It was in fact a long pier 500m
It was in fact a long pier 500m

Parkinson's Diagnosis Year one anniversary
This month I am reaching a goal .... one year since official diagnosis of Parkinson's on 29 May

I am surprised how the year has gone past so fast with lots of ups and downs including covid, my diagnosis, my sister being diagnosed with cancer and eventually losing that battle, and my brother in law also having cancer diagnosed and treated. Annus Horribilus for the family.

2021-05-29

A big day sort of....

Today marks exactly one year since I was diagnosed with Parkinson's Disease. A great time to reflect on what that meant, how my life has adjusted and what it means for me going forward.

So as I stated on the home page of this website I am not after sympathy, merely awareness of this life long, currently incurable disease I now know I have to deal with. I reflect on the changes in my day to day activities and my focus on doing good things to support and advocate for others while I can. I reflect on my cheer team lead by my loving partner Glenda, my incredibly supportive and loving family and my very supportive friends and colleagues many of whom I am sure I bore to death with new found information on Parkinson's and what I have been up to. To all of you, I appreciate the interest that you take in my situation and activities, and also for those who look out for information on Parkinson's and send that to me.

I reflect on the pathway to my diagnosis and count my lucky stars that is was a very short process. A conversation over coffee with my brother Eric in September 2019, an off the cuff comment to my GP John Cadden about my mild trembling hand in March 2020 resulting in my only "test" -"write your signature and a sentence here so I can see your handwriting ",  and then the subsequent referral to my Neuro Specialist Prof Peter Silburn on  29 May 2020 who basically confirmed my condition within 10-15 minutes. From start to finish that was it. Lucky. Right people, no question. Very skilled pickup by John Caddon. 

Along the way to my first anniversary I have done some things that would not have ever been on my radar.

Walking - every day, and I mean every day I walk at least 4 km. Have not missed a day since I began the Sunday after being diagnosed. ( Friday diagnosis, Saturday research, Sunday started walking). Stretched myself on occasion such as walking from Kangaroo point over the Story Bridge to the Gardens Point then along the river to Auchenflower. And then there was the MS Moonlight Walk, and the Parkinson's Really Big Walk where I set a goal of 100 km and blew that away with 165 km including a big day where I walked 24.6 km from Mapleton to Yandina on the Sunshine Coast. Raised approximately $3600 along the way thanks to the generosity of friends, family, colleagues and clients. Thank you all. 

Website and blog - decided to be proactive and get some awareness going on. Very therapeutic actually. I can review how I am going over the long term and allow folk to tag along without having to ask. 

Pilates - never having set foot in a gym except accidently this was a big change for me. My cheer leader Glenda arranged a consultation with a local Physio and that resulted in a regular weekly spot doing clinical Pilates work. Definitely worth going as I feel core strength improvements, knowing that this has such long term benefits. Justine carefully adds more challenges as I appear to master assigned tasks.

Boxing - every Wednesday I head over to PCYC at Laing Park / Suncorp Stadium to a Parkinson's non contact boxing class set up by Parkinson's Fighters United. The session is run by Deb and I very much enjoy this hit out each week.

Peer support - as my involvement in many groups increased I have taken more of an advocacy stance and make a real effort to pay it forward while I can. This includes involvement with Parkinson's Queensland Young Onset group, Consumer and Community Involvement Group (CCIG) with UQ Centre for Clinical Research, and Parkinson's Fighters United committee. 

All of these things are in addition to what is an ongoing busy work / life schedule, but I just have to fit these in as a priority.

I have much respect for all the folk with Parkinson's and their partners, their carers and their families who have to deal with more severe symptoms than those that I have. I am very fortunate to be at the mild end of the scale. I am very aware of the responsibility that I now have to advocate and do what I can to promote awareness in the broader community. I thank all those who have been in this position before me and have advocated, created organisations, support platforms and activities to support those with this disease. To those who have lost loved ones who had Parkinson's but still are involved in some form of advocacy or support in the Parkinson's community, I thank you.

