We are all familiar with the image of a space shuttle crew in their pumpkin orange survival suits surrounded by a swarm of tech support personnel making their way to the launch pad. One such crew included astronaut-engineer Michael Richard Clifford ('Rich') aged 42, in good health and medically fit for duty as an astronaut. He had, however, been diagnosed with Early Onset Parkinson’s Disease (EOPD), writes Chartered Engineer Kieran Fallon.
Michael 'Rich' Clifford
Only Clifford, the shuttle commander and the medical personnel knew of Rich’s diagnosis. It was decided to keep his condition secret because news of it would dominate the coverage of the mission rather than scientific and technical achievements.
Arms not swinging with his step
The initial symptom for Clifford was his arms not swinging with his step. Together with poor gait, small handwriting, occasional tremor and loss of smell his symptoms are familiar to those suffering from EOPD. His story is the subject of a documentary The Spaceman’s Secret, which can be searched.
Parkinson's Disease (PD) is caused by a loss of nerve cells in the brain causing a reduction in a chemical called dopamine. Dopamine plays a vital role in regulating the movement of the body.
It is thought about one in 500 people are affected by PD. (An accurate count in Ireland is not available as, unlike the UK, the data is not collected on the census.)
Exactly what causes the loss of nerve cells is unclear and without a cause, a cure is difficult. About 10% to 20% of people with Parkinson's experience symptoms before retirement age, which is called 'early onset'.
Different experiences of disease
The range of symptoms – both movements related and non-movement related – are extensive and as with any progressive condition as time passes the condition gets worse.
While treatments are the same regardless of age, EOPD people may experience the disease differently to their post-retirement older cohort. This includes the impact on a young family, taking medication for up to 50 years, workplace safety and social welfare entitlements.
Clifford’s diagnosis remained a secret for 15 years. Many of those suffering from this sly, secretive, loathsome affliction, are worried about job prospects, career progression and financial stability, so they keep their condition a secret.
After completing his space shuttle mission which included docking for the first time with the Mir space station and a six-hour spacewalk, Clifford resigned from Nasa to join Boeing. This decision was in part financial, his diagnosis of PD resulted in the US army grounding him with the loss of his flight allowances.
Finances also play a significant role in the decision making of EOPD.ie members. An employee unable to work due to an accident or long-term illness will be dependent on social welfare unless their employer has income protection insurance.
Income protection insurance or long-term illness cover maintains an income for the employee if they are unable to work. Engineers and technical staff are notoriously bad at ensuring they have adequate insurance cover and it is recommended that you check whether you are in a scheme to provide for you in case of serious illness such as EOPD.
Why exercise is crucial
Clifford also maintained his interest in golf post-diagnosis, which some would consider as important as family life or crewing a space shuttle. The importance of golf, and exercise in general, is supported by medical research and is one of the few ways to slow the progression of the disease.
There is always an engineering solution and for EOPD this comes in the form of Deep Brain Simulation (DBS) – a surgical procedure that involves implanting electrodes in the brain.
Once activated, a pulse generator sends continuous electrical pulses to the target areas in the brain. The DBS operates in much the same way as a pacemaker for the heart. Until recently EOPD patients had to travel abroad (UK, France or US) for this surgical procedure; however, DBS operations started in Ireland earlier this year.
An organisation and registered charity EOPD.ie has been set up to support Early Parkinson’s. It is a growing community, some like Clifford are very secretive about their condition, which we respect and maintain confidentiality and understand that not everybody is public about the disease.
If you or somebody you know has been diagnosed with EOPD they should not feel isolated, the community will support you. Contact details are available at: www.EOPD.ie. Kieran Fallon can be contacted at: kieranfallon@eopd.ie
Author: Kieran Fallon, CEng FIEI