A Husband & Wife (with Young Onset Parkinson’s Disease)

5.46am. I have been up since 3am. Not bad though as I slept fairly solidly from sometime around 9.30 last night. I managed a day of DIY yesterday stripping down paint from our front door, not bad progress too. This was after the previous day of fixing the blades on our ride on mower and taking our son to Football training , driving to Canterbury and back in the evening and arriving back at 8.45pm.

All managed due to the wonderful benefits of synthetic dopamine, the wonder drug for Young Onset Parkinson’s Disease & Parkinson’s Disease generally.

But it’s 5.54am now. I really need my first hit. A hit to stop the feeling in my legs that is building intensely. An intense feeling of not being able to keep still whilst I write this in bed. An intense feeling of not being able to keep concentrating and keep writing this. The speed slowing in my typing and the inability to think of anything else but the growing agitation in my legs. The stiffening in my muscles will grow, my right arm will go dead, my right hand will not be able to work well enough to stir the tea in my mug in a neat fluid circle and trap that tea bag to the side , squeezing its last blast of flavour from it before sliding it up the side of the mug with the spoon to deftly remove it. I will struggle with this and to bring it upstairs without spilling it, concentrating on walking up the stairs and on the tea takes effort. I once gave it no second thought. I never needed to concentrate to do that! Then when I do stop writing this and get out of bed to make that tea. I will probably find it an effort to start movement, to initiate it. My brain will start the engine butt there will be a stutter and nothing will happen. I will fire the starter again and will have to focus hard , a big physical effort to get going. Mind over matter to move, to go downstairs and start that kettle. It may hurt, it may be physically painful. My foot might cramp, their may be intense heavy legs or tightening in my calves. My back may hurt, that might be from my back problem or may be the tightening in my middle back muscles that pulls me towards a curve. It might be one making the other worse but it will needed stretching out and sometime before I can get on with the day. It may be alleviated all day or it may be debilitating and make it hard to play that kick about with my son. It may make me an old man today. I don’t feel down or grumpy yet….I have had a good sleep but 3am will take its toll at some point.

It’s 6.14am , 14 minutes late for my drugs, my hit of Sinemet to stop that crescendo in my legs from driving me insane, And to start my motor running and get me through another day.

It’s 2am , you are awake. Your mind is racing. You fell asleep around 9.30pm too. In your room with our son. You were knackered from the day looking after him , doing chores and dinner but plotting , planning and driving us forward. Your mind is racing, work and interviews, another job one way or another. Why can’t you retire too? Bills and mortgage to pay! Awake thinking about our son, how to help him with school, set him up for his future, then there is me too. Holidays to plan, extension to manage, must remember this and that. Your own health to remember too. You’ll have back ache and a stiff neck to deal with, perhaps another trapped nerve. Hormones all changing as a woman to cope with too. What will the day be like, what do we have to do, will it be hard or easy on you. Will your son and husband be a joy or difficult to manage today. What will you be too? Planning and lists to manage and get ready for the coming week ahead.

It’s 6.41am , I crept back to my room, you were back asleep I was glad to see, I will wait a while longer before making the tea. I will also remember to thank you for all you do in supporting me and our family. I will also remember , that you too suffer with this thing , this wretched disease which I dread and fear what is too come.