MIKEL CASAL

How to stay independent during the early years of Parkinson’s

Keeping active, adapting your home and physiotherapy can help maintain personal autonomy for longer

ELENA MARTÍN

"I still think the doctor made a mistake and I’m not really ill. If I move with more difficulty now it’s because I’m 73, not because I have Parkinson’s,” says Antonio Calderón.

The day he received his diagnosis, he thought the world had come to an end. That was about a year ago. Since then, his health doesn’t seem to have changed. “It’s a bit harder to move about and to talk, and my back aches, but I don’t shake and I still do everyday things like get dressed, eat, make the beds and clean the house,” he says.

Antonio is in what is called the ‘honeymoon period’ of Parkinson’s, which lasts for about four to eight years after diagnosis, (it depends on each person), and is the time when patients respond favourably to treatment.

In figures

  • 120,000 people in Spain suffer from Parkinson’s. The number is expected to double in 20 years, and triple by 2050, according to the SEN.

  • 30% of people with Parkinson’s do not shake when they are at rest, which is the symptom that most of society is familiar with.

“This stage ends when the medication loses effectiveness and the symptoms get worse, because of the progression of the illness. It is characterised by motor symptoms (shaking, muscular rigidity, postural instability and slow movements) and others (cognitive deterioration, sleep disorders, fatigue, anxiety, depression, constipation, pain...)” explains Diego Santos, neurologist at the Study Group into Movement Disorders at the Spanish Neurology Society (SEN).

Parkinson’s could be due to a combination of genetic and environmental factors and those associated with ageing, depending on the individual. “For example, in people in whom the illness appears at an early age, a genetic mutation could be the cause,” says Dr Santos.

To tackle it in the best way possible, it is important to understand, accept and learn to live with the illness

To tackle it the best way possible, it is important to understand, accept and learn to live with the illness, because the symptoms don’t disappear, although the progression of Parkinson’s varies in each person. That’s why the Spanish Parkinson’s Federation, for which Antonio is a volunteer, and patients’ associations, have resources to help. There are also certain measures that can be useful in living with Parkinson’s, depending on how the symptoms advance.

Dressing and putting shoes on

As long as you can, it is best to get dressed without help, because it is excellent exercise. If the clothing is comfortable, elastic, with zips, velcro fastenings or press studs it will be easier, and so will wearing moccasin-type shoes rather than ones with laces.

In the bathroom

Put a stool in the shower to sit on, as this will make washing easier, with an anti-slip mat and handrails. Handrails are also needed by the toilet, to help you sit and stand more easily. If the shaking makes it difficult to brush your teeth, brush with a foam rubber cover for the handle. And for shaving, an electric razor is best, unless you have a pacemaker.

Adapt your home

This needs to be organised so there are no possible dangers, such as shiny floors, rugs that aren’t fixed down, electric cables or general disorder. Satin sheets and pyjamas make it easier to move in bed. Antonio, for example, is going to move house to one where there are no stairs.

Eating

Go for lightweight cutlery because it is easier to use, and consider swapping fragile utensils like glasses for others that won’t break if you drop them because of the shaking, like plastic. If you find it hard to lift a glass to your mouth, use a straw. When eating, do it slowly and in small mouthfuls, and only swallow a small amount of well-chewed food at a time.

When walking

To overcome a blockage when walking, the clinic recommends standing up, resting on your heels without leaning backwards and starting to sway without moving until you are ready to continue.

Complementary therapies

Managing this illness must be multidisciplinary. Apart from taking medication, complementary therapies can help to achieve greater functional wellbeing and improve quality of life. These should be individualised, because patients do not all require the same or even the same type of exercise. Some of the alternatives are: physiotherapy, speech therapy, psychotherapy, cognitive stimulation, or physical exercise with a personal trainer.

“Physical exercise releases substances which protect the brain, and it can help to prevent the apparition of Parkinson’s or slow down its progress if a patient has the illness. It is also very important to control vascular risk factors such as hypertension, diabetes and cholesterol, and have a balanced diet,” says Dr Santos.