If you can’t swallow…

Although I am on the Duodopa pump, I still have some “off” times, but they are nowhere near as often or as bad as those before I was put on the Duodopa treatment. One of the first things I notice when I’m about to go “off” is that I can’t swallow. If you can’t swallow, you probably can’t eat! I was beginning to miss my evening meal altogether and wake the next morning with strong hunger pains. I was ravenous, and my weight began to drop. I knew I had to get some nourishment in me.

This is where soup comes to the rescue. The summer heat has not died down yet and it’s absurd I’m eating bowls of hot soup. This is yet another change in our lives, admittedly a small one. We have always eaten our main meal at night, but now I have to take Parkinson’s into account and am trying to have a substantial meal at lunch time and eat a lighter supper in the evening of soup or soft foods that are easy to swallow.

My friend’s husband always says jokingly “eat desert first”, but now often I have a scoop of vanilla ice-cream, and this cold treat slides down with little effort, and then I find I can manage to swallow thick hot soup. I endeavour to put as many different vegetables and pulses in the soup which is liquidized.

I may have to start drinking Ensure again, which contains all the vitamins and calories a person needs daily. Ensure comes in two flavours: vanilla or chocolate. I’ve also found that sucking on ice cubes helps when I can’t swallow anything else. Just like a car needs petrol to function, the human body is fueled by eating nourishing food.

Let's Dance!

I love to watch ballroom dancing, and as a child growing up in the 60’s many parents sent their children to ballroom dancing lessons. Perhaps this was to combat the change in society and music with the arrival of the Beatles and all that followed in the 60’s. It was an era of great change. But I digress, so back to Tchaikovsky, watching the dancing couples gracefully swirl around the dance floor, whether a waltz, the fox trot, the quick step, all held a charm and fascinated me.

Unfortunately, my husband doesn’t share my enthusiasm, claiming he has two left feet. Well, just between you and me, I’ve seen his feet which are perfectly formed and to make his dislike of dancing even more unfounded, his mother and her two brothers won several gold medals in ballroom dancing many years ago. So not only is his theory of having two left feet absurd, he more than likely has inherited the ability to dance and it’s in his DNA.

There is strong evidence that dancing is good for you, a form of enjoyable exercise, whilst interacting with other couples who are in the same situation - what could be better? There are specially designed ballroom dancing classes for those with Parkinson’s and I’m willing to give it a go.

I’m fighting this devil of a disease with everything I’ve got. Not wanting to sound negative, but realistically I’d be surprised if I’ll manage to participate in dance classes, but as they say, nothing ventured, nothing gained! So, throwing caution into the wind, I’m hoping my husband reads my blog this morning and gets this far from subtle hint!

Home safe and sound

My husband has returned safe and sound from his week away. Being my primary caregiver, the last two years have taken their toll. I want to say a huge THANK YOU to all those who took care of me during this long overdue break. Until you step into his shoes and get a clear hellish look at Parkinson’s disease up close, you cannot begin to imagine the raw cruelty, festering like an open wound, gradually that eats away both the sufferer and caregiver. A caregiver must have a break from the tyranny that rules endlessly, to recharge their internal batteries, from the ongoing emotional and physical demands, otherwise they will eventually burn out and not be able to function.

My family and friends rallied around and a rota system put in place ensuring that I wasn’t alone at any given time. The nights were particularly hard as I’m disconnected from the Duodopa pump, and this is when the painful muscle spasms start and can go on for hours. Who needs an expensive membership to a gym when you've got Parkinson's to give you a personal workout at home? If I’m really unlucky – these antics can continue the entire night and only when I’m totally exhausted and its time to reconnect to the pump at 05:00 do I find relief. Every patient is different, and experiences are not the same. It’s a matter of trial and error. Other patients on the Duodopa Pump may not suffer during the night as I do.

I am so grateful to have the caring support around me, and realise it may have been a shock for them to see what my husband and I have to endure, and how very important it was for him to have a break from it all.