Duodopa Pump

After my three nights spent in hospital, I was thrilled to be considered a good candidate for “Duodopa” - a Parkinson’s treatment that I had only recently become aware of. During my short hospital stay, the trial run proved how a patient can benefit, substantially improving one’s quality of life.

Three weeks later, I returned to the hospital and had a permanent “Peg line” surgically inserted. The Hospital were very good, and the surgeon told us the operation went well and considered minor surgery, I was allowed home the same day.

The following day, needless to say I felt pretty rough, but this was to be expected.  A nurse came to our house to show my husband how to change the dressing and explained how to look after the Peg Line.

So, I am now sporting a “Peg Line” which is attached to a pump, who has become my new best friend! It never leaves my side, and we go everywhere together. I was given several different vests, pouches and bags so that I have a variety of options. It does restrict one’s clothing a little. Although the pump weighs only half a kilo, you’d be surprised how heavy it becomes when you’ve been wearing it since 05:00 and only at 22:00 when I go to bed at night, am I detached from the pump.

I hope the manufacturers are working on a lighter weight pump. There is an amount of maintenance involved with flushing through the tubes at night before detaching one ‘self from the pump. Once a week, instead of using regular tap water, believe it or not, we were advised using regular Coco cola to flush through the tubes.

The pump runs on two regular AA batteries, so we had to get a stock of these in, as the batteries last exactly one week. Also 20 ml syringes are required for flushing the tubes. 
Whilst in hospital for the three nights, my husband was taught how to use the pump, and once at home I became comfortable with working it. Although I have to admit, at 05:00, I am not able to manage by myself.

Without the Duodopa and its pump, I seriously doubt I would have made it to my daughter’s wedding. Duodopa enabled me to walk down the aisle with my husband and daughter, who was a vision of beauty in an elegant long white bridal gown. The smiles of pure joy on the newlywed’s faces was simply precious as they danced the night away. My handsome husband dressed in his new suit, was smiling from ear to ear the entire evening.

Duodopa Pump Brings Hope!

Duodopa treatment is not necessarily suitable for every Parkinson’s patient. A full examination and consultation must be done to ascertain if you are a candidate for Duodopa.

I’ve found not all hospitals have a “Movement Disorder Clinic” and not all clinics offer “Duodopa”, a relatively new medication which is a therapy for patients who are in an advanced stage of Parkinson's disease, with severe motor fluctuations (on and off), when conventional oral therapy is no longer effective. The portable pump delivers Levodopa – carbidopa in the form of an intestinal gel, through a small tube that connects directly into the small intestine. The medication is given throughout the day, which allows a constant exact amount of medication to be administered and thereby decreasing the Parkinson's symptoms.

Before I underwent surgery to put in place a peg line, I was invited for a three-night stay in the Neurological ward, where I had a trial run to ensure I was a good candidate. The Duodopa nurse gave me instructions for my trial run with the Duodopa pump and told me to bring with good walking shoes and my walker!!!! Walking shoes and my walker? The nurse certainly sounded confident. This had to be a good sign, right?

Sure enough, once attached to the Duodopa Pump there was no stopping me. I grabbed my walker and husband, and we went for a walk. We left the hospital grounds and a little further along the street there was a small shopping mall. We found an ice-cream shop and decided to stop for some mandatory ice-cream. After sitting there about twenty minutes, we decided to make our way back. I very cautiously got up, wondering if I’d be able to walk. It was an undisputable YES. I had walked further that one day than I had in months.

Pay It Forward

I have never been good at shopping for clothes, so this was going to be a real challenge. I needed help from someone who is good at making impossible things happen. My sister-in-law decided to start with a reconnaissance mission to find the shop with the largest selection of possible dresses to save me the leg work. The following day, she was having coffee with a good friend and the forthcoming wedding along with my “Mission Impossible” of finding a suitable dress that would not self-destruct in 15 seconds, came up in conversation!
     

It so happened her friend had a dress hanging in her closet that likely she would never wear again. A year ago, as mother of the groom, she had bought a beautiful dress for her son’s wedding. Delighted to be of help, she happily gave me the dress. Despite the two of us being different shapes and sizes, not to mention height, the dress magically fitted me surprisingly well, and just needed shortening and a couple of minor alterations. The colour, royal blue (my favorite colour) the style flattering and the fabric very forgiving should I spill anything.

When strange things happen out of the blue, things you cannot explain; is the universe trying to tell you something or do you try to rationalize it as simply a string of weird coincidences? About twenty years ago I made a shawl from royal blue chiffon, and painstakingly sewn sequins and bugle beads (also in royal blue) in a swirling pattern each end of the shawl. I had given this to a dear friend, who had kept it wrapped in tissue paper in pristine condition all these years, only to find herself giving it back to me as it went perfectly with the dress.

