Hi all, I’m Rach. My husband was diagnosed with Young Onset Parkinson’s in 2016. His symptoms are fairly well managed with medication which allows him to work and live pretty independently. However, as anyone who may be familiar with the condition will know, the meds can come with some unwelcome side effects including dyskenesia and impulsive control disorders, and he needs extra support when his meds are on their “off” periods. He has been referred for Deep Brain Stimulation surgery which we hope will ease some of his symptoms and allow us to reduce his meds - although I am fully aware from my research on this topic it is by no means an easy process or “magic cure”.
This forum is the first time I’ve really reached out to anyone for support for myself. Up to now my priority has always been for my husband, since he is the one who actually has the condition. Back in 2016, when I was a sponge for information about YOPD and the support we could access for my husband, I was resentful of suddenly being cast into the role of “carer” in all the information and guidance we would come across. My brain’s response would be, “I’m not his bl**dy carer, I’m his wife!”. In recent years this has morphed into reluctance (“Others are more deserving of this label and the support that comes with it; I’ve got it easy in comparison”). But recent events have made me decide to get over myself and reach out to others who may be in similar situations or have shared experiences.
The turning point came last week when my husband admitted to having hid an Impulsive Control Disorder for more than a year. He had suffered with this previously when they tried to introduce a new medication to his routine. Luckily he recognised what was happening and informed me and his PD nurse about it and he was taken off them. To compensate, his usual meds were upped a little bit last summer. What I didn’t learn until last week is that his ICD had come back, albeit in a slightly different form, and developed to the point that it put him in a situation where he thought he was in danger of being blackmailed. Panicking, he decided to “confess his sins” to me, so to speak.
Despite the initial sting, I knew that this was not uncommon and at the core of it, this was a medical issue. I reassured him that it wasn’t his fault, that it was a good thing he told me and got it out in the open, and we agreed on a set of actions which included contacting his PD nurse and setting some restrictions on his devices. The most upsetting thing for me was seeing him so broken emotionally; he said he felt like his personality was trapped in a coffin. It was devastating to see him so upset and to to learn he’d been living with such heavy burdens of shame, guilt and fear.
Having to set up parental controls on his apps and devices was like a bucket of ice cold reality to the face. While I know it’s for his benefit, at his request (and may only be temporary while we get through this latest bout of ICD), it made me realise I can’t run from the label “carer” anymore.
So that’s my story of what brought me to this forum today. Sorry it’s a long post and thank you for reading if you’ve made it this far.
If there is anyone on here who is willing to share their experience caring for someone with YOPD, please reach out as I’d love to connect with someone who is perhaps further along in the journey, particularly in relation to DBS surgery.