I think it took a few years to sink in. – maybe three of four. Even now I think it’s not happening; it’s not there if I don’t see it. It’s a disease that strangely reminded me of a monster in a Dr Who episode – one you only see if you look into the very corner of your eye. Parkinson’s is like that – it’s always there, doing its own thing, sort of plotting.
There are many facets to living with a Parkie. There have been so many occasions of Parkinson’s being funny – my favourite was probably when an unexpected tremor interrupted Dad putting parmesan cheese on his pasta – it looked like Christmas. Shaken, not stirred became our motto. There have been moments of silence too though, when you know something has changed and that this isn’t just a bad day, it’s got worse and it’s not going to get better again. Watching Dad come to terms with what he can and can’t do is a rollercoaster – it takes away his favourite pastimes and hobbies, one at a time, cruelly fighting him for dominance of his own body and independence.
I thought I was lucky, in some ways, as I went to University a few years after Dad was diagnosed. I didn’t have to see this disease take his favourite things. By second year I realised this was worse though. Dad and I would meet every few weeks, and for the first few years he would hide his symptoms well and it would feel like nothing was changing, but a couple of years later it was too hard to hide the shuffle-walk, tremors and slow dexterity.
Parkinson’s changes a person. The physical changes are obvious, but under that there are mind-altering drugs doing their best to subdue symptoms and provide momentary relief. I’m grateful he’s so kind in nature that he can’t go crazy, but the drugs do have interesting effects. Bizarre dreams of being chased by talking cheese singing excerpts from Wagner operas, 3am desires to organise the fridge, and for some reason Dad’s begun taking a lot of selfies with sunglasses on. That’s probably one of the more harmless changes though.
Getting slower changes your priorities. It’s like someone’s made the clock move faster – putting your watch on and when you finally get the clasp in you look and four minutes have passed. How did that happen?! I remember getting frustrated when Dad would type slowly, only realising afterwards how selfish I was being – why should I rush him, or type for him, taking away one of the things he can still do just because he’s not going as quickly as I want? The time we spend together now often doesn’t have an agenda, we just go with whatever we’re feeling like in no hurry.
I think the biggest fear as a child of someone with Parkinson’s isn’t that they won’t be there to celebrate big days and achievements with you, – I know he will be – but feeling like there’s nothing you can do to help. Sure, I can cut up his food or pack the shopping or tidy up, but what if he falls and I’m not there? What if he forgets to take his meds and he freezes? What if he gets shoved back and forth at a train station when commuters mistake him for being drunk? It’s easy to get upset when you hear of yet another way someone’s misunderstood or jumped to conclusions.
Telling people that the shaking man is your Dad and he has Parkinson’s brings a lot of responses. People put the focus on me, how brave I’m being. I don’t think I’ve been brave for a minute through this journey. I’m not the one taking a dozen tablets a day to subdue a monster inside me. Dad’s strength is unbelievable. I go home and cry when I see this cruel disease take something else from him.
But, I remind myself, Parkinson’s is not a death sentence. My Dad is strong. He is so strong. Not just in a he-can-open-jars-for-me way, but in his soul, and his spirit. I know this isn’t just him though – it’s the support network Parkies have with each other. They lift each other up, listen to accounts of bad days and won’t take this disease lying down. There is no way Parkinson’s can win against this army; this army of brilliant, shining, intelligent and shaking people have something to fight for, and they’re not finished yet.
- GRAND RAPIDS, Mich. (February 22, 2016)—A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease. The trial is the latest to be launched as part of the Linked Clinical Trials (LCT) initiative,…
- Progress in Parkinson’s, both in terms of its management and improvements to its treatment, is extremely slow. There have been advances in the understanding of Parkinson’s and there is the very real possibility of therapies with the capacity to modify the course of the condition in the pipeline. However, these…
- Our second 'Rallying' Meeting took place on Wednesday 30th September during the Grand Challenges in Parkinson's Disease event in Grand Rapids, Michigan. Wednesday, September 30 10:30 am: Tom Isaacs (Co-founder and president, The Cure Parkinson’s Trust): Rallying to the Challenge II 10:45 am: Progress from Rallying to the Challenge I (series of…