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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
EPDA - European Parkinsons Disease Association
LIFE WITH PARKINSON'S
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Patient testimonies

Depression

Depression occurs for long periods of time in approximately 40% of people with Parkinson’s disease. It can also occur in short bouts at one time or another in almost all people with Parkinson’s.

Beside the unpleasant effect depression has on mood, it can also make all the other symptoms of Parkinson’s much worse.

People with depression who have Parkinson’s have a different symptom profile than those without Parkinson’s. The Parkinson’s profile includes higher rates of anxiety, sadness without guilt or self-blame, and lower suicide rates despite high rates of suicidal thoughts.


“You can’t imagine what depression is like. Nothing matters. I am not sleeping at night and my pleasure in life is missing. I feel that I really need to get a grip on this situation and if I have to lose some symptom control in order to gain control over my life, then that is what I shall do.”

Dinu, 44, Romania

Panic attacks

Panic attacks are characterised by the sudden onset of severe anxiety, which is associated with several physiological symptoms. The level of anxiety goes from zero to 100 in minimal time and, generally, the person also experiences palpitations and sweating. Other common symptoms include trembling, shortness of breath, chest pain, dizziness, fear of dying or a tingling sensation. It is common to feel that everything is foggy and unreal.


“Sometimes I experience long episodes of anxiety and panic lasting up to three hours with heavy, fast breathing, abdominal pain, nausea and some hallucinations. They hit unexpectedly, in a store or when watching a movie. I just never know when. I am suddenly overtaken by a feeling of intense dread and fear. I just freak out.”

Elena, 67, Malta

Punding

Punding activity is characterised by compulsive fascination with and performance of repetitive, mechanical tasks. Examples of punding provided by members of the EPDA include activities such as collecting pebbles and lining them up as perfectly as possible, taking apart doorknobs and putting them back together again, and building hundreds of small wooden boxes.


“I was a little compulsive before my diagnosis but I have definitely become more compulsive since starting my medication. When bringing shopping home from the store I noticed that I was arranging the tins by size and colour. In the past three months I have completed fifteen 1000- piece puzzles and I have just finished a 500-piece one in 10 hours.”

Klaus, 47, Germany

SLEEP

People with Parkinson’s can experience a number of sleep disorders, including insomnia, parasomnias and daytime somnolence (excessive daytime sleepiness or sudden onset sleep).

Insomnia is a frequent and important complaint because of the impact of lack of sleep on quality of life. After recognising a sleep problem, the first step in management is to diagnose the type of insomnia and the possible medical or psychological factors that may disturb night time sleep. The next step is to give appropriate advice on sleep hygiene (i.e. controlling factors that may interfere with sleep).


“I am a 55 year old man: I get up at least once a night to use the restroom, which is not unusual. But to wake up at 2 am and know that I will be awake for the rest of the night – that’s depressing – especially when it happens four or five nights a month.”

Havel, 55, Czech Republic

“My husband yells, kicks and screams most of the night. We have to sleep in different rooms. He screams so loudly that even the neighbours can hear him.”

Florine, 62, Belgium

BLADDER

Urinary symptoms are a frequent cause of discomfort among people with Parkinson’s disease. The cause or causes in each person must be examined. Bladder, bladder outlet problems and side effects of medications should be excluded. Parkinson’s and other forms of Parkinsonism, such as multiple system atrophy, can also cause these symptoms. Management should be directed by a urologist with additional counselling provided by the neurologist.


“The bladder symptoms are a huge problem for me. I need to go to the toilet urgently, and then get neurotic even though I know it’s just an urge. I end up not drinking for three hours before going out. Then, because I suppress the urge, I get infections and therefore need antibiotics. Lately I have had anxiety attacks over worrying about getting to a restroom... Of all the problems I deal with, this is the most bothersome!”

Marica, 59, Slovenia

FATIGUE

Fatigue is a complex symptom that may include feelings of weariness, tiredness or lack of energy. It should not be mistaken for drowsiness, which is feeling the need to sleep. Fatigue is a lack of energy and motivation. Drowsiness and apathy (a feeling of indifference or not caring about what happens) can be symptoms of fatigue.


“Fatigue has always been my worse symptom, combined with a brain ‘fog’. When I am fatigued I cannot make decisions. I sleep a lot more now, but find that fatigue is worsened by anxiety or being a bit “off”. I used to be a truck driver but I had to retire. I miss my work very much.”

Pekka, 57, Finland

OLFACTION

A reduced sense of smell and taste is now recognised as a very early feature that can be detected in some untreated, newly diagnosed people with Parkinson’s. It is caused by damage to the nerve cells in the part of the brain that controls the sense of smell. Although this symptom is not physically disabling, it can impair the enjoyment of food (including reduced appreciation of the taste of food) as part of daily life. In the future, prompt recognition of this symptom may be important in early diagnosis of Parkinson’s.


“Looking back, losing my sense of smell and, therefore taste, was quite an early symptom, although we did not realise it at the time. For me it was a disaster as I was a keen amateur cook and it took away a lot of the pleasure of food and wine. Since starting a new treatment I have recovered both smell and taste and I can now enjoy a glass of wine, when before it tasted like water.”

Carl-Henrik, 77, Sweden

PAIN

Pain is a sensory experience that is highly subjective to the individual. Pain may be acute or chronic and is characterised in various ways, according to duration,

intensity, type (dull, burning or stabbing), source, or location in the body. Pain and discomfort in Parkinson’s usually arise from one of five causes: (1) a musculoskeletal problem related to poor posture, awkward mechanical function or physical wear and tear; (2) nerve or root pain, often related to back or neck arthritis; (3) dystonia and the sustained twisting or posturing of a muscle group or body part; (4) extreme restlessness; and (5) a rare pain syndrome known as ‘primary’ or ‘central’ pain, arising from the brain.


“I don’t experience tremor much at all but I suffer terribly with body pain. My legs ache all the way to the bone, as do my arms, shoulders and back. I just hurt all over! When I get up some mornings the pain is at its worst because I am so stiff from lying down all night.

I have pain in my right hip, left arm and lower back. The back pain forces me to find a chair quickly and sit down. I am not one to complain but I am getting no sleep unless I just pass out. I had a frozen shoulder for months – very painful and no one knew what caused it. My muscles kept tightening and cramping with no release. That was a year before my Parkinson’s diagnosis.”

Adam, 32, Poland

BOWEL

Constipation is the passage of small amounts of hard, dry bowel movements,

usually fewer than three times a week. People who are constipated may have difficult and painful bowel movements. The pathological cause of chronic constipation always requires careful diagnosis.


“One of the topics I avoid with people, that I am embarrassed to discuss, is constipation. After all, who wants to talk about it? Constipation is one of the most universal symptoms that people with Parkinson’s deal with, but it’s not something anybody likes to talk about. I suffer from severe constipation as a result of my Parkinson’s medication. It is an ordeal for me. Constipation is simply ruining my life. It makes me lose my joy of life.”

Andrei, 71, Bulgaria