April Parkinson's awareness month
This month is Parkinson's awareness month, with many activities on the calendar bringing light to this mysterious condition I have along with thousands of others around the world..
A friend confided in me...
I try to be a good friend, having an open and honest communication channel to those in my close circle. I am always around for a conversation no matter how confronting it may be. We need to talk. Its very important for our mental health that we have someone that we can confide in and who can listen, no matter how embarrassed or self-conscious we feel about what we are dealing with. I was told recently that a very close friend has been dealing with alcoholism. Tough situation to deal with and recognise, and even braver to talk through this with me. Going through this is going to be challenging for my friend. I will support and encourage them when at times there will be temptation and despair. Struggling with alcohol is a battle no doubt. It is driven by other challenges that peopIe have in their life and can quickly spiral out of hand. I have said this before - one thing I can do is be a good listener and be there when needed, what ever form that takes. It is super important that we keep a look out and "ask are you OK" especially in times where difficult decisions are being made or need to be made. Life can throw up unexpected challenges and events that can change everything. Its a rollercoaster of emotions that sometimes you just have to ride out, or help someone to ride out.
Kia Kaha my friend. You have a mountain to climb but have taken the first steps on the path.
And the same to all those struggling with a private battle, be it with alcohol, gambling, substance abuse, depression or whatever other demon you have in your life. Don't be afraid to reach out for help. There will always be a friend who can listen and help get perspective
PD and Dementia Research.
I am pleased to have officially started on a research project with UQ - this time as a researcher not a participant. More details will follow in the next few months but this is an exciting process to be involved with and should result in some tools to be used by clinicians and people living with Parkinson's Dementia. This will be a long commitment as both an in kind and some paid work as part of the grant which was agreed. As I have mentioned before there is a clear correlation and increased risk of going on to develop Dementia if you have Parkinson's so is clearly something I want to be involved in.
Becoming an Aussie.
I need to rekindle my process and see where this is at. I just need to commit time to deal with the processing of this before I get too much older
Breaking News: The Australian government is changing the rules for the better to make it simpler to apply for citizenship. From 1 July 2023, kiwis who have lived in NZ for 4 years or more will no longer have to apply for and gain permanent residency first - which was the expensive and time consuming part. I will make sure i have my ducks in a row for 1 July application.
More help with Parkinson's awareness and advocacy.
YOPD catch up this month was an overview of what Nurse Navigators can do especially those who specialise in movement disorders. Ryan Gee from the Sunshine Coast explained this is in a great and informative presentation followed up by a general chit chat. #thisisparkinsons . Again some very open and honest discussion from the group.
Walking.
On going through rain, and shine. Still haven't missed a day even when I was unusually sick and could hardly get off the couch for three days.. Now passed 1044 in a row. #committed
I will be participating in various Parkinson's month walks including the Really BIG Walk in some form or another. I did attend the official launch at Parliament house - and nearly flaked out. I suddenly became very dizzy and had to sit down, breaking out in a cold sweat. Not sure what that was about, it may have been a precursor to my three day completely lacking in energy. Maybe it was simply exhaustion - I took a covid test and it wasn't Covid - who knows.
On the 16 April I went on a challenging walk. As part of the Really Big Walk fundraiser led by Joe and Vince Kelly, I walked the last Saturday with these two amazing blokes and also George Mellick the President of Parkinson's Queensland . How long was it - well was to be about 24km according to Joe . Was I up for that? Sure, I walked 30 last year along the beach.
So it turns out that the trail from Lake Manchester to the Gap was in fact 26.38km according to my strava. And 955m elevation - that's like 211 flights of stairs. I have to say the last couple of km was hard going and seemed to be on a permanent incline. I was very glad to get to my exit point. I am not sure i could have walked much further that day. 6h 5m was not bad time wise though.
I did spend the rest of the day on the couch watching TV.
Next day was up and walking again albeit more slowly than normal. And off to the final leg and welcome home for the Kellys. They had walked 596 km in from Taroom in two weeks. Made my 26 km look somewhat insignificant. However I did get a shout out as some type of inspiration for never complaining about the walk and never giving up. Reality is I cant give up. This is a forever disease. Ah well could be worse so I will count my blessings and keep walking while I can.
As the last event on the calendar of Parkinson's Awareness month things to do, I headed to the Gold Coast to walk in the "Lap for Parkinson's" being hosted by Parkinson's Queensland in association with Home Instead and some other local entities directly connected to the Parkinson's community on the Gold Coast.
The event was a good opportunity to connect with other known and unknown folk who are involved with Parkinson's in some way, be that a person living with Parkinson's, a spouse, a carer, a relative, a support person, or one of the many folk who have some direct or indirect connection to Parkinson's. I enjoyed walking and talking to many of the people whom I had met last year, and setting a target for some of the walkers this year. In the end I walked 13km or 32 laps which was a little more than the 26 from last year. I was spurred along by a very competitive young lady who was in grade 9 and whose mother worked in a role associated with Parkinson's. Emma had set a target for herself to beat the record from last year set by my walk, and I ended up walking and talking to her about her goals as we circled the track. She was happy to talk and walk alongside me in the last few rounds before she had to go, leaving the door open for me to steal a "win" with an extra lap. Sorry Emma, I had to do it.... its not just that I am just a little bit competitive too but the thing is that Parkinson's doesn't stop so I cant either. I know I will not win that race in the end but I have to prove to myself that at least for that moment in time I can be in control. As the saying goes, I may have won the battle, but winning the war is a long way off.
Medication/ Health.
No Change to the schedule or positive impact. Scheduled for a mole check this next couple of weeks.
I may need to investigate the Voice training options for Parkinson's as I sense I am getting softer spoken. Also need to look into some exercises for my hands - I feel that typing is going to be more challenging going forward if I don't start to address that soon.
Pilates.
Pilates is still on Wednesday evenings with a new physio taking the class as Sakura leaving for offshore adventure. Will see how this one goes. I am definitely able to balance better and now have my own balance board to practice on at home I can manage that for extended times.
PFU Boxing and more.
Each week there is something new for the warmup. Good to see some of the old regulars reappearing too.
Social Outings.
Lots on the calendar, regular "Thirst-day" drinks with the lads are always good. With the relocation of the office coinciding with Ballistic closing due to administration we have been looking for a suitable new drinking hole. About 4:30 each week we have been heading off in search of a beer, still haven't settled on a new regular spot yet so stay tuned.
Work.
Head down and focus on delivery with more work coming on stream from sometimes unexpected places. Still trying to catch up and complete some existing projects. Many new projects in the pipeline and continuing to clean up existing projects.
Land Sailing.
Waiting for each Sunday to see what's happening at the track.... and have had a few other events happening. Weather conditions mean no sailing. bah. Maybe the cooler months will be better for sailing.
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!