[responsivevoice_button voice=“German Female“ responsivevoice_button buttontext=“Mark the post to read it aloud“]In my last article I described the daily routine of a person with mid-stage Parkinson's disease. This stage is characterized by phases with the first severe symptoms, but which can still be controlled with the usual medication. However, this is only one facet of the disease. The slow progression leaves little room for quality of life in a later stage of the disease, especially in people who develop Parkinson's disease at an early stage.

So what does the day look like for someone with Parkinson’s in the later stages of the disease? We ourselves like to ignore this part of the illness and we do everything we can to delay the point at which it occurs as much as possible. But it will come, that's a fact, at least for those with the disease at a young age, where Parkinson's disease has had enough time to develop.

07:00 a.m. – The morning

The day starts early for her, but not of her own free will. The stiff muscles and extreme dystonia wake her up before the alarm clock. She was diagnosed with Parkinson's disease at the age of 38 and is now 49. She cannot get out of bed on her own; her body is frozen. Her husband, who works from home, helps her out of bed and accompanies her to the bathroom. Here she needs full support for brushing her teeth and washing. These activities, which were once taken for granted, now take up the precious 30 minutes of mobility that she has left in the day.

08:00 a.m. – Breakfast

Breakfast is a tedious affair. Even holding a spoon requires tremendous effort and the help of her husband. Although she has an appetite, she often loses the desire to eat because movements are difficult and make her painfully aware of how restricted she is. Her husband prepares breakfast and helps her take small bites.

09:00 a.m. – Medication

After breakfast she takes her medication. The many tablets are necessary to control the symptoms somewhat, but the effect is limited. It often takes a while for the medication to work and sometimes the desired effects do not occur. The hope of relief through medication is a constant companion, but also a source of disappointment.

10:00 a.m. – rest period

She spends most of the morning in the living room, in a special armchair that supports her body. Movement is nearly impossible and most of the time her body freezes. She tries to distract herself with books, television or audio books, but the pain often disrupts her concentration. Her dog sits faithfully by her side, but even petting the animal is difficult for her. Her husband is nearby, often working on his computer, ready to help her at any time.

12:00 p.m. – Lunch

Lunch is eaten similarly to breakfast, with the support of her husband. Digestion is often problematic because limited mobility also affects the internal organs. After eating, you will be given another medication to relieve your symptoms.

13:00 p.m. – Therapy and care

After lunch, a nurse comes to help with personal hygiene. This is one of the few opportunities where she has direct contact with other people. The nurse helps her change clothes and do light exercises to mobilize her muscles a little. This short period of activity is strenuous, but also important to prevent muscle loss.

15:00 p.m. – Afternoon rest

The afternoon is similar to the morning. Longer periods of immobility and pain alternate. Sometimes she tries to sleep, but the pain often prevents her from doing so. She is alone with her thoughts as most of her friends have withdrawn and visits are rare. Two cleaning assistants come a few hours a week to do the bare essentials.

18:00 p.m. – Dinner

Dinner will be eaten together again. Conversations with her husband are often the only social highlight of the day. Despite the serious illness, they try to maintain a certain normality. Medication is taken again after eating.

19:00 p.m. – Evening activities

In the evening she tries to keep herself busy with TV or audio books. Her husband is often nearby, but also occasionally works on the computer. The evenings are often quiet, but also marked by fear of the coming night and the pain that it brings with it. Until a year ago, she loved making organic soaps, dancing Zumba, playing with her dog and tending the garden. But all of these activities are now out of reach.

22:00 p.m. – Night

Night is a particularly difficult time. Sleep disorders and pain are constant companions. She needs help getting to bed and her husband often gets up several times during the night to help her. Every movement is laborious and painful, and the hope of a peaceful night is rarely fulfilled.

According to the doctors, she has reached the end of all possible therapies - at the age of 49. Her last hope is DBS (deep brain stimulation), which she signed up for this year. But here too, the doctors warn that she shouldn't expect miracles.

This daily routine shows how much a woman's quality of life is affected in the advanced stages of Parkinson's disease. Despite all efforts and support, the disease remains a constant companion that determines and limits almost every activity.

May Evers and Jürgen Zender, June 03.06.2024rd, XNUMX Hamburg, Munich