Marc
In 2001 aged 41 I noticed my little finger began to bounce, it would stop when I flexed my hand or was asleep. I went to a doctor (my usual one was not on) who sent me to a neurologist, it could be a familiar tremor come back in 6 months. Let’s do an MRI on your brain to be safe (my mum has multiple sclerosis and my father died of a brain tumour as I say we are a neurological disaster). 6 months later I had self diagnosed (via the internet) I was sure I had Parkinsons Disease (PD or Parky as I call it.). The doctor after some physical tests walking and reflex observation agreed.
One of my first reactions was to try and get fit (something I probably never have done well is exercise) so lots of swimming as Parky got worse I found swimming in circles or into others rather than a straight line not very helpful. Now the occasional walking the dog is a little easier.
Early days of my diagnosis Parky was little more than a discomfort that seemed easily overcome. I could not understand what all the fuss was about. However it was clear I was not the same I as I used to be. I used to pride myself as a person with a quick mind but suddenly it seemed like my mind was in a cloud, one person who had not seen me for some time thought I had suffered a stroke. For me my Deep Brain Stimulation (DBS) operation helped me emerge from the cloud. I can see much clearer now that the constant movement disorders put enormous strain on your general well being. The medication seemed to work well and it was a minor inconvenience (a small dosage of madopar was the first medication).
As I have learnt more about the disease through the internet and Parkinsons Victoria I am surprised how little is known about it in the community and hence not surprising and regrettable is the lack of government funding and support.
I began to get involved in the Young at Parkinsons (YAP) support group in around 2006 I first went there to get info on whether I could ride or not. Someone was there who had a Harley. I sought him out and asked if he still rode a motorbike. He looked at me as if it was an absurd question and said no. I saw people who I thought were friendly but much more advanced than I. I swore I would not be like them I was different, how wrong I was. Since that time the group has become important to me as I can sit with other people around my age and know that they know something of what I feel and struggle with every day. I remember a pub in Richmond at one meeting where we told the Barman not to shake the martinis but just give them to us. Other commitments such as work and family have not allowed me to be involved as I would like but thanks to enthusiasm of one lady (Karyn you’re a star) it still meets and is worth a go if you’re considering it. Even though I only went on the Friday night the recent conference was a great time.
Relationally a disease like Parky puts enormous strain on relationships, financial social and intimacy concerns are still very real issues for me. The danger of Parky is that it can be like a jealous lover it never quite lets you go, it is very dependent on you and can cause you to be very self absorbed. My wife has had to put up with this for a long time and too her credit she helps me to focus on others needs not just my own. When I turned 50 I was unemployed and 13 weeks before had had a DBS operation, my wife went to a special effort for that night and heaps of friends and family turned up. Thanks Paula your fantastic.
I have found it extremely important for self worth to not giving up being with and helping others whether it be continuing to be involved in my bike club (God’s Squad Christian Motorcycle Club) even though I ride very little these days or helping in a community meal that feeds the poor with my local church. Last year my church asked me to manage the Christmas gift giving to those who have less in the community. I believe it was this simple 6 half day periods of volunteer work that was the beginning for me of as I say getting my mojo back or enthusiasm for life.
Soon after this I applied for a position leading a team of 6 who help people with disabilities get jobs. A year before this I was Managing Director of a welfare organisation. It was my dream job. Just before my DBS op they tried to sack me and later I accepted with much regret their offer of redundancy. While I still feel what happened to me was a result of inexperience and Parky where I could with only sacrificing my health fight what I thought was a great injustice. I was also not prepared to damage the very organisation I loved. I do miss the cut and thrust of working for that organisation. I have moved on now but it took me a year to do so. I am very thankful to who I now work for who have given me the chance knowing I have Parky.
Travel is a matter for me as the same for work, being very careful to manage my medication properly and consulting with my neurologist and his practice nurse. Thanks Richard and Mary for your encouragement, wisdom and knowledge.
Since my diagnosis I have
- Successfully managed an overseas trip (with my wife’s help) including being patted down in every airport as the magnetic fields can cause the stimulator to turn off.
- Battled and now have under control several addictions including gambling. As a result of taking Cabassar for PD.
- Obtained and lost my dream job
- Re-entered the workforce helping those with Disabilities find jobs
- Had a deep brain stimulation operation (my mum paid for this not covered by Medicare, thanks Mum)
- Fought off a golden staph infection
- Ridden a motorbike again after giving riding up and selling my motorbike
- Continued to raise 3 boys as best I could
- Continued my religious journey in attempting to follow Jesus Christ
- Stayed with my partner despite the struggles of Parky
- Learnt to cope with the flapping about of dyskinesia
10 years later and 3 neurologists and a DBS operation I have now made Parky my friend rather than my enemy. This does not mean we are on talking terms all time. However I know now that unless a miracle occurs (which we all hope for) I must learn to share my life with Parky.
This article is too short and perhaps not enough has been said about the dark times but thankfully I have been able since the DBS op’ to talk about my experiences to a few people considering a DBS operation, of course a deeply personal decision that only you can make.
Parky needs to be listened to argued with and embraced and like all relationships it if mistreated will become a difficult thing to handle. I believe as a bloke it’s only in this 10th year of Parky that I have with the aid of a DBS started to treat Parky well and get the medication balance right.
Parky is a bit like religion sex and politics extremely personal. I do not apologise for talking about any or all of these in this article as this is who I am.