'The Road Less Travelled'
“It’s not all bad news; your condition is not life-shortening...There’s certain to be a cure in the next ten years, or so...”
When you’ve just been diagnosed with Parkinson’s disease at the age of 53, neither of the above are exactly heartening...as my husband and I found out. Twelve years down the road, he is still soldiering on, and still waiting for a cure that is even further away than it was then.
And so, the regime of tablets started...the medication comparatively mild at first but as the condition progressed so the strength of the medication had to be increased. Parkinson’s is a disease that gradually destroys the brain cells that produce dopamine. Dopamine is a neurotransmitter and these tiny chemicals cross the gap between the neurons in our brains, passing on messages, and is responsible for all our voluntary movements, but not involuntary ones, so thankfully, breathing and heart rate are not affected.
The problem now is, that after twelve years, his medication has reached its maximum dosage,
and the next step would be toward the uncharted territory of Deep Brain Stimulation, or DBS...A daunting prospect indeed.
To put it rather bluntly, when we discussed this at a recent meeting with his Parkinson’s Nurse specialist, we were both scared shitless, so we decided to ask our daughter (a former nurse) to research it for us. She was happy so to do, and came up with the following.
Research shows that global outcomes for Parkinson suffers who have had DBS compared to those who haven’t, is significantly better. She explains that ‘significant’ means the findings are not due to chance, but as a direct result of the surgery. She tells us that those who have had the procedure, and posted their experiences online, don’t regret it and would do it again in a heartbeat...That there has been some evidence of cognitive impairments like short term memory loss, though overall these impairments appear to be temporary. Serious events, like psychosis are statistically insignificant (in other words they are the same incidence as in those who don’t have DBS). She goes on to say the biggest risk is a stroke during surgery. She tells us it requires two operations; one to insert the probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. Also, he would have to go through a series of assessments first, meaning he would have to go ‘cold turkey’ with his medication, so they can see what the most troubling symptoms are; terrifying in itself.
“Well there’s your answer then,” she concludes. “It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable.”
As a family we agree that until he has more ‘off’ days than ‘on’, he should wait, and so we go on...living from week to week, month to month, like so many others in the same situation. We are still scared shitless, but one thing I do know, if he does decide to walk down that ‘road less travelled’, I’ll be right there beside him. The trouble is, it would be just my luck to slip on an errant banana skin along the way and break my leg...but that, as they say, is another story. But even if I did, god-willing our daughter would be there to pick up the pieces and put us together again, as ever.
“By the way,” she quips as she’s leaving, “I’ve put the necessary wheels in motion to donate my brain for Parkinson’s research...not until after I’ve finished with it, of course.”
We smile, and she kisses us goodbye. What greater love?