So, one year on. The great reset. Its amazing how a "cattle prodder to the butt" like a Parkinson's diagnosis can alter the course of your life. What will the coming year bring? Who knows. More challenges, probably. More advocacy, definitely. More reflection, absolutely. Get on and live life, you never quite know what's around the corner.   

#thisisparkinsons

 

Interstate travel.
Due to my partner Glenda's son Matthew graduating from Navy basic training we ventured south to the Mornington Peninsula for a few days. First flight and interstate trip since Sept 2019. Crazy. Walked the beach and surrounds of Rye, went to explore breweries, wineries, chocolate, cheese places etc. Took in some of the wonderful historic sites and wandered around the Sorrento, Portsea, Mornington townships. Wandered around a beautiful rose garden and had fish n chips in the park. Very relaxing other than the driving duties all over the place to drop and pick up folk. Congratulations Matthew - off on a lifetime adventure, you've made a great choice and long may you continue to thrive and enjoy. 

While on our trip we happened to connect up with a book signing / fundraising session being held by Samuel Johnson - Love Your Sister. With both Glenda and I each having lost a sister to cancer we listened to what Sam had to say, picked up some merchandise and had a very lovely chat to the man himself. Very humble individual who is using his profile to do good on behalf of others. Awesome. I am sending each of my siblings a key ring as a reminder of our beautiful sisters.

 

love your sister

 

More help with Parkinson's awareness and advocacy.
Parkinson's and related research, meetings and groups are becoming more a part of my existence these days, and am making an effort to spread awareness. 

I have added responsibility for running the PQI YOPD (Parkinson's Queensland Inc Young Onset Parkinson's Disease) Peer Support meeting. Our first meeting was an overview of DBS (Deep Brain Stimulation) by neuro specialist  Dr Alex Lehn. He presented clearly and succinctly and explained the procedure, the risks, the benefits without sugar coating it. Was a bit of an eye opener for many. We then had the benefit of one of the group who was a recent recipient of the treatment explain the process from his view point. Together a very interesting evening. We are scheduled to hold these each month first Tuesday, 7pm and have a few topics lined up already.    

I have been enrolled in a short course as part of PQI - Peer support to make sure that I have the tools to assist and navigate as adopted facilitator of the Young Onset Peer Group. Five weeks every Thursday from 1-4. Will be good for me I am sure.

Walking.
Now over 341 days in a row without missing a morning walk. Only 24 more and it will be a full year.

Medication.
No Change to the schedule or positive impact.

2021-05-12 Got my first round of COVID vax - Astra Zenica. 

Research.
Still working to make the research links page a bit more useful, it was a simple list to start with but expanding to make better use of the info in it.

Pilates.
Pilates on Wednesday... amazing how I can form a positive habit so quickly. Still going and still enjoying. Some new tricks and exercises to do every week. My physio Justine keep threatening new exercises - as I master some of the existing and improvements I am ready for more. I think. 

PFU Boxing.
On Wednesdays I do non contact boxing at the PCYC Laing Park 11:30 - 12:30. I am one of the young ones. Really enjoying it especially without the need for masks so we can really do more boxing. Nice having the shower at work and feel awesome afterwards. Deb is awesome, doing a Parkinson's specific session. 

Had an initial meeting to join the PFU committee on 2021-05-21 . Think there is a bit that I can do to assist.

Social Outings.
Some upcoming events in the pipeline, and some great events past.

Always look forward to "Early Friday" / "Thirsty Thursday" beers with Neil, Don and Greg  plus a few other random friends.

Work.
Head down and focus on delivery. Catch up is the order of the day.

Land Sailing.
Waiting for each Sunday to see what's happening at the track.... and have had a few other events happening.

NZ Bubble.
Waiting for a suitable time to travel - aiming to coordinate with my sister Rachael to see if we can be there at the same time. At this stage looks like some time after 12th June - 21st or there abouts.

 

 

 

Otherwise for me its still so far so good.
Same Same. 

And that is all for just now - keep a lookout for the next post and thanks for tagging along!