A complicated condition - living with Parkinsons

A complicated condition - living with Parkinsons

Dilys Parker

This week is Parkinsons awareness week - looking back it was a walk through the city rose gardens one summer that gave me one of the first clear signals that I had Parkinsons. The roses were in full bloom. I had lost my sense of smell though the fact barely registered. I anticipated it would return… it never did. Now I know that anosmia, loss of smell is a common pre diagnosis symptom. About the same time I was troubled by an ache in my right shoulder which I rationalised as a type of repetitive strain injury from years of carrying heavy loads such as babies, shopping bags and text books. It persisted and I learned to live with it and in time hardly noticing the dull pain in my muscle that sometimes included my whole arm. Now I know that many people complain of unresolved shoulder pain, sometimes for years before diagnosis.

The motor symptoms of Parkinsons are well recognized but it is the non motor symptoms that can affect quality of life as much and sometimes more than the motor symptoms. Changes in the brain caused by Parkinsons mean anxiety is twice as common in people with parkinsons than in the general population and depression symptoms affect as many as 35%. Sleep disorders are reported to affect up to 90% of Parkinsons sufferers. Pain is twice as likely to affect those in the PD community than in the general population while apathy affects 30% - 40%. [1] Those are just mood symptoms, there are many more relating to other body systems.

What we know as a movement disorder is really a multi systems disorder and treating just the movement aspect while ignoring the non motor symptoms is only treating part of the person. However the non motor aspects are at last being recognised although many people remain unaware that so many different problems can be due to Parkinsons.

A friend sees her neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for Parkinson’s disease. She compared it to the time spent managing her condition herself ….a whopping 8,765 hours. She calls this time self care. This friend is describing her situation in Scandinavia but the experience for me is similar.

Parkinsons is a challenging condition. Knowing as much as I can about it is important for my overall well being and for making sure treatment is optimum, and this is why the charity Parkinson's New Zealand is so important. This week is Parkinsons awareness week and we are grateful for the services and community educators of Parkinsons New Zealand, who will visit in homes giving support and guidance to the person with Parkinsons as well as to family members.

For more information, see www.parkinsons.org.nz

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