A Caregiver’s perspective.
I am Colin Wynn, married to Lesley Gosden since 1981. She was confirmed as having Young Onset Parkinson’s over fifteen years ago at the age of 43. This mirrors the case of movie star Michael J Fox. The publicity generated brought to mass attention (possibly for the first time) the fact that Parkinson’s isn’t just a bit of shaking and dribbling which affects the elderly. It is a cruel disease that can strike young and old at any time displaying a variety of debilitating symptoms in differing degrees of severity. The common factor is that it irrevocably changes the life of the victim and those around them. The knowledge that tomorrow you are only ever going to feel worse than you did today can have a negative effect on body and mind, but strength of character and positivity can make it more bearable. GDNF offered a glimmer of hope that the downward spiral could be halted, maybe even reversed. It is my personal opinion that GDNF turned the clock back at least five years for Lesley, and she is still in a better place now than when her trial participation commenced in 2015.
I have been asked several times to what degree my role has changed from being a husband to that of a carer. There are numerous illnesses which must replicate this situation, but I can only speak with subjective conviction from experience within the Parkinson’s community. In life there are people who stand strong in the face of adversity and those that crumble before it. Parkinson’s has torn marriages apart, but also brought other couples much closer together. As someone who has turned procrastination into an art form and could sit on the fence for England, I found dealing with the Parkinson’s diagnosis challenging. Having sat with Lesley for hours in Parkinson’s clinic waiting areas (and all too brief periods in consultant’s examination rooms), I naively and wrongly thought I had seen Parkinson’s at its worst. If the BBC documentary has achieved only one thing, the sight of Tom Isaacs writhing on the floor brings home to non-sufferers and clinicians alike the horrors of symptoms which are only witnessed in private. My mechanism back then for dealing with the enormity of what was come was to file it in a mental box. I didn’t know how bad things would become, but kept an irrational blind hope that somehow it would all work out. Like knowing there is a black scary monster lurking under the bed, but hoping it will have gone away by the morning. At some point however the monster does have to be confronted. The GDNF operating theatre has a long lonely corridor leading back to the public area. I have twice walked that corridor not knowing if I would see Lesley alive again. It is such moments of potential loss that hammer home what a special and remarkable person you are married to. Reality hits you in the face and makes you see your life’s pettiness for what it is. I stand utterly humble in the shadow of Lesley’s bravery and determination to change the fortunes for future sufferers. Parkinson’s has invaded our lives but I believe it has made me a better person and us a stronger couple. I do not see myself as a carer, but instead I am deeply honoured and proud to be a husband.
I can’t forecast the future for GDNF. All I can say is that Lesley is striving tirelessly to change the way scientists conduct all future trials. Years of failure are at last ringing alarm bells within the institutions that matter. Participants in the GDNF and similar trials are not lab rats but thinking intelligent beings with vital information to impart. They are begging to be listened to.