Making the invisible visible....


I'm often asked "What is Parkinson's disease?"

The wrote and simple answer is that PD is the progressive degeneration of the dopamine-producing cells in the brain leading to symptoms that include tremors, stiffness and rigidity, and slowness of movement. It affects 1-2 per cent of Kiwis over 60 -- about 10,000 people -- and that rate is expected to double over the next 20 years.

Is there a cure?
No - and symptoms typically only become clear after the sufferer has already lost 70 per cent of the dopamine-producing cells. The best-known treatments include drugs and "deep brain" stimulation,(which is what I have been blessed to have) where a nuerotransmitter is implanted in the chest and wires inserted into the brain to electrically stimulate the areas that control movement.  I have had a profound visible change in my physical world and I am grateful beyond words and I will make the most of my good fortune - but I am not cured.  Not even close.  Below I have split out the symptoms as visible and invisible.  What you can't see with me and all others with PD is the invisible stuff.

Visible (Motor) Symptoms

Parkinson's disease symptoms and signs do vary from person to person. Early signs may be mild and often go unnoticed. Symptoms often begin on one side of your body and usually remain worse on that side, even after symptoms begin to affect both sides. Parkinson's signs and symptoms may include

  • Tremor. Your tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger known as a pill-rolling tremor. One characteristic of Parkinson's disease is a tremor of your hand when it is relaxed (at rest).
  • Slowed movement (bradykinesia). Over time, Parkinson's disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.
  • Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.
  • Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson's disease.
  • Loss of automatic movements. In Parkinson's disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk. You may no longer gesture when talking.
  • Speech changes. You may have speech problems as a result of Parkinson's disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections. A speech-language pathologist may help improve your speech problems.
  • Writing changes. Writing may appear small and become difficult.


Invisible (Non-Motor) Symptoms

Most people with Parkinson’s experience nonmotor symptoms, those that do not involve movement, coordination, physical tasks or mobility. While a person’s family and friends may not be able to see them, these “invisible” symptoms can actually be more troublesome for some people than the motor impairments of PD.

Early Symptoms

Many researchers believe that nonmotor symptoms may precede motor symptoms — and a Parkinson’s diagnosis — by years. The most recognizable early symptoms include:

  • loss of sense of smell
  •  constipation
  • REM behavior disorder (a sleep disorder)
  • mood disorders (that's code for depression)
  • orthostatic hypotension (low blood pressure when standing up).

Other Nonmotor Symptoms

Some of these important and distressing symptoms include:

  • sleep disturbances
  • constipation
  • bladder problems
  • sexual problems
  • excessive saliva
  • weight loss or gain
  • vision and dental problems
  • fatigue and loss of energy.
  • depression
  • fear and anxiety
  • skin problems
  • cognitive issues, such as memory difficulties, slowed thinking, confusion and in some cases, dementia
  •  medication side effects, such as impulsive behaviors