Sunday, November 6, 2011

Counting our Blessings : Living with Parkinson's Disease

This is not really a genealogy blog about ancestors; It is about the life my husband and I have lived over the past years and will serve as a story for generations to come. 

A few months ago, I was approached by Parkinson's Victoria, wanting to know if I would be willing to be interviewed for an article, describing life as a carer for someone who has had PD for 25 years. The article was used as part of Parkinson's Victoria's Christmas Appeal, 2011. This morning, without notice, I received the actual copy, sent to all Parkinson's Victoria members. It was a slight shock, to see your words on such a personal matter in print.


I was interviewed by a wonderful lady named Indira Kennedy. A half hour interview turned into a two hour chat. I described the problems we have faced, warts and all, and she came up with a wonderfully sensitive take on the difficulties we face on a daily basis. I have added some details to round out the story in italicized type.
Here is how she worked a terrible tale into a blessed life:

Counting Our Blessings

I may not have the man I married but I do have much to be grateful for


Living with Parkinson’s takes courage and strength, dedication and patience. It can also take the things you love - if you let it.

My husband Paul has lived with this challenging illness for over 25 years. He was only 30 years old when he was diagnosed, but probably had developed the disease a few years prior to diagnosis. It was so early in life and such early days in understanding how to manage it and live well with an ‘older person’s disease’.

I met Paul as a father of two girls. I have three boys. My own health is challenging, having a mental illness and rheumatoid arthritis as well as back problems,  and sometimes I wonder who is looking after whom! Between us, as a second marriage for both, you could say we had a lot on our plate.

At first Parkinson’s wasn't so noticeable. Paul had a lot of coping skills and hid the symptoms well. As a scientist he knows everything there is to know about the physiology of disease. Paul was a senior research scientist at CSIRO for 22 years, specializing in Molecular Biology. He also won many awards including the prestigious "Chairman's Medal". He loves history and immersed himself in the thousands of books lining our home; Seriously! He has an amazing sense of humour and a wonderful way with language. But at an emotional level, it’s another thing altogether.

You could say Paul doesn't want to know, to face up to what has gradually taken so much of him. But what I have learned is that Paul hates confrontations, always looks for peace and doesn’t allow his condition to rob him of his good nature.
At Cross Country, Benalla

For example, Paul was fabulous with the children when they were young. He took them to Little Athletics every Saturday during summer, and cross country during winter, despite his condition. When he could no longer drive, he took a taxi. He quietly soldiered on.

As for me, I have learned to express the emotion for both of us. I know what it is to go through the stages of grief, having lost both my parents around the same time Paul's health began to worsen, to feel robbed of the spritely man I married, to have our children struggle to confront the reality of a dad who was ill.

Many times I have fallen into total exasperation, burdened by the dependency on me. At times it was like looking after my father in the last months of his life - Paul had become an "old man". Sometimes it feels like I’m flying blind dealing with how Paul is feeling or what he needs to be comfortable. I’ve come home to find him frozen in muscle spasms on the floor, or in the full throes of tremors. I had to give up work, in 2008 just as he did, aged 49 two years previously, to try to live better with the progression of this demanding disease. 

My saving grace was contacting Parkinson’s Victoria when I just didn’t know how to go on. Their useful tips about simple things like shirts with press studs, tracksuits with no elastic in the ankles, slip on shoes, all gave me a new view of daily life. Getting dressed and doing up buttons on a shirt or tying shoelaces was beginning to take half an hour for each task, so I was dressing him, an embarrassing proposition for a man in his prime!

But more importantly, I learned what side effects to expect from the many drugs Paul needed to control his spasms, to know what stages to expect as the disease took its path, got referrals to other services, and I learnt what our options were. One of those options was a change in his drug regime which  included a 24 hour infusion pump of the dopamine agonist of Apomine, changed daily, until there was nowhere to put the butterfly needle as he was so skinny, and finally, Deep Brain Stimulation in May of 2010. Note: The solutions that suited Paul are not for everyone. Please talk to your neurologist!
Infusion pump and needle
Even more so, I was grateful to have a time to cry and let go when no-one else could truly understand. I’ve needed to speakup and have someone support us. Parkinson’s Victoria got us on the right track when another track wasn’t working. They referred us to the right agencies who arranged for easy access to the bathroom and install hand rails, and find respite care. They helped us to bring the whole emotional experience into one that became, ‘This is how it goes.’ I learned to accept and keep fighting on.

Charging across a Southern US battle field

We travelled to America for three months, driving 2500 miles, mainly looking at Civil war sites in the Southern states - one of his passions while it was possible, and had the trip of a lifetime together. And we can still holiday in places where we are still able to meet Paul’s needs.

These days Paul snoozes a lot during the day, and seems slower. But his mind is just as sharpand his love is just as powerful.

Thankfully, Parkinson's will not shorten Paul’s life - he can expect to live as long as any averageAustralian male. But Parkinson’s will continue to challenge us, and sometimesin unpleasant ways. We will still need Parkinson’s Victoria to help us, every step of the way.

There is no doubt Parkinson's has changed Paul a lot. I might not have the man I married, but I do have the man who in his own way keeps on fighting along side me, in the best way he knows how. And we constantly count our blessings.

Everyone has their own story, and their own journey. Parkinson’s Victoria remains dedicated to taking those steps with us all.

Please give generously to this appeal. We know, as most likely you do, the incredible difference this service makes to so many lives.

Thank you and please have a safe and joyful festive season.

Linda