Young-onset Parkinson’s disease is when a patient is diagnosed between the ages of 21-50 years. The rate of the disease’s progression is usually much slower in younger than older people, due in part to the fact that younger people have fewer general health problems and are more capable during physical therapy treatment.1
A lack of awareness that younger people can develop the condition can contribute to a delay in diagnosis, and being provided with appropriate information and support.2 Diagnosis may come at a time when people are leading active lives and concerns centre around facing living with the condition for many decades and the potential implications of the disease on personal, family and professional desires and responsibilities.3
A patient’s story: Caroline
A diagnosis of Parkinson’s disease when you are only aged 48 is always going to be a shock especially when it is totally unexpected. After several visits to the doctor I was referred to a neurologist with a suspected trapped nerve. After a brief (30 minute) appointment with a locum specialist I was sent away with a prescription, some leaflets about living with the disease and a recommendation not to go the PD Society meetings because I would be upset by what I saw. A follow-up appointment six months later remains my only consultation with a doctor in the 11 years since diagnosis.
Parkinson’s disease is a life changing condition: it is degenerative, following a different path in every sufferer. I have been comparatively lucky; I managed to continue working as a teacher for six years before giving in to pressure and taking early retirement from my job in a primary school. It’s hard to be a teacher when your handwriting has deteriorated so badly that it can barely be read. As a result, my planning and marking were taking longer and longer resulting in increasing fatigue. This, together with growing levels of insomnia meant I was permanently tired and even fell asleep in the classroom.
Parkinson’s disease is caused by the inability of the brain to produce dopamine, a chemical which controls movement. As the disease progresses movement becomes harder and harder; this can also take the form of difficulty in controlling the bladder, eating or talking. I currently experience difficulties in balance and spatial awareness plus the constant fatigue makes continuing to live a normal life difficult.
"There is no cure for PD; the best I can hope
for is for the symptoms to be controlled."
Healthcare for sufferers can be very hit and miss. Despite not seeing a specialist for 10 years, I regularly see a specialist nurse. However, I am currently on my fourth nurse and each one who has left has not been replaced. Just 10 years ago the area in which I live had four specialist nurses; there is currently one. Whilst the nurse can make recommendations in respect of medication, prescriptions have to be issued by my GP.
There is no cure for PD; the best I can hope for is for the symptoms to be controlled. The current accepted thinking is for a cocktail of drugs to be administered; each one aimed at a different symptom. Whilst research is being carried out; breakthroughs are few and far between. A recent trial involving administering drugs direct to the brain produced promising results; however the drug company providing the funding refused to take the trials to the next stage. The most likely area for a breakthrough involves stem cell research; an area which produces its own level of controversy.
Life goes on but is a struggle. My mobility is decreasing and I find it difficult to sleep. I get very stiff so even getting out of bed can be difficult. Without the help and support of my partner who acts as my carer I would not manage.
I do not consider that the advice I have been given is sufficient. Over the past 10 years various drugs have been prescribed with little explanation. One is particular has had a major effect on my life. A group called dopamine agonists have a side effect which affects 17% of sufferers. This class of drug can cause compulsive behaviour; most commonly drink, drugs, gambling, shopping or sex. Over the years, at first without realising it, I have become addicted to on line slot machines. By the time I had accepted that I was a compulsive gambler, I was heavily in debt and had to be bailed out by my family.
It is a constant struggle but I am beating the addiction, however because of this, my retirement is not working out as planned!. Despite telling my GP and the nurse of my addiction, I was not offered any real support. I have not been offered alternative drugs and had to find my own counselling etc. So I now attend Gamblers Anonymous and see a counsellor from a gambling charity.
Suffering from PD makes life hard enough without this complication.
If you would like to share your story about a condition or chronic disease please email the editor at firstname.lastname@example.org