It’s amazing the transformation that takes place when a professional does your hair and makeup. There appeared to be several “Fairy Godmothers” hard at work ensuring this Cinderella would go to the ball. Looking at my reflection in the mirror, I could hardly believe my eyes. I have never felt so glamorous in my life. A BIG THANK YOU to all those who made this happen.

                                                      

At a wedding, the spotlight, as it should be, is undoubtedly on the bride, and it is her special day to shine. Both mothers of the bride and groom are expected to be dressed up to the nines, not to outshine the bride, but subtle enough, setting them apart from the other guests. This ultimately ends in women buying dresses special enough to meet the criteria which unfortunately means she’ll more than likely never wear it again. Just imagine how many of these beautiful gowns are hanging in wardrobes, sadly never to be worn again.

I suddenly had an epiphany, an idea that could turn into a great venture, along the premise of the film “Pay it Forward”. After scouring the Internet, it didn’t take me long to find I wasn’t the only person to come up with the same bright idea. There are in fact many out there, selling, swapping and donating their special dresses they got to wear but once. Whenever I have a good idea, it always seems that someone else has already had the same thought!

My Goal Kept Me Going

I could easily have given up. It would have taken very little to throw in the towel and call it a day. But I didn’t – I’m a fighter and I wasn’t about to allow Parkinson’s to steal me away from my husband and the pleasure of being at our daughter’s wedding. We have one child and I was determined to walk with my husband by her side down the aisle. The wedding had been planned, invitations sent, hall and catering booked, and as the date drew closer, making it through each day and night was getting harder and harder. There were three months till the big day, and although this sounds like a short time, in my condition, it felt like an eternity. It took all my energy and strength as I struggled and fought constantly staying totally focused on my goal.

Being “mother of the bride” it was obvious I would need a new dress, and not just any dress. It would have to be elegant enough befitting the mother of the bride. How on earth in such poor shape was I going to manage dress shopping, going from shop to shop, expending huge amounts of precious energy undressing and trying on dresses? Just the thought of searching for the perfect dress threw me into a spin. This is where men most definitely have the upper hand. Let’s face it, a suit is a suit, no matter what colour, or fabric. I think you’d be hard pushed to find someone saying, “Haven’t we seen him wearing that suit before?”

I have to say, my husband did look very handsome on the day and I humbly confess, he is a far better shopper than me, and knows exactly what he wants. He went shopping and in just one hour had purchased a lovely new grey suit, a tie and shoes. I am envious of his ability to effortlessly shop for clothes.

My darling daughter had clearly known for some time what she wanted, has excellent judgement and a very good eye for spotting what will suit her. Like most mothers, I had dreamt one day she and I would go together to choose her wedding gown, but I was seriously ill and much to my disappointment, I was unable to join her. On the big day she got ready at our house in her old bedroom and as she serenely glided down the stairs, my eyes welled up with tears of pride at the little girl who had blossomed into this amazing woman who stood before me. Looking beautiful in a full length, white, elegant dress, she was about to begin a new chapter in her life.

My Greatest Fear

 We all have our strengths and weaknesses, foibles and fears. I don’t like being in confined spaces such as an MRI machine, and you’d never catch me paragliding or bungee jumping. Snakes and slugs come high up on my list, but without doubt my greatest fear of all is being unable to communicate.

Thanks to Parkinson’s I was hospitalised several times during 2017. Trapped in a body that no longer responds to Parkinson medication, unable to swallow or speak, no doctor or nurse could possibly ascertain if my cognitive skills remained intact. Add into the equation that any anxiety or stress greatly exacerbate the disease – and hey presto, my greatest fear of not being able to communicate in any form was realised.

As the doctors made their morning rounds, I lay there in my hospital bed like some distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above my head.
  

The morning doctor’s rounds were not at the same time each day and not knowing when they would appear made it very difficult for my husband to be there with me. Over the years, my husband has taken an extraordinary amount of time off work to care for me. Due to the severity of the “off” I was experiencing, I couldn’t even use my mobile phone to call a family member or friend to step in as an advocate to speak on my behalf.

Later in the day when I was “on”, I wrote down all the questions I had wanted to ask the doctor, along with pertinent details he didn’t know. Being a girl guide at heart, with just a touch of OCD for good measure, I am very methodical and super organized. I do my best to be prepared for every eventuality. The following morning, I was again “off” as the doctors made their rounds, but I managed to avert my eyes away from the captivating ceiling tile and locked eyes with the doctors’ and he saw my notepad clutched tightly in my grasp. He read my questions and comments out loud to his entourage. Through this limited form of communication, at least it was now established that I had all my marbles!

If you ever find yourself in the situation of being unable to communicate, make sure you have an advocate - someone to speak on your behalf who has your best interests at heart. I can’t stress enough how important this is.