Anne Hathaway

Contacting someone famous can be difficult if not impossible, so I thought I’d try through my blog. Nothing ventured – nothing gained. Being a fan of Anne Hathaway I have probably seen everything she’s appeared in and have watched her career grow over the years. 

Seeing the film “Love & Other Drugs” (which was made a few years ago) particularly moved me for obvious reasons. I could relate to the character Anne Hathaway portrays, having Young Onset Parkinson’s, diagnosed at age 44. 

I wanted to let Anne know how well she portrayed the character. I see this film not merely as entertaining but bringing greater awareness of this terrible disease to the general public who mostly think it’s an “old people’s” disease, where as in the film, Anne Hathaway clearly brings home the message that Parkinson’s can strike at a young age. 

Like the character in the film, I also feel ridden with guilt as I need my husband more than he needs me. There were many raw truths that hit home, and it was hard to swallow some of the scenarios on screen, that I live daily. 

Thank you, Anne, for taking on this role which was far from glamorous. I’m sorry you didn't win an award for your marvelous performance, but I can assure you, that you won a place in many hearts from those who suffer from or take care of someone with Parkinson. Bringing this subject matter into the limelight and onto the big screen makes you a winner, and wish you continued success with your career.

Clear the decks.

Our house is beginning to look like a hospital rather than a regular home. There is often a traffic jam around the kitchen island. At a quick glance, one couldn’t fail to notice the presence of a wheelchair, a walker (Zimmer frame) a pair of crutches, and various pill boxes, i.v. stands, an assortment of medical apparel and emergency numbers along with prescriptions on the fridge door.

One might wonder why we have non-matching chairs in the lounge, and should you happen to spend an evening in our household, you’ll likely participate in playing Parkinson’s musical chairs. You’ve never heard of Parkinson’s musical chairs?  Well let me explain. Similar to the children’s party game, only there is no music and there,has to be at least one person present, who suffers from Parkinson’s disease. I spend most evenings moving from chair to chair, alas in vein, hoping to find a comfortable position.

We have tried to find an armchair that is comfortable for me and being short, it’s not easy finding a chair with small dimensions. We thought we’d found one, and bought it, but once at home, I found it wasn’t as comfortable as I had thought in the shop. We couldn’t return it, and so this was the first of a succession of chairs in our quest for the perfect chair. 

    

Sitting in a chair on display in a shop has likely been sat on by hundreds of customers and can feel completely different from the brand new one delivered straight from the manufacturer to your house wrapped in its protective plastic. After a further unsuccessful purchase of another chair, I began to realise, it’s not the chair that’s the problem, but yours truly. It’s as if I don’t feel comfortable in my body. So our quest for a comfortable chair has come to an end, and each evening I continue to move from chair to chair.                                

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.

Battle Weary

As Parkinson’s runs its course, I am forced into battle day and night. I’ve been fighting this relentless disease for 11 years, but the last three years have been particularly hard and are starting to take their toll on my husband and myself. In the early stages of Parkinson’s, I managed to cope, but as time passed, I was experiencing more “off” than “on” times and had no quality of life.

It was on 5^th November 2017, that I changed from oral medications to Duodopa which comes in a jell form administered by a pump directly into the small intestine. Despite Duodopa being a life changer – it is not a cure and doesn’t stop Parkinson’s from getting worse. However, it has given me better quality of life and has bought me time.

My caregiver is my devoted husband, and I cannot think of a harder job. Together we fight Parkinson’s but are becoming battle weary. My husband has taken a long overdue break and gone away for one week to re-charge his internal batteries from a physical and emotional sense. My daughter and her husband, along with family and friends together have me covered for the week, taking care of me and ensuring I’m not alone.

Yes, I miss him terribly, but I know how much he needs a rest and to take time out from our incredibly difficult situation. I want to thank all those who made this possible – we are extremely grateful. This break also allows him to attend the wedding of our dear friend’s daughter. I’m sorry I couldn’t join in the celebrations, but I’ll be there in spirit and wish the young couple congratulations.

As Time Goes By

They say a watched kettle never boils. The same could be said when unable to fall asleep in bed at night. I keep glancing at the clock and watch the minutes slowly pass, one by one. I can hear the loud ticking of our carriage clock in the lounge that chimes on the hour, and once every half an hour.

How I wish I had a little of Tinkerbell’s fairy dust, for I’d sprinkle some over me, think happy thoughts and fly out into the night. I’m not too sure where Neverland is, but there are no ticking clocks and time stands still, Peter Pan and the lost boys have escaped the cruel reality of this world. Surely this has to be one place that Parkinson’s does not exist.

The stronger I fight Parkinson’s, the stronger this lousy disease seems to retaliate. I’m having a daily tug of war with an unworthy opponent.