dysphagia, breathing caused by choking and coughing, pneumonia, and falls, fractures, and bed rest secondary to gait and balance disorders, can lead to a sudden change in the disease, and special attention should be paid. The intermediate state of the patient's symptoms from the stable period (honeymoon period) to the progressive period is called the unstable period. Early identification and treatment of this period may play a role in preventing the occurrence of adverse sports events.

Figure 3 Progression of Parkinson's disease and observation methods

References:

[1] KALIA LV, LANG DAE Parkinson's disease[J]. Lancet, 2015, 386(9996):896-912.

[2]TITOVA, NATALIYA, CHAUDHURI, et al. Non-motor Parkinson disease: new concepts and personalized management[J]. Medical Journal of Australia Journal of the Australian Medical Association, 2018.