Family in simpler times
Family in simpler times

The end is nigh - well of 2020 anyway.
In this update some thoughts about the end of 2020.

Its been a funny old year with one thing and another. Some life moments have popped up in amongst the hubbub of covid, lockdowns and travel bans.

Six month ago I was diagnosed. It has altered my perspective and changed my approach to some things. I have become more aware of health issues that folk have, especially the less well known and the less well funded. I have made it my mission to promote Parkinson's awareness in any way I can, while I can. Pay it forward. I have met - virtually - some lovely folk through the various channels such as facebook /chat groups and on Monday night, for the first time I did actually get to meet some of my new "peers". 

My Big Sister - the real tragedy of international travel bans.
I have missed travelling this year - especially so with not being able to see my big sister who has been having a rough time with a persistent pesky pancreatic cancer. How simple life was when we could just book a ticket, hop on a plane and a bit over three hours later be there.

In the past couple of days her condition has deteriorated dramatically and news that she may not make it to the end of the week has hit me very hard. I have had lots of tears and there will be more to flow yet. She has been an important influence in my life. She looked after my Dad when he was so sick, rallying and wrangling my siblings and I to assist and for that I am eternally grateful. She is such a caring soul and in no way deserves this relentless cancer. I am going to miss her a lot, her smile, her laugh and her quirks, her advice and the occasional rescue. And hugs. Robertson's are huggers.  I love you my sister. I wish I could just wave a magic wand and fix this curse. You have so much more life to live, but its been stolen away from you.    

Update 2020-12-11 :

Today mid afternoon NZ time,  my brother called and told me the unwelcome but inevitable sad news - our sister was gone. Be at peace Phiona. I will miss you always. 

Update 2020-12-13 :

My family have been rallying around each other and working through the logistics of a ceremony that will be reflective of our sister / mother / daughter / partner. As always in these times there is a lot of emotion and wishes to accommodate. From a distance this is even harder - with my sister in Sydney, my brother in the UK and myself in Brisbane, even the simplest of tasks like getting in the same conversation can be testing. We have all well adapted to using tech to help and quickly got some common file drive space to put up a selection of images and start anecdotes etc. Always there are stars and my two daughters both have played a role in helping smooth things along. I am very grateful to my daughter Fran who earlier last week quickly changed her travel plans and got down to support her Gran even before we had the final devastating news. And my Emily who once again has done a special and well regarded job of layout on the service sheet. She worked away quietly while other aspects of the service where being discussed. Nicolas is likely to be involved in the day as well, and has already been up to help and support his Gran. It is such a proud feeling to know that when its required my children step up and help. Love all of them very much, especially at a time where I am feeling a little bit inadequate not being there in Dunedin to be support in person.    

Update 2020-12-14 :

My remote siblings and I will each be contributing via a prerecorded video. I prepared what I wanted to say and then sat down in front of the video camera and pushed record. Harder than it sounded, emotions tripping me up countless times, with  out-takes a plenty. Finally made it through to the end. I am not sure being able to restart is an advantage. I think that in person, with one run through live would actually be easier. You could look out and see the friendly faces of loved ones to help settle the nerves. 

News today that the travel bubble to New Zealand will be in place by March. Too late for our family, but welcome news anyway. If another family doesn't have to go through the added heartache in a similar situation then thats a good thing. Indeed the health needs of the many need to be paramount, and as hard as it is for our family right now, I understand the need for caution when so many lives are at stake. I am part of the Team of 5 Million, I have to play my role as much as that hurts right now.  

Update 2020-12-16 :

Today sadly I said goodbye to my eldest sister. A beautiful service that thanks to technology I was able to watch online. It was not possible to get there in person, but at least I was able to watch and listen, along with my partner Glenda who was there to hold my hand and give me a hug after.  I could see how large the gathering was and it showed just how highly she was regarded. Be at peace my beautiful sister, be at peace.   

 

 

 

Video.
While the world was in shutdown, I was asked to participate in an interview about my Parkinson's by Parkinson's Queensland. I said yes immediately and was recorded at my office. This is now published on you tube. Hopefully it will help someone in future to understand or deal with their diagnosis. Watch it here 

Help with Parkinson's awareness.
This week - the day after meeting all the lovely folk at the PFU xmas dinner, I was asked to assist with some filming / acting to be used as part of a promotional video for Parkinson's Research Projects being run by University of Queensland. It was a fun few hours with a serious message. Look out for my starring role as I am sent head first into the MRI machine - no stunt double required. If it helps to get one more person to sign up to participate in a research projects relating to Parkinson's then it is worth doing. 

  

Walking.
Now over 188 days in a row without missing a morning walk. Its quite a milestone - half a year, one day at a time. I have worn my walking shoe heels down, might need to replace them shortly. Even in the heavy rain this month, a walking I did go. Looked like a drowned rat, but maintained my determination to not miss a day, no matter what.

Still planning a Parkinson's Shirt to get awareness out in the field while I walk. Have been in contact with the marketing folk at Parkinson's Queensland to see if they have artwork and/ or any rules around use of the Parkinson's Tulip logo. As soon as I can get some outline of the rules I will be on to it. Thinking about a slogan that will be generally useful to wear any time - two I have in mind - " I live with Parkinson's " or " I walk for Parkinson's "    

Medication.
No Change to the schedule or positive impact.

I have been keeping a bit of a check on my seemingly twitchy feet.....sitting watching tv or relaxing I have observed that I seem to be moving my toes a lot. Have to consciously stop doing this. And a cramp like stiffness on the top of one foot comes and goes. Noting here so I can track back to when I first noticed these things. Also seemed to have the first instance of involuntary leg movement at night, nothing serious but I apparently kicked my partner one night (not hard or violent). Just noting for the record.

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.
More new activities - I now have additional balancing activities and lunges. I am slowly improving my crouch for some activities - its a challenge for sure.

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.

Garden.
Plants sweltering in the heat.

Work.
Even busier than before - now comes the work tsunami. Head down and focus on delivery. Not planning time off over Christmas and New Year. Catch up is the order of the day.

Updates to the website.
Entered this blog in a local awards just for a bit of geeky fun. Actually won the blog category. Will post the trophy when I get it :)

Land Sailing.
Finally found a suitable land yacht in my price bracket so am now the proud owner of a limited edition Team NZ Americas Cup Blokart. Went for a sail last weekend and had a blast. More to follow.

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.