Parkinson’s Waits for nightfall.

Most are fortunate to go to bed at night, snuggle under the covers and gently drift off to sleep. I used to take a good night’s sleep for granted, but not anymore! We’re lucky if we get 2 or 3 consecutive hours of sleep. You wouldn’t believe what goes on in our bedroom at night! No, I’m not talking about that. I’m talking about the painful dystonia which haunts my nights. Through trial and error, I’ve found the best position for me, is to be flat on my back with my arms straight down by my sides, or laid across my chest, resembling an Egyptian mummy. I don’t have many options since I can’t lay on my stomach due to the PEG tube that connects me to the Duodopa pump. This tube disturbingly dangles freely out of a small hole approximately 8cm above my navel. For some reason I can’t breathe if sleeping on my right side, nor can I sleep on my left side as this puts painful pressure on the long piece of tube in my small intestines. Are you getting the picture? I dread getting into bed at night for it’s not comfortable and certainly not restful.

I am detached from the pump at 10pm, so this is when the fun often starts. I say “fun”, but be rest assured, Parkinson night time antics are far from fun. My poor sleep deprived husband often ends up massaging the cramped muscles, which can be anywhere from curling toes, thighs, calves, to shoulders and neck, or if I’m really lucky, they can all cramp up at the same time!

My right arm often shoots up into the air for no apparent reason, as if possessed or got a mind of its own. It’s incredibly painful as my arm violently pulls my whole body and sometimes my shoulder is black and blue from the amount of deep muscle massage needed to get my arm down.

My breathing becomes labored and I can’t swallow, which is very unpleasant not to mention, a little scary. If my torso goes into spasm, it feels like a Boa Constrictor has wrapped its body around my chest and unable to massage the muscles surrounding the heart and lungs, the only thing I can do is to get out of bed, stand up and do some of my exercises. I go up on my toes, walking on the spot, stretching and moving my body, generally trying to distract and confuse the hell out of Parkinson’s. This agony can go on for half an hour, two hours or more.

When the muscles finally calm down and Parkinson’s has had its fill of torturing me for the night, I slump back into bed exhausted. Dawn is approaching and a new day is here, and so i get to battle Parkinson's again with all its unpredictable tricks.

Hold Still

I was having an X-Ray and the technician said to me “Hold still.” I did my best to stop wriggling and shaking, but it wasn’t good enough to produce a clear X-Ray. The technician had to start again and re-positioned me, repeating loudly in case I was hard of hearing (which I am not), “Hold still” while he quickly disappeared behind the protective booth. Try as I might, I could not stop moving. The technician, rather irritated, repeated the performance once more.

Third time lucky, I thought to myself, but I moved just as he was taking the X-ray. By now, he was running out of patience and muttering under his breath, said, “What’s wrong with this idiot?” “I am not an idiot, I have Parkinson’s!” I replied indignantly, furious with his lack of empathy. If anyone was an idiot, it was the technician, but of course, my good manners refrained me from saying this out loud. He stopped in his tracks and stood still. Slowly turning around, he looked me in the face for the first time since I had entered the room and apologized.

He had seen ‘Gaucher disease’ and the instructions of what needed to be X-rayed on the form I’d given him. It was written quite clearly a little further down the page, that I also suffer from Parkinson’s, but he had not bothered to read everything. If he’d had the decency to look at me, he would have realised I have Parkinson’s.

You’ll be pleased to know that for the fourth X-Ray, I held my breath and concentrated hard on not moving. Success at last and I was able to leave the X-Ray department.

Years ago, one would have to wait a considerable time for the X-Ray, which would be inside a large brown envelope. Today it’s much easier, as X-Rays along with a written report, go straight into the hospital’s computer system. By the time I got back upstairs to the ward, the doctor had already seen my X-Ray and read the report. How times have changed.

Never give up hope

Each day I wake up to hear the birds chirping away in the garden, announcing the night is over and it’s a new day. One of our neighbours parks his truck in the street, and the familiar sound of the engine is very distinct. Like clockwork, every morning I hear him start up his truck and off to work he goes. You could set your watch by his departure. Gradually the street comes alive as families send their children off to school and their parents leave for work. Everyone is so busy, they barely have time to breathe.

Whilst this hub of activity goes on around me, my life is slowing down, and I find myself moving from the slow lane onto the hard shoulder, and feel like a spectator of sorts, watching life speed by in the fast lane. There are so many things I cannot do anymore, therefore I try to concentrate on the things I can do, but the list is getting worryingly shorter as time passes by. Living with a degenerative disease, nothing stays the same for very long.

Living with Parkinson’s disease is like living with a ruthless thief, who stealthily steals a little more of my life each day. It doesn’t help to grieve for the loss but accepting and coming to terms with my ever-changing situation is not easy. I try to keep positive, and having support from family and friends, well let’s just say, I couldn’t get by without them, especially my amazing husband who is also my caregiver.

Before I was diagnosed with Parkinson’s, I must admit, I knew very little about this and wish with all my heart that I was still blissfully ignorant of this rotten disease. We all have hopes and dreams for the future, but I never envisaged my life turning out this way. I guess no one does. All I can do, is make the best of a bad situation, stay cheerful, maintain a sense of humour and never give up hope.

Added complications

You wouldn’t eat a roast beef sandwich smothered with hot custard, or cheese cake topped with tomato ketchup; they simply don’t go together. Having Gaucher disease with Parkinson’s is much the same – they are a terrible combination. If you are wondering where I was last Friday, I was flat on my back once again and put out of action having a herniated disk. The last time this happened was only about a month ago.  

The sharp nerve pain from my lower back that radiated down my leg became excruciating as Parkinson’s did its best to exacerbate the situation. Dystonia was pulling me this way and that and I writhed in agony – not a pretty sight I can assure you. Apart from painkillers there’s not much one can do, other than attempt to lay still. Well Parkinson’s was not about to cooperate any time soon. I needed this added complication like a hole in the